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.
Saturday, August 17, 2013
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!
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