Could my 9yo son have PANDAS?

[mumofone]

Hi everyone,

This is my first post here. I'm learning so much from all of you but need some help please. We live in Australia and we have a 9yo son with autism and we believe perhaps he may possibly have PANDAS too.

He regressed into autism following 2 viruses at the age of 15.5 and 16 months. Each virus lasted 7 days. I have no idea what kind of viruses they were, he had fever and vomiting and very little apetite.

Immediately following these 2 viruses he lost quite a lot of weight and became very sensitive to bright lights and loud noises. He started becoming anxious about everything, would become very upset if I would leave the room, started lining things up, started opening and closing doors and flicking light switches on and off continuously, started losing speech, food that he'd previously loved he no longer wanted to eat. Started losing interest in adults, and then eventually stopped wanting to be around other kids too. By 20 months of age, we'd completely lost him, he had become completely withdrawn.

We have been on a biomed protocol (special diet and a few supplements) since he was 20 months of age and although he has made some advancements, we've not really seen many improvements. He is very sensitive to most foods and smells and chemicals. His food needs to be prepared exactly the same way day in, day out.

Where we have been for the past few years is he has rages and meltdowns daily, everything needs to be perfect and just right, he is always checking that things are exactly as he left them, he has vocal tics where he will just scream out at the top of his voice for no reason, he has other funny little vocal sounds and movements that he does at the end of each of his yawns for example (same sound/same movement every time), he keeps checking to see that certain light switches are off, he has made us tape down many power points and switches that control fans or airconditioners etc and he keeps going back to ensure that they are still taped down whenever anyone walks anywhere near them, any books that have even the tiniest tears in pages he will want us to fix/tape immediately. He has been obssessed with The Wiggles for 7 years now. Morning till night he just spends obssessing over The Wiggles. Chairs around our dining room table need to be not touching the table, ie there needs to be a space between the chair and the table. In fact there needs to be a space between most things (furniture and walls, bathroom scale and the wall, books and bookshelf, pretty much there needs to be a space between everything). He checks to ensure furniture is positioned in the exact position every day. If anything is moved even a few millimetres either way, he will put them back to where they were. He will only wear long sleeved tops and trousers (never short). Does not like us rolling up our own sleeves either or wearing short sleeved tshirts or shorts. Cupboard doors and drawers need to always be closed. Seatbelts in car must be on the second we get into our car. Windows must be up. Sun visors down. He won't let us switch on windscreen wipers when it rains. He won't let us switch on ceiling fans at home (most asd kids LOVE them which is a bit unusual that he doesn't let us switch them on).

A Great Smokies Lab test at the age of 2 showed he had 4+ for both types of strep however his doctor at the time did not choose to treat it. Since then we've had about 8 fecal tests and each test has shown that he has continued to have high strep in his stool all this time.

A couple of years ago his strep serology showed ASO 244 (ref range <240) and ADNase B 250 (ref range <170).

Last year it had dropped to ASO 148 and ADNase B 185.

We found ourselves a new doctor a couple of years ago, and he put our son on Erythromycin (Zithromax) to see if it would help, but it did not. We actually saw nothing during the 10 day course, however by the end of it, we had lost all eye contact and his behaviours became worse. Turned out he had a yeast infection, so we treated the yeast and things went back to normal (as normal as they were before AB's).

A couple of months ago, following a particularly terrible few weeks of rages, and the results of our most recent fecal test showing high strep again, our dr put my son on a 10 day course of penicilin. We also had Diflucan on board this time. On day 8 our son calmed down and stopped slamming doors, and kicking walls, and hitting out, and seemed much happier. He was probably the calmest and most placid we have ever seen him in 7+ years. Then on day 10 we stopped the AB's and on day 11 he started meltdowning and hitting out again and slamming doors again. So our dr put him on another 10 day course of penicillin and at about the 8 day mark again, he calmed right down. Again we stopped on day 10, and on day 11 the behaviours all started up again. So the dr then put him on a 30 day course. We are now on day 20 day and we have had no meltdowns or rages or bad behaviours since a few days into this round. The vocal tics and a couple of his OCD traits seem a bit worse however? but his behaviour is much better on the whole. School are reporting that he is settled and compliant every day.

Our doctor is not a PANDAS dr, however he was the one who suggested the AB's to treat the gut strep, and is very willing to help us find a solution for our son.

Any advice for us? Does this sound like PANDAS? We are on 250mg tid penicillin. Does this sound OK? If we were to stay on this dose long term, would that mean weeks, months, years? We are completely new to PANDAS, any advice is really appreciated.

Thank you! and sorry so long.

[Chemar]

Hi and welcome

 

I will bump up your posts so others can respond

[Ozimum]

Welcome! Glad you found us.

Sounds like your DS is responding to the antibiotic which is a pretty good sign there's an infection involved. The antibiotic can also have an anti-inflammatory effect. It's great that your dr is supportive!

I'm in Australia too. I've sent you a PM (private message) - see the top right hand corner of the screen and click on your user name.

[3boysmom]

Not sure about it being PANDAS, but viruses are being looked at for triggering many things. I read an article that some country was doing research on the improvements of AU kids when given high doses of antibiotics. I'm glad your child is calming however that alone may not confirm PANDAS.... But.....?