I've been terrible at updating lately, but OIT world has been reasonably uneventful. I'm still a ball of nerves more often than not, but such is my personality. At Sean's last appointment two weeks ago, he went from 50mg of peanut in liquid form to 50mg of peanut in flour form. The flour is in capsules that we open and sprinkle in some applesauce and feed him twice daily. The dose was technically the same, but Dr. M. says they do that intentionally to be extra safe due to possible variability when switching from one dosage form to the other. I appreciated the extra time at 50mg because he didn't seem to tolerate it the best. He did okay, but he did seem to have more random redness, red ears, extra mucus, etc. He has this pesky cough that will not go away. It's stressing me out to no end. If I'm not convinced he's developing asthma, I'm convinced that all three children have pertussis. I am a nervous ball of nerves.
And on that note, tomorrow we increase to 100mg! That is officially 1/6 of one peanut. It is an amount large enough for me to visualize, and I simply can not believe it. If we continue at this current pace, he could potentially eat a full peanut around the beginning of the new year. I am just astounded. I might have to pull out my good camera to take a picture of him in the office for the first time he holds a real peanut in his mouth. I wonder if the speedlite would be too much to bring along?
This last comment is entirely off-topic, but since I've eluded to my own health concerns, I figured I would post an update on that as well. I'm still awaiting the results of many, many tests from several weeks back when I had 29 vials of blood drawn and also a pretty intensive urine test where I had to collect samples of my first-morning urine three days in a row and mail them away. I feel it's sort of a long-shot at this point, as my symptoms are highly typical of multiple sclerosis and as a 30-year-old white woman, I fit that demographic perfectly. But many of those tests were for Lyme disease and other tick-borne illnesses. In April, a few weeks before these symptoms began, I found a tick on myself when we were visiting a wooded area of land we were considering buying. Actually, there were a lot of ticks there and we visited the place on multiple occasions. However, I've undergone pretty extensive antibiotic treatment, and have only seen minimal improvements. I'm going a week from today for a repeat of my MRIs of my brain and cervical spine, hopefully with contrast this time. The ones I had in June without contrast came back normal. I also had my doctor put in a referral with a different neurologist who specializes in MS. I figure if there is a very good possibility that MS is my future, I want someone on the cutting edge of research who can manage my condition and help me live as healthy of a life as possible. I want nothing more than for this to all just go away and have been a bad nightmare, but since it has been going on for over six months now, I'm pretty certain it's not just going to magically resolve itself. I need answers and I need a plan. I will take any well-wishes you can send my way.
Wednesday, November 13, 2013
Thursday, October 17, 2013
The Last Couple Weeks
I haven't updated in the past couple weeks, mostly because we've been busy and OIT has been relatively uneventful (which is a great thing).
At Sean's dose increase two weeks ago, he went up to 25mg of peanut flour, which is equal to 10.25mg of peanut protein. He handled it amazingly well, and really had no adverse reactions to that dose. However, he has been sick pretty much nonstop for the last month or so, most likely due to being in preschool and out of the house around other kids regularly for the first time ever. For a few weeks, we were treating it as a virus because there was no sign that it was anything else. But that weekend, he woke up in the middle of the night crying, vomiting, and with a pretty high fever. Before I realized that he had the fever, I was afraid the vomiting was related to his dose, even though it had been several hours before.
After we realized he had the fever, I went into panic mode a bit because I wanted to get him cooled down. Shortly after his second birthday, he had a febrile seizure which left me traumatized for many months. I'm still a freak about fevers to this day. It is such a horrible, helpless, terrifying experience to watch your child have a seizure. His eyes rolled back, his lips turned blue, and he was just jerking. Thankfully, febrile seizures do not cause any sort of lasting harm, but after watching it happen, you could not convince me otherwise. I was distraught at the notion that no child could ever be normal again after experiencing something like that. Thankfully, he was back to my sweet, playful boy before the doctors ever saw him in the ER. I had severe anxiety for months and months to come, and I still resort to whatever methods I can to get the kids cooled down quickly when they have a fever. So I gave him some meds and put him in a lukewarm bath to cool him off, then brought him downstairs.
He had been complaining that his eye hurt, and I thought maybe the high fever was just causing him to have a headache. But then I saw that he was actually touching the spot just below his eye and it was really puffy. He had a sinus infection! It was Sunday, and we decided to have my husband's parents come over to help because I had to work, and they would take the kids all to a walk-in clinic at Walgreens. They were only able to see children over 18 months, so they couldn't see Nolan, but the older two kids were treated for ear infections (and Sean's sinus infection). They took amoxicillin for a week, and Dr. M. had us omit his dose for that full day, then Monday we gave him half doses, and then starting on Tuesday, we gave him his full dose. Thank goodness, there was no reaction to any of those doses!
Today, he had another dose increase. It was double his previous dose, which always makes me a nervous wreck. Sometimes, his dose only increases by about 50% and he seems to tolerate those dose increases better. Doubling the dose is a huge change for his little system to tolerate. I wonder if they've ever considered increasing in smaller increments. It would drag out the length of treatment, which some people may not like, but I'd rather take my time and go slowly. I was a little discouraged today that he didn't tolerate his dose the best. He started producing a lot more mucus in his nose and throat, his eyes got watery and he was rubbing them (I assume they itched a bit) and so they got a little puffy also. Seeing those reactions makes me a nervous wreck, but Dr. M. is calm and reassuring. He says these reactions are pretty common, and that I may continue to see them for the first few days of each dose. I was glad he said that, as it did give me reassurance, but I'm certain I'll still be a basket case in the morning if he has similar reactions before school. We do our dose increases every other Thursday, and I'm a nervous wreck on the following Friday when he goes to preschool and I go to work.
We are now on the final liquid peanut dose, which is 50mg of peanut flour, equivalent to 20.5mg of peanut protein. The next time we increase his dose, we will begin peanut flour which comes in capsule form and is opened and sprinkled into applesauce, pudding, etc. It will be nice not to have to worry about the liquid anymore. We have ended up with two new insulated lunch bags because we keep forgetting to take ours to the appointments to transport the peanut liquid home (it stays refrigerated). Also, I was putting away the groceries one day and knocked the glass bottle off the shelf in the fridge. By some miracle, I managed to catch it. Had it broken, we would have been making the 8-hour round trip to Dr. M's office to get some more. So it will be nice to move on to capsules to eliminate some of that worry. Dr. M. said today that there are five doses of the peanut flour, and then we move on to real peanuts! We go for dose increases every two weeks, so after two weeks of his current dose and 10 weeks of the flour doses, he will eat one full peanut twice daily. If we don't have any setbacks, he could eat a real whole peanut in three months! The thought of it is simply mind-blowing! I hope everyday for no reactions, no setbacks, and smooth sailing.
Tonight, I am nervous that he will react to his newly doubled dose, and I am just anxiously hoping for the best. I joke that this is my biweekly three-day panic attack, but unfortunately, it really is no joke. I hope that this gets easier as we get further into the treatment, but I'm not convinced that it will.
At Sean's dose increase two weeks ago, he went up to 25mg of peanut flour, which is equal to 10.25mg of peanut protein. He handled it amazingly well, and really had no adverse reactions to that dose. However, he has been sick pretty much nonstop for the last month or so, most likely due to being in preschool and out of the house around other kids regularly for the first time ever. For a few weeks, we were treating it as a virus because there was no sign that it was anything else. But that weekend, he woke up in the middle of the night crying, vomiting, and with a pretty high fever. Before I realized that he had the fever, I was afraid the vomiting was related to his dose, even though it had been several hours before.
After we realized he had the fever, I went into panic mode a bit because I wanted to get him cooled down. Shortly after his second birthday, he had a febrile seizure which left me traumatized for many months. I'm still a freak about fevers to this day. It is such a horrible, helpless, terrifying experience to watch your child have a seizure. His eyes rolled back, his lips turned blue, and he was just jerking. Thankfully, febrile seizures do not cause any sort of lasting harm, but after watching it happen, you could not convince me otherwise. I was distraught at the notion that no child could ever be normal again after experiencing something like that. Thankfully, he was back to my sweet, playful boy before the doctors ever saw him in the ER. I had severe anxiety for months and months to come, and I still resort to whatever methods I can to get the kids cooled down quickly when they have a fever. So I gave him some meds and put him in a lukewarm bath to cool him off, then brought him downstairs.
He had been complaining that his eye hurt, and I thought maybe the high fever was just causing him to have a headache. But then I saw that he was actually touching the spot just below his eye and it was really puffy. He had a sinus infection! It was Sunday, and we decided to have my husband's parents come over to help because I had to work, and they would take the kids all to a walk-in clinic at Walgreens. They were only able to see children over 18 months, so they couldn't see Nolan, but the older two kids were treated for ear infections (and Sean's sinus infection). They took amoxicillin for a week, and Dr. M. had us omit his dose for that full day, then Monday we gave him half doses, and then starting on Tuesday, we gave him his full dose. Thank goodness, there was no reaction to any of those doses!
Today, he had another dose increase. It was double his previous dose, which always makes me a nervous wreck. Sometimes, his dose only increases by about 50% and he seems to tolerate those dose increases better. Doubling the dose is a huge change for his little system to tolerate. I wonder if they've ever considered increasing in smaller increments. It would drag out the length of treatment, which some people may not like, but I'd rather take my time and go slowly. I was a little discouraged today that he didn't tolerate his dose the best. He started producing a lot more mucus in his nose and throat, his eyes got watery and he was rubbing them (I assume they itched a bit) and so they got a little puffy also. Seeing those reactions makes me a nervous wreck, but Dr. M. is calm and reassuring. He says these reactions are pretty common, and that I may continue to see them for the first few days of each dose. I was glad he said that, as it did give me reassurance, but I'm certain I'll still be a basket case in the morning if he has similar reactions before school. We do our dose increases every other Thursday, and I'm a nervous wreck on the following Friday when he goes to preschool and I go to work.
