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Pex was done in patient. Ivig cost about $1000for every 10 lbs, for us anyway.

Excellent idea! Hey, how are things going for your girl in NY?

Pex cost 30k. it was very helpful for my children. Dr latimer does pex.and ivig

I do not know any names, but maybe a good llmd or integrative medicine doc would be help ful?

Did you look up chloasma/melasma? Does it look like a dirty spot you could rub off? One of my daughter's had that and her derm said it is a birthmark. I do not believe him, since it was.not always there and it is changing. My friend daughter has a similar patch.and was told it was freckles beneath the skin. She is going to a rheumatologist soon for arthritis and is going to ask the doc about it. Both my daughter and my friends daughter are very young teens.

I just emailed you!

Dr latimer is great. we travel about an hour and a half to see her. I cannot tell you how many times I have so thankful to live so close to her. She has all options.available to her for PANDAS treatment. Call right away, and tell them you live so close, in case they get a last minute cancellation. My kids have had IVIG,steroids and pex with her . You have a long road ahead, but you can do it. Are you in virginia? There is a support group in northern virginia that has many parents of autistic kids who are looking into PANDAS for their kids.

My cholesterol has always been good...but it was never checked as a child. I think it was first checked when I was 18 or 20 or so. That's interesting that you had high cholesterol...do you remember how high? Did you have OCD (or PANDAS) as a child? Isn't homocystiene somehow related to the MTHFR muation? did you have that checked on your dd? I couldn't find any thing on prozac causing high cholesterol...but our psych. had that theory. No ocd as a child, though major social anxiety. I had recurrent strep and tonsillectomy in 4th grade. I do have anti-phospholipid antibodies, which someone on here pointed out as a possible immune response to strep. I do not know how high my cholesterol levels were, maybe my mom will know. My daughter is negative for MTHFR, tested fot C677t andA1298C

I am of the "diet is not necessarily the cause of high cholesterol"camp. I think alot has to do with stress, lifestyle. I actually had high.cholesterol as a thin child, but not now as an over weight 34 year old. My sister, very overweight as.a child, had perfectly normal cholesterol as a child. When mine was found to bee high, they checked her also. I was about 8 the time & she was 7. They did not do.anything then for kids with high cholesterol. I bet her anxiety is causing a cascade of events that are creating stress on the body and thus, cholesterol. Is prozac known to.increase cholesterol? My daughter (14) who has been to and from PANDAS ###### multiple times, has high homocystiene.no cholesterol checked, though. I think high homocysteine has to do with heart inflammation or some association with heart/block ed arteries, out some related affliction.

Right now, my child is doing some intensive ERP and I am wondering about this also. I am considering asking our PANDAS doc and our psychiatrist if they wil consider prescribing d-cycloserine for her. I am probably too hopeful, or desperate!, but I am going to ask. my teenager will also be starting intensive therapy soon and I am going to ask if they wil consider it for her also, especially since she had good response from rilutek, another glutamate modulator.

What a great ERP. You flew! I am also extremely anxious about flying, among other things. I did an online course fear of flying help.com a few days before I flew. It was so helpful. I had to fly for a PANDAS-related issue. It is amazing what we can do for our kids;) Kind of OT, but check it out. It is by a pilot and you can read it for free and make a donation if you want. I did that and bought his book, again very helpful. There will be more flying in my future, due to PANDAS, and I am still convinced I am going to perish at the bottom of the Great lakes and if i don't stare out the window we will crash,--you think I might have some is OCD?- but I DID IT and can do it again.

Strep.can be resistant to zithromax or even augmentin. It might be worth getting a test if it.keeps up.

I cannot speak for LLM, but you mentioned she was 100lbs and 17. That would be quite slim for an post-pubertal female. I am guessing that is how she knew your daughter was slim!

Did you recheck strep these last few days?

I agree, IV is better, if your child is responsive to steroids and you can arrange it. Best wishes! Let us know how it turns out, praying for you, brown eyes mom.

Oral? 60mg x7d 40x7 20x7 10 x 7 Takes my girls about two weeks to really help. IV? There is all sorts of doses; some doctord are really hesitant to go above 1or 2 mg/kg. we have found much higher doses much better, however, my children are very responsive to steroids Also I think decadron may better than solumedrol in some cases.

Tick-borne infections: Erlichosis, babesiosis, etc.

Pm matismom, she is not on the forum that much, but she maybe able to help you.

I am glad you are seeing Dr l. What is his diagnosis now, may I ask? My teenager is very interested in what other older kids are dealing with. Did you make a list of all symptoms (including this one) and a chronology of illness? (For the visit with Dr l) back to the memory topic, is he aware he is forgetful?

No advice, just commiseration. Mine is 14 and is full size. I have no doubt that this fear/refusal has prevented her treatment Way past bribery working, right?

My daughter has no memory of several months at all, when she was at.her worst. She does not even remember good things, like meeting her new baby sibling, who is now a toddler. Actually both girls have little memory of those horrible times. I mentioned some in therapy the other day, and my younger daughter did not even know she did certain things. Big things, you would not forget. I think their brains are protecting them from the bad memories.

I could write a book & you can PM me for more if you want. We went through a year+ of massive supplements,abx, you name it. 4months plus of picc line(iv) abx. Yes, my daughter was functioning at her best under this doc's.care. We knew were done when my daughter refused to go back. She had to be carried everywhere.kicking, screaming completely out of herr mind. I an not exaggerating a bit. So really, we may not have been "done". The llmd was.great. If my daughter agreed to it, I would take herback there. After the crash during lyme tx, the best relief we have gotten is from.steroids and pex. That is seemingly a sign that we are at least mostly past the infectious part and on to the autoimmune part. Unless, of course, this IS all autoimmune and the lyme was coincidental. Correlation does not equal causation. I am firm believer in that. Excuse the typos I am on my phone!

Did she have pex that little?

She had that as well, I just wonder if it is some kind of "damage" from her encephalitic times. You know how I feel about lyme;) I will remain open-minded, I promise!

Not recently, she actually had lyme at her onset, she not technically, "pandas", but a PANS kid. She was CDC pos lyme, treated by an LLMD. We could not retest now, if I wanted to, due to complete refusal of medical care. I wil let her know this about lyme. Maybe s she wil some how comply?