peglem

When my daughter had her T&A they biopsied the tonsils. I didn't know they would do that and didn't know it had been done until I got the medical records and read the report.

My daughter has continued to be a carrier of strep even after T & A.

Dr. L told me (I don't know how much your child weighs) that 500mg/day of zith would be safe for my daughter- she weighs 100lbs. Her regular pediatrician prescribed 500mg for 3 days straight as a loading dose, then switched to every other day at 500mg. That is working for us right now.

When my daughter was on the 5 day steroid she had periods of heavy breathing (like she was out of breath) and clammy sweats that would drench her t-shirt.

The other thing you can try, since the regular augmentin was tried and found ineffective (wasn't it?) for your child is to try to get an exception to cover the XR.

Dunno. We're waiting for Dr. L to send her report w/ the treatment recommend.

So what if, each dose you could do 1/2 amox and half regular aug? would that work? you'd be getting the same amox, but only 1/2 the clav.

I'd get them out and biopsied! When my daughter was 5...she had the same thing with the eating, was in the below the 2nd percentile for height and weight- didn't sleep well, frequent ear and sinus infections...nobody ever looked at her tonsils. The doctors all just thought it was her autism (these things are common in autism you know!-perhaps they wouldn't be if doctors would treat them!) Anyway- SOMETHING is making his tonsils big and you're bound to see improvement with better sleep, eating, and breathing!

How sad is it that it never occurred to me that the doctor should have treated for a discovered problem? I've met so few who do!

If it was me, I give it a try. Are there horrible side effects?

That's wonderful! Good work!

So, our own immune system creates immune memory, but we don't store memory from the donor IgG?

We're real American mutts here, but would guess from our coloring that we're mostly northern european.

Bumping this- in case it just got lost.

We use valium. But you may get some help from valerian root.

Yes, sensory processing is affected.

My daughter is doing okay. She's coming out of an exacerbation that started in September. We just got back from seeing Dr. Latimer in Maryland (because we couldn't get any specialists here in Phoenix to make any decisions beyond acknowledging autism). Hopefully we'll be getting some IVIG arranged for her here soon. Wow, 21 yo. That's got to be even harder medically- I mean autism is a pediatric set of symptoms (I refuse to call it anything else), so at least pediatricians know a little bit about it. I'm terrified of my daughter turning 18, as we'll no longer be able to see her pediatrician, who has been our angel for many years. How will I ever find a doctor who will listen and be able to help when she is an adult? I hope you get some help from the neuro up there, but my guess is they'll act like you're in denial about your daughter's condition (oh, those pitying looks!) and you'll end up needing Dr. K. I'll be sure to update here what happens with the IVIG...I'm so excited to have this ray of hope. Realistically, I know she'll still be autistic, but can't help but think she'll get a break from the PANDAS long enough for therapy to help, and maybe she'll even get back some of the things she lost several years ago...I keep thinking if I can get her back to where she was at about age 6, (when we were seeing so much progress in therapy) then she has a shot at developing more function.

We have UHC, but medically, haven't gotten to the stage of seeking IVIG approval. Don't know if you've seen this from uhc: https://www.unitedhealthcareonline.com/b2c/..._%28IVIG%29.htm Makes me think we have a shot at getting it covered.

Hi, kindred spirit! I have a 15 yo nonverbal autistic daughter, w/ PANDAS. I don't think the 2 are separate issues. I think the PANDAS struck my daughter at a very young age and interfered w/ development. I sure hear you on the "Because of her disabiilty doctors tend to explain away any possible medical issues as behavioral. I've been told many times, "These kids just do these things." It is so frustrating!" My take is that the autism is a set of symptoms (not a dx), and if you look at the children here who developed PANDAS after early childhood development, you'll see parallels to the behavior in your daughter. In autism they give the symptoms different names, which only confuses the issue more-repetitive behaviors, stimming, adherence to rituals- these are OCD behaviors. If apraxia is the reason for the lack of verbalization-this is a fine motor problem and can also be caused by PANDAS (not sure if its chorea or tics). I so much want doctors to stop looking at autism as though it is a diagnosis and start trying to find out why for each child, these symptoms are happening. The challenge to get medical help for PANDAS in our cases is, I think, more difficult...our children are much harder to examine and assess, and the "exacerbations" can be a lot more difficult to see because the "baseline" behavior is already so dysfunctional. How old is your daughter and where do you live?

And another question- If the donor immunoglobulin creates antibodies do those "recipes" get stored in the recipients body? For instance, if the donor cells make antibodies to recipient auto-antibodies, does a copy get saved so the next time that auto-antibody is detected the recipient can then manufacture its own response?

I think the key here is what's the source of the anxiety? My daughter is nonverbal and uncommunicative for the most part, but has high anxiety. We can't read her mind (mostly), but if we watch closely, we frequently find the anxiety arises out of a need to do something or avoid something, that she either can't do or can't avoid. It never makes sense that she NEEDS to do these things or NEEDS to avoid them. What I'm suggesting is that the anxiety may be due to obsessions or compulsions that your child is unable to describe or explain to you.

Yes, I think it is working. My daughter went into exacerbation mid-September. (she was on a really screwy zith regimen at that time- 250mg/day for 5 days and 7days off) Finally, at the end of Nov. did the rifampin/aug. combo, then the higher dosage of zith...and by the end of Dec. she's doing much better.

We have, and I know there was at least one other. First we did rifampin w/ full strength augmentem, then we stayed on the aug. while we switched to zith (+ aug) and then phased out the aug, so we are just on the zith now. The logic was that the rifampin and zith go after the intracellular bacteria, while the aug. goes after the extracellular (released by the former 2).

That "just part of the autism" crap really ticks me off. Where is it written in the dx criteria that autism includes raging misery? So glad you've got things more under control!

Have not seen that with yeast- but is she drinking enough water? Sounds like dehydration.