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Hi

 

Recently we had my son tested for Pandas we did the trot culture which was negative , the ASO (ANTI-STREPTOLYSIN O) TITER test was 284 which is slightly elevated, DNASE B ANTIBODY was 194 which they said was normal. My son has severe tics he twitches all the time he is telling me it hurts and I am searching for help for him. I convinced my dr to try the antibiotics so he is on amoxicyln for stret and as of now been on it 7 days. His episodes are severe and he cries to me to make it stop. Desperetly I asked what else we can do and we re given clonidine patch which has been on for 2 days. He is still not better at all it even seems worse. What other tests can I be asking for to be done? Please help if you have any clue as to what I can do next for him.

 

What tests do I need to request to see if this is Pitand?

 

thanks :-(

Edited by NEWARK
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Hello - I am so sorry you are going through this. Many of our children have reactions to infections other than strep.

 

We often see exacerabations with mycoplasma (walking pneumonia), sinus infections, staph infections, and with lyme disease. We also see exacerbations with viruses.

 

Regarding the ASO and DNASE B results - a single test really does not tell you much. It can take a while for the numbers to rise and then fall. ASO rises and falls before DNASE b. You need to have your child tested again in a week or two to see if the numbers are rising, falling , or staying the same.

 

If possible, you might want to contact a PANDAS specialist. There is a list in the "pinned threads" at the top of the forum.

 

Let us know what else we can do to help you.

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Hi--I am really sorry your child is going through this--I agree with Kimballot, that your best bet is to get in to see a doctor that has experience treating Ps kids. There are 3 within driving distance from you--pm me if you want their names.

 

While there is no specific "test" the treatment, if effective, should tell you something--and certainly 30 days worth of antibiotics is relatively benign compared to what you are going through right now.

 

Were the symptoms relatively sudden onset? If I were you I would be asking the same questions, and certainly at least trying 30 days of antibiotics to try and see if they help--

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Ditto to the encouragement to seek out a PANDAS specialist. Run, don't walk so you can get to the bottom of your son's symptoms. Psych meds can have paradoxical side-effects on these kids. Finding one(s) that works can be a crapshoot. It has been for us. I think clonidine never was a winner for us. Hop on the phone tomorrow! Encouragement sent your way! Dawn

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Please do not think that negative titers= no PANDAS/PITANDS. My DS is living proof. He's never had positive throat cultures or titers. He responded wonderfully to antibiotics and then IVIG. We know his first major exacerbation started two days after FluMist. He reacts when exposed to strep. He's got some kind of virus right now and has had no change in behaviors. I could not find help for my DS locally. We've seen two PANDAS specialists. I urge you to get your DS to one.

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Thank you for all the responses I have been bussy calling and emailing my Dr. I can not find a specialist on Pandas in my area that will take me as a new patient. But my current dr. which one is a neurologist and the other is infectious diseases dr and very open minded to PANDAS and are researching it with me and are open to any reasonable treatment that wont harm my son. We are going in for lots of blood work today thank u for the recommendation to the the 2nd round of strep tests. Goof idea.

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