We are now on the final liquid peanut dose, which is 50mg of peanut flour, equivalent to 20.5mg of peanut protein. The next time we increase his dose, we will begin peanut flour which comes in capsule form and is opened and sprinkled into applesauce, pudding, etc. It will be nice not to have to worry about the liquid anymore. We have ended up with two new insulated lunch bags because we keep forgetting to take ours to the appointments to transport the peanut liquid home (it stays refrigerated). Also, I was putting away the groceries one day and knocked the glass bottle off the shelf in the fridge. By some miracle, I managed to catch it. Had it broken, we would have been making the 8-hour round trip to Dr. M's office to get some more. So it will be nice to move on to capsules to eliminate some of that worry. Dr. M. said today that there are five doses of the peanut flour, and then we move on to real peanuts! We go for dose increases every two weeks, so after two weeks of his current dose and 10 weeks of the flour doses, he will eat one full peanut twice daily. If we don't have any setbacks, he could eat a real whole peanut in three months! The thought of it is simply mind-blowing! I hope everyday for no reactions, no setbacks, and smooth sailing.
Tonight, I am nervous that he will react to his newly doubled dose, and I am just anxiously hoping for the best. I joke that this is my biweekly three-day panic attack, but unfortunately, it really is no joke. I hope that this gets easier as we get further into the treatment, but I'm not convinced that it will.
Friday, September 20, 2013
Emotional Rollercoaster
This entire experience is a constant up and down of emotions. One minute, I'm feeling pretty good because we've had a successful dose increase followed by two uneventful weeks of home dosing. The next minute, I'm stressed, scared, and worried about my child. By the time we got home from his dose increase yesterday, his upper lip was very red and maybe a tad puffy, his nose was running profusely, and his chest sounded congested. I couldn't tell if it was from the virus he has had for the past week, an allergic reaction, or possibly some combination of the two. All I knew was that dose time was looming ahead of us, and I was terrified to do it.
So again, I have to sing the praises of the amazing Dr. M. I hated to bother him, but I decided to text him and explain that, and he immediately responded that I should give him Benadryl, put him to bed, and wait until morning to dose him again. I was immediately relieved. There is no way I could have slept last night with the anxiety it was all causing me. I hope Dr. M. knows how much his simple texts can put a worried mama's mind at ease. He really is a gift to the medical field and to people with allergies and asthma.
We got up at 6am this morning to get Sean's dose in him a good two hours before his school day started. We've been doing it everyday, so it is part of the routine now. One of the first things he said this morning was, "It's so good to feel good again!" I asked him if he felt sick the night before, and he told me yes, but I couldn't get him to elaborate. Then we dosed him, and I watched him begin to resemble the way he looked the night before. Red lip, watery eyes, runny nose, and just looking sickly. You could just tell he didn't feel well. Some of it was from being tired, some of it was from being sick, but I know that some of it was from ingesting his allergen. Just in case, I gave him a dose of Benadryl before he went off to preschool.
I called about 45 minutes into Sean's school day to check on him, and his teacher told me he was doing just fine. Thank goodness, because I literally could not focus on my work until I knew he was okay. My coworkers probably hated me because when I get anxious, I struggle to stay on one task and bounce around from one thing to the next, forget what I'm doing in the middle of a task, and simply can not concentrate. I'm sure I was slowing down the work flow until I got that confirmation that he wasn't in danger. It's amazing the power our babies can have over us, and it's equally depressing the power these allergies can have over us. But not forever, I hope! This morning when I was overly stressed out about it I asked my husband, "Why am I doing this to myself?" His reply was, "It's not what you're doing to yourself. It's what you're doing for him." Those are my words to live by. All of this stress, worry, anxiety, and fear will be worth it in the long run if it affords my son a better quality of life.
So again, I have to sing the praises of the amazing Dr. M. I hated to bother him, but I decided to text him and explain that, and he immediately responded that I should give him Benadryl, put him to bed, and wait until morning to dose him again. I was immediately relieved. There is no way I could have slept last night with the anxiety it was all causing me. I hope Dr. M. knows how much his simple texts can put a worried mama's mind at ease. He really is a gift to the medical field and to people with allergies and asthma.
We got up at 6am this morning to get Sean's dose in him a good two hours before his school day started. We've been doing it everyday, so it is part of the routine now. One of the first things he said this morning was, "It's so good to feel good again!" I asked him if he felt sick the night before, and he told me yes, but I couldn't get him to elaborate. Then we dosed him, and I watched him begin to resemble the way he looked the night before. Red lip, watery eyes, runny nose, and just looking sickly. You could just tell he didn't feel well. Some of it was from being tired, some of it was from being sick, but I know that some of it was from ingesting his allergen. Just in case, I gave him a dose of Benadryl before he went off to preschool.
I called about 45 minutes into Sean's school day to check on him, and his teacher told me he was doing just fine. Thank goodness, because I literally could not focus on my work until I knew he was okay. My coworkers probably hated me because when I get anxious, I struggle to stay on one task and bounce around from one thing to the next, forget what I'm doing in the middle of a task, and simply can not concentrate. I'm sure I was slowing down the work flow until I got that confirmation that he wasn't in danger. It's amazing the power our babies can have over us, and it's equally depressing the power these allergies can have over us. But not forever, I hope! This morning when I was overly stressed out about it I asked my husband, "Why am I doing this to myself?" His reply was, "It's not what you're doing to yourself. It's what you're doing for him." Those are my words to live by. All of this stress, worry, anxiety, and fear will be worth it in the long run if it affords my son a better quality of life.
Thursday, September 19, 2013
No News is Good News
Yes, it has been a while since I last updated, but thankfully, that's because everything went well the past two weeks. (Insert happy dance here!) Last night, we were getting ready for bed and Sean asked me what we were doing the next day. I told him we were getting up very early to go see Dr. M. for a dose increase. And he said, "Mama, that's not all we're going to do tomorrow" very excitedly like he knew a great secret. So I asked him what else, and he whispered enthusiastically, "See Nurse Lety!" He loves her! She gives him his dose, checks his vitals, gives him applesauce and water to go with his dose, and most importantly to Sean, she hangs up the pictures he colors on the wall. He is so proud to see his art on the wall each time we visit!
Today we went for Sean's next dose increase, and his final dosing on "Solution D" which he has taken in increasing amounts since the end of the first day. This dose is 6.15mg of peanut protein, equivalent to 15mg of peanut flour. He did well at the challenge for this dose, but he did get one red ear. I see it frequently and to me, it is clearly related to his allergies and is a sign of reaction. My husband tries to tell me that it's just their red Irish coloring making him more prone to it, and tries to downplay my concerns as "nothing" so it was validating for me to have Dr M. notice it and mention that he sees it very often. He did go on to say that unless other symptoms appear, I do not need to treat it with antihistamines.
I left the office feeling pretty confident and calm, which is a rarity for me on dose increase day. I was feeling good because this dose increase was smaller than some of them. Many of the dose increases are actually doubling the previous dose, and this particular dose increase was only a 50% dose increase, so I felt better about his system not being overwhelmed. He did fine at the challenge, and I was feeling great.
Fast-forward to tonight. When we got home and got him out of the van, I noticed that his top lip was red and maybe even a bit puffy. He is mass-producing snot. Now mind you, he has been sick this past week, and he and his brothers are all snotty beasts. But this seems excessive. And he has a little bit of a cough with it. I know his brother has also had a cough with this current illness, so I'm trying not to worry too much and hope that it's just another symptom of this bug they're fighting. But... I'm a worry-wart. And my baby who just had a dose increase of his allergen is now sounding really congested and is breathing louder than normal. So I'm on the verge of a freak-out, but I'm trying to ignore it. I'm nervous to give our home dose this evening, so I'm putting it off. Wish us luck!
Today we went for Sean's next dose increase, and his final dosing on "Solution D" which he has taken in increasing amounts since the end of the first day. This dose is 6.15mg of peanut protein, equivalent to 15mg of peanut flour. He did well at the challenge for this dose, but he did get one red ear. I see it frequently and to me, it is clearly related to his allergies and is a sign of reaction. My husband tries to tell me that it's just their red Irish coloring making him more prone to it, and tries to downplay my concerns as "nothing" so it was validating for me to have Dr M. notice it and mention that he sees it very often. He did go on to say that unless other symptoms appear, I do not need to treat it with antihistamines.
I left the office feeling pretty confident and calm, which is a rarity for me on dose increase day. I was feeling good because this dose increase was smaller than some of them. Many of the dose increases are actually doubling the previous dose, and this particular dose increase was only a 50% dose increase, so I felt better about his system not being overwhelmed. He did fine at the challenge, and I was feeling great.
Fast-forward to tonight. When we got home and got him out of the van, I noticed that his top lip was red and maybe even a bit puffy. He is mass-producing snot. Now mind you, he has been sick this past week, and he and his brothers are all snotty beasts. But this seems excessive. And he has a little bit of a cough with it. I know his brother has also had a cough with this current illness, so I'm trying not to worry too much and hope that it's just another symptom of this bug they're fighting. But... I'm a worry-wart. And my baby who just had a dose increase of his allergen is now sounding really congested and is breathing louder than normal. So I'm on the verge of a freak-out, but I'm trying to ignore it. I'm nervous to give our home dose this evening, so I'm putting it off. Wish us luck!
