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Suzan, how were her homocysteine levels? just curious. my daughters were high at some point. the doc who tested it was looking for it to be low, so when it came back high , they shrugged it off. I have a cousin (second cousin, actually) who died of a blood clot after shoulder surgery - she had Factor V Leiden. I have been tested- negative, though I do have an autoimmune blood clotting issue- for which I take lovenox and aspirin during pregnancy, as you would with Factor V. So it is great you found out-- even if just for any possible future grandbabies

My daughter's tics have disappeared (at least temporarily 6 months or more) from a month of steroids and zithro each time. we chose not to go down the "testing" route, as we have a strong history of two older siblings with PANS (both remitted with autoimmune tx) and I was not interested in fishing for more complicating factors. I hope that makes sense. have you tried steroids for him? does he have psych symptoms, too?

The er is most likely going to ask "what is your emergency?" I know her situation sucks. However, the er may just ending up sending you down the psych route and you, may lose control of her care. What is her diagnosis? Does she literally never sleep? What else does she suffer from? It seems like you need to find one really great doc and spend some time teasing out the issues. In person. I do not mean to sound harsh, but I think you may be wasting your time and adding to your frustration.

Contact pandasnetwork.org They would probably know. Is there info about the stanford clinic online somewhere?

T.anna, They each had three exchanges over three days (though a break was possibly depending on how the plasmapheresis was tolerated). if I recall correctly, 4.5 times their total blood volume was exchanged.

One week for one daughter - 50%better. 75-80% over the month post pex Second daughter (sicker, longer) improvements not noted until 3-4weeks. Apparently, that timing is scientifically explainable, per our Dr. The one month improvement for her was the timing both times she was lucky to get pex. Praying, T.mom

Trinity, where do you live ? I may have some other.suggestions. You can pm if you like. Can you tell us more about about your daughter? Age? Non verbal/verbal? Autism symptoms?ocd? Sudden onset or exacberation? Non neuro physical symptoms?

My daughter was like this, the heroin comparison is pretty dead on accurate. There IS a big variation on symptoms and severity on this board, but you are not alone in her symptoms. My daughter improved initially from this state with high dose steroids, then pex and ivig. Snd lots of time. She is 5 years since onset, and 3 years since first steriods. I would never have believed she would heal, but she is. Do not lose hope. do you think this is autoimmune?

Awesome. You are on your way! pex waa so helpful for my kids. I am glad you have someone who can sort through this and is understanding. T&a did not help here, either. Wonderful step forward!

Karenna, Does your nephew have a pans doctor? Sounds like he needs one, and not waste his minimal compliance and your time on a non-believing doc.

I would encourage you to think "what can the hospital do for my child?" you may end up at a helpful place, but in our experience, the hospitals generally will send you down a psych route and that, at this point in accepted medicinal practice, is not that helpful. Do you have a pans doc that can help you in this emergency? Not sleeping is terrible. I believe risperdal helped my daughter when she would not sleep for days (literally). Is the not sleeping the reason for hospitalization?

Great news! If the improvement continues, than it sounds like her behaviors are from an inflammatory condition. We have never seen such a rapid response from steriods with PANS symotoms, but who knows? My kids usually get better in 10-14 days. Have you tried Augmentin for her?

T.Anna, We lived this for so long. I get a churning in my stomach, imagininzing the stress you are feeling now- just thinking about Friday. My daughter would not leave the house (or even her room!) for months at a time. She was carried into her doctor's over my husband's shoulder many a time. We left hours in advance, bought her junk food to try to coax her. She would sit sideways in the car, no seatbelt under a blanket, screaming, cursing at us. We always took a car that had child locks in the back. There were times when she was not aggressive, just would not leave the house. We would sit in the car with it running for so long, just waiting. Due to her OCD, if she saw us she would run back upstairs to her room. It was a nightmare. all we wanted to do was get her to the PANDAS doc to get her better & we could not get her out of the house! My daughter went barefoot for years (no kidding). even in winter. we had to drop her at the doctor's door and she would go in and hide in the corner of the office. At least the doctor knew we were not exaggerating her severity. I have been following your posts for a while & I think our kids are similar. I want to give you hope. My daughter is 15 and after pex twice, a few IVIgs, and a few other things: she is doing really well. By the standards of a non-PANS parent, she has a lot of room for improvement, but she is showering, went to school this year (mostly), swims, goes out for ice cream with friends, emails, has hobbies. She still has OCD, some tics, depression and other psychiatric symptoms, but we are still hoping for more improvement. Her nightmare started in 2008 and here, almost 5 years later, she has lost a lot, but I think we finally have solid hope for her future. Feel free to PM me if you want to talk more! I will be saying a few prayers for you this Friday, T.Anna. A big hug for you, too, dear. I know the H E double-hockey-sticks you are feeling and he is living now.

I do not think autoimmunity is necessarily an "over-active", just malfunctioning immune system. I think your question about the virus causing the problem or settling in because of the problem is a 20k question! Ophelia, I hope you find some help and answers soon. Are you in the US?

My daughter was on rilutek for a long time ( year+) We thought it helped. She is off it now.

My little one's tics worsened at first on steroids. By the end of the month, they were gone.and stayed gone for months.

No rebounds here.

Lauren k, how many times have you done this? This was also my daughters protocol. Well, she was 2g over 2 days- but she is a young teenager. What are you doing to prevent relapse? Does he think this is a chronic illness, needing repetitive tx or that eventually it will remit completely?

Find a new doc. How incredibly pompous to say "not up for debate". So far, we still live in a country where we are free enough to choose our own doctor. my recommendation: FIND A NEW ONE with a clue and a little more humbleness.

Yes. Same here.

If steroids worked, you are on track with immune tx. You will get him well.

Luvox was disastrous for my child. Also IVIg may take awhile- even a few months. has he tried steriods? did they help? Let us know how cunningham tests turn out.

Any med changes lately? Have you done IVIg? When?

I believe chronic infection is not always the reason. Ivig may help, but if an immune system is malfunctioning, it may not last. I think this is a great question, laurenk. I hope it can be addressed scientifically soon.

Hi pgoody, I cannot relate exactly, but your description sounds quite a bit like my teenager's description of her symptoms. Do you have a psychiatrist or psychologist? I think you need to get to a really good one. Does PANS/PANDAS stick out to you as maybe how your illness got started? I am thinking that you may be able to get some help from an integrative medicine doctor or an LLMD (not necessarily for Lyme, but since they seem to get neuropsychiatric illness and organic causes, as opposed to purely psychological.) If you can tell us where you live someone maybe able to offer some names for any of the above specialists. I would also suggest that you contact the IOCDF for help. They are an excellent resource on different kinds of therapy (CBT, ERP, ACT, DBT) and also on the medical end. I hope the best for you!