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LMama

question about cunningham test

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Hello. My 6 year old son just recently had a mild exacerbation of vocal and motor tics and mild ocd after an ear infection (no strep). He was on a 10 day course of abx, and currently has very mild throat clearing and hopping. Symptoms are almost resolved.

 

His symptoms are thankfully very mild.

 

We sent his blood in to Dr. Cunningham. His results just came back. His level was 137. They told us that 91 is normal, and that 120 and up is positive. My son's symptoms have been super mild on every occurrence except for the first episode when he was about 4 and a half. His symptoms also always seem to be responsive to antibiotics.

 

Does anyone know what I can take away from that 137? Can I take that to his pediatrician as support for the PANDAS diagnosis? His pediatrician has begun to suggest that perhaos we are dealing more with either tourettes or child onset ocd.

 

Also, should this be support that he needs a longer course of antibiotics? He had 10 days of amoxicillan.

 

Any answers are greatly appreciated. Thank you. I always find this forum to be so supportive.

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Hi, LMama:

 

Every child's situation is different - and I don't want to be alarmist - but personally, I'd try to pursue prophylactic abx to protect against future infections. Has your ped checked your son's ASO and Anti-DNAse B titers? If they remain elevated or rising, that's a warning sign that strep is still lurking.

 

The reason I'd suggest considering prophylactic abx: each of our son's PANDAS exacerbations became more severe, longer, and more resistant to treatment. Other parents have reported this pattern as well. Dr. Cunningham and other PANDAS experts have called PANDAS "rheumatic fever of the brain," and long-term abx are the standard of care for RF patients, sometimes for decades.

 

Just one perspective. Good luck!

Edited by Worried Dad

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Thanks for your perspective. We just don't know what to do, but that is EXACTLY what my worries have been... that these exacerbations will get worse with time. I am certainly open to trying to pursue the route of prophelactic abx. I hope that with the results of this test, perhaps our pediatrician will be open to this. Thanks again.

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When my 6 year old son starting to spit out his food his CaM score was 136. It was treated with antibiotics and a month long taper of steroids. He will be on an antibiotic until his 20's. He is in complete remission. Early diagnosis means easy cure.

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When my 6 year old son starting to spit out his food his CaM score was 136. It was treated with antibiotics and a month long taper of steroids. He will be on an antibiotic until his 20's. He is in complete remission. Early diagnosis means easy cure.

 

Wow. That is incredible. How often does he take the abx, and does it cause any stomach problems?

 

Also...So is it safe to say that with a score of 137 he DOES have PANDAS and not tourettes or child onset ocd? Our pediatrician does not seem to know a lot about PANDAS, but has been open to learning.

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Hello. My 6 year old son just recently had a mild exacerbation of vocal and motor tics and mild ocd after an ear infection (no strep). He was on a 10 day course of abx, and currently has very mild throat clearing and hopping. Symptoms are almost resolved.

 

His symptoms are thankfully very mild.

 

We sent his blood in to Dr. Cunningham. His results just came back. His level was 137. They told us that 91 is normal, and that 120 and up is positive. My son's symptoms have been super mild on every occurrence except for the first episode when he was about 4 and a half. His symptoms also always seem to be responsive to antibiotics.

 

Does anyone know what I can take away from that 137? Can I take that to his pediatrician as support for the PANDAS diagnosis? His pediatrician has begun to suggest that perhaos we are dealing more with either tourettes or child onset ocd.

 

Also, should this be support that he needs a longer course of antibiotics? He had 10 days of amoxicillan.

 

Any answers are greatly appreciated. Thank you. I always find this forum to be so supportive.

 

JMHO... as a parent who has onset and complete remission ruffly 15 times..this last onset is lasting..

And back up info first camk 105 son still did not present as normal..nor to me was his cam...if normal is 91..this is where i like doctor K ...as he does not relay on this test..more on history and information from parents..

