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If you want info on the intensive cbt, feel free to pm me and I will happily share our experiences.

If you want info on the intensive cbt, feel free to pm me and I will happily share our experiences.

the very smart Dr T tested my daughter for this in 2010... a man ahead of his time. she was negative, but I am grateful he thought to check. All that aside, this is great that it is world news~~ excellent information to put out to get people (and some doctors!) thinking!

can you get into intensive cbt? he has "seen the other side" and it is greener! maybe would this past week at camp would be a great driving force in successful ERP? we have done everything with our kids pandas-wise (literally... pex, ivig, steroids, abx, integrative med doc) and it all did something and in some instances did alot. NOW both have completed / are doing intensive cbt/erp. I cannot say enough about how this therapy has helped. both were not ready or able before all the medical interventions. I think, if he is able to physically go to camp and deal, he should be a candidate for intensive therapy, both for ocd and depression.

I suppose it did help, but again, she was on so much, hard to pinpoint what was helping. she.is not on it. in spring 2010 she entered the darkest part of her illness and stopped all meds and we have not been back to llmd since then.

my daughter took leucovorin for a long period of time from her llmd. no bad effects that we noticed. she did her best under the care of that doc, but leucovorin was one of many,many meds she took under that docs direction.

double post !

I think taking more would not make a difference. Correct me if I am wrong, phillypa, but I think the N2O renders the B12 useless, increasing homocysteine-not something you want. I guess , as I read it, is how potentially dangerous us this in an acute setting, short term siutation? how long does this effect last? thanks for posting this! edited for N2O, not NO ! wrong gas;)

is there anything we can do to help? I guess i am asking, indirectly-- is the U of OK pandas research fund still up and needing funding? Usually I get multiple calls from the call center and I have not gotten any (maybe I have missed their calls?) Are these two labs separate things?

pillglide is helpful. my 12yo cannot swallow the.augmentin either, so she is on liquid 7.5ml of the suspension. it comes pretty close doseage wise&wehave seen a difference with it. maybe dr b wil consider giving a close enough script to the pills. it would be better than not taking it at all!

I begged for a psych. appt while we were there. I did not get one until a cancellation 2days before we left. callnow,and beg. let them know you will take any appt they offer you. we saw a fellow first and dr murphy read my very organized records and timeline of her illness and stepped in to the appt. the therapy was excellent we saw dr h for that. pm me later if you want.

took a few weeks here. they have been on the high doses since end of march. one missed.a few doses in a row 2 weeks ago and it was noticeable!

the younger one is on liquid because she cannot swallow the huge xr tablets.

zithro 500 mg qd & augmentin 600es- 7.5ml BID. this child is 13 and post puberty, 130lbs female the other is on augmentin 1000 xr tabs(huge!) bid. sheis 14 and heavier. we did 250 zithro for years with zero change noted. usf doubled both abx and coupled with the therapy, things are much much better. our pandas doc is not USF & now is continuing what they did down there.

This is wonderful. When we were at USF this spring for intensive outpt therapy (awesome btw) we were lucky to see Dr's R and M (neuropsychiatry). They doubled my daughter's antibiotics & we have seen significant improvements. They are the crew to do this! we had not seen any change from antibiotics for my kids (3 on them for pans) in over 2 years- until they made this increase.

there can be subQ infusions, but this, at least what i think our allergist was referring to (for these pts) was injection. they do place a small catheter under the skin and very small amount is infused (compared to IV) subq infusions are used for other stuff, too. I guess I should have asked the immuno to clarify! It is/ was also given IM

it is not diluted in bags, it is a little needle like insulin. edited for needle vs shot (to clarify) sorry.....

There has been some research pointing to what DeterminedMomVA wrote. I would consider it- since my child had a serious hematological problem develop from high dose IVIG. She recovered- but I would be very hesitant to do it again in such high dose. She has never had her immune function checked, however.

my local allergy/immuno asked me the same thing in passing conversation- he was see a non-pandas kid of mine for allergies. he does not know alot about PANDAS but seemed open minded he was surprised, I think, at the medical intervention level we have done (ivig, steroids, pex) he said he does subQ weekly for immune deficiency- better than big guns once a month. I wonder if he would be willing to try it if a child of mine needs it again.

MomWithOCDSON- have you considered the pfeiffer institute near Chicago? I am not sure where you live- I always thought PA- but now I see it says midwest! pfeiffer They come to my area once a year- your area, too, smarty We may try to see them- or even go out there to see them.

do not know anything about them-- except they are going to be near you and near me in the next few weeks... are you going?

EXCELLENT RESOURCE! thanks so much for posting this. vaccines for my other children will be due soon and i need this. thank you thank you thankyou

we must all be married to brothers

PM a few names to you now

can you get him to good cbt?would he be willing?