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.
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