peglem

I'm just going to ask...what is meant by "hyperimmune"? Because it suggests to me that too many antibodies are being made...but that doesn't sound like what you guys are talking about. Can you be hyperimmune and immune deficient?

Melanie, I posted some studies regarding the efficacy of higher dose IVIG in autoimmune disorders at the end of this thread. Maybe something you can use to argue for the higher dose?

and another: http://www.ncbi.nlm.nih.gov/pmc/articles/P...16/?tool=pubmed

. Yes, I have this article (I think I cited it somewhere on the forum, but no matter). They are in the process of developing an IVIG product w/ increased levels of scialic acid that would be anti inflammatory at a lower dose.

Thank you Marilina! I found a few more abstracts (wish I could get full text) that are pertinent: http://www.ncbi.nlm.nih.gov/pubmed/19883419 AND http://www.ncbi.nlm.nih.gov/pubmed/18926775

If it hadn't been for the vitilago, I wonder if immune would have been investigated at all? Because it was a visual abnormality, not associated with autism. The medical community really dropped the ball on autism. I just don't understand why they didn't see the neurology of it. Even though it was described by the psychiatric community 1st. Just the fact that the pupils are so large points to brain inflammation. I asked every doctor we saw about my daughter's pupils, and that was a LOT of doctors! It was always shrugged off. Sigh... moving foward...

Melanie, if I were you, with all the stuff you guys have been through, I'd make an appointment and go see him. I sooooo wish we lived close enough to an expert to get regular treatment.

Nice.

So, should we be wagering who will get test results 1st and what the results will be?

I sure hope your daughter responds to the zith. I want to tell you that all that behavioral stuff is NOT autism!...But it interferes w/ development and can cause autism. Please read Dr. Kovacevic's page on autism here: http://webpediatrics.com/autism.html I wish more doctors understood what he says about autism being a symptom of an unknown disease. I have a 15 yo autistic daughter- we figured out, when she was about 12, that she had PANDAS and its a dreadful feeling knowing that something could have been done all those years ago if only we'd known, or if only the doctors had checked for disease/infections. She did not respond well to most interventions, either. And like your daughter, even professionals who worked with autism were astounded by her behaviors and severity. It didn't ruin my marriage, either! I think it actually strengthened it, as we pulled together to do what we needed to do for our child. Its at least a 2 person job! (My daughter has 3 older siblings who are terrific w/ her!) Strangely, I hope your child has PANDAS! (though, I wouldn't wish this on anyone) Because, as you say, this is something you can do something about! God bless, and keep us updated on how the zith trial goes! BTW, how does she do w/ ibuprofen? There is an inflammatory component to this that is sometimes helped by ibuprofen.

There, was that so hard? All these years later, they decide to see if its true...

No. Myself and my oldest daughter have not had good experiences w/ oral birth control side effects. Allie cannot tell me if its having a bad effect. And, her pediatrician is willing to help with prednisone and abx and anything else he can figure to do.

No, that's solidly w/in PANDAS range-high. Now what? You mean I am not crazy? Thank you Lord Did the lab send you copies of Dr. Cunningham's research papers? On page 3 of one of those, there is a graph that shows the ranges of CamKII regarding PANDAS, Sydenham's and controls. If I remember right, 161 is rather high, 200 is the bottom of the sydenham's range.

I have read several posts that often girls outgrow pandas when they start their period - maybe this is related to the progesterone also???? Mine started her period last October. No signs of out-growing it yet!

No, that's solidly w/in PANDAS range-high.

Okay, pediatrician has called in rx for pred. Now I just need to convince the immuno to do a higher dose of IVIG. We'll see him on Monday. I haven't spoken to this one before. Would appreciate your prayers that it all works out, and research on ivig would be good, too.

Not me! I know nothing about that!

The only thing is, w/ zith, you need a loading dose to saturate the tissues- then maintain tissue saturation w/ the prophy dose.

Well, I can't say for sure why any doctor does anything (or sometimes nothing ), but the NIMH (National Institute of Mental Health) Pandas page does not recommend prophylactic abx and says to treat the OCD the same way "regular" OCD is treated...which is often w/ SSRIs. This is the official recommendation of the organization that sponsored the initial PANDAS studies- so is what many docs would take as the final word. :angry: This page contradicts the study results (that they sponsored!) and is a "black eye" (pun intended) for PANDAS treatment.

My daughter had a very tuff week following her last dose of risperdal- then she was very good until the next strep infection.

Zith is taken up in the tissues, so you'd want to start with a loading dose and then maintain tissue levels. I don't know how much you have there, but I'd start with 500mg/day for 3-5 days, then maybe go 500 every other day. In my opinion 250mg every other day at his size would be like spitting on a forest fire.

do you recall where you saw this? I googled "IVIG inflammation" and also did a pubmed search of the same thing. Many articles made it sound like common knowledge that LD IVIG is pro-inflammatory and paradoxically anti-inflammatory at higher doses. Here is an article that I thought merited saving: http://www.ncbi.nlm.nih.gov/pmc/articles/P...16/?tool=pubmed Also, search for "IVIG sialic acid" for some interesting stuff.

So no worsening of symptoms, even temporarily? No setbacks? What dose is your daughter on? What flavor was her PANDAS? (I mean how severe and what were the prominent symptoms in her presentation?) No worsening of symptoms or setbacks unless she became ill. After each IVIG we saw a decrease in various symptoms (one month it was anxiety; the next month it was eating disorder; etc...) She receives 20 grams every 4 weeks which is about 1 gm/kg. She was pretty severe at her worst. Raging, severe separation anxiety, vocal & motor tics, food issues, sleep issues, joint pain, dilated pupils, about the only thing that she didn't experience was OCD type behavior that involved counting or hoarding. We actually see an increase in fatigue and joint pain the week before her next IVIG but she always improves within 12 hours of the treament. My daughter is getting less than .5gm/kg. Dr.L recommended 1gm/kg, which I also thought was too low, but its good to hear that has worked for you since I think the chances of getting the immuno to do more than that may be slim!

That was my 1st thought, and I can't be sure, but this seems to be directly related to the IVIG. After the 1st one, I thought, well, its just a little worse and a little backsliding is expected after IVIG. And things did get better the 3rd week after. But it got a lot worse very quickly the second time. School asked yesterday if we thought the aggression gets worse after IVIG- so not just my observation.

So no worsening of symptoms, even temporarily? No setbacks? What dose is your daughter on? What flavor was her PANDAS? (I mean how severe and what were the prominent symptoms in her presentation?)