lynn

Source Naturals has it (Amazon, etc.) GNC has it at half the strength and twice the cost, but you can just drive up and take it away. Also, I'm not opposed to starting at half the strength.

Hi EAMom We didn't specifically discuss them, partly because we don't have any data indicating anything weird on glutamate. It could be that some of the additional lab work he has us doing will bring them up (sorry, don't have the list here at work.) BTW, I bought some Huperzine A and tried it. It felt very weird -- extremely focussed, but in a not unpleasant way. Then everything else became too involved and I abandoned the experiment until things calm down.

Thanks Emmalily, I'll take a look. Thanks Mary M. Continuing to muddle through. In the interim, he won the Science Fair and was apparently able to present his whole project and answer questions totally coherently. Maybe the clarithromycin is taking hold! Or maybe it's just random abilities that he still has.

DS15 has been on a downward slide for about a month. The OCD, ODD, ADHD and other alphabetic problems have proliferated. When he got back to back 65% on a Geometry Exam and 57% on chemistry, we decided we had to do something. Not before time too, because DS now can't do any homework or study for more than 20 minutes at a time. Not to mention consistant rage, inability to have a pleasant conversation, and incessant OCD demands on us. So we went to see Dr. T. He really blew me away. I feel like there is actually someone on our team that knows what he is doing now! Overall info: There appears to be a second form of PANDAS that presents in older kids and is a bit harder to treat than the pre pubescent kind. IVIG typically does not work (we had two unsuccesful HDIVIGs). Many of these kids had to leave school for a while but later grew out of the whole thing (somewhat comforting in that there is still a "growing out of it" component, yet disturbing because if this lasts throughout high school, what about college?). Dr. T thinks we need to do some more pointed investigation of the immune system and we are going ahead with that. He also thinks PEX may be useful but wants to actually investigate what is going on first. We are also trying a different abx. He recommended that we also try Ibruprofen, but in a higher dose and more systematically over a week. This has actually helped--turns out our lack of success was in giving a 185 pound 6'2" child one 200mg pill per day. This was encouraging and a good thing too because the bad thing was that DS was totally unable to do homework, study, or even discuss homework or studying all 4 days of the weekend. He just spent the whole time holed up in his room, pretending to work. It was so heartbreaking. We went to the high school today and asked what we could do. They are just great (it is a tiny school.) His guidance counsellor brought in each of the teachers and we worked out Matthew's plan, including letting him take his finals any day he is ready over the next month, forgiving all homework, and allowing him to take the Regents in August if he can't take them over the next week or so. But it was still so painful I'll keep you informed. I do think there is a good end to this. DH, not so much.

Speaking for the slow-learners department in the back of the room, are any of these similar in their action to NAC? Better? Opposite?

Hi Eileen Dr. B is very good (probably the best) at getting insurance coverage. I'm pretty sure he uses Gammunex (not 100%, but that's what I seem to see my notes saying. Last year he was doing 1.5 (HD) don't know what he is doing now. He is great at premedication--prednisone, benedryl and ibruprofen two days before, during, and 2 days after. Good luck!

Yes, but that's not the whole of it--sort of a whirling dervish of anger/sadness combined with a total inability to focus or think logically.

We had a pretty good run with flax oil (3 or 4 years.) Then it started causing attention problems. Was it that I changed something else that was making his body able to use it? I dont know. I wasn't thinking on that level then (and really am not now, of course.)

DS has never been able to take any fish oil without activation--increase in tics, ADHD, anger. We thought Krill would be the answer, but it was the same pattern, slight improvement for 2 days, then crash and worse.

I'm in the minority, but fish oil, any kind of fish oil including salmon oil, krill oil, cod liver oil causes increased tics and decreased attention. It doesn't improve if I keep dosing, it just gets worse. I don't know why.

Hi Kim-- I'm so sorry it's been such a rough road! We had a similar experience with tanking after IVIG. DS started hitting me and things were getting very dangerous, as well as DS deeply depressed that he was hitting his mother. The extreme rages on DS's part were very much modulated by intensive CBT, so I'm a proponent of that. Our problem is that we have had a bit of backsliding, but I do see DS using his new tools in ways I hadn't anticipated. Haven't gotten Lyme test results back yet. Can you let me know who you are using as LLMD? Lynn

