I feel like I am spinning in a whirlpool. There are several ways to get out, but each time I think I am reaching for the right ladder, I get sucked under again by new circumstances and new things to consider.
I haven't been able to blog about B's journey since January, since she had her anaphylactic reaction in the middle of the night. Honestly, I want to write now... but my mental block is caused by that stupid whirlpool. My thoughts are unorganized, nothing makes sense, I'm frustrated. If you choose to keep reading, bear with me, as I am attempting to do my level best.
Let's start with January. B had anaphylaxis one hour post dose, probably caused by several different factors that came together to create the perfect storm. Five days later she broke out in full body hives 2 hours post dose (a minor reaction, but still troubling). She followed all the rules, didn't have her heart rate or body temp elevated, had a full tummy prior to dosing, drank a lot of water after dosing, had some "apple-something" after dosing... she shouldn't have reacted, but she did. We have no idea why. Maybe her immune system still had high levels of histamine after her anaphylactic reaction 5 days earlier?
The rest of January and February were uneventful, but then came March. On March 25th, B had her peanut dose a little later than usual. Normally we give it to her at 5:30, but because she needed to take a shower after swim lessons, we didn't give it to her until 6:30. She followed all the rules, had the dose after dinner, lots of water, apple-something to wash it down, rested for 2 hours and went to bed at 8:30 after taking her nightly dose of zyrtech. At 10:15, she woke up with a coughing fit.
(To provide a little history on the coughing fit- this is something new that has started recently but only occurs once every 3-5 weeks. We don't know what causes her to cough, but it always seems to be in the middle of the night after she has been asleep for a few hours. She will cough for 20-40 minutes and then she'll go back to sleep. Nothing ever comes of it and I can't link it to anything because it is so random.)
When I went into her room to check on her, I noticed that she was dressed in pajamas that were way to warm (full footed winter pj's) and I immediately changed her into something cooler. As she was coming out of her sleep, she began to get a little hysterical. She was crying and saying that she couldn't breathe. I knew it was her nose that was stuffy, and not her actual airway, so I got her some water to drink and we went to the bathroom to give her a nasal wash with xylitol nasal spray, the same routine we always do when she is coughing like that. She finally quit crying and began to calm down about 15 minutes later. Her cough had ceased. But then she started to get little hives. First one on her back, then one on her chin, and soon she was covered in them. I gave her 2 tsp of Benedryl and woke my husband up. I informed him that we may need to give her the epi pen again. As we were discussing it, B started to complain of tummy pain (which could either be a GI symptom of anaphylaxis or it could have been nervousness because she heard me talking about the epi pen). My husband looked at her, and just like the time she had anaphylaxis in January, he said "I don't think she needs it." Here we were again in the exact same situation, and my husband was making me second guess my decision. Instead of agreeing to give it to her, he called our OIT allergist who, again answered his phone in the middle of the night (this guy is amazing! lol) and advised us to give her 2 tsp predisolone and 1 puff of albuterol (which he had given to us at a prior appt). He said he couldn't hear B having any breathing trouble or coughing, so he didn't think the epi pen was necessary. After all was said and done, my little one went back to bed and I stayed up watching her for the next several hours.
So, after having a middle of the night reaction in November, anaphylaxis and a minor reaction in January, and another middle of the night reaction in March, we are again left wondering "why" and just as importantly "what can we do about it?" Both are equally puzzling.
I started thinking back to the beginning of OIT, when B was being treated by the original doctor. I've said before that OIT had gone so smoothly for B until she reached maintenance... and while it is true that she never had any major reactions the entire first year of up-dosing, there were several times that I brought up what I thought were weird occurrences. I didn't recognize them as problems with the OIT treatment because the doctor would always say "it's unrelated."
