peglem

In my experience, elevated TSH could be related. It was for us. Endo's seem to have differing opinions on whether elevated TSH alone is a problem, if T3 and T4 are in normal ranges. My daughter had elevated TSH for many years w/o the endo being concerned because her T3 and T4 were normal. But when we saw a different endo, who took the hand symptoms and autonomic symptoms seriously, and levothyroxin was rx'd, those symptoms resolved. My daughter did test positive for antithyroid antibodies at the time as well. I don't know if yeast overgrowth can cause thyroid probs or not, but it may be worth investigating thyroid function in your child. Oh, sorry for going off on the autism tangent!

Okay, that makes sense. I guess I'm over-sensitive about this sort of thing. It just seems like once the autism label is applied all behaviors/symptoms are interpreted through "autism colored lenses". That has caused a lot of frustration for us as docs will not look for the source of the problems- they are "normal" for autism. So many years we went without treatment... And last year, when my daughter was having painful hand cramping to the point of being unable to use her hands, even to sign (condition resolved w/ thyroid treatment)- her teacher who is highly trained in all things autism, suggested that it was a stim. What an idjit!

My daughter did this when she had thyroid problems- it was not a stim, she was having problems with the muscles in her hands. And the red face (like a hot flash?) could also be thyroid related. That being said, I'd sure like to know how people tell if something is a stim, a tic, or a compulsion. As far as I can tell, tics and compulsions are called stims if you're autistic...please, if anyone knows what sets a stim apart from those other things, let me know.

Is it possible that he may have experimented w/ "stuff" at camp. There's actually quite a bit of anecdotal evidence that a certain "hippy" substance can help with those kinds of symptoms. See here: http://www.latitudes.org/forums/index.php?showtopic=9184&st=0&p=76744&hl=marijuana&fromsearch=1entry76744

Thank you all so much. It really means alot to me that you care. I don't think he'll try for custody, he doesn't have the slightest idea how to care for Allie and its pretty obvious he doesn't want to deal with her at all, except to get pity from people for how difficult it is for him. I'll get the guardianship out of the way before I deal with the marriage issue. My BIL is a lawyer and is helping with the guardianship for free. I quit my teaching job 7 years ago to take care of Allie. My license has lapsed, but I think I want to do something else anyway. Hub lost his job in March (he did something really stupid and selfish that is somehow my fault) and is not seriously looking for work. So, its kinda scary putting myself out there in the working world again. I'll do what it takes to make things work- I always have. Her doctor is a member of a large pediatric practice. The "no over 17" policy was made by the group. I'm sure he will consult with whoever the new doc ends up being. Maybe I can get referrals from the local autism groups.

Sorry to dump on you all, but really have no where else to go- My plate is over flowing and most of it is not very appetizing! Allie will be 18 in a month and I'm having to file for guardianship. I've known for quite awhile that she would not be maturing into an independent adult. But having to put down in black and white just how dysfunctional she is...w/o balancing it with how wonderful she is, doesn't feel very good. And the process is rather daunting. Her pediatrician will not be able to keep her as a patient once she turns 18, as his practice made a policy. He has been THE goto guy for us medically. Never gave up and laid his own neck on the line to advocate for her to specialists. Where will I ever find the right doctor to treat her now? He's irreplaceable. And, Allie aside, after 9 months of couple's therapy, I'm realizing that there really isn't a marriage here to save (and maybe there never was). So, I've got to formulate some kind of exit strategy that will enable me to keep taking care of Allie. I know I'll get through all of this. Life just seems so tough right now and I cannot get any support from my husband. Its just not in him. So, anyway, I'd appreciate any prayers or "atta girl"s you can send my way.

Wow. That was amazing. So, what do you guys think of his cytokine theory? It makes a lot of sense for my daughter...She has a lot more going on than just PANDAS, although I think PANDAS plays a role.

here's a link to the archived talk: http://www.blogtalkradio.com/ppn/2012/08/30/beyond-leroy--dr-rosario-trifiletti It was quite long but worth listening to! Why can't I get there w/ the link- I just get a page to sign up for free blogtalk-for me to create a blog, not listen to one.

