PANDAS OR TS?

[BethM33]

Thank to my friend Vickie for pointing me toward this website!

I'll try to sum it up as fast as I can... I just need help figuring out what's going on with my son....

 

My husband and I have a son, Peyton, who in 2007 (when he was 3) was diagnosed with PANDAS syndrome. I had never heard of this before! He had recurrent strep, etc. and then began making strange facial gestures, eye movements, etc.\

His dr. sent him to a ped. neuro who determined he has PANDAS.

Well, we have read alot since then, about this disorder.

We know that the tics can come and go, etc., but Peyton's tics change every time they return. It's never the same tic twice.

I have read that this can be tourettes?? I'm starting to wonder now, if he has PANDAS or TS???

The last month, Peyton's been looking to the side with just his eyes, as far he can, then he shuts his eyes and jerks his head a little.

It started off as just looking to the side when telling me things, but then it moved to the head jerking and as of yesterday, he is now shaking his shoulder and arms as if he had a chill, while he looks to the side.

I have taken him to the dr. to get checked for Strep and Flu, etc, because I know his tics get worse when he has an underlying illness. They said he was 100% fine!

So my question is, WHY the increase in the tic and why is it getting worse and worse???

Usually his tics last a few days or weeks, then are gone for a few weeks or even months, then they come back either by him making noises or doing gestures. This tic, however, has stuck around and just progressively becomes more involved.

I've called his dr. over and over and they sent all of his papers to the top ped. neuro. in our state (the one who diagnosed him 2 years ago), but they said the neuro. cannot see him until APRIL!!!

I can't possibly wait that long.

Can someone give me any idea what might be going on with Peyton???

I will say this.... He is 100% perfect social wise. He engages people when you speak to him, he is funny and sweet and incredibly smart. Has lots of friends, is very social and loving and caring and very interested in the entire world around him.

On the flip side...

He does have some OCD tendencies in that he can get into a pattern of things and stay that way, but it's not severe.

Also, when he has fits, it is IMPOSSIBLE to reason with him or get him to stop crying or doing whatever he's doing, cause once his mind is made up, there is no stopping him. Usually he has to just go to his room and cry it all out, then he's fine. When he was much younger, I noticed that his "tantrums" seemed WAY more difficult than what our older son ever had. Peyton was always more difficult to get through to and more difficult to distract and get him to stop crying, etc.

We would have to just basically wait it out as NO reasoning was going to stop him.

As he is now 5, he does cry A LOT when he's upset, when he doesn't get his way, etc., but he is a little easier to deal with, the older he ges.

Is this part of PANDAS???

ANY advice from y'all would be greatly appreciated!

Meanwhile, we're still going around and around trying to get a Neuro. Dr. to see him NOW!!!

***sigh***

[faith]

Beth,

your son's description sounds very much like mine symptom wise and behaviorly, altho my son is now 10, but I remember it all. I'm only in the beginning of my search, so I can't give any great advice right now. But that is really messed up that a neuro is so busy that he has no appts. for 6 months? you know, my regualr ped neuro is kind of like that, you have to book so much in advance, its kind of rediculous, they can't be the only game in town. I'm not talking to this guy about PANDAS tho, he was just our neuro for the sake of having a neuro back a few years. Could that office recommend someone else, tell them your desparate. maybe you can beg them to squeeze him in somewhere, embellish his symptom and maybe they will let you come in. Maybe someone will answer about a doc in your area. have yo checked the "doctors thread"?

 

Faith

[BethM33]

Thank you Faith!

I am currently trying to get him in with someone else, but am getting no where fast.

It is SO discouraging to not be able to get him seen NOW.

I'm checking that thread, but so far, no other MS docs...

Thank you for your help though, Faith! It helps to know we're not alone...

[thereishope]

Hi. Welcome! The lack of reasoning, esp during a PANDAS episode, is pretty common. I learned when that happened, you had to just let them go through it. I also did not ever punish him when it was obviously PANDAS. To me, it was out of his control. Actually his reasoning resurfacing was one of the signs for me that his PANDAS exacerbation was reaching a tail end. I remember the days whne he would raise his hand to hit, then stop in mid air and lower it or when I would say I would take a toy away and he'd pause and ask "which toy?". That wouldn't happen when PANDAS was full force.