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advice needed


pr40
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Our dd 8’s PANDAS is more or less straightforward. After she started abx, we saw steady improvement over time. She has what seem to us as not terribly serious behavioral issues.

Our ds4 case, PANS probably, seems to follows a different route and I want to seek your insight about it. When he started on abx, the extreme of his behavior (meltdown after a meltdown) had disappeared. Now, we seem to be able to direct him and, in a way, discipline or educate him. But, every day, and every thing we do seems also to be taking us to the beginning as if he cannot learn or build on what he was able to do previously. We read Explosive Child and it taught us how to help him during the worst episodes pre-abx.

On abx, ds4’s behavior includes the following: 1) using deep or “other” voice 2) throwing things around 3) doing things others don’t want done 4) what seems to be willful disobedience 5) going around and cleaning. This while he is doing relatively well in school, where he is not as much of a disruption as he is at home.

I should add that he changes a lot in a small amount of time and that I cannot predict or understand those changes.

His blood tests done during the worst exacerbation showed nothing unusual, ASO, ANA Titer, DNAse, all normal.

We think he has PANS for two reasons: because his sister has PANDAS, and, second, because his behavior got out of hand during a horrible cough episode within a month.

He is currently on second dose of abx, Augmentin and Zytromiacin. When we stopped the first 30days of abx, penicillin, he had reverted to his horrible behavior which I have no other term for but out of hand or “crazy.”

We are not sure what to do and want to see if someone on the forum can recognize this behavior and give is some insight into it. Thanks in advance.

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It is not unusual for a child to do well at school and then fall apart at home. My daughter is an excellent student and then she would come home and rage all evening. I did not see in you list of lab results anything about Myco p. testing. This would be high on my list of testing especially if you are having issues with explosive behavior or rages which is what I think you are describing. Even though Zithromax should treat Myco p, my daughter did not really get better until she was started on Biaxin, that was when we started seeing the most improvement. I believe you need a more thorough work up. I'm not sure who your doctor is, but I would suggest one of the PANS specialist. Your kids do sound like they fit into the PANS category, but I would most definitely make an immediate appointment with one of the top specialist as soon as possible. Best of luck.

 

Dedee

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In addition to testing for chronic infection (mycoplasma, lyme et al), test for MTHFR mutations. Treating MTHFR imbalances turned my DD7 from evil, bipolar child to calm, happy child.

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We have an apt with Dr. B for our son in May which is a 6 month wait. So, I need to instruct his pediatrician what kinds of test to order. Is there a special name for the test for mycoplasma? The same question for MTHFR?

thanks for your replies, Dedee and LLM.

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