Thursday, September 5, 2013
A New Dose (Finally!)
Before I start on today's update, I would like to take a moment to comment on how absolutely amazing Dr. M. is! Sunday night, Sean had an apparent reaction to something and had a rash around his mouth. I texted the picture to Dr. M. who responded immediately that he was in an area without data but that he would look at the picture later that evening and give me his input. He asked how his belly had been doing since his previous reaction where I administered epinephrine, and he responded later that night with his opinion on the rash in my picture. I don't know any other doctors who are so incredibly accessible that they will text with me on a Sunday night on the long Labor Day weekend about my concerns. It just does not happen! This is a man who truly cares about his patients, and I could not be more grateful!
I notice that during this treatment, Sean's ears have been red a lot. My husband thinks it's normal and that it is because he has reddish hair and fair skin. I get nervous that it isn't normal because for one thing it is much more common now that he is on OIT and is exposed to his allergen on a regular basis. I also worry because other allergy moms in my online groups have mentioned that red ears are often the first sign of a reaction in their children. I suppose I will ask Dr. M. his opinion.
As for my appointment, I was meeting with a new doctor about possible Lyme disease. Ugh. I wish I knew what was wrong with me. He's going to treat me with antibiotics as if I have Lyme disease, and gave me orders for around a dozen more tests. None of the tests for Lyme disease are perfect and I just desperately want some answers as to why my body (my nervous system in particular) has declared mutiny against me over the past 4 months. So if you happen to send positive thoughts, prayers, well-wishes, vibes, etc. to Sean for his peanut OIT, please send some for me as well.
Sunday, September 1, 2013
I Hate Uncertainty
Since Sean's incident where I administered the Epipen, he has done well. He took a 3-day course of a steroid, then began daily Zyrtec. There hasn't been any sign of a problem until today. Six to seven hours after his dose of peanut, he had a rash pop up on his face around his mouth and chin. All I have is a poor cell phone picture, but I think you can see it well enough to get the idea. We did have lunch at Panera Bread a couple hours before the rash popped up, which we have done several times in the past without problem. I'm not sure if he may have been exposed to something different this time, or not. He also has been incredibly nasal today. He just sounds like his sinuses are congested, but not really producing mucus. Just to the point that it sounds really stuffy when he tries to breathe through his nose. So I'm not sure if he's just experiencing some extra seasonal allergies or what. I texted the picture to Dr. M., but he was in an area without data service, so he couldn't look at the picture and said he would be able to see it in a few hours. We waited around an hour later than his usual dose time in hopes that Dr. M. would respond with some wisdom, but he didn't respond yet, so we just dosed as normal. It has been about 30 minutes now, and so far, he's doing okay. But last time he had a serious reaction, it was almost two hours after his dose! So of course I won't rest easy for a couple more hours. Why must this entire process be so terribly nerve-wrecking? As of now, we're set to visit Dr. M. on Thursday for his next dose increase. I really hope nothing happens between now and then. We've already been on this dose for nearly a month, thanks to the other reaction. Don't get me wrong, I am in NO hurry to finish the treatment and I want to take our time and go as slowly as possible. It's just discouraging to be having so many problems already. I feel like I need a long, long stretch of time with no reactions to make me feel more confident that this is the best decision for Sean.
Reaction?
Saturday, August 17, 2013
Scared of the Future
Today was Sean's last day of the steroid he was given for his allergic reaction on Wednesday. I've spoken to Dr. M. a few times since that incident, and he thinks it would be best if I started Sean on a daily dose of Zyrtec. I know if he's going to have an anaphylactic reaction, an antihistamine is not going to stop it, but I think I'll feel better about some of the minor to moderate signs of reaction if he has a daily basal level of antihistamine in his system. We started the Zyrtec today, and now as the steroid wears off, I am scared of how he will tolerate his doses. I am scared that he still will not be able to tolerate this dose and that he will continue to have terrifying reactions. I'm scared that he will fail this treatment. It's clear that an incredibly small amount of peanut (5mg peanut flour) can lead to a strong reaction from him. I'm scared of the obstacles that lie ahead for him, whether in OIT or in life without OIT.
We were supposed to visit Dr. M. on August 22nd for the next dose increase, but that is not happening now, and I'm thankful for that. His little body needs time to adjust to reacting to his allergen without the help of a steroid, and he just needs some time to adapt before we increase it again. This puts us at potentially increasing his dose again on September 5th, which just happens to be the day after he starts preschool. He's doing a Monday, Wednesday, Friday half-day preschool, but it's safe to say I will be a nervous wreck the whole time he is in the care of someone else. I would have been a nervous wreck anyway, even without the whole crappy allergy thing, but this just makes it not even enjoyable in the least. I'm supposed to have the normal fears of a mama-bear, while still being able to feel the excitement for all the new things my son will learn, and for the new friends he will make. Instead, I am just living in constant fear that something horrible will happen to him. I desperately hope this gets easier.
We were supposed to visit Dr. M. on August 22nd for the next dose increase, but that is not happening now, and I'm thankful for that. His little body needs time to adjust to reacting to his allergen without the help of a steroid, and he just needs some time to adapt before we increase it again. This puts us at potentially increasing his dose again on September 5th, which just happens to be the day after he starts preschool. He's doing a Monday, Wednesday, Friday half-day preschool, but it's safe to say I will be a nervous wreck the whole time he is in the care of someone else. I would have been a nervous wreck anyway, even without the whole crappy allergy thing, but this just makes it not even enjoyable in the least. I'm supposed to have the normal fears of a mama-bear, while still being able to feel the excitement for all the new things my son will learn, and for the new friends he will make. Instead, I am just living in constant fear that something horrible will happen to him. I desperately hope this gets easier.
Wednesday, August 14, 2013
Really Bad Day...
Today was the first time ever that I gave Sean his Epipen. I'm still in a state of high emotion over the situation, mostly questioning everything I do, hoping desperately that I'm doing the right thing for my child.
Sean had his dose this morning and seemed fine. About an hour and a half or maybe an hour and 45 minutes had passed, and everything seemed normal. Then, he came over to me sort of coughing. It wasn't a big strong cough, but more like he was clearing his throat or his chest or something. He said he was okay, so I thought that maybe he had just choked on his own spit or something. I started paying closer attention to him, but wasn't entirely alarmed yet. But within a minute or so, he started crying pretty hysterically. We couldn't get him to really articulate very well what was wrong with him, but did manage to get out that it was belly-related. My husband wanted me to sit and watch him longer, but I was too scared. I looked at my husband in the eyes and said, "He's having breathing issues and stomach issues. I have to give it to him." And then I did it. I have him an Epipen for the first time. Despite the tremor I now have from this neurological problem I've developed, my hands did not shake. I don't think I've ever done anything with such certainty in my life. After the dose, he went into the bathroom and looked very sick. I asked him if he needed to throw up, and he said yes. He heaved a couple times over the toilet but nothing came out.
After that, we decided to take him to the nearby urgent care for children. We decided against calling an ambulance because the last time we did, they took almost a half an hour to get to our house. The urgent care is just a few minutes down the road, so I quickly loaded our middle son into the van and then got Sean into the van and sat with him while we waited for my husband to bring the baby. In that time, about 10-15 minutes had passed, and Sean was still acting pretty distressed. His skin was pale and had a sick grayish color to it, and he was still acting like something was very, very wrong with his stomach. In the interest of being safe, I went ahead and administered the second dose.
We drove him to the urgent care, only to be told that the urgent care part didn't open until 3pm. I just looked at the woman and said, "You're kidding..." and I ran out the door carrying him. Our pediatrician's office is right across the parking lot from the urgent care, so I ran carrying my 40-pound child there as quickly as possible. Tom had been parking the car with the other two boys and had no clue I did that. The pediatrician's office got us in immediately, checked his vitals, and said he was stable. They told me we needed to go to the ER for several hours of observation, and that they thought he would be good to travel by car. If I wasn't comfortable with that, they would call EMS. I didn't love the idea of taking him ourselves, but I was armed with three more Epipens and the doctors thought he was doing okay, so we did it.
He did okay through the hospital visit. They checked his vitals and watched him until 6 hours after the last dose of epinephrine. He went hours with no symptoms and we were set free. On the way home, he began acting like he was having difficulty breathing. It started with him taking unusually deep breaths, then he began making the coughing noise again, as if he was trying to clear his throat. Then he began to ask for his bucket again, the one we brought with us in case he had to vomit. I began to freak out. I told my husband to turn around because we were near the urgent care (the one we started at, yes they were open this time). We never went in, but it made me feel better just to sit there in the parking lot for a bit. After a few minutes, we headed for home again.
I spoke to Dr. M. and we have a plan for tomorrow. We'll continue Benadryl around the clock for the day and he'll continue his course of steroids. For the morning dose, he said we could do either the full dose or a half dose, whatever we felt comfortable with. I think both of us will feel more comfortable with the half dose. He said many of his patients are having problems right now and that he thinks that there are high amounts of the seasonal allergens in the air right now (ragweed, etc) and that it might be pushing people over the edge as far as reactions go. He wasn't entirely convinced it was a full anaphylactic reaction, but said he would also have given the Epipen in my situation. Had we been in the office setting, he would have been able to monitor his vitals and see if the epi was really necessary. Out in the real world, I don't have that luxury, so I did what was necessary in our situation.
