Stephanie2 Posted January 12, 2011 Report Posted January 12, 2011 just got this result from quest on my 2yo, we ran this lab b/c of anaphylactic shock. interestingly, after going into major shock after putting a walnut in his mouth, he is not allergic to any nuts...medical mystery...severe, life-threatening urticaria? never heard of it.
tantrums Posted January 12, 2011 Report Posted January 12, 2011 urticaria is hives We've had similar experiences with DS in the past year. NO allergy test shows an actual allergy. Then we discovered it was actually serum sickness from antibiotics We thought he was allergic to shellfish when that happened in Maine. Nope - shellfish all fine! Our immuno says it's just the really messed up immune system getting confused What makes it scary is it's hard to know what if anything is actually causing an allergic response and when it might happen.
JAG10 Posted January 13, 2011 Report Posted January 13, 2011 Stephanie, What was the top of the normal range for that age and what was the 2 y.o. IgG and IgA? Just curious if you don't mind sharing the measurements. Thanks
Stephanie2 Posted January 13, 2011 Author Report Posted January 13, 2011 urticaria is hives We've had similar experiences with DS in the past year. NO allergy test shows an actual allergy. Then we discovered it was actually serum sickness from antibiotics We thought he was allergic to shellfish when that happened in Maine. Nope - shellfish all fine! Our immuno says it's just the really messed up immune system getting confused What makes it scary is it's hard to know what if anything is actually causing an allergic response and when it might happen. My 6yo has had urticaria before (for over a year, in fact it didn't go away until we started biomed tx), but it was never life-threatening. My 2yo had swollen tongue/lips/thousands of hives all over his face and torso, started to get wheezy but we caught that just in time. I have to carry an epipen now and I don't even know what he is allergic to. Can you tell me what serum sickness is? Both boys have been on plenty of antibiotics, so I guess this could be a possibility. Stephanie, What was the top of the normal range for that age and what was the 2 y.o. IgG and IgA? Just curious if you don't mind sharing the measurements. Thanks Sure! IgA 379 (ref range 24-121 mg/dL) IgG 1479 (ref range 533-1078 mg/dL)
P_Mom Posted January 13, 2011 Report Posted January 13, 2011 Wow...I have never seen such high IGA and IGG in a PANDAS kid! Usually (obviously not always)...those numbers are on the low end.
tantrums Posted January 13, 2011 Report Posted January 13, 2011 Serum sickness is an autoimmune response to a substance, usually a medication. In our case, Carter started with hives that got really bad. Then his feet swelled. We were on vacation and he had just eaten lobster for the first time ever. Went to the ER there and they just said to continue benadryl. We got home the next day and his hands were so swollen he couldn't move them. The hives were much much worse too. They gave him an epi shot and steroids. but they still said it was the lobster. Went to the allergist who did skin and blood testing for all shellfish. All came up negative. Now we had decided to stop doing long term ABX while on the trip so nothing more was thought of it. Then we did the Cunningham test and he came in at 169. Sooooo back to long term ABX. A week later - hives. Stopped the Zithromax right away. Hives went away. Then went back to Omnicef which is what he had in Maine. He got bad hives, then his feet swelled. Got steroids. Then the hives continued to get worse and his elbows swelled. Then out of the blue, he looked like he had been hit by a car! He was covered in black and blues so bad I couldn't help but panic and let him see it. We went to the ER and vasculities was diagnosed. It was diagnosed as serum sickness after the fact. Each episode gets more severe from what I'm told and we now have an epi pen as well.
Stephanie2 Posted January 13, 2011 Author Report Posted January 13, 2011 Serum sickness is an autoimmune response to a substance, usually a medication. In our case, Carter started with hives that got really bad. Then his feet swelled. We were on vacation and he had just eaten lobster for the first time ever. Went to the ER there and they just said to continue benadryl. We got home the next day and his hands were so swollen he couldn't move them. The hives were much much worse too. They gave him an epi shot and steroids. but they still said it was the lobster. Went to the allergist who did skin and blood testing for all shellfish. All came up negative. Now we had decided to stop doing long term ABX while on the trip so nothing more was thought of it. Then we did the Cunningham test and he came in at 169. Sooooo back to long term ABX. A week later - hives. Stopped the Zithromax right away. Hives went away. Then went back to Omnicef which is what he had in Maine. He got bad hives, then his feet swelled. Got steroids. Then the hives continued to get worse and his elbows swelled. Then out of the blue, he looked like he had been hit by a car! He was covered in black and blues so bad I couldn't help but panic and let him see it. We went to the ER and vasculities was diagnosed. It was diagnosed as serum sickness after the fact. Each episode gets more severe from what I'm told and we now have an epi pen as well. Oh my goodness, so are you saying that your pandas child cannot tolerate any antibiotics?
tantrums Posted January 13, 2011 Report Posted January 13, 2011 Yup - exactly what I'm saying. Scary concept, huh?
peglem Posted January 13, 2011 Report Posted January 13, 2011 Yup - exactly what I'm saying. Scary concept, huh? Yes, scary! Why do they think that is? I mean, it seems like that is a huge clue as to what is going on with your son, and potentially something that could lead to answers for him.
tantrums Posted January 13, 2011 Report Posted January 13, 2011 Waiting on a phone call from the immunologist to explain the test results. She did ANA and a whole heap of other tests. The took 12 vials, which was a mistake to do at once! She does feel though that she will have some sort of answer in there - and there were a few things flagged that she had suggested she was "hoping" might be so that she can get approval for IVIG. She feels IVIG will reset his immune system enough that he could try abx again. But she said she wouldn't touch ABX with him unless he's in a hospital at this point.
Stephanie2 Posted January 14, 2011 Author Report Posted January 14, 2011 Waiting on a phone call from the immunologist to explain the test results. She did ANA and a whole heap of other tests. The took 12 vials, which was a mistake to do at once! She does feel though that she will have some sort of answer in there - and there were a few things flagged that she had suggested she was "hoping" might be so that she can get approval for IVIG. She feels IVIG will reset his immune system enough that he could try abx again. But she said she wouldn't touch ABX with him unless he's in a hospital at this point. Wow, this is unreal! So, really our pandas kids are more at risk of being "allergic" to the very thing that they need the most! Scary! I don't think that is what is happening with my son, though. I kind of wonder if it has to do with LDN (low-dose naltrexone) which we had started shortly before this episode. I still have yet to ask our biomed doc about this...need to.
musicbuff Posted January 15, 2011 Report Posted January 15, 2011 urticaria is hives We've had similar experiences with DS in the past year. NO allergy test shows an actual allergy. Then we discovered it was actually serum sickness from antibiotics We thought he was allergic to shellfish when that happened in Maine. Nope - shellfish all fine! Our immuno says it's just the really messed up immune system getting confused What makes it scary is it's hard to know what if anything is actually causing an allergic response and when it might happen. Dear tantrums - What is serum sickness from antibiotics? Some sort of allergy to one of the (inactive) ingredients of the antibiotic? So immune system (in this case) got confused with the antibiotic??
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