Need Information about PANDAS treatments

[TerriV]

I have an 11 yr old son who has been diagnosed with PANDAS for 1 year. He is regressing badly regarless of the treatment. We have had numerous antibiotics--discovered he was allergic to penicilins--cognitive therapy, removed the tonisils, taking depakote and seroquil. He is now raging anytime of the day versus just evening as before. He is developing new tics. He is paniced about going to school--has called for pick up twice because he just couldn't do it. He has lost 2 years of math skills and cannot write anything by hand. We are working on getting IVIG set up with Dr. K, but what do we do if the IVIG doesn't work? Any ideas?

 

Thanks

[Chemar]

Hi

you had posted this on our Tourette forum and so I have moved it to our PANDAS forum for you as you will get more responses here

[sosudden]

Mycoplasma? Viruses? Lyme? Has he been tested for these? IVIG brought our dd back from the edge of nonfunctioning. Almost 8 months post IVIG with Dr K. She has had a few flares. We have uncovered some stubborn "infections". She has developed POTS and peripheral polyneuropathy. BUT she continues to improve from the PANS. I'm not sure how she would be now without having the IVIG.

[Dedee]

You said you have tried numerous antibiotics, is he still on antibiotics? What is the longest amount of time he was on antibiotics? IMHO, he needs a long run of antibiotics, several months, maybe even up to a year. Also, he needs to be tested for myco p. When my daughter didn't recover from being treated just for her strep symptoms it was because she had an active myco p infection. She had horrible rages also. Sometimes a different antibiotic is needed for that. You said you are setting up IVIG with Dr. K, have you seen any other PANDAS / PANS specialist? IVIG can be very helpful, but usually you get the best results if the underlying infection is cleared. I would want to make sure there wasn't something else going on first. Finally, you can try some ibuprofen to help with inflammation. Give it 2-3 times per day and you may see some benefits. You need to give a pretty high dose, but because of that you can't give it for an extended period of time. Most say about a week but I was desperate and did a two week run before tappering off this last time. You need a PANDAS / PANS specialist ASAP. Best of luck.

 

Dedee