Going forward will be scary. I just hope that something changes to make this tolerable for him. Dr. M. said that a large reason why people fail OIT is because of stomach problems. Sean's major symptom on the very first day was stomach upset, I've noticed him burping more, and then today he was in clear belly distress. I'm scared of what this means for him. I'm scared of every single decision I'm making right now. Is OIT the right thing? Should I really send him to preschool now? I know his risk of reaction is a lot higher if he gets sick. Should I send him to be surrounded by a bunch of little walking Petri dishes? Should I send him out of my (or my husband's) control into a world filled with unknowns? Should I trust that his preschool teachers will be competent to recognize a reaction quickly and administer the Epipen if needed? Should I put it off a year and hope things are better by Kindergarten? Should we still move back out into the country to be closer to family, knowing that will put us much farther from medical care? We're lucky to have the urgent care and pediatrician just down the road, as well as our family doctor and a nationally-recognized children's hospital within close proximity. And more questions... Did I overreact? Should I have held off on giving the epi? And the unthinkable.. What if I had hesitated to give the epi? My mind is swimming and I've spent the night on the verge of tears. Perhaps I should just go to bed and write more tomorrow after I've had time to process it all. And tonight, I will hug all my babies extra long because I need to feel their warm little bodies, to hear their breathing, and to know that everything will be okay. Tomorrow, we will continue on with careful baby steps and hope that this was merely a glitch in an otherwise successful mission.
“Courage is only the accumulation of small steps.” -George Konrad
Sean had his dose this morning and seemed fine. About an hour and a half or maybe an hour and 45 minutes had passed, and everything seemed normal. Then, he came over to me sort of coughing. It wasn't a big strong cough, but more like he was clearing his throat or his chest or something. He said he was okay, so I thought that maybe he had just choked on his own spit or something. I started paying closer attention to him, but wasn't entirely alarmed yet. But within a minute or so, he started crying pretty hysterically. We couldn't get him to really articulate very well what was wrong with him, but did manage to get out that it was belly-related. My husband wanted me to sit and watch him longer, but I was too scared. I looked at my husband in the eyes and said, "He's having breathing issues and stomach issues. I have to give it to him." And then I did it. I have him an Epipen for the first time. Despite the tremor I now have from this neurological problem I've developed, my hands did not shake. I don't think I've ever done anything with such certainty in my life. After the dose, he went into the bathroom and looked very sick. I asked him if he needed to throw up, and he said yes. He heaved a couple times over the toilet but nothing came out.
After that, we decided to take him to the nearby urgent care for children. We decided against calling an ambulance because the last time we did, they took almost a half an hour to get to our house. The urgent care is just a few minutes down the road, so I quickly loaded our middle son into the van and then got Sean into the van and sat with him while we waited for my husband to bring the baby. In that time, about 10-15 minutes had passed, and Sean was still acting pretty distressed. His skin was pale and had a sick grayish color to it, and he was still acting like something was very, very wrong with his stomach. In the interest of being safe, I went ahead and administered the second dose.
We drove him to the urgent care, only to be told that the urgent care part didn't open until 3pm. I just looked at the woman and said, "You're kidding..." and I ran out the door carrying him. Our pediatrician's office is right across the parking lot from the urgent care, so I ran carrying my 40-pound child there as quickly as possible. Tom had been parking the car with the other two boys and had no clue I did that. The pediatrician's office got us in immediately, checked his vitals, and said he was stable. They told me we needed to go to the ER for several hours of observation, and that they thought he would be good to travel by car. If I wasn't comfortable with that, they would call EMS. I didn't love the idea of taking him ourselves, but I was armed with three more Epipens and the doctors thought he was doing okay, so we did it.
He did okay through the hospital visit. They checked his vitals and watched him until 6 hours after the last dose of epinephrine. He went hours with no symptoms and we were set free. On the way home, he began acting like he was having difficulty breathing. It started with him taking unusually deep breaths, then he began making the coughing noise again, as if he was trying to clear his throat. Then he began to ask for his bucket again, the one we brought with us in case he had to vomit. I began to freak out. I told my husband to turn around because we were near the urgent care (the one we started at, yes they were open this time). We never went in, but it made me feel better just to sit there in the parking lot for a bit. After a few minutes, we headed for home again.
I spoke to Dr. M. and we have a plan for tomorrow. We'll continue Benadryl around the clock for the day and he'll continue his course of steroids. For the morning dose, he said we could do either the full dose or a half dose, whatever we felt comfortable with. I think both of us will feel more comfortable with the half dose. He said many of his patients are having problems right now and that he thinks that there are high amounts of the seasonal allergens in the air right now (ragweed, etc) and that it might be pushing people over the edge as far as reactions go. He wasn't entirely convinced it was a full anaphylactic reaction, but said he would also have given the Epipen in my situation. Had we been in the office setting, he would have been able to monitor his vitals and see if the epi was really necessary. Out in the real world, I don't have that luxury, so I did what was necessary in our situation.
Going forward will be scary. I just hope that something changes to make this tolerable for him. Dr. M. said that a large reason why people fail OIT is because of stomach problems. Sean's major symptom on the very first day was stomach upset, I've noticed him burping more, and then today he was in clear belly distress. I'm scared of what this means for him. I'm scared of every single decision I'm making right now. Is OIT the right thing? Should I really send him to preschool now? I know his risk of reaction is a lot higher if he gets sick. Should I send him to be surrounded by a bunch of little walking Petri dishes? Should I send him out of my (or my husband's) control into a world filled with unknowns? Should I trust that his preschool teachers will be competent to recognize a reaction quickly and administer the Epipen if needed? Should I put it off a year and hope things are better by Kindergarten? Should we still move back out into the country to be closer to family, knowing that will put us much farther from medical care? We're lucky to have the urgent care and pediatrician just down the road, as well as our family doctor and a nationally-recognized children's hospital within close proximity. And more questions... Did I overreact? Should I have held off on giving the epi? And the unthinkable.. What if I had hesitated to give the epi? My mind is swimming and I've spent the night on the verge of tears. Perhaps I should just go to bed and write more tomorrow after I've had time to process it all. And tonight, I will hug all my babies extra long because I need to feel their warm little bodies, to hear their breathing, and to know that everything will be okay. Tomorrow, we will continue on with careful baby steps and hope that this was merely a glitch in an otherwise successful mission.
“Courage is only the accumulation of small steps.” -George Konrad
Sunday, August 11, 2013
First Up-Dose
It took me a while to get around to writing this post. Being freshly back to work after maternity leave and taking care of three little ones keeps me insanely busy, as I'm sure you can imagine.
Sean went on Thursday for his first increase in his dose of peanut. It was the same dose that caused him to have a reaction during the first day, so I was nervous that we might have another reaction. He had experienced some minor reactions to the previous dose at home, and this time he would be taking double that dose. His minor reactions at home included one hive one day and a red welt-like spot on his cheek another day. The red welt-like spot happened as he started playing roughly with his brother right at the 2-hour mark after his dose. A rest period of two to four hours is recommended, so that was our lesson that we definitely need to keep the rest period closer to the long end of that range. However, the single hive happened a good 7.5 hours after his dose. Dr. M. said that it could have been something unrelated to the peanut dose, but I'm not entirely sure. This one happened while he was outside playing in the heat, so perhaps the hot weather had something to do with it. The spot disappeared after a few minutes inside in the air conditioning.
When we went to the office for Sean's first dose increase, we were placed in a room with another boy who was doing peanut OIT, as well as his father. This boy had already worked his way up to real peanuts and was there to increase his dose to five full peanuts! He had some anxieties related to his food allergy, which is totally understandable. Sean isn't old enough to understand the severity of his condition, so he doesn't yet experience anxiety about it. I'm certain it would be quite the emotional obstacle to have to force yourself to eat a food that you know could cause you serious illness or even death. This boy said he did not want to eat five peanuts, but he did it anyway, and he did great! He was quite an inspiration to us newbies. Five whole peanuts! We're only on 5 tiny milligrams of peanut in liquid, so we definitely have a long way to go before we make it to that point. I just hope we DO make it to that point. With an 80% success rate, I can only hope that Sean isn't the 1 out of 5 who will fail and have to live a life of strict peanut avoidance and fear of a severe reaction.
Sean was given his dose, and I was a little discouraged to see one little hive pop up right between his eyes. Thankfully, it didn't progress beyond that and it went away quickly. Dr. M. said those sorts of things are fairly common in the beginning of treatment, but as we progress further, we should see less and less of it. Sean is now up to 5mg of peanut flour (about 2mg peanut protein) in a liquid twice a day. So far, our home doses have gone well, and I hope that continues!
We'll only be able to return to the office for dose increases every two weeks because of my work schedule and the fact that it's a 4-5 hour road trip each way for us. The treatment could be completed in about 6 months if everything went perfectly and we were able to return every week for dose increases. But with our slower pace, I am expecting this to take at least one year, if not longer. His dose may need to be reduced any time he gets sick, in order to reduce the risk of reactions. I'm assuming with this being his first year of preschool and kids being little walking Petri dishes, he will likely be sick a lot. I'm definitely not expecting this to be a quick and easy fix. It's not a race, after all. It's a journey. I'm sure there will be bumps in the road, and I just hope that those bumps are minor enough not to destroy Sean's spirit and will to continue on (not to mention my own!).
