After 2.5 years....remission is over :(

[sebrown1126]

My son had IVIG in March of 2011, and after a long recovery from the IVIG, has had more than two great years. Unfortunately, this winter has taken its toll, and PANDAS symptoms are back (mostly anxiety, obsessive fears, and some defiance).

 

I am really struggling because the physician who was treating him is no longer practicing medicine, and since I thought this was behind us, don't have a physician who understands PANDAS who is willing to write a script for antibiotics. His throat doesn't hurt and he likely won't test positive for strep, so I can't get a script from urgent care.

 

Until I can find a physician, I need to keep him as stable as possible. We are doing Benadryl to bring down histamine, Motrin for inflammation, and are upping his prophylactic penicillin (we had backed off to one daily instead of twice).

 

Are there any other supplements that I can use until I can get my hands on a script for Zithro? He currently takes GABA, magnesium, Inositol, and Olive Leaf Extract.

 

Has anyone else been in remission that long after IVIG and then PANDAS came back? Was it hard to get them back to normal without another round of IVIG? My son is old enough that he knows what's happening to him and it is VERY hard for him emotionally to have the PANDAS symptoms back.

 

Thanks, Sara

[pr40]

oh, I am very sorry. it must be very difficult to see him again with PANDAS. You know the ropes very well and there isn't much to add except perhaps gut issues, probiotics, and fish oil.

I hope you can get zythro asap. one thing has changed in the last two years, drs from NIH might be willing to talk to your local pedi and suggest a return to the treatment that was successful for your son before.

best of luck

[sebrown1126]

How do I talk to doctors from NIH? My local pediatrician is afraid to treat because he feels it is outside his speciality, But if he had an AOK from a NIH doc, that would help a lot.

[dcmom]

My kids have both had long remissions (1.5 years) only to have pandas return. We look at this as an autoimmune disease and assume that it will come back- so we can prepare ourself. We have found that fast and aggressive immuno treatments are what is needed for my kids to recover. We have not had a full resolution of symptoms without steroids or PEX (haven't done IVIG). My advice would be to put ALL of your resources into finding a doc that will treat PANDAS appropriately.

 

Good luck!

[kleek3]

I'm so sorry for the return of symptoms. You remind me to stay vigilant - even when you think things are calming down. I believe that if you had success once, you WILL get there again. Best of luck getting your hands on ABX that will help your son.

 

All my very best to you and yours.

KK

[pr40]

why don't you make another post about how to contact NIH to get help with local dr and you might find first hand experiences?

I've heard that she responds to email. swedos@irp.nimh.nih.gov

here is here web page:

http://neuroscience.nih.gov/Lab.asp?Org_ID=448

[JoyBop]

The docs are very responsive to all calls and emails. Just send dr swedo a message at the above address and you should get a call from the nurse practiontioner with in a few days. If you have documentation from your last history that would be helpful for them I'm sure. I woukdnt hesitate to call them. Also if you mention where you are located perhaps some people from your area would chime in and make a recommendation for a pandas doc near home.

 

I'm SO sad to hear that it can come back after such a long time in remission. Please tell us how old he child was at onset, how long he suffered and how old he is now.

 

I hope you are able to get the help you need for him fast.

[Missmom]

I just want to say, maybe tell the urgent care docs that because rapids are not that accurate and throat swabs can also not get enough bacteria, that you request them to run streptozymem ASO and anti DNase bloodwork. Our pedi did not believe what my son had was pandas until he ran the bloodwork. He had never treated pandas before, but after seeing my sons tics which started overnight, and running the bloodwork he admitted it was pandas. He then sought out advice from other doctors on how to treat this until we were able to get into a specialists office. The urgent care docs will sometimes be more willing to run the labs because they are just billing you for services at the time and don't really have to continue with treatment. This might get you a month or two of abx until you get into a specialists office. Just a thought.