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Question about Immunodeficiency?


Guest pandas16

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Guest pandas16

Does anyone know what causes immunodeficiency? Does PANDAS happen because of it or does bacteria/viruses cripple the immune system and cause it? or is it just an unlucky genetic condition? I'm not immunodeficient but does having PANDAS put me at risk for that? Did your kids always get sick before PANDAS started? Any opinions would be appreciated.

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I can't provide any insight to your question, but I can tell you it is the one thing that is perplexing everyone in our son's case (including Dr. Murphy's office). Our son has had 9-10 strep infections (throat, impetigo and nasal) over the last 18 months - 15 of which he was on some level of abx (full or proph dosage).

 

The perplexing part, not only has he never shown elevated strep titres (even with postive cultures), both the the immune panels they ran on him came back not just normal, but wonderful - even showing a strong immunity against strep AND staph of the skin (even with several confirmed imptigo infections!)

 

We've been refered to the immunology department at All Childrens in St. Pete and will go for our first appointment there in September. He's not immunodeficient, but he also shouldn't be getting strep as often as he is either.

 

I have an autoimmune condition - ankylosing spondylitis - and it is genetic. If that has anything to do with my son's condition - who knows. I know Murphy has published information relating autoimmune conditions in the mother with incidences of PANDAS in children.

 

Prior to his onset of PANDAS, my son was not real sick. He had a couple of ear infections when he first started day care as an infant (par for the course) with no complications or major recurrances. Then he had one impetigo infection at about 19-20 months old - and that was the beginning of the end - his behavior and personality rapidly deteriorated from there when we finally acknowledged it wasn't the "terrible twos" and got a PANDAS dx 6 months later. Since then, like I mentioned, he's had 9-10 infections in the 18 months since dx - and with the exception of the impetigo - he has been asymptomatic for all of them. No fever, sore throat, nothing - just behavioral changes.

 

Fortunately, my huband and I, as well has his teachers, have become so fine tuned to his "triggers" that most of the time we have him in the pediatrician's office (who is AWESOME with PANDAS) before the spiral is too bad - our son is also extremely sensitive to exposure - usually having a 3-5 day flare of symptoms when he comes into contact with someone with strep. (He's usually starting to wind down when we get notified of strep in his class!)

 

LIke I said, I know this doen't shed any light on your situation - but you're not the only one without an immunodeficiency fighting this battle!

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Does anyone know what causes immunodeficiency? Does PANDAS happen because of it or does bacteria/viruses cripple the immune system and cause it? or is it just an unlucky genetic condition? I'm not immunodeficient but does having PANDAS put me at risk for that? Did your kids always get sick before PANDAS started? Any opinions would be appreciated.

My son overall has an excellent immune system though Dr. T did see some problems in my son's t-cell subset test that showed some immune deficiency. All of my son's other bloodwork was good. My son has never been sickly. I can't even ever remember him having a severe sore throat. Other than well visits, he had only been to the doctor once before PANDAS. He never missed school before PANDAS. Even at his worst with PANDAS last October, his overall health was very, very good. I don't know why my son has PANDAS, but his great-grandfather died of rhematic fever, so perhaps it is genetic. Or maybe he has lyme/bartonella that led to the PANDAS. That is what we are at least pursuing now. It seems worthwhile to at least try the lyme antibiotics as we used to live in a heavily wood area that we affectionally called our 100-acre wood (after Pooh Bear).

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Does anyone know what causes immunodeficiency? Does PANDAS happen because of it or does bacteria/viruses cripple the immune system and cause it? or is it just an unlucky genetic condition? I'm not immunodeficient but does having PANDAS put me at risk for that? Did your kids always get sick before PANDAS started? Any opinions would be appreciated.

 

Not a doctor and will not pretend to know the answer regarding strep and the immune system. There is an emerging field of study (or perhaps just new to me) regarding MCIDs (Multiple Chronic Infectious Disease Syndrome) where they note that bacteria can lower the immune system response. I've not read it in a while but is seemed to me that the immunodeficiency is more a symptom of the underlying infection vice a genetic condition (if that makes sense).

 

bill

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