DS is completing his first year in HS in a very competitive school with fancy advanced classes. Before the current flare, we had pushed him to get into the school even though we knew it would be a stretch for him, and we were really happy he got in. Imagine our horror when he started bringing home 70s and launched into major OCD that refused to let him start any homework or test because he might get one wrong (and the school, although listening sympathetically, had written in large letters in their eyes "JUST ANOTHER PARENT WHO IS UPSET THAT THEIR CHILD ISN'T GETTING INTO HARVARD.") Lot of crying went on this year... Nonetheless, I say get her into the honors program. Here is my reasoning: If she is anything like DS, one of the cores of her self esteem is being a smart kid. The fact that she can't produce sometimes doesn't change her appetite for learning, nor her enjoyment (when she can do it) of the competition of understanding. We thought pretty hard about getting DS into a less demanding high school, but we decided that 1)We have to believe that PANDAS (at least in its virulent form) is not forever and when it lets up, DS can astonish everyone with his resurgence. and 2) He would probably do worse in a less demanding school because he wouldn't have the stimulation and competition that he really enjoys, so he would take even longer with homework, even if there was less, and would study less because he wouldn't care. Stress is not all bad I know this is long, but one final thought. We have been struggling with the OCD, and even though we know better, we initially fell into the trap of sort of keeping DS coasting along by doing the busy work part of his assignments. This was a really terrible mistake because then it became our homework, not his. So if you do go ahead with the accelerated class, make sure she is the one asking for help or shortening of assignments or whatever. OCD or not, the work is hers and the only way she will have incentive to beat back the OCD is if she is the one in charge. (I know everyone on this board already knows and practices this, but it is amazing how easy it was for us to fall into...) Whatever you decide, it sounds like she will have a really great team working with her!

Yes, that's the one. Although I 've read over and over that the Igenex often comes out indeterminate, I apparently thought mine would be a clear yes/no. Then adding in the confusing additional test with its weird overtones of alternate immune systems just makes my eyes go all twisty.

DS(15)'s new ID physician ran a bunch of tests, including the Igenex WB which of course was indeterminate. I haven't gotten the copy of the results yet, but he just sent me a lab request to test mannose binding lectins after telling me that the tests he has done so far indicate an "abnormality in how DS' body fixes bacteria and viruses." The actual appointment will be in a few weeks, after the lab suppies the data. I looked up MBL (yet another abbreviation I can add to my list). Apparently this is part of the body's innate immune system and works together with the other immune systems that are acquired over time. There seems to be some confusion over whether MBLs are necessary or not, and also whether they are helpful or not. If you have the MBL system too activated, it could lead to too much inflammation. If you have a deficiency, it could allow more infections (notably candida, among others.) Since I have no idea what motivated the Dr to ask for this, it is hard to predict what the result would be. Has anyone dealt with this problem?

Mom MD, what part do you think PEX played as opposed to the other interventions? Just trying to plot a course through all the possibilities. Specifically, I'm wondering if PEX was necessaray to make the IVIGs more effective, or if it was successful on its own, or effectless? Great to hear that an older child is recovering! I'm so glad for you!

Is urinary frequency/bedwetting one that you should add? Dr. K.'s website seemed to have that as a major diagnostic tell. Not sure if that is still the case though

You know, I have been taking green tea extract myself, on the off chance that the hype about weight loss was true , and I have noticed a fairly good reduction in arthritis pain. Never occurred to me that it was from that! Maybe DS should give it a try!

DS had 20 days of steroids and no improvement. He did get a URI during the course, however, so that may have affected his response. In addition, I didn't then realize how much steroids increased yeast and gut problems. But we didn't have the marvelous improvement that many get.

After reading everyones's extremely interesting and helpful ideas, I realized that we have actually ended up doing the exact opposite from you WOM. DS's rage appears to connected to our attempting to get him to confront and do homework and study for tests, so our previous attempts to sit with him and get him to read out loud, etc, just result in meltdowns, screaming, and long periods of paralysis. Our options were to either become draconian and require homework to start by a certain time, regulate breaks sit with him at all times and demand production, or to back off entirely and let DS know that we expect him to be able to work out how to do this stuff by himself. So of course we tried draconian first and it (as we should have forseen) was spectacularly unsuccessful. Our new model (now two days old) is to carefully not suggest starting HW, not criticize any distraction or time wasting behavior we observe, withdraw immediately if he picks a fight in order to divert to that instead of doing homework, and allow DS to bear the consequences of not getting started, not finishing, or not studying. At our bedtime, we go to bed, whether DS is done or not (although I can't say I sleep while he is sitting there struggling). So far, this has resulted in 2 1:30 am bedtimes, both with homework still to do at lunchtime, but no blowups, no hitting me, and no fights. The real sticking point will be the rest of this week, since it is the end of the marking period and every single subject has a test (including the scary English essay test.) At midterms last month our draconian approach resulted in uniformly poor grades, lats of screaming and hitting, and pervasive depression from DS, me and DH. This time, I have offered him assistance in applying his ERP rules, in studying, and in answering questions and he has allowed some assistance (e.g., drilling on Spanish vocabulary) but not much. We'll see if