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did it help your reactive arthritis? my child had arthritis complaints and after pex and ivig, has had no complaints for over 18months. the arthritis preceeded pandas onset by a year or more.

Having done both PEX with 2 children, IVIG with both and then intensive therapy with both (one at USF).... I would ask: how is your child doing? I mean, by that, is she (a daughter, right?) cooperative enough that she might do some therapy? If so, I would get on the phone to Dr Storch's group today! Pex was immensely helpful for my children (and I would do it again for them or another child, if need be) but they were in crisis situations, not talking, zero hygiene, incapacitated by OCD (truly- not able to leave house, etc) Once those crisis levels were diminshed by pex and then IVIG (hard to tell for sure if that helped- it was not as definite a help as PEX) intensive therapy returned peace and smiles to their lives. I cannot stress enough how much PANDAS parents need to consider therapy just as important as abx or whatever else we do for our kids. However, I need to qualify that by saying quality therapy. For that, we traveled 16+plus hours to FL for 3 weeks. It is a huge sacrifice for the family, seemingly impossible for many, but please, please consider it. Also, unless you have the $30K + for pex, most insurance will not cover it, from what I have read and observed. Feel free to PM me, if you like Additionally, if she is not willing/able to do therapy, there is always Rogers Memorial OCD center-- depending on her age and a few other things...

so sorry to read this. I hope it is not accurate.

excellent news! thank you for posting. we found success through pex, ivig & intensive therapy (Rothman Center, also)! Can you explain how/why you chose the multiple HD IVIG course versus "one and wait"? Thanks

How can he deny the CVID if it is valid? How was it diagnosed? Can you just skip mentioning PANDAS at this visit today, if you will lose credibility? I learned to do that in certain places regarding both Lyme and PANDAS.

i have 3 who see her and have for a few years. you can pm me also, if you want!

thenmama, what is the new swab method? do tell!!

maybe not directly, but I believe one autoimmune tendency begets another. One of.my children had arthritic symptoms and has several autoimmune markers. She has not complained of arthritis since pex and ivig. her rheumatologist said pandas tx might help her ankles/knees and it did!

Right now, we are using Bluebonnet Liquid vitamin b-12 & folic acid. We used to use something different- I cannot find the name, I think it was Klaire Lab-- but this was the closest I could get at our local store. My child has not MTHFR mutation and this was recommended by our integrative med doc a few years ago & we are just giving it a go again. Blue Bonnet also has a methylcobalamin product another thing she says is helpful to her are these homeopathic lozenges :My link My child is currently in a pretty good "remission" (or maybe cure??) stage from PANS & is mostly only experiencing significant anxiety these days.

go to one of the few pandas docs in the country. Dr k is relatively close to you. do you have family or friends on the east coast, by chance? there are a few docs here who have more to offer than just ivig!

my teen daughter uses this, and I do think she feels it helps her anxiety. she said it makes her feel more relaxed after a few minutes. she has high homocysteine, for what it is worth.

always the skeptic (sorry) could someone explain how a bath could cause a reaction (positive or negative) to an infection that is not topical?

I an thinking of calling the study for my 4 yo. how do I get the strep titers done? the only piece I missing is strep proof. we have a dr l new pt appt in the end of nov, but my little one is worsening! will nih trial talk to us without titers drawn? we live close to nih, so it would be easy to go there.

There is a disease, Wilson's, that has to do with copper storage in the body- it can cause symptoms that are VERY pandas-like. Low ceruloplasmin is associated with Wilson's, but I do think SOMEWHERE (maybe not a reliable source) I read that person with mental illnesses- schizophrenia, OCD, etc- may have higher than normal ceruloplasmin. So I think he checks for it to make sure that you are not dealing with Wilson's. This was one of the first tests my dear family doctor did when PANS hit my daughter hard.

komom, awesome idea to get started with dr t while you are waiting for dr l. I did that a few years ago. at the very least you can get some labs done in the meantime by him and be super-prepared for Dr L.

I saw this with one of my daughters. it was horrible. yes, I think you are on the right track. you are waiting to take her to dr l, right? steroids, pex, abx, intensive therapy (only AFTER medical tx made her somewhat reasonable) brought her peace. praying for you and her.

have you tried a local llmd? some of are very receptive to pans-lyme and also helpful treating.

one of my little PANDAS girls has OCD about mice! your book will be a good exposure for her I cannot draw, but I would love to help in anyway, even if it is just buying as few copies! awesome idea, laurenk

our 13 yo responded positively. we are so happy with how she has been since then. we went this march. while we were there we had a psychiatry consult with one of the neuropsychiatry fellows. that was worth its weight in gold, too. we have a pandas doc, but a fresh set of eyes is always good! they got her on augmentin 1000xr BID & increased her zithro. what a huge improvement that was! great choice in going to Fl! best wishes to you and your son. it was difficult, we also came from DC area, but again, totally worth it.

yes yes yes! this is what our activation looked like. my daughter , age 10 at the time, then started biting, and crying to "go home to heaven". this was just too much. her docs even raised her dose after this! I would taper.down tonight and not wait until monday. maybe give half pill tonight if you can ( or on the morning) I am so sorry she is suffering.

thanks for sharing. I really appreciate it.

laurenk, how long does your remission usually last? do you mind sharing or pming what your symptoms relapse as? psych, neuro.... just thinking ahead for my teen, who also is helped by steroids thanks

I cannot think of any now, but there are drops we used to buy from our llmd and lozenges from a local health food place. They tasted good, like raspberry or strawberry. They go under the tongue for fastest absorption. I would just get any brand and give it a try. all you can lose is money & isn't that a hallmark of being a PANDAS parent, anyway?

have you tried sublingual b12? pretty sure it does not buildup, but she could take sublingual often and as needed

the horrific activation we saw lasted until we got her off it. on a side note, both my kids take clomipramine, not an ssri, and seem to benefit from it with no activation effects whatsoever.