Saturday, August 3, 2013
First Doses at Home
We began dosing Sean with his peanut liquid at home on Wednesday, so this is our fourth day. I was a bundle of nerves as we gave him that first dose at home. I made sure to follow it up with some water, as recommended by Dr. M. Then we gave him some applesauce since we learned that it helps curb tummy problems. The next stressful task would be to keep him still for the required two to four hours after his dose.
Sean is 4 years old and he has a 2-year-old brother (not to mention their 3-month-old brother). The older two are typical young little boys who love to bounce off the walls, often in the literal sense. They are loud, rambunctious, and crazy, but I wouldn't have it any other way. However, people going through OIT are faced with the problem that they are more prone to reactions if they are particularly active in the first few hours after their dose. How on Earth would we keep this boy still?
Conveniently, I had just purchased a huge collection of craft projects that I had found online, and the kids absolutely love them. They have made adorable little monkey puppets, and there are so many more projects that we still have to do. I'm personally excited for the colorful, fun-looking paper airplanes! They also love playing games on the Kindle, Nook, and on my phone, and they would sit there for hours and do that if you let them. I rarely ever let them before, but lucky for them, they have a good excuse now. We need to keep Sean still! I'm also waiting on a big order of new books to arrive for them also. I'm always happy to sit and read a book with the boys, and Sean is taking a great interest in learning how to read for himself. He knows how to spell a few small words like yes, no, and his own name. I can't wait until that magical moment when the light bulb comes on and he realizes he can sound out the words!
The second home dose had to be given by Daddy while I was at work. It had to be given in the evening, approximately 12 hours after the morning dose, and he could not sleep for at least an hour afterward. Of course, I was a nervous wreck standing at work an hour away from home and hoping a disaster didn't happen. Thank goodness, it went well. I was, and still am, afraid to let him go to sleep at night. I insist that we check on him multiple times before we go to bed ourselves.
Today is day four of home dosing, and we've only had one minor problem so far. Yesterday, he began to run around and play at the two hour mark after his dose, and a red welt-like spot popped up on his cheek. He said it felt hot, and kept putting his hand over it as if it bothered him. I was watching him like a hawk after that, but thankfully it went away pretty quickly and he never showed any other signs of a reaction. I am taking it as our lesson that a two-hour rest period isn't enough for us. We'll definitely be sticking to three or four hours from now on, as difficult as it may be with a hyperactive 4-year-old.
Our appointment to try our first dose-increase is in five days and we'll be traveling back to Michigan, this time with all three kids, God help us. We'll have to leave at 4 in the morning and be gone most of the day. This is the way I'll spend my days off for quite a while now, potentially a year or more. If it allows me to live life with a little less fear that Sean will die of an allergic reaction to peanuts, then there is nowhere else I'd rather spend my days off work. I hope this treatment is a success!
Wednesday, July 31, 2013
Our First Day of OIT
Yesterday was our first day of peanut OIT with Sean. We pretty much got no sleep the night before. Monday was my first day back to work after maternity leave, and it was a rough day. I only had one technician out of three who were scheduled, and then I didn't get home until 11pm. We had to be out of the house by 4am to get to Dr. M's office to begin. That night, our almost-3-month old baby, Nolan, decided he didn't really want to sleep. Needless to say, we were feeling quite tired having to get up at 3:30am to run out the door. During the drive up, I was fine and felt relatively calm.
When we got to the office, however, I began to panic. It started when Dr. M. presented us with a consent form to sign, stating that allergic reactions up to and including anaphylaxis may occur as a result of this treatment. I started getting nervous, but I was still somewhat keeping my cool. After a bit, he was ready to take his first dose, one milliliter of a grape-flavored liquid containing 2.5 micrograms of peanut flour (equivalent to 1.025 micrograms of peanut protein). After he swallowed the dose, my body went cold, I broke into cold sweat, my heart began to pound, and I caught myself breathing very rapidly. I felt like I was in a full-on panic attack, and all I could think about was getting out of there. And then... Nothing happened.
Sean was given a dose every 15 minutes, and each dose was repeated once before increasing to a new dose which was roughly double the previous one. I found myself highly nervous each time the dose was set to increase, and somewhat less nervous when he was set to get a repeat of the previous one. The schedule for the first day included a total of 25 doses, and we were told to assume that he might begin to show mild symptoms of a reaction somewhere in the middle. We made it through 20 of the doses, and Sean still seemed happy and content. I was starting to think maybe he could make it through the entire first day protocol without a reaction, or at least I hoped. We only had 5 doses left. Could he make it?
Then came dose 21 which consisted of 5mg of peanut flour, equivalent to 2.05mg of peanut protein. This is still a tiny amount, but it was 2000 times higher than his first dose of the day. This dose very quickly sent him from happily playing to acting unhappy and withdrawn. He no longer wanted to talk to the nurse or doctor and no longer wanted to play with his toys. He climbed onto my lap, started to act a little cranky, and began to hide his face in my neck. I asked him what was wrong and his response was, "I think they gave me too much." Tom asked him if he meant too much water, and he said, "No, too much of that grape stuff." We had a bit of trouble getting him to elaborate why he didn't feel well, but finally got out of him that his belly hurt. We alerted the doctor and nurse, and that was the end of dosing for our first day. We would not try to push through any sort of reaction, thank goodness. My nerves couldn't take anymore. For several minutes, Sean just sat on my lap clinging to me and didn't want to look at anyone. I was nervous that the reaction would progress, but Dr. M. was calm, so that helped a bit. I just hated seeing my little boy in discomfort and knowing that we had caused it by feeding him the very thing he is allergic to. It's a weird place to be emotionally when I can see the immediate effect of what we're doing, but I have to try to focus on the long-term goal of keeping him safe from accidental peanut ingestion. If this works really well for us, he may even be able to eat peanuts regularly in his diet someday, but that seems like a distant dream right now.
After he reacted to his dose, a timer was set for 1 hour. If he felt well at the end of that hour, we could finally go home. We had been in the office around 7 hours and we were all exhausted. After several minutes of the tummy ache, Dr. M. offered Sean a pouch of applesauce and said they've found that it really seems to help with the stomach problems. He managed to eat the whole thing of applesauce, but still acted like he didn't feel great. Within a few minutes, he was starting to come around. They brought him some little toys to play with and he really enjoyed them. He was finally acting like his normal self and playing happily again. In all, he was probably back to his normal self within 20 minutes, but it felt like an eternity, and my stress was still not over. I had heard of things like delayed reactions, and couldn't help but continue to think of the worst-case scenario as we drove home.
Sean's car seat is in the very back of our van and his two brothers' seats are in the middle row. It makes Sean harder to see from the front. I rode in the back with him for a while, and then after we stopped to eat, I decided it would be easier to climb back into the front seat. I knew Sean was exhausted and he went to sleep in the back. I kept having to check to make sure he was still breathing. At this point, I was exhausted, stressed, overwhelmed, and had a little emotional breakdown. All my fears and worries came flowing to the surface and the tears began to flow. Tom, who is ever the optimist, reminded me of the reasons we chose to do this treatment. We felt that the benefit of the treatment outweighed the risk of doing it, and the even bigger risks of not doing it. In his life, it's not a matter of "if" he accidentally eats a peanut, but "when". And keep in mind that his highest tolerated dose was only 0.41% of one whole peanut. Less than one half of one percent. Anymore than that, and he started feeling very ill. Throughout the course of the entire day, he only consumed roughly 1% of a peanut over approximately 6 hours or so. It was only a matter of time before he accidentally ate that much or more, and then who knows what might have happened? I don't even want to think about it. I consider ourselves very lucky that he hadn't already had a bad reaction. While we were driving home, my anxiety continued to mount, and I decided to jump into the back and make sure he was okay. He was sleeping very deeply, which is not surprising after he stayed awake from 4am to 7am on the drive to Michigan, and then after putting his body through a lot of work during the desensitization treatment. He was drooling on his car seat, and something about the sight of him slumped over drooling made me panic a bit and I shook him awake. He just looked at me and said with some attitude, "I don't like that." Just what I needed to hear!
That night, he insisted that I put him to bed, even though their Daddy usually does it while I stay with baby brother Nolan. I didn't mind, as I was scared of the thought of him sleeping. I was afraid that he might have trouble breathing and we wouldn't hear him or know that something was wrong. I laid and talked to him for a long time as Calvin was falling asleep. He wanted me to make up some stories, so I told him a story about a little boy who wanted to ride his bicycle, but didn't wear his helmet. I asked him what he thought happened, and his response was that he got hit by a car and got hurt. I told him that yes, that could happen and that was something we need to be concerned about, but that this particular time, the little boy (whose name was Sean) was riding along without his helmet on and a bird flew over him and pooped on his head. Haha! It made Sean laugh, and I still think it got the point across... It is important to wear your helmet when riding your bicycle. The next story was about a kitty who was stuck in a tree and a dog found him but couldn't help him, so he got his friend the bird. The bird called on several of his bird friends and they all flew in a circle holding a sheet and the dog told the kitty that it was safe to jump. The kitty jumped into the sheet and was lowered safely to the ground by the friendly birds. The dog and the kitty were best of friends after that. They were the simplest little stories, but they made Sean smile and laugh, which was just what we both needed after such a long and stressful day. He asked me repeatedly to stay in his bed with him, and told me several times that I can't go back to work ever. That was the most heart-breaking, as this is my first week back from maternity leave and I desperately want to stay home with my boys. If nothing else, it feels good to know he wants his mama to stay home with him. Eventually, the boys went to sleep and I got some much-needed deep sleep of my own. I tried not to think of the bottle of peanut liquid in our refrigerator that I would have to begin feeding him twice daily starting the next morning.