 

son was completely regular kid prior to the onset.. 7 months later we did the draw....(and to note son was on taurin 2x aday for 3 months prior..it effects cam level)...then did the draw like i said..yes he was better but not right..then as time went on, he was worse and his camk went to 160..doc L said when i explained his condition, had full chorea movement(thought we had just ended taper when we saw her)

 

So i guess what i am saying is 105 IS NOT NORMAL...and if not corrected to normal, could well elevate again..it would mean..just like lyme..if its not normal...its not normal..I BELIEVE..you want to eradicate it like you would lyme...otherwise flairs will continue..i want complete remission like had gotten the prior 15 times before..then check camk to see if its 91

 

NOw for DS it is just harder,,probably age,the number of infectons, and i 100% believe this last onset was from Myco p and as doc L and T have gone on about on invase this mircobe is..system is in over drive like an asthma attack.

 

So in my long winded way....you have pandas/pitands until the number is normal...and would take that to the bank!!!!!!!!

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In our personal experience, being on a 10 day only course of antibiotics was a nightmare roller coaster and I'll never be able to shake the nagging questions of "what if we'd been more aggressive sooner?" Maybe nothing would have changed.

 

I do know life got so much more bearable once we were in the care of a Pandas literate doctor who wasn't afraid to be aggressive. My son is not yet cured. For us, long term antibiotics have helped, but haven't been the whole answer. But is that because we didn't act fast and hard in the beginning? Or is it just an individual thing? Will never know.

 

In the beginning, my son responded quickly to antibiotics, so long as we treated at the first signs. If the horse got out of the barn, 10 days of antibiotics wasn't enough (but was all we could get). My advice - get to one of the Pandas literate doctors. They will take a Cunningham score seriously. At least then you'll have the medical support you need, which for us was more than half the battle.

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Our drs (one PANDAS, one mainstream) has said that ear infections are typically caused by strep. Just food for thought.

 

My 6 year old son just recently had a mild exacerbation of vocal and motor tics and mild ocd after an ear infection (no strep).

 

Edited by justinekno

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When my 6 year old son starting to spit out his food his CaM score was 136. It was treated with antibiotics and a month long taper of steroids. He will be on an antibiotic until his 20's. He is in complete remission. Early diagnosis means easy cure.

 

Wow. That is incredible. How often does he take the abx, and does it cause any stomach problems?

 

Also...So is it safe to say that with a score of 137 he DOES have PANDAS and not tourettes or child onset ocd? Our pediatrician does not seem to know a lot about PANDAS, but has been open to learning.

 

He takes augmentin twice a day. He also takes two probiotics a day. No stomach issues. He didn't have any tourettes symptoms, only OCD. My other son has PANDAS and that is why is why diagnosed so early. I am 100% sure it was PANDAS. He has no more symptoms. I don't believe in child onset ocd after a strep infection. Especially when it is acute.

 

I think your child does have PANDAS. I wouldn't take any chances. Ask for the tapered steroid and antibiotics.

Edited by PhillyPA

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When my 6 year old son starting to spit out his food his CaM score was 136. It was treated with antibiotics and a month long taper of steroids. He will be on an antibiotic until his 20's. He is in complete remission. Early diagnosis means easy cure.

 

Wow. That is incredible. How often does he take the abx, and does it cause any stomach problems?

 

Also...So is it safe to say that with a score of 137 he DOES have PANDAS and not tourettes or child onset ocd? Our pediatrician does not seem to know a lot about PANDAS, but has been open to learning.

 

He takes augmentin twice a day. He also takes two probiotics a day. No stomach issues. He didn't have any tourettes symptoms, only OCD. My other son has PANDAS and that is why is why diagnosed so early. I am 100% sure it was PANDAS. He has no more symptoms. I don't believe in child onset ocd after a strep infection. Especially when it is acute.

 

I think your child does have PANDAS. I wouldn't take any chances. Ask for the tapered steroid and antibiotics.

 

I appreciate everyone's input so very much. This forum has always been so informative, and you are all so supportive. Thank you!

 

So is there a resource somewhere that has a treatment protocol that I can give to my pediatrician, or should I just tell them what I am learning here?

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Wow, this thread has been great for me. We are taking my daughter to Dr. Rao in Plano, TX

to be evaluated next week. Her CamKinase was 139. I'm glad to know it's considered PANDAS level,

and hopefully ABX will help.

 

God bless,

Holly

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