Lots of q's- my son stopped abx 4 days ago- going to pedi in 1 hou

[bulldog24]

I have thought my son (6) has had PANDAS since feb 2011. He has had a few tiny flares since his initial severe episode. they all went away.

 

my son (and daughter) had strep (culture and rapid positive) 2 weeks ago. He stopped keflex on sunday. I noticed the circles under his eyes and some more hyper behavior monday. well yesterday I noticed all of the things I had witnessed before. Excessive urinations, OCD, tics, anxiety etc.

 

its not severe as of now.

 

I am taking him to his pedi in an hour and hoping for some help. The pedi has not thought he had PANDAS. Mostly because his ASO titers were normal in feb.

 

I also had 2 pedi neuro's tell me its not pandas. One said he had adhd and the other said he was perfectly fine. I know neither believes in pandas.

 

The only person in the medical field that believes its PANDAS is his psychologist. He agrees completely with me.

 

I brought my son and dd (10) to the ENT for the recurring strep throat. They are both scheduled to have their tonsils and adenoids (sp?) removed in 1 month.

 

my q's-

 

Should my son have blood work like an aso etc drawn today? Wont it be positive no matter what because he had strep?

 

Will the tonsil removal help the PANDAS symptoms?

 

Should my son be on something for anxiety? He takes clonidine for sleep.

 

How do I deal with his school? He is in half day kindergarten.

 

He already has missed a few days due to strep and appointments and he will miss at least 5-7 days from his tonsil surgery.

 

HELP!!

 

Can someone message me dr. B from CT number?

 

any advice appreciated.

[airial95]

Based on the relapse of symptoms after going off abx, I would say that the PANDAS theory is a viable one. Our son is a textbook case, has had several rapid cultures and has NEVER had an elevation in titres. That is NOT a conclusive determination of PANDAS - positive history of strep (even in the abscence of titres) is suffecient to document PANDAS.

 

Tonsil removal may or may not help. The research is sort of 50/50. There are some papers out there that show complete remission with tonsillectimy, and I remember reading somewhere (sorry, at work, don't have the article links) that it's standard practice for PANDAS patients in Europe.

 

The challenge is - from what was explained to me by Murphy and our ENT (our son is getting his out in November), that since the tonsils still play an important role in the immune system, if PANDAS is the ONLY reason for removal, its success may be limited. More success from T&A has been seen in patients with PANDAS that also have the history of recurring infections seen in typical T&A patients. Our ENT put it this way - he won't remove the tonsils for a patient just because they have PANDAS, but if they have PANDAS, they are quicker to recommend T&A even if the other reasons are borderline.

 

Some parents here have reported terrible exacerbations as a result of T&A, and others have reported great results. My unscientific straw poll when I was asking about it was that the resarch trend holds among parents here - about 50/50. If you are going in for T&A, ask for IV abx during the surgery and a 30 day post op rx at a minimum, and 30 pre-op abx if you can get them to agree. I would also ask to have the tonsils cultured, not just for strep, but for other nasties as well.

 

As for something for the anxiety - we've never gone that route, so I have no personal experience, but others have reported mixed results. In many PANDAS kids, anxiety or psychotropic medications have very limited effect, and in some cases may make things worse. Basically, if you're not stopping the underlying immune attack on the brain, how much can they help. I think some have had success in using them in CONJUNCTION with their PANDAS treatments to also regulate the immune dysfunction.

 

As for school - we all deal with that wonderful hurdle. Without a medical dx, it may be difficult to get a formal IEP or 504 (some have had difficulties even WITH a medical dx!) But if you're concerned, I would pull some information together and have a discussion with his teacher. There's lots of good info in the thread pinned at the top of the forums.

 

Hope some of this helps, and good luck at the ped!

[bulldog24]

Thank you for your reply. I got an appointment with the PANDAS doc end of november. I sure hope we get to the bottom of this. There is no doubt in my mind its PANDAS.

 

My pedi is less than helpful. I got the "sometime in the future he may need ssri's like prozac for his OCD" Sighhhhh.

 

I also got " Why is he getting his tonsils out? He hasnt had strep enough, but I suppose its not a bad idea since this is what happens after he gets strep" But he doesnt think its PANDAS? He is getting his tonsils out for recurring strep throat. He fits all the "criteria" according to the ENT. The ENT said it was a qualty of life issue. PANDAS was hardly discussed.

 

Both of my older kids get strep like every 6 weeks, so they are both getting T&A the same day in november.

 

Do you think seeing the PANDAS doc 2 weeks after the surgery will be a bad idea? He NEEDS to go.