When we got to the office, however, I began to panic. It started when Dr. M. presented us with a consent form to sign, stating that allergic reactions up to and including anaphylaxis may occur as a result of this treatment. I started getting nervous, but I was still somewhat keeping my cool. After a bit, he was ready to take his first dose, one milliliter of a grape-flavored liquid containing 2.5 micrograms of peanut flour (equivalent to 1.025 micrograms of peanut protein). After he swallowed the dose, my body went cold, I broke into cold sweat, my heart began to pound, and I caught myself breathing very rapidly. I felt like I was in a full-on panic attack, and all I could think about was getting out of there. And then... Nothing happened.
Sean was given a dose every 15 minutes, and each dose was repeated once before increasing to a new dose which was roughly double the previous one. I found myself highly nervous each time the dose was set to increase, and somewhat less nervous when he was set to get a repeat of the previous one. The schedule for the first day included a total of 25 doses, and we were told to assume that he might begin to show mild symptoms of a reaction somewhere in the middle. We made it through 20 of the doses, and Sean still seemed happy and content. I was starting to think maybe he could make it through the entire first day protocol without a reaction, or at least I hoped. We only had 5 doses left. Could he make it?
Then came dose 21 which consisted of 5mg of peanut flour, equivalent to 2.05mg of peanut protein. This is still a tiny amount, but it was 2000 times higher than his first dose of the day. This dose very quickly sent him from happily playing to acting unhappy and withdrawn. He no longer wanted to talk to the nurse or doctor and no longer wanted to play with his toys. He climbed onto my lap, started to act a little cranky, and began to hide his face in my neck. I asked him what was wrong and his response was, "I think they gave me too much." Tom asked him if he meant too much water, and he said, "No, too much of that grape stuff." We had a bit of trouble getting him to elaborate why he didn't feel well, but finally got out of him that his belly hurt. We alerted the doctor and nurse, and that was the end of dosing for our first day. We would not try to push through any sort of reaction, thank goodness. My nerves couldn't take anymore. For several minutes, Sean just sat on my lap clinging to me and didn't want to look at anyone. I was nervous that the reaction would progress, but Dr. M. was calm, so that helped a bit. I just hated seeing my little boy in discomfort and knowing that we had caused it by feeding him the very thing he is allergic to. It's a weird place to be emotionally when I can see the immediate effect of what we're doing, but I have to try to focus on the long-term goal of keeping him safe from accidental peanut ingestion. If this works really well for us, he may even be able to eat peanuts regularly in his diet someday, but that seems like a distant dream right now.
After he reacted to his dose, a timer was set for 1 hour. If he felt well at the end of that hour, we could finally go home. We had been in the office around 7 hours and we were all exhausted. After several minutes of the tummy ache, Dr. M. offered Sean a pouch of applesauce and said they've found that it really seems to help with the stomach problems. He managed to eat the whole thing of applesauce, but still acted like he didn't feel great. Within a few minutes, he was starting to come around. They brought him some little toys to play with and he really enjoyed them. He was finally acting like his normal self and playing happily again. In all, he was probably back to his normal self within 20 minutes, but it felt like an eternity, and my stress was still not over. I had heard of things like delayed reactions, and couldn't help but continue to think of the worst-case scenario as we drove home.
Sean's car seat is in the very back of our van and his two brothers' seats are in the middle row. It makes Sean harder to see from the front. I rode in the back with him for a while, and then after we stopped to eat, I decided it would be easier to climb back into the front seat. I knew Sean was exhausted and he went to sleep in the back. I kept having to check to make sure he was still breathing. At this point, I was exhausted, stressed, overwhelmed, and had a little emotional breakdown. All my fears and worries came flowing to the surface and the tears began to flow. Tom, who is ever the optimist, reminded me of the reasons we chose to do this treatment. We felt that the benefit of the treatment outweighed the risk of doing it, and the even bigger risks of not doing it. In his life, it's not a matter of "if" he accidentally eats a peanut, but "when". And keep in mind that his highest tolerated dose was only 0.41% of one whole peanut. Less than one half of one percent. Anymore than that, and he started feeling very ill. Throughout the course of the entire day, he only consumed roughly 1% of a peanut over approximately 6 hours or so. It was only a matter of time before he accidentally ate that much or more, and then who knows what might have happened? I don't even want to think about it. I consider ourselves very lucky that he hadn't already had a bad reaction. While we were driving home, my anxiety continued to mount, and I decided to jump into the back and make sure he was okay. He was sleeping very deeply, which is not surprising after he stayed awake from 4am to 7am on the drive to Michigan, and then after putting his body through a lot of work during the desensitization treatment. He was drooling on his car seat, and something about the sight of him slumped over drooling made me panic a bit and I shook him awake. He just looked at me and said with some attitude, "I don't like that." Just what I needed to hear!
That night, he insisted that I put him to bed, even though their Daddy usually does it while I stay with baby brother Nolan. I didn't mind, as I was scared of the thought of him sleeping. I was afraid that he might have trouble breathing and we wouldn't hear him or know that something was wrong. I laid and talked to him for a long time as Calvin was falling asleep. He wanted me to make up some stories, so I told him a story about a little boy who wanted to ride his bicycle, but didn't wear his helmet. I asked him what he thought happened, and his response was that he got hit by a car and got hurt. I told him that yes, that could happen and that was something we need to be concerned about, but that this particular time, the little boy (whose name was Sean) was riding along without his helmet on and a bird flew over him and pooped on his head. Haha! It made Sean laugh, and I still think it got the point across... It is important to wear your helmet when riding your bicycle. The next story was about a kitty who was stuck in a tree and a dog found him but couldn't help him, so he got his friend the bird. The bird called on several of his bird friends and they all flew in a circle holding a sheet and the dog told the kitty that it was safe to jump. The kitty jumped into the sheet and was lowered safely to the ground by the friendly birds. The dog and the kitty were best of friends after that. They were the simplest little stories, but they made Sean smile and laugh, which was just what we both needed after such a long and stressful day. He asked me repeatedly to stay in his bed with him, and told me several times that I can't go back to work ever. That was the most heart-breaking, as this is my first week back from maternity leave and I desperately want to stay home with my boys. If nothing else, it feels good to know he wants his mama to stay home with him. Eventually, the boys went to sleep and I got some much-needed deep sleep of my own. I tried not to think of the bottle of peanut liquid in our refrigerator that I would have to begin feeding him twice daily starting the next morning.
Saturday, July 27, 2013
Initial Consultation
Thursday (July 25th) was our first meeting with Dr. M. It took us longer to get there than we expected, so we literally strolled in at 5 minutes after our 11am appointment time. I was a wreck because I hate being late after years of training by my excessively early father (a meal with his family may be scheduled for Noon, but if you're not there by 11:15, you'll get a phone call asking your whereabouts). Thankfully, no one in the office seemed to notice or care much about our 5 minute tardiness. I'd say it could have been worse, considering it's a 4+ hour trip with a 4-year-old. There were many unforeseen bathroom breaks, and believe me, we planned for a few!
The meeting with the doctor went well. We talked about Sean's history of food allergies, and although our main purpose for the trip was to discuss OIT (desensitization) for his peanut allergy, we talked in detail about his egg allergy. I'm really glad we did, because I've really wanted to address it further, but our regular allergist is very black-and-white on the issue, and recommends absolute avoidance for pretty much everything. However, Sean's most recent RAST for egg was only 0.46 and they consider anything below 0.35 insignificant. So it was really low. Dr. M. said he was quite certain that Sean could tolerate extensively baked egg, and recommended we try it at home. He defined "extensively baked egg" as egg that is baked at 350 degrees or higher for at least 30 minutes, so maybe we'll start with something like a cake. If he tolerates that with no signs of reaction, we are to continue feeding him something with extensively baked egg a few times a week. This exposure will help him to naturally outgrow his egg allergy faster than complete avoidance. The doctor only made this recommendation to us because his RAST number was so low and because he had not experienced a reaction since he was two years old. I don't recommend trying this on your own, as every person's food allergy situation is unique and will require professional advice. In our case, if he tolerates extensively baked egg for several weeks, then we may begin to incorporate forms of eggs that are less baked, either at cooler temperatures than 350 degrees or for less than 30 minutes. If he tolerates that well, then hopefully we can eventually get to the types of eggs where the allergy-causing proteins are still intact, such as scrambled eggs and French toast. Dr. M. was quite confident that he would eventually outgrow the egg allergy, which would be huge.
Then came the OIT talk. I had already been reading a lot about the protocols used for this type of treatment, so in general, I knew what to expect. There is an initial desensitization day that lasts around 7 to 8 hours in the office in which Sean will be fed minuscule amounts of peanut in a solution form every 15 minutes until he begins to show signs of a reaction. At that point, we will stop and his highest tolerated dose before the reaction will be our "take home" dose that we will administer to him twice daily at home. He will not be allowed to "exercise" for 2 to 4 hours his dose, which might be tricky because their definition of "exercise" is just regular play for him. He is just an incredibly high-strung child, so it might be a challenge to keep him still for so long each day. After his evening dose, he is not allowed to sleep for one hour, and I'm certain I'll still be a paranoid wreck and want to watch him sleep just in case he should develop any breathing difficulty.
