Re: outbursts for unknown reasons ()

[Guest guest]

Hi and all in this thread,

I just read all the posts and yours in particular about your PANDAS

and found it very interesting.

I do have a young son who I am 80% sure he has it as well. We've

been working with a DAN Dr. for 4 years and although he's made

incredible gains, the PANDAS thing is still there and seems to mess

up things without warning. I had first suspected PANDAS a long iwth

my DAN dr. last year. We are finally trying to treat it again after

attempting to treat it in May 07 with Zithromax which was a total

disaster! He became absolutely unbearable--and believe me, I have

bucket-loads of patience, but at that time I thought I was going to

lose it altogether! So this year we tried again this time with

Keflex for almost 6 weeks, things were better with him overall, but

not incredibly better. We stopped the Keflex about a week prior to

going on a trip. Then the bomb exploded! Just a few days before

going on vacation, he became AFRAID of going into public restrooms.

The thing is he was fine during our trip except for this bathroom-

phobia thing that put a bit of a damper on our vacation. We tried to

deal with it as best a possible, and tried to remain positive but it

was not pretty. He would freak out when having to go into a public

restroom and we would literally spend about 20-30 minutes trying to

have him go in the bathroom and go. He would put a foot into the

bathroom and then run out. He is afraid of the automated flushing

toilets we now see mostly everywhere, but this phobia turned into any

public restroom, automated or not, no matter whether it was the men's

or women's. My husband usually will take him when he needs to go and

he had the hardest time ever. I thought he was going to have a

nervous breakdown about this. It became a real attention-getter: he

would scream, run out of the bathroom, have like an major anxiety

attack (his heart was racing 100,000 miles p/h!), sometimes fall into

the ground as if a tantrum, at times hand-flapping, jumping and

exhibiting strange hand gestures, and looking genuinely scared. He

is verbal although pre-conversational. I asked him why he was scared

and finally he mentioned something about the movie Monsters, Inc.

which he had watched very recently with his Dad on TV (although had

seem it in the past few years maybe once or twice). " He would say

there is nothing to be afraid of " " There is a monster in the

bathroom " ... So I am thinking that for the first time something in

the movie about a bathroom " clicked " in his mind and totally freaked

him out! He is 8yrs old now (ASD-HFA), so all I could do was try to

take him into the bathroom myself, and I had the same reaction from

my son as my husband did with the exception that I tried to work

through it by making him try to relax and by being way more patient.

But it wasn't easy and it made me incredibly frustrated as well. But

I had to keep being firm and not let him see me get way overworked.

This thing has taken a life of it's own!

Now, one small detail: My son has ALWAYS loved going into public

restrooms (or any bathroom that is not at home for that matter). In

fact, it was an obsession that was completely the opposite of what it

turned into now. He would want to go into the bathroom and spend too

much time in there checking out the stalls, playing with the soap

dispenser, the paper towels, you name it. So we would have to coax

him into making the bathroom visit much, much shorter than he would

have preferred. He has always had the bathroom obsession in one way

or another, and for a while while doing homeopathy for a year it was

almost gone, so we thought we had " conquered it " , but now it's turned

into something really undesirable. I have a call into his DAN Dr. to

see what else we can do, we are losing patience and my husband

definitely wants to medicate him, something I was hoping I did not

have to get into ever. I may have to go back to the homeopathy that

seemed to help so much in this regard. But money has become tight,

so it's always a guessing game: where do I go from here and how much

is it going to cost now?

We've done years of biomedical stuff: Valtrex, OLE, Diflucan, anti-

biotics, homeopathy, tons of vitamins, HBOT, behavioral therapies,

etc. and the way he is behaving in this regard seems to really feel

like we've gone 10 steps back now. I know it's summertime and he was

out of his routine, but how can you travel or really go anywhere when

you are going to have a screaming kid looking really odd when you are

trying to take him to the bathroom? We had to explain ourselves to

strangers because we were afraid someone would get the police

involved thinking we were trying to do something to our kid... This

can be so " public " ... All sorts of scary things went through our

minds when trying to deal with the drama about bathroom phobia (as I

now call it).

So reading your post and your experiences with PANDAS makes me see a

lot of similarities, but the question is how can I treat it once and

for all? My DAN Dr. said we would try the antibiotic Ceftin now,

since Keflex helped to some degree but then it plateaued. We have

even considered IVIG infusions for the PANDAS, but he is completely

normal in all Ig testing so our insurance will NOT pay for any of

these that can be way out of reach for many of us without any

guarantee that it may work at all for him. By the way his writing

and drawing skills are pretty bad which apparently can be a sign on

PANDAS. He also has other minor OCD-like behaviors that come and go,

but workable. It would be nice to get all of this cleaned-up someday

soon...because these will always (in my opinion) be a set-back and

whatever incredible gains he may have done over the past few years

will seem like nothing at all if things continue this way. I have to

find a better way for him to deal with any OCD-type behavior(s).

Any words of wisdom appreciated from anyone with experience in this

area. Thanks so much for your post ! Sorry for my long post.