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Post IVIg 3.5 weeks


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3 replies to this topic

#1 cobbiemommy

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Posted 14 July 2012 - 07:51 AM

We are about one month out from the IVIg and there are some symptoms I did not see the first time around (2 years ago). His face is DRY and a bunch of dry skin is falling off. EWWW... It is normally very even and moist. His scalp is shedding dandruff flakes like a shampoo commercial and he has had a rash on his hands which is bumpy but not red. He had a red rash all over his chest, arms, and back. They look like milia bumps. I am back to giving him Benadryl which seems to have helpded the bumps on his hands.

I know there can be reactions to IVIg, but I just didn't realize it would be to this extent. I am glad this is during the summer months because kids at school could be really cruel about this. Dr. B used Gammagard at 2.0 mg/kg where Dr. K used Gammunex at 1.5 mg/kg.

So far, no behavioral healing but the red cheeks are gone and the fluid in his ears is greatly reduced. Watch and wait is very hard!

Cobbie

DS, was sick off and on 12 times for the first 24 months of his life, sinus and ear infections and then diarrhea from abx.  He developed normally and hit all milestones.  At age 4, something changed and he was not the same.  He was clingy, would pick his fingernails and toenails, would not go to sleep by himself.  Argumentative with his sister.  Diagnosed with Asperger's at age 6.  His IQ is very high, but his processing is slower.  We tried social skills therapy, behavior modification therapy, medication for ADHD, depression, and anti-psychotics (those were the worst, we quit that ASAP) with little to no benefit.

 

At age 10, I stumble on the book Saving Sammy.  While our symptoms were not the same, there were enough similarities for me to pursue treatment with Dr. K.  Within one week of his first IVIg we had remission.  He has had four IVIg to date, and been treated with IV abx for Lyme/Bartonella.  He has very few strep antibodies, despite being vaccinated and receiving IVIg.

 

He is still having flares after infections at age 15.  He recently had a sinus infection and went through two rounds of antibiotics with a nasal spray abx as well.  Day three always seems to be the day the inflammation kicks in and symptoms return.



#2 kiera

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Posted 14 July 2012 - 08:45 AM

My ds got a rash 2wks post IVIG, it was itchy and on the palms of hands and soles of feet. After a few days it started to peel (sorta like blisters) and left these red circles where the new skin was. I was wondering if it was Hand, foot and mouth disease (coxsakie virus) but a mild case of it as it is going around. Also you can get the rash all over in severe cases and usually sores in and around the mouth. I was also wondering if he got it from the IVIG or just picked something up! We'll never know, it's gone now, but not much improvement in behavior and I was wondering if this was a virus maybe that's why, it triggered more autoantibodies? All speculation on my part though!!

#3 minimaxwell

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Posted 15 July 2012 - 05:30 AM

My DD has peeling skin on her hands, kind of bubbles then peels. Not painful or itchy. Didn't give it much thought until the other day. Dt T sent me an article this week about Coxsakie, some of his patients are turning up with it. My DD has had 2 episodes of Pancreatitis and this article made a link to coxsakie so he wanted her tested. Results will be in Monday.
DD18 undiagnosed PANS for 10yrs. Dx 1/12. Had 2 lVlG's 80% better!
DS 14 Happy and healthy but has Celiac.

#4 cobbiemommy

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Posted 15 July 2012 - 05:42 AM

My DD has peeling skin on her hands, kind of bubbles then peels. Not painful or itchy. Didn't give it much thought until the other day. Dt T sent me an article this week about Coxsakie, some of his patients are turning up with it. My DD has had 2 episodes of Pancreatitis and this article made a link to coxsakie so he wanted her tested. Results will be in Monday.


Dr. B tested for that but it came up negative. Could it be that his nose is peeling because the intracellular strep is gone? Just like when the hands and feet peel, the nose could peel? It is only his nose and right around it, including the upper lip. The inside of the nostril is where Dr. B found the infection.

Cobbie

DS, was sick off and on 12 times for the first 24 months of his life, sinus and ear infections and then diarrhea from abx.  He developed normally and hit all milestones.  At age 4, something changed and he was not the same.  He was clingy, would pick his fingernails and toenails, would not go to sleep by himself.  Argumentative with his sister.  Diagnosed with Asperger's at age 6.  His IQ is very high, but his processing is slower.  We tried social skills therapy, behavior modification therapy, medication for ADHD, depression, and anti-psychotics (those were the worst, we quit that ASAP) with little to no benefit.

 

At age 10, I stumble on the book Saving Sammy.  While our symptoms were not the same, there were enough similarities for me to pursue treatment with Dr. K.  Within one week of his first IVIg we had remission.  He has had four IVIg to date, and been treated with IV abx for Lyme/Bartonella.  He has very few strep antibodies, despite being vaccinated and receiving IVIg.

 

He is still having flares after infections at age 15.  He recently had a sinus infection and went through two rounds of antibiotics with a nasal spray abx as well.  Day three always seems to be the day the inflammation kicks in and symptoms return.





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