lynn2

We went down there in January. We saw someone from Murphy's staff (see above posts on coordination of the 2 offices). Didn't get much PANDAS treatment there since we've tried most of the usual treatments. However they did recommend we try Risperdal when we got back home. We did get quite a bit from the 3 week intensive though. DS has a lot of problems with rage, hitting, impulsive problematic behavior. He is pretty atypical likely because he went so long undiagnosed. He had also stopped doing all homework and taking all tests at school. We, as it turned out were sort of enabling this behavior by our response to it. The therapists there really helped us to respond better as a family and laid some good groundwork for continuing. However, we didn't really see the progress until we added on a tiny dose of Risperdal. It has lowered the volume enough that we can actually make progress with what we learned there. Anyway, I highly recommend the treatment there and can attest that even if your child has weird symptoms, they can figure them out, if not completely cure them.

We got DS extra time to take SATs in 7th grade for Johns Hopkins. He didn't have a 504 then and they were very picky about having the exact tests that ate specified in the guidance documents. They also cluelessly lost our application twice. But once you get it you are good for all of HS.

For those considering psychiatric drugs, we thought that Tenex was probably the least intense drug we could try as a starter, but it was not helpful. DS became really anxious and angry. Many of his old symptoms came back, including the dreaded one of hitting me. We started with the smallest dose and observed no real effect the first couple of weeks, although DS felt that his tics increased and that he was somewhat angrier. We upped the dose last week and within two days he demanded to get off it. We tapered off and now, 2 days later, are back to baseline. Now the Dr wants to try stimulants which I am willing to try since apparently problems will show up right away and leave as soon as the drug is stopped. Anyway, DS is self medicating with coffee...

This gives a list of a whole bunch of organizations that will refer you to psychiatrists who do CBT. There is also a list of centers that do OCD/CBT intensives. http://www.brainphysics.com/resources.php Since this comes out strangely, the website is www.brainphysics.com/resources.php

I'm glad to hear that he has improved so much--if you don't mind my asking, what has improved? I'm trying to figure out how to measure improvement.

You're sure you did this in Tampa? It amazingly sounds exactly the same as when I did it in deepest Queens! I thought it was just typical NYC behavior. One thing the tech told me was that even if they are fasting they need to be really hydrated the morning of the test because dehydration increases the likelihood of the vein collapsing. Best of luck with the testing!

That's a really good list and encompasses about everything I have. The only thing I would add is being forced to wear long sleeves, but I think that could be a combination of OCD and tics.

Thank you all very much--I don't know what I would have done without all of you. So I think (if I can convince DH)I should check with Igenex. I did get the ILADs list of LLMDs, but I trust you all more than them, so does anyone have an LLMD to recommend in the NYC area? Lynn

I'm so sorry you are having to deal with this. I know that scary feeling that your child has gone away and can't be reached or helped. My main input is that I agree with your plan to find a PANDAS doctor to help you. The relief of having someone who understands what the problem is and can help you plan and understand the treatment is nothing short of awesome. It can be so draining having to be an expert in an area where you have no training or experience!! I hope things are resolving for you now and that you will be able to go home soon. My thoughts are with you! Lynn

DS doesn't have any eye problems that I am aware of, but no one asked and there were no eye effects that I am aware of from 2 IVIGs

DS14 has had two IVIGs, one in August and one in November 2010. The first one did nothing that I can tell--he got much worse for a while and then got barely back to baseline. He was on Omnicef, got some sort of exposure and went into exacerbation. I tried substituting OLE and the bottom dropped out, then we switched back to Azithromycin and shortly after that had IVIG again. This time, although we haven't seen the major getting worse part, we still haven't seen any improvement. The odd thing is, though, that we have kept the azith up for the whole 6 weeks even though we don't think we have ever seen any improvement on antibiotics, and DS had a stomach ache and I stopped the antibiotic since it appeared that it would just come back up. I didn't start the azith back up again for a while, just gave some OLE in case the stomach problem had been c.diff or something. Rages suddenly started appearing, along with weird scary OCD stuff centering around hitting me (DS is 14 and 6 feet tall.) He never actually hurt me or even left a bruise, but he started to have daymares about really hurting me and how he would feel about that. His anxiety, consequently went through the roof, resulting in even more OCD. This was all occuring while he was trying to excel in his very competitive high school. (His art teacher, a wonderful woman who really likes him, called up and asked why he was continuously trying to start arguments with her in class.) After a while it occurred to me that I hadn't restarted azith. I did that, and everything began to go back to normal. That was 3 days ago, and he is pretty much back to baseline, which isn't exactly great, but certainly better than last week. This was a real surprise. We didn't see any improvement during the first trial of azith and we assumed it was having no particular effect, but apparently we were wrong. In fact, we were beginning to think that he didn't have PANDAS at all but just tourettes sadly complicated with developing OCD. But if the antibiotics are helping, but IVIG so far has not (after 17 weeks from the first ivig and 7 weeks from the second,) then ...what? Are we also lyme candidates? We did quest western blot and myco, with totally negative results. Maybe we need to try Igenex.

As of last year Cunningham is tax deductable. They have it set up as a foundation and will send you a receipt.

Would you mind my asking how the IVIG treatments are going? Is the lyme testing just to make sure that nothing is missed? Just asking because after 2 IVIGs, we are just now seeing only a tiny bit of ephemeral improvement and looking for any light at the end of the tunnel.

I tried DS on enzymes. There are some that really don't work for him (can't recall the brand, but they make Trienza which works for many people, just not us)--they make him hyper and increase his tics. He did well for a year or so on Enzymedica Digest Gold and Glutenease, with Candidase for yeast--it really did seem to improve all of the symptoms although they were still there. Then we stopped when we started the PANDAS treatment because it seemed like just too much. I tried starting again recently and they seemed to make him worse. Could be I started too fast--low and slow is absolutely essential for enzymes. Or maybe the worsening could have been totally unrelated to the enzymes. The Enzymedica manufacturer has stated that they don't interfere with antibiotics.

On our 1st IVIG, DS14 had about one or two good weeks, then the effects went away. Had a second one two weeks ago and everything became spectacularly worse. Slowly coming back again with many saw toothed effects. My Dr thinks that 3 to 4 is a likely number to start seeing results. Of course, DS has had this since 5 and is now 14, so may need quite a bit more than younger, shorter duration patients.