From the very beginning of OIT, B has had to wash down her dose with a glass of water because she gets a weird sensation in her throat. Dr. #1 was never concerned about it. I also told him when B started to have chest pain every time she exercised. Dr. #1 said it was unrelated, but that he would order a chest xray if we wanted one. I told him about the two times that B had spontaneously vomited for absolutely no reason at all, and his response was "sometimes kids do that, it's unrelated." I told him about how B had a hard time breathing and had to continuously take deep breaths all last spring while we were temporarily residing in Mississippi. He listened to her in his exam room (just by ear, not with any type of medical devices) and said "it's not asthma... it's unrelated to the OIT doses. She is probably just attention seeking."
Thinking back on all of that, I feel like an idiot for not getting a second opinion. But in looking back, each of these symptoms are probably due to acid reflux- which the doctor we now see, said was a probability during B's very first appointment with him.
We recently took B to a pediatric pulmonologist to rule out asthma (which can also display some of the same symptoms). She had a chest xray, computerized breathing test without albuterol and with albuterol- all of which were perfectly normal. The pulmonologist said her lungs looked and performed beautifully. He also agreed that her specific symptoms sound a lot like GERD.
Now I am in the process of trying natural remedies to help her. We've raised the head of the bed 5 inches, we've been giving her lots of fermented foods and cultured foods. I've bought chamomile tea for her to try. So far she hasn't had anymore middle of the night coughing fits. She still gets the weird sensation upon swallowing her dose (not every time, but frequently). She hasn't had chest pain in a few weeks. For now, we're just waiting to see if it happens again... which is frustrating.
If her symptoms do persist (because a change in her diet was not enough), we are considering chiropractics. If chiropractics do not help, we will then consider meds. I am contemplating taking her to a GI specialist so we can get a definite diagnosis- and no longer speculate about the acid reflux. But right now, it's the only thing that makes sense.
So, after having a middle of the night reaction in November, anaphylaxis and a minor reaction in January, and another middle of the night reaction in March, we are again left wondering "why" and just as importantly "what can we do about it?" Both are equally puzzling.
I started thinking back to the beginning of OIT, when B was being treated by the original doctor. I've said before that OIT had gone so smoothly for B until she reached maintenance... and while it is true that she never had any major reactions the entire first year of up-dosing, there were several times that I brought up what I thought were weird occurrences. I didn't recognize them as problems with the OIT treatment because the doctor would always say "it's unrelated."
From the very beginning of OIT, B has had to wash down her dose with a glass of water because she gets a weird sensation in her throat. Dr. #1 was never concerned about it. I also told him when B started to have chest pain every time she exercised. Dr. #1 said it was unrelated, but that he would order a chest xray if we wanted one. I told him about the two times that B had spontaneously vomited for absolutely no reason at all, and his response was "sometimes kids do that, it's unrelated." I told him about how B had a hard time breathing and had to continuously take deep breaths all last spring while we were temporarily residing in Mississippi. He listened to her in his exam room (just by ear, not with any type of medical devices) and said "it's not asthma... it's unrelated to the OIT doses. She is probably just attention seeking."
Thinking back on all of that, I feel like an idiot for not getting a second opinion. But in looking back, each of these symptoms are probably due to acid reflux- which the doctor we now see, said was a probability during B's very first appointment with him.
We recently took B to a pediatric pulmonologist to rule out asthma (which can also display some of the same symptoms). She had a chest xray, computerized breathing test without albuterol and with albuterol- all of which were perfectly normal. The pulmonologist said her lungs looked and performed beautifully. He also agreed that her specific symptoms sound a lot like GERD.
Now I am in the process of trying natural remedies to help her. We've raised the head of the bed 5 inches, we've been giving her lots of fermented foods and cultured foods. I've bought chamomile tea for her to try. So far she hasn't had anymore middle of the night coughing fits. She still gets the weird sensation upon swallowing her dose (not every time, but frequently). She hasn't had chest pain in a few weeks. For now, we're just waiting to see if it happens again... which is frustrating.
If her symptoms do persist (because a change in her diet was not enough), we are considering chiropractics. If chiropractics do not help, we will then consider meds. I am contemplating taking her to a GI specialist so we can get a definite diagnosis- and no longer speculate about the acid reflux. But right now, it's the only thing that makes sense.
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