peglem

Is there an immune deficiency? That could get it covered. The immunologist probably knows what the insurance requires as far as evidence to get IVIG approved. So sorry to hear about this new episode...you must feel like somebody just kicked you in the chest!

My pediatrician called her office at the end of September and she returned his call, same day and talked with him for about 20 minutes...and I am not a paying patient of hers, either. I'm surprised to hear of the difficulty other people are having with this.

Vincent VanGogh cut off his ear.

That gives me such an eerie feeling...

I really think all those IQ, psych tests and stuff are very innaccurate when it comes to our kids, given their tendencies to not express themselves well, get "stuck" on intervening thoughts and just generally having trouble processing sensory motor stuff. My take on the mouse model thing is that it was not so much the visual spatial memory enhancement, but the fact that the mice kinda obsessed on that...processed the information repetitively, and so performed better. You do sometimes hear of people who become highly successful at something because they are so obsessed with it- it may interfere with other areas of their lives and functioning, because they exclude other things to pursue the obsession. I'm thinking like Einstein (who many theorize was aspergers). Especially in his younger years, he was pretty dysfunctional in a lot of ways- Hmmm- wonder if Einstein was prone to strep infections?

Vickie, not to be nosey- but how do you know its not related to PANDAS

From the Mouse Model paper here: http://www.sarnet.org/doc/PANDAS_Mol_Psychiatry_2009.pdf and page 11 of the same paper: So, PANDAS seems to have given these mice some above average spacial reasoning capacities. Isn't that interesting?

Zith works for us- we're in Arizona.

But, wonder if my daughter would have even needed antibiotics if they hadn't screwed with her immune system (HepB vaccine) on the day she was born!

It seems like with more and more vaccines, we should be getting healthier and healthier...are we? I don't think so. I completely agree...nature is very, very smart. When you try to find information about the immune system, there is just so little known or even studied yet, but still they are manufacturing and marketing these vaccines as though they know exactly how they work- that's scary to me.A little knowledge is a dangerous thing.

My daughter was getting a blood draw fro other things, and I asked if they would draw the extras for me- showed the study materials. My daughter gets blood draws frequently so we have a good relationship with the phlebotomist- I sort of had the idea she was doing it on the sly for me, God bless her!

Do steroids make kids more susceptible to illness? I mean, if they suppress the immune system, then what protects them from disease?

I just wrote a few paragraphs of my daughters medical history from memory- not official records from the doctor. Told her to let me know if she needed more info- she sent me a kit.

Here's what I think pertaining to my daughter: The IgA deficiency allows her mucousal passages to become colonized- w/o an immune response. According to doctors, this bacteria does not infect her, and its just harmless. That may be true, but biting your tongue, picking your nose, dental procedures...provide a way for this bacteria to get into the body at large. I think she is continually reinfecting herself. What they do seem to know is that people w/IgA deficiency are at greater risk for autoimmune disorders. She also has a IgG4 deficiency.

Here's a study indicating that IgA deficiency in mice contibutes to a carrier state of streptococcus pneumonia. http://www.jimmunol.org/cgi/reprint/173/7/4576

Yes, I've heard that, too. I still hope its true.

Scarlet Fever is just a rash caused by a strep exotoxin- your son was exposed to strep on that occasion. http://en.wikipedia.org/wiki/Scarlet_fever

I think autism would have been her "diagnosis" and they would have looked no further for explanations. I do think my daughter's autism is caused by PANDAS, and medical neglect. Amazing how doctors will dismiss everything that happens to an autistic child as just part of autism. I'm exaggerating a bit, but there were times when I was sure if her her leg were chopped off and spewing arterial blood they would tell me that's common in autism! I don't think all autism is caused by PANDAS, but some is. And the crazy thing is....they've got no business "diagnosing" autism anyway- its not a diagnosis, just a group of symptoms that, when they happen together, are labeled autism. It seems like if doctors understood that- then they'd be asking about what causes those symptoms instead of dismissing them as somehow normal for "these kids." Okay, done with my rant, for now. As you can imagine, I feel pretty passionate about this, so can't promise it won't happen again!

You're talking about my kid! PANDAS stole her childhood from her, including her early childhood development...and then it took some of the things she did develop.... She just had her 1st period, and an exacerbation...I have no hope that puberty is going to fix anything, including the PANDAS.

Uuummmm, this makes me wonder if Pixie was not just upset with that particular caregiver (the fired one), but was wanting her mommy's attention instead? I wonder if it might work better to have a babysitter for the 2yo, and mommy help Pixie get ready for school? Just a suggestion...I mean, 2yo gets mommy's full attention while Pixie's at school, so...

If they have a DO (doctor of osteopathy)-try them

I think w/ augmentin you can get a rash if the child has mono (epstein barr?).

Could be. The high dose abx w/o probiotics makes me suspicious. But, even yeasty sillies are better than PANDAS meltdowns.

Silly, giddy as in playful, or silly. giddy as in crazy laughter outbursts that seem a tad extreme...the second kind can be a sign of yeast.

Just wanted to let you know that the document I linked for UHC coverage does have disclaimers attached regarding coverage and we are not far enough in the precess to see if actual coverage will take place, but the UHC documeent did say that IVIG has been PROVEN effective, specifically for PANDAS. This strikes me as odd in light of the fact that PANDAS is "contoversial" and most would say there is no Proven treatments, but there it is. I'll find and link the document again if you'd like. Another document from UHC on Apheresis (PEX falls into this category), sounds like this procedure is a lot harder to get approved and makes no mention of PANDAS.