PowPow

YES!!! the study, why didn't I think of that??? Listen to Determinedmom (she should be called smartmom, too!), contact them about the study!

Missjo, How is going?

I do not know if someone posted this already or not: OT/parent conference THANK YOU TRUDY

Never heard of Dr Baig, is he is southern MD? There are lots of Virginia Parents here! You are in good shape to see Dr L- though i know it is forever. She WILL help you. Call her office and tell them you will come for a cancellation, they do keep a list and will call if they get one, since you are so close (relative to some of her patients!) Now you can be writing a timeline (keeping track of up s and downs), videoing any movements or behaviors you can. Also, have you tried to dose him with Advil a few days, some find that helps. Try to get more antibiotics-- have you gone back for a strep recheck? It could be positive, still! Can you print this out and take to your ped? IOCDF PANDAS It is written for a clinician and it gives some guidelines. Many kids are on prophylactic antibiotics for these reasons: 1. prevent strep & 2. they are properties that help with the inflammation that most likely causes all this madness. For you: try to sleep! You need to be in top notch shape to deal with this. easier said then done , I know. I too had an exorcist kid (also at age 10- she is 14 now) Another thing to consider (depending where you live) there is a PANDAS support group meeting in Rockville in a few weeks (previously they have met in Fairfax County and there are a few people who meet in the Potomac Mills area. They are taking about insurance stuff next time, but it might help you to get in a room of parents who have been there or are still there. You will find lots of VA/MD parents here, sadly. But at least we all have each other!

Pm d you about UVA.

Sorry to hear he has strep,but... at least YOU know you are not crazy We all knew it and now you do, too!

I have nothing new to add... but I was going to say- that is great that you have a pediatrician who brought PANDAS up to you. an open-minded, sympathetic doctor can go along way. I think the several factors you mention really push it in the direction of possible PANDAS. If you are in Virginia (assuming based on your name) there are lots here from many parts, but especially Northern Virginia & one of the top PANDAS docs is in Bethesda! She has a LOONG wait, but there are other things you can do in the meantime. It sounds like you know what you are doing

Dr m told me she starts zoloft at 6.25, only a quarter of a pill. After our experiences with these meds, I was impressed by that! Our current psych wanted to start at 25 and go to 50 after a week. I chickened out and never went up! my dd refused it soon enough soon enough anyways! We stayed.at RMH also. My daughter and I went alone, but my husband joined us that last few days, which was important. If you can both go, much better ! A single sibling would be ok, probably, but they do not have much room there. I cannot say enough about that charity, the peopled who brought food and of course the Rothman Center!

Iowadawn, Those side effects are definitely very serious and unfortunately not the only serious potential ones from anti-psychotics. I am the first one to sing Risperdal's praises for my child- it toned her rages immensely, but this medication is not to be messed with! I am really sorry your doctor there is not getting the point. I think heading down to Dr M is an excellent idea.

If you get a psych consult there (Dr Murphy and her crew) they will certainly go over the long list of meds. Remember-- she is the go low & slow lady! Risperdal also helped calm one of my children immensely, but I can understand if it did not work out for you- we had some serious side effects (very,very large of amount weight gain, but for that we did a risk vs benefit- the weight melted off after discontinuation almost 2 years later)

Sounds great Nancy! Now, If I can convince myself & my better half that we need a Vita-Mix... I could do this!! every blender I have ever I had I have broken! I use a stick blender now and it is awful difficult with even semi-frozen strawberries. Is there a smoothie/blender trick I am missing?

Awesome Emmalilly! Thanks for updating us. I had abdominal migraines as a child and took Ergostat for them. I have never heard of them since & I honestly thought the doctor made them up! Guess not. I am wondering about Emerson, anyone heard from her? Pandas16 quit the forum- but I have been wondering about you older ones!~

WOW-- WHY IS THIS NOT COMMON KNOWLEDGE? Or is it and I just did not know? I thought nitrous oxide was fairly safe. eye opening. and frightening. Thanks.

PM'ing!

Can you use an acid blocker.or reducer before the celebrex? Like hours before?

Excellent advice! Maybe you can get something (abx) started from dr b and then if ivig is needed you can go to dr l and be at a much more convenient locale.

You are doing great, kimflow! Do not cancel latimer, but maybe call dr b and see how long the wait is. Even if you go see him, keep that appt with her and decide much later whether to get rid of it. Several people go to multiple pandas docs. It is ok and dr latimer would not mind. Worse thing that could happen is you spend more money and have more labs, information and opinions and are armed with more info when you make a decision. We see her, so she is my preference:) But I know the feeling you are experiencing and I think some movement and getting started might make you feel better and might get your son on the road to recovery already! Also remember they are specialists first and PANDAS docs second. They will each a particular bent they will look at PANDAS from. I sent you an email a few days ago, too! Hope it came through.

Thanks so much for posting this! I cannot wait to show my kids.

Have you thought about making cds of the talks? Or making them available online, even as a fundraiser for dr cunningham or something? I cannot be.there, but I want to hear what missed!

I do not know about that, but on the pandas page on their site, I believe there is a place where you can get a form to fill out to offer to help our "cause". They want volunteers in many capacities. That may be what you are referring to.

I am interested in this. My severely affected daughter is normal MTHFR, however had high homo cysteine recently. The other affected children have not been checked. I find out interesting watching this unfold. Thanks for posting this, dee!

Dr L & E, I think they "save" it for the most severe kids. I think this because I have come across many of their patients, but only a handful who have had pex. However, maybe other kids get better with abx & ivig, maybe it is a $ issue, maybe parents are hesitant, since it is so invasive. I feel it was so helpful for my kids and I would do it again or for another child in a second if Dr L thought they needed it. It did not totally "fix" my kids, but it was clearly the single, most helpful intervention, besides the initial steroid dosing. I hope you can figure this out, best wishes to you.

There are.some links to pro-life organizations that do not vax or are selective for pro-life reasons. I am sure there are others, but" children of God for life" is the one I know of, off the top of my head. For autism friendly peds, I am not sure, totally. I think I could find out for my community from a community yahoo group we have . It is not specific for kids or autism, but an excellent way to get community info. Maybe you can go to yahoo and see if there are any groups like that for your geographical area. A developmental ped is as great idea, too.

I would ask parents of autistic.kids. They really seemed to have fleshed out done doctors, at lest on my area. Another option might her to look for docs who.are open to no vax-they seem to be a.little more open minded in general.

Corinth dad, It makes me smile to read she is on her way up. And..... You are so right about the ignorance (and pompousness) of many in the medical community. Maybe all our kids will go out and make a difference in this field! Thanks for updating us!