One of the things that stuck with me the most from the visit was when the doctor said, "He will have a reaction." Logically, I knew that, but I had tried not to think about it. It doesn't mean he'll have an anaphylactic reaction, but of course that is a fear in my mind. We will of course stay armed with epinephrine and hope that his reactions are always mild.
The closer we get to Tuesday, the more nervous I become. I had difficulty sleeping last night because I was stewing over whether or not I have made the correct decision for my son. I never want to do anything that may cause more harm than good, and I would never even consider this if I didn't trust the doctors, the research, and my instincts. I feel like if we do nothing, we're just sitting around waiting for him to have a potentially severe reaction. But if we do this, I feel like we're at least giving him a fighting chance against accidental ingestion. And if we're really lucky, maybe someday he'll be able to incorporate peanuts in his diet like a normal person. I want nothing but the best for my little man, and I just hope with all my heart that this is the best decision.
The meeting with the doctor went well. We talked about Sean's history of food allergies, and although our main purpose for the trip was to discuss OIT (desensitization) for his peanut allergy, we talked in detail about his egg allergy. I'm really glad we did, because I've really wanted to address it further, but our regular allergist is very black-and-white on the issue, and recommends absolute avoidance for pretty much everything. However, Sean's most recent RAST for egg was only 0.46 and they consider anything below 0.35 insignificant. So it was really low. Dr. M. said he was quite certain that Sean could tolerate extensively baked egg, and recommended we try it at home. He defined "extensively baked egg" as egg that is baked at 350 degrees or higher for at least 30 minutes, so maybe we'll start with something like a cake. If he tolerates that with no signs of reaction, we are to continue feeding him something with extensively baked egg a few times a week. This exposure will help him to naturally outgrow his egg allergy faster than complete avoidance. The doctor only made this recommendation to us because his RAST number was so low and because he had not experienced a reaction since he was two years old. I don't recommend trying this on your own, as every person's food allergy situation is unique and will require professional advice. In our case, if he tolerates extensively baked egg for several weeks, then we may begin to incorporate forms of eggs that are less baked, either at cooler temperatures than 350 degrees or for less than 30 minutes. If he tolerates that well, then hopefully we can eventually get to the types of eggs where the allergy-causing proteins are still intact, such as scrambled eggs and French toast. Dr. M. was quite confident that he would eventually outgrow the egg allergy, which would be huge.
Then came the OIT talk. I had already been reading a lot about the protocols used for this type of treatment, so in general, I knew what to expect. There is an initial desensitization day that lasts around 7 to 8 hours in the office in which Sean will be fed minuscule amounts of peanut in a solution form every 15 minutes until he begins to show signs of a reaction. At that point, we will stop and his highest tolerated dose before the reaction will be our "take home" dose that we will administer to him twice daily at home. He will not be allowed to "exercise" for 2 to 4 hours his dose, which might be tricky because their definition of "exercise" is just regular play for him. He is just an incredibly high-strung child, so it might be a challenge to keep him still for so long each day. After his evening dose, he is not allowed to sleep for one hour, and I'm certain I'll still be a paranoid wreck and want to watch him sleep just in case he should develop any breathing difficulty.
One of the things that stuck with me the most from the visit was when the doctor said, "He will have a reaction." Logically, I knew that, but I had tried not to think about it. It doesn't mean he'll have an anaphylactic reaction, but of course that is a fear in my mind. We will of course stay armed with epinephrine and hope that his reactions are always mild.
The closer we get to Tuesday, the more nervous I become. I had difficulty sleeping last night because I was stewing over whether or not I have made the correct decision for my son. I never want to do anything that may cause more harm than good, and I would never even consider this if I didn't trust the doctors, the research, and my instincts. I feel like if we do nothing, we're just sitting around waiting for him to have a potentially severe reaction. But if we do this, I feel like we're at least giving him a fighting chance against accidental ingestion. And if we're really lucky, maybe someday he'll be able to incorporate peanuts in his diet like a normal person. I want nothing but the best for my little man, and I just hope with all my heart that this is the best decision.
Tuesday, July 23, 2013
Why I Took the Plunge
I've been reading about OIT for food allergies for a while now, and it always seemed like something we would maybe do in the distant future. The doctors who offer it are few and far between, so we would likely have to travel quite a distance for the treatment. Some doctors will not even accept children under 5 years old for OIT. I questioned the logistics of traveling to a doctor's office hours away on a frequent basis for dose increases every week or two. My work schedule varies dramatically from one week to the next and I never have the same day off two weeks in a row. We have two younger children to care for also, a 2-year-old and our youngest, who will be 12 weeks old tomorrow. The timing just has not seemed right.
But the more I thought about it, the more I realized there would never be a better time. In one year, Sean will be starting kindergarten. That brings up many concerns on its own. What if he has a severe allergic reaction at school? What if he has to sit alone to eat? What if the other kids are mean to him. Bullying because of food allergies is horrific and is on the rise. Just do an internet search for it and you will be horrified if you are a parent, and especially if you are a parent of a child with food allergies. But beyond those concerns were the concerns of how we could even work it out. Education is highly important to me, and I do not want him to be accustomed to frequently missing school. This year, he will only be in preschool three days a week, which leaves Tuesdays and Thursdays open for possible appointments. And it just so happens that my week day off work is always either a Tuesday or a Thursday. So schedule-wise, it made sense to start sooner.
The other reason I felt a sense of urgency to begin is related to my own health concerns. I gave birth to our youngest son Nolan on May 1st of this year. Five days later, I began suffering from very troublesome neurological symptoms. I've been through many, many tests since then, and for the most part everything has come back normal. Right now, I'm being evaluated for such illnesses as multiple sclerosis and Lyme disease. The prospect of potentially having a disease that may physically debilitate me has given me a new sense of urgency to complete a lot of things that I want to accomplish in my life. While I realize that multiple sclerosis is generally a slowly progressing illness, this whole experience has reminded me that life is short and there are things I want to get done. If I died tomorrow, I don't think OIT would be at the top of the priority list for my husband, newly widowed with three small children to care for. I'm usually in charge of making the medical decisions for our children, and this is something I want strongly for my son.
And so I made the decision to go for it. It felt like it was on an impulsive whim, and it sort of was, but I had been reading and planning it for a while now. I did not expect the initial appointment to happen so quickly, either. I called on a Monday and the appointment was scheduled for Thursday. Amazing! I can't wait to get started. I'm nervous, scared, excited, but most of all... Hopeful.
But the more I thought about it, the more I realized there would never be a better time. In one year, Sean will be starting kindergarten. That brings up many concerns on its own. What if he has a severe allergic reaction at school? What if he has to sit alone to eat? What if the other kids are mean to him. Bullying because of food allergies is horrific and is on the rise. Just do an internet search for it and you will be horrified if you are a parent, and especially if you are a parent of a child with food allergies. But beyond those concerns were the concerns of how we could even work it out. Education is highly important to me, and I do not want him to be accustomed to frequently missing school. This year, he will only be in preschool three days a week, which leaves Tuesdays and Thursdays open for possible appointments. And it just so happens that my week day off work is always either a Tuesday or a Thursday. So schedule-wise, it made sense to start sooner.
The other reason I felt a sense of urgency to begin is related to my own health concerns. I gave birth to our youngest son Nolan on May 1st of this year. Five days later, I began suffering from very troublesome neurological symptoms. I've been through many, many tests since then, and for the most part everything has come back normal. Right now, I'm being evaluated for such illnesses as multiple sclerosis and Lyme disease. The prospect of potentially having a disease that may physically debilitate me has given me a new sense of urgency to complete a lot of things that I want to accomplish in my life. While I realize that multiple sclerosis is generally a slowly progressing illness, this whole experience has reminded me that life is short and there are things I want to get done. If I died tomorrow, I don't think OIT would be at the top of the priority list for my husband, newly widowed with three small children to care for. I'm usually in charge of making the medical decisions for our children, and this is something I want strongly for my son.
And so I made the decision to go for it. It felt like it was on an impulsive whim, and it sort of was, but I had been reading and planning it for a while now. I did not expect the initial appointment to happen so quickly, either. I called on a Monday and the appointment was scheduled for Thursday. Amazing! I can't wait to get started. I'm nervous, scared, excited, but most of all... Hopeful.
What is OIT (oral immunotherapy treatment) for Food Allergies?
I first learned of OIT (oral immunotherapy) for food allergies after joining some online groups for parents of food-allergic children. It is a physician-supervised treatment in which the patient takes small amounts of his or her allergen orally, beginning with minuscule quantities and gradually increasing to larger amounts over time. It works on the basis that the immune system, which is falsely attacking food proteins as foreign invaders, can be desensitized over time. In these online groups, I saw pictures and stories of children eating handfuls of peanuts after previously experiencing life-threatening allergic reactions from ingesting invisible amounts of peanut.
I was intrigued, but scared to say the least. So far, Sean has never had a severe reaction. If we just left him alone, perhaps he never would. The thought of feeding him his allergen seemed a bit like playing with fire. What if I do more harm than good? But then I remembered what we've already got stacked against us. Peanut allergy is the leading food allergy related to anaphylaxis. For those who don't know, anaphylaxis is a severe, life-threatening allergic reaction. It can be brought on by exposure to a very small, even invisible, amount of an allergen, and can escalate to death within minutes due to the involvement of multiple major body systems. Initial symptoms may be complaints of itchy or tingly lips, tongue, or throat. The sufferer will likely begin sounding hoarse, coughing, wheezing, and have difficulty breathing. Some experience gastrointestinal symptoms such as abdominal pain and cramping, vomiting, and diarrhea. Hives may erupt on the skin. Swelling is likely, and is especially noticeable in the face around the mouth and eyes. This swelling occurs as fluids leak out of the blood vessels and into body tissues. As a result, the blood pressure drops and may become dangerously low. The body will try to compensate for the low blood pressure by increasing the heart rate. For this reason, people who are experience anaphylaxis are often found with low blood pressure and rapid pulse. However, in about 10% of cases, the blood pressure and pulse will both be low. If this condition is not corrected quickly with a medication called epinephrine, either in an emergency department or via auto-injectors such as the Epipen or Auvi-Q, the condition can rapidly lead to unconsciousness and death.
