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PANDAS , help


kimwal
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This may be long, but I will try to keep it as brief as possible because I need some help!

My sons history:

He's 12. I knew he was adhd at the age of lets say birth??LOL. no really when he was a toddler. Absolutely no tics, or ocd symptoms at all.

Then at age of 5 almost 6 he had strep. BAM about 3 weeks later LIterally one morning he woke up ticcing, nonstop, and severe ocd. ITs been ###### ever since.

It has been up and down with meds, counseling etc.

*What we'e done since*

WE first stared trying meds. Some worked others didn't.

We then found a neuro and I found out about PANDAS. We did the strep titers testing and it was high in whatever it is that suspects pandas. We still didn't know what to do. Eventually later, we tried steriods, nothing. We even tried IVIG. Only one time at a low dose. NOthing.

Before all of this we tired everything, feingold diet, vitamin, supplements, no sugar, no wheat, milk, food colorings, allergy testing..... avoided what it said, nothing....

* So here we are again, back on meds, 3 to be exact. THe tics are now under control. I don't know if its due to the meds or just the wax and waning. He has very bad vocal tics. He has corpralia very bad when his tics are bad. He also has motor tics as well. Some of his doctors have even said that he has a very severe case of TS.

* I;m not sure how much his present doctor knows about PANDAS, we had to switch from his last neuro because he got really freaky about "sin" being involved the TS, etc.

This is the weird part. WE do have ts , ocd in the family. However it did not come out in my son until he had the strep......

Somehow I feel that with the PANDAs that maybe it could something inherited too. Like a some malfunction in the immune system passed down that is susceptable to strep or similiar infections.

Anyway, what should we do now? I would like to get him retested for pandas/strep.,

How do we do this?? Can I send off for the test myself??

ANy new updates out there about pandas??

THANKS A BUNCH!!!

Kim

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Hi kimwal

 

I am working at present so dont have much time to post details but

 

the ONLY thing that will help if this is PANDAS is long term antibiotic treatment with the correct antibiotic.

 

I am amazed that steroids were used as they make tics and OCD WORSE!!

 

supplements etc are not going to work properly if this is PANDAS and so FIRST the strep needs to be treated

 

It is really sad that the doctors are putting you through all this when an antibiotic is needed. Ronna has done a lot of posts on this as to which antibiotics are best as not all work as well.

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