getting lost and not sure where to go

[mama2alex]

I can't imagine how hard it was to hear that your appointment had to be rescheduled to next week! I remember when my son was at his worst, just waiting for appointments was tough, but we never had one cancelled!

 

You should be in good hands with Dr. Latimer, from what I've heard on this forum, but it does sound like you have a complex situation. It sounds like it definitely could be PANDAS, but there's more going on. I agree with seeing a DAN doctor in addition to Dr. Latimer. DAN stands for "Defeat Autism Now" which is a protocol developed to treat the underlying medical issues of autistic children, including food allergies/sensitivities, leaky gut, toxicity, yeast overgrowth, low level viral and bacterial infections... the list goes on. Often when these medical issues are treated the child's autistic symptoms (communication difficulties, etc) improve dramatically or resolve to the point where they lose their diagnosis of autism. I went to a DAN doctor some years back when I had Chronic Fatigue Syndrome and he found that I had mercury poisoning. We started bringing our son to him at the same time, although he's never been autistic. He had sensory, mild behavior and bowel issues. I think this type of doctor could do a lot to help your son, in addition to working with Latimer or whichever PANDAS doc you end up with. They are not naturopaths, and as far as I know, don't care about your diet except that it's healthy and you cut out anything you're sensitive/allergic to. I do feel the DAN doc helped my son a lot, even though he ended up with PANDAS. When he turned 8 we thought we were out of the woods and decreased his supplements to the bare minimum - one year later he had full blown PANDAS. I will always believe the two are linked. Needless to say, we are working with him again.

 

It sounds like he's having issues metabolising nutrients AND he's restricting his food intake - is that right? The food restriction isn't uncommon with PANDAS. Our son had never been a picky eater, but with PANDAS he started refusing to eat if he could see stickers or if someone with tatoos was in the room or if he was outside and there were bees around. He was starting to lose weight suddenly and it was scary.

 

You got a lot of good advice from others here, so maybe try some of those suggestions while you wait for your appointment.

 

Hang in there. You'll get it all figured out - it just takes time.