As I read about OIT, I found that about 80% of the patients who begin it are successfully treated. I decided that sitting around doing nothing was just as scary as all the unknowns associated with OIT, so I made the call to set up the appointment.
Assuming Sean is deemed a good candidate for OIT, we will begin with one long day where he is periodically fed extremely small doses of a peanut solution while his vital signs are constantly monitored and he is watched for signs of a reaction. A dose will be determined for him to continue at home, and we will continue to dose him on our own (with Epipens in hand, I'm sure) until his next appointment. We will have to make the 3.5 - 4 hour drive every week or two for a dose increase that will be given in the office. If tolerated, we'll again be sent home to continue the dosing on our own. This will happen repeatedly over many months and if all goes well, it will end with him being able to eat multiple whole peanuts. I can't even imagine that at this point! Because this is a relatively new treatment and is still considered experimental, there is not a lot of information on how long he will have to continue daily maintenance dosing once the treatment is completed. It may be that he will have to continue eating peanut products on a daily basis for the rest of his life (or a minimum of several years) to maintain his desensitization. We'll cross that bridge if and when we get there, and I really, really hope we get there!
I was intrigued, but scared to say the least. So far, Sean has never had a severe reaction. If we just left him alone, perhaps he never would. The thought of feeding him his allergen seemed a bit like playing with fire. What if I do more harm than good? But then I remembered what we've already got stacked against us. Peanut allergy is the leading food allergy related to anaphylaxis. For those who don't know, anaphylaxis is a severe, life-threatening allergic reaction. It can be brought on by exposure to a very small, even invisible, amount of an allergen, and can escalate to death within minutes due to the involvement of multiple major body systems. Initial symptoms may be complaints of itchy or tingly lips, tongue, or throat. The sufferer will likely begin sounding hoarse, coughing, wheezing, and have difficulty breathing. Some experience gastrointestinal symptoms such as abdominal pain and cramping, vomiting, and diarrhea. Hives may erupt on the skin. Swelling is likely, and is especially noticeable in the face around the mouth and eyes. This swelling occurs as fluids leak out of the blood vessels and into body tissues. As a result, the blood pressure drops and may become dangerously low. The body will try to compensate for the low blood pressure by increasing the heart rate. For this reason, people who are experience anaphylaxis are often found with low blood pressure and rapid pulse. However, in about 10% of cases, the blood pressure and pulse will both be low. If this condition is not corrected quickly with a medication called epinephrine, either in an emergency department or via auto-injectors such as the Epipen or Auvi-Q, the condition can rapidly lead to unconsciousness and death.
As I read about OIT, I found that about 80% of the patients who begin it are successfully treated. I decided that sitting around doing nothing was just as scary as all the unknowns associated with OIT, so I made the call to set up the appointment.
Assuming Sean is deemed a good candidate for OIT, we will begin with one long day where he is periodically fed extremely small doses of a peanut solution while his vital signs are constantly monitored and he is watched for signs of a reaction. A dose will be determined for him to continue at home, and we will continue to dose him on our own (with Epipens in hand, I'm sure) until his next appointment. We will have to make the 3.5 - 4 hour drive every week or two for a dose increase that will be given in the office. If tolerated, we'll again be sent home to continue the dosing on our own. This will happen repeatedly over many months and if all goes well, it will end with him being able to eat multiple whole peanuts. I can't even imagine that at this point! Because this is a relatively new treatment and is still considered experimental, there is not a lot of information on how long he will have to continue daily maintenance dosing once the treatment is completed. It may be that he will have to continue eating peanut products on a daily basis for the rest of his life (or a minimum of several years) to maintain his desensitization. We'll cross that bridge if and when we get there, and I really, really hope we get there!
Monday, July 22, 2013
The Beginning of a Nutty Journey
Our story began in August, 2009. I decided it was time to officially introduce our son Sean to peanut butter. He was just over two years old. I had tried giving him PB&J sandwiches a couple times before, but he didn't really like it and so I hadn't tried to feed it to him in a while. That day, I wanted some peanut butter for myself and decided to let him have a taste off of the spoon. It was within minutes that his mouth was surrounded with hives. Thankfully, his reaction didn't escalate beyond that, as we would have been totally unprepared. I was able to get him in to visit an allergist for testing within the next week.
It doesn't really fit in with the main point of this blog, but I feel that I absolutely must share the experience we had with our first allergist visit. We went for his skin scratch test and not surprisingly, we were told that he was allergic to peanuts. Much to our surprise, we were told that he was also allergic to milk and wheat. Our child literally lived on milk and wheat. I had just talked to his pediatrician at his 2-year checkup about how all I could get him to drink was milk, and the only foods he wanted to eat were cheese and yogurt. He occasionally ate macaroni and cheese and other noodles and bread/crackers (wheat). The allergist specifically told us that he did not test allergic to eggs. So being completely bum-rushed by this information, we didn't know what to feed our poor child. We were told to completely exclude the milk and wheat, even though he had never shown an obvious reaction to either. We had to take away his sippy cup full of milk, and it was the strangest feeling ever, because he went through multiple gallons of milk every week. So not knowing what else to do, we decided to give him eggs for breakfast. Afterall, the allergist had just specifically stated that he was okay with eggs. So imagine my surprise when his mouth starts erupting in hives as we watch him eat it. I stopped him and called the allergist back to double check and clarify that I had not misunderstood. She confirmed that she had documented him as allergic to only peanuts, milk, and wheat. I told her that he indeed did just react to eggs, and so she ordered blood tests for all four: peanuts, milk, wheat, and eggs. We went shopping and bought a bunch of weird foods that we never would have eaten otherwise. Cheese made of rice? Eww. It was disgusting. But Sean liked it, so that was the important thing. A week later, the blood tests were in. He was indeed allergic to peanuts, eggs, and milk. He did not test allergic to wheat. I do believe it was a mistake in interpreting the skin test by the allergist. I'm just glad that his reaction to egg was not more severe. I'm irritated that she told us the wrong allergies, but had the incident resulted in a life-threatening reaction, I would have been livid.
The terrible thing about food allergies is that you can not predict the severity of a reaction based on previous reactions. Although his previous reactions were relatively mild, it is expected that future reactions could increase in severity. We are to treat his allergies as potentially life-threatening, strictly avoid his allergens (even items "processed on shared equipment" with peanuts), and carry Epipens at all times. Peanut allergy is the #1 food allergy linked to severe allergic reactions leading to death due to anaphylactic shock. People have accused me of being a paranoid mama-bear. I just feel that I'm doing what is necessary to keep my son safe.
Fast-forward to December 2012. Sean had spent almost a year and a half avoiding all traces of dairy, and thankfully, he eventually outgrew that allergy. The day we got the call that his test indicated that we could reincorporate it freely into his diet was an amazing and joyous day. It makes cooking a million times easier when you can include milk, cheese, cream cheese, sour cream, etc. You get the idea. But the tears started to flow when I imagined us going as a family on a hot Summer day to buy our children ice cream. It had been heart-breaking for me to imagine not being able to take my little boys to enjoy one of life's simple pleasures due to a food allergy. Yay for ice cream! I cried tears of joy... A small victory!
And fast-forward once again to today. I made the phone call that may very well lead to another victory for us. Only this one would be a huge victory. I called the office of Dr. M. in Michigan who came highly recommended to me from other people in online food allergy groups. Dr. M. has personally dealt with food allergies and is deeply invested in OIT (oral immunotherapy) as a treatment for food allergies (more on that later). I originally planned to wait until Sean was 5 years old to begin this treatment, but for many reasons (more on those later also), I decided to take the leap sooner. When I spoke to the woman on the phone, I was absolutely shocked when she told me they had an opening for an appointment this Thursday! I was looking at my schedule, expecting it to be weeks out before I could see Dr. M. I think Tom was ready to kill me when I told him we have an appointment in three days! He had just told me last night that he would leave the "when" and "where" up to me, but I really don't think he expected us to find ourselves in a doctor's office to discuss it this week! To be honest, I didn't expect it either.
He ought to know by now that I'm the impulsive type. I do things on a whim... Sometimes, those things happen to be amazing, huge, life-altering things that involve hours worth of driving when we have no plans for baby-sitters and no freaking CLUE what we're in for. Sometimes, those things end up unbelievably beautiful, and I can only hope this is one of those times. I want to send my child to school and not worry that he may experience a severe, life-threatening reaction. I want to send my child to school without having to hide my tears when he asks me why he can't sit with the other children at lunch. I want him to go to birthday parties where he can enjoy the cake and not have to bring his own "safe" treat so as not to feel entirely left out. I want to eat at restaurants without feeling like I have to stare at him the whole time, poised to stab him with his Epipen should he experience difficulty breathing.
Was the lollipop processed on equipment that also processes peanuts?
Let's read the fine print before we buy it!
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