Wow! What an awesome forum. I am so impressed with the level of knowledge and support. It feels amazing to have others "speaking my language". I have learned so much just from reading your posts. Thank you for all the time and effort that it takes!
My son is 10 years old and has been diagnosed with idiopathic anaphylaxis. He has had 4 anaphylactic episodes in the last 1 1/2 years. They have all started with stomach cramps. They vary some in intesity but the last one quickly moved from stomach cramps to diarrhea, itching, full body rash, flushing, angioedema, projectile vomiting, body shaking, and throat closing. I am SO thankful for EpiPens!!! There is also no rhyme or reason to circumstance, food, environment, time of day, time of year etc. He had one at 2am after taking his claritin and sleeping for 4 hours.
The doctors continue to look for an underlying cause for his IA and mastocytosis has been mentioned frequently but his tryptase level is normal and his ednoscopy/colonoscopy biopsies did not find an increase in mast cells. The doctors have done tons of testing and he does not appear to be allergic to anything he ingests or in his environment. He does have an elevated IgE level but only 239. I was told this is high but pretty typical for an allergic kid (which according to the tests, he isn't). He does have asthma (primarily virally induced) and has had mild eczema. His scope did show mild chronic gastritis. A CT scan of his abdomen showed some slightly enlarged lymph nodes but I was told that can just be a minor passing thing. It was suggested to be repeated but both the gastroenterologist and allergists are not recommending that now, due to the radiation exposure. Due to the risk/benefit analysis, they are also not recommending a bone marrow biopsy at this time. His other multitude of tests have been normal though we are still waiting for the most recent 24 hour urine test results.
His current meds are:
Flovent Inhaler 110 mcg twice daily
Prilosec (omeprazole) 20mg in morning
Claritin (loratadine) 10 mg in morning
Zantac (ranitidine) 150mg in evening
Xyzal (levocetirizine) 5mg in evening
Singulair 5mg in evening
Ventolin inhaler and EpiPen as needed
He is pretty stable right now. He does have frequent (near daily) mild flushing and stomach pain. Prilosec was recently added and if his stomach pain continues, they want to increase the prilosec to 2x daily.
His allergist sent us to National Jewish Hospital in Denver to be evaluated and they found the same...no allergies etc. The doc wants us to repeat testing every 6 mo - year to see if it is a disease that is slowly revealing itself. He also wants a tryptase level during anaphylaxis. Calvin is just starting puberty so it will be interesting to see how that affects things. His brother pretty much grew out of his asthma during puberty. We can always hope...
Although it probably is not at all related, Calvin was a miracle baby. He and I had a blood incompatability (Kell antigen) and so he had 4 inuterotransfusions and another transfusion when he was 3 weeks old. They also took him early (36 weeks) due to this and his lungs weren't developed. He had surfactant, c-pap, billi lights for his hyperbillirubinanemia and was in NICU for a week. He then developed milk soy protein intolerance (blood in stool) which he outgrew by the time he turned one (he was able to continue nursing
as I went on a special diet
). He has had recurrent stomach pain issues since and issues with constipation when he was younger. He did have some developmental delays especially speech but is all caught up and doing well.
We do have A LOT of auto immune issues in both sides of Calvin's family. My mother died from MS and my nephew has it now. I have another nephew with autoimmune hepatitis. Calvin has a brother and mother (me) with asthma as well as cousins and aunts with asthma. My 3 boys and myself all have some combination of asthma, eczema, and allergies. I have some medication allergies that are severe enough that I have an EpiPen for myself and I also have GERD. Calvin's dad has porphyria cutanae tarda (in remission), and hypothyroidism, and rashes/eczema as well as probable asthma. Calvin's dad has several immediate family members with allergies, GERD, two cousins with lupus and our niece, Calvin's first cousin, was recently diagnosed with mastocytosis based on increased mast cells found on her endoscopy/colonoscopy biopsies. This was very surprising as mastocytosis is so rare and Calvin's allergist has been suspecting it of him for some time (although his tests continue to be negative). His cousin's symptoms are quite different from his (no anaphylaxis). Calvin's allergist about fell out of his chair when I told him about Calvin's cousin being diagnosed with mastocytosis.
I greatly appreciate all the knowledge that I am gaining from this forum. I would welcome any insights you might have as well. Calvin is doing pretty well on a day to day basis but anaphylaxis is scary and so very unpredictable. It does make it hard to allow him to be a kid. I am a worry wart by nature and this just gives me fuel!
Thanks for reading!
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My son, Calvin (Read 4789 times)