Her doc was willing to do a 5-7 day taper about every 6 weeks-she has frequent flares, but feels that once a month is not safe enough, and wants to try a low dose immune suppressant, which he feels will be safer. He's shopping for a rheumy to help with that...ugh, we also need to find a new PCP as she'll soon age out of her peds office.

I'd say its either the penicillan or probiotic- The abx may be promoting gut yeast (which makes my kid hyper, silly and defiant) and/or the probiotic is killing yeast. When yeast dies it releases toxins that cause those symptoms as well. What kind of probiotic are you using?

How often is it safe to use steroids?

We've tried and tried white noise, she turns it off. It turns out she does have fluid behind her eardrums and as I'm addressing that its getting better. We weren't able to get her to work on it for rewards, but now when she jumps up its a few seconds after it comes on, and sometimes we'll just say "walk, please." and she'll turn around and sit back down, or we'll say, "Oh, too late! Its over." So, I think maybe it was causing pain in her ears and now she's reacting to the memory- it may cause pain again. So, learned anxiety?

PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated w/ Strep. What that means is that some children make antibodies to strep that cross-react w/ neurons in the brain, producing obsessive compulsive symptoms and movement disorders like tics and chorea. You can find a lot of details/info/FAQs on the Helpful Threads thread pinned at the top of the forum. I would suggest if your child has chronic infections they get checked out by an immunologist.

I just can't help but think that the omission was deliberate, and if the disclosure had been made at the time the paper was published it would have diminished its impact. Can you imagine the uproar from them if a PANDAS researcher pulled something like that?

The white noise thing won't work- she turns everything off, almost like she's fixated on listening for the AC. This is how she tends to be with her bad triggers- so frustrating when she won't avoid the things that set her off! I think I can try dcmom's suggestion (thank-you!). But, not today because my grandson is in the hospital and I had to go up there for his mom. She has a history of extinguishing rewards, though. That's why ABA has never worked for her. But its sure worth a try.

For the last week or so, Allie's had this thing where whenever the A/C compressor kicks on, she gets what I would guess is an adrenaline surge. She jumps up and tears out of the room w/ a little shriek. She's had this before, and its resolved on its own, but it seems to be hanging on longer this time. We live in Phoenix, so turning off the AC isn't an option. I tried keeping the AC fan on all the time- didn't work. The worst part is that she has trouble falling asleep at night because she has to jump up and run every time the air comes on, and when she finally does get to sleep, it frequently wakes her in the middle of the night. We both are very sleep deprived....

My daughter's pediatrician is looking for a rheumy who will try methotrexate or something like that for my daughter. He thinks it will be safer than monthly prednisone tapers. IDK, it scares me.

And there'll be one more teacher who knows about this disorder- who will likely come accross other families who need help.

I've not had any doctor guidance on this, but I give s.boulardii(Florastor) every time I give abx.

"Giddy" silly is usually yeast for us, too.

High titers are not necessarily a reflection of current infection status as they are known to rise several weeks after an infection. They are actually antibodies against toxins that are excreted by strep (bacterial "poop"). I don't know anything about avelox, but my daughter has a history of positive rapids but negative cultures while on zith. What I finally think was happening there was that the rapid was detecting strep antigen, so strep was most likely there, but since zith is taken up into the tissues, it prevented strep growth in the culture. So, what do your results mean? Possibly a present strep infection, possibly only a past one. The recent illness could have been caused by an entirely different pathogen...nobody knows.

What experts say too many is not good? I have been looking for info about this since a PANDAS group leader told me she doesn't think you're supposed to do it as often as we do (every 3 weeks). I have not been able to find anyone or any articles to support this.

http://www.autismspeaks.org/science/science-news/new-evidence-links-immune-irregularities-autism?utm_source=July+25%2C+2012++&utm_campaign=newsletter&utm_medium=email

It is important to identify all household carriers by blood test (ASO and DNASE not throat swab. Dr B also tests household for mycop IgG/IgM. Perhaps both? My daughter is considered a carrier, with consistent positive swabs, but no elevated titers.

My understanding is that IgM is current infection- the body's immediate 1st responders until IgG kicks in. But, IgG is not necessarily past infection, since often, reinfections call up a more immediate IgG response from the immune system's memory. So if you test positive for IgM, its pretty certain that the infection is current, but if you are only IgG positive, it could be either past or current infection.