peglem

Dancing for you, too!

Welcome! This is a great place to be, if you need it. Sorry you need it! IVIG results seem to vary alot from person to person. I think you'll be in good hands w/ Dr.K. We've managed to get treatment locally here in Phoenix and my daughter gets IVIG every 4 weeks right now.(immune deficiencies also) She has had PANDAS probably from infancy and is nearly 16 years old. We only started IVIGs this year, but are seeing some pretty amazing results- ie..here: http://www.latitudes.org/forums/index.php?showtopic=9119&st=0&p=76029entry76029

I'm worried about how this might work in actual practice. Right now, doctors are able to code PANDAS/PITANDS under things that have fitting criteria and often are getting treatment approved that way. If it has its own code...would it have to have clearly defined treatment protocol to get the treatment covered, or would they then say all treatment for that is experimental? I mean the insurance companies could then point to NIMH treatment recommendations specifically for PANDAS and decide that's all that will be covered. Or, am I way off base on this, not knowing how it really works?

Have you ever looked into a possible underlying medical cause for your OCD symptoms? The fact that you have major flares (like when you were 14) and are refractory to SSRI therapy, raises the possibility that this could be related to an infectious agent of some sort. Please do some reading on the PANDAS/PITAND board and see if this is something that you might want to explore further. If you have an underlying immune problem, treating that can go a long way towards resolving OCD symptoms. Wish you all the best. This is a difficult disorder to live with.

Michael, was wondering if we could get an update on how the drops are working out for you?

Sending lots of prayers! I know how stressful this can be...many many struggles with schools over the years.

Fantastic!

So is he on no abx right now?

Welcome! We've never used doxy, but have had success w/ intial course of rifampin/augmentin combo, followed by 500mg zithromax every other day. My daughter is 15, and has been improving since "real" treatment started the end of last year. And we're not sure of age of onset, but probably infancy, so she's been dealing with this pretty much her whole life. Rages suck, and they were the worst for us, though my daughter is nonverbal and severely developmentally delayed. But getting rid of the rages...it changes your whole life! How long has your son been on doxy, and have you seen any improvements yet? I'm curious about why that particular abx was chosen?

I'm not an expert, but my understanding is that Lyme causes immune problems that make its victims more susceptible to other infections and autoimmune disorders. So some of what may be listed as Lyme symptoms could actually be symptoms caused by things that Lyme "invited" in.

Ahhh, didn't work that way here!

Well, in defense of this particular psychiatrist- we were sent to her after I had completely soured on the whole profession at the request of our wonderful pediatrician who was feeling alone in all the world trying to help my daughter- before we knew about cunningham tests, PANDAS doctors, mouse models, etc. The last psychiatrist we had showed me the door because she was "not going to risk her career..." (Which made me say something snotty, but only because I knew I would not be getting any help). So, I agreed to go to this psychiatrist that was found by the pediatrician, only because the pediatrician wanted me to. I was very hard on her (and psychiatry in general) and she has stuck it out and really tried to help us, offering her expertise in medications, but really not pushing anything and honest about the the experimental nature of what she was doing (especially with my daughter). She looks things up all the time for us, and one thing she said yesterday is that We(meaning psychiatrists) are really dealing with a group of symptoms and we don't always know the cause." That was not news to me, but a psychiatrist openly admitting that, is, in my experience, quite unusual. I'm no defender of psychiatry, but this one is special!

That's lovely! Thank you for sharing it!

Yes, his tooth fell out on Sunday night. Would that explain the tics beforehand as well? I think it could. We've gotten the worst exacerbations around teething and dental work.

Peg, this tango with the psych is priceless! When she mentioned the word controversial I can just hear you saying "This is true, but fortunately more and more physicians are getting their heads out of their arses everyday OMG! Did you have the room bugged or something?

Well, I've been tempted, but have never actually tried it. Still not too late, though!

My daughter has been helped with valium- doesn't do anything about the OCD, but does help with the anxiety. I used to hate giving her this- now I just dislike it. But, when you're in crisis mode, just hanging on until you can get things settled down...one does what one must! I know others have used Klonopin (hope I spelled that right) and I've also had some success w/ valerian root, which is a "natural" OTC supplement w/ anti-anxiolitic properties.

We had an appointment w/ Allie's psychiatrist today (and her med student) and told her about our positive developments (last time we saw her was just before our 1st HD IVIG after our 2nd low dose- not a good time, as we were requesting more valium, PLEASE!), as Allie calmly engaged the med student in helping her find the View Master to go with the reels she'd already found. Yes, my daughter initiated interaction with a stranger! She noted the healed skin on Allie's forearms (from biting herself) and even the scars are fading. The forehead sore that she's had for at least 5 years (from banging her head) is healing as well. We've been keeping the psych apprised of what's happening w/ the PANDAS treatment and she's been kind of patiently watching to see how it goes. She was very happy to hear about the improvements...and mentioned to the med student that PANDAS is controversial, but since we had kept all other treatments the same, it must be the IVIG that is responsible for the changes. I shared some of the experiences our pediatrician has told us, about amazing recoveries of treated children (caught early), and told her he would welcome any patients that she might want checked for PANDAS, stressing that it couldn't hurt to at least try abx for these children first. She said OCD is particularly hard to treat. She did write down the name of my pediatrician...I hope she'll really use it! BTW, valium usage has been greatly reduced!

Well, I suppose you could end up w/ MycoP IgG titers running higher from IVIG, but would they still be that much higher 2 months later?

Well, I'd appreciate some basic guidelines and some critique of my story (how its written, do I need to clarify, etc) before publishing. I'm willing to try, though the thought of revisiting the early days is scary.

My daughter eats a lot of yogurt, and takes nystatin 2X/day, and when I remember she gets probiotics (prolly about once a week)...she is on zith, which is the only abx that does not seem to give her yeast problems w/ only this treatment.

This brings back memories. One summer, back when my daughter was still "just autistic," she was afraid to go down the hallway where both bathrooms and all the bedrooms are located. She was also a little stripper that summer, so we ended up with a lot of messes right before the entrance to that hallway. Don't remember how she got over it- just one day started going to the bathroom again. I'm so sorry this is happening, sorry the wine doesn't really make it go away! Can your son say why he's afraid of the bathroom? I hate to suggest this, because it kind of feeds the OCD, but can you make some kind of magic talisman that will protect him in the bathroom. Sometimes, when you're in just barely surviving mode, you can trick the OCD with a sort of counter OCD.

Well, we use 500mg zith every other day, following 3 consecutive days for a loading dose. It seems to be working for us, but my daughter is doing IVIG every 4 weeks.

Man, I wish I could help, but I just really don't know. But, I think its the IgM that peaks w/ 1st infection. My impression from reading (more than I can comprehend!) is that IgM is produced 1st w/ new infections, until the IgG becomes plentiful enough to take over,(or IgM turns into IgG?) and then, subsequent exposures to the same microbe should trigger immune memory- which is mainly an IgG response. If I don't have that right, I hope somebody will correct me! So based on my understanding your results do not make sense to me...unless the IVIG does something to immune memory- or does "rebooting" the immune system cause it to go back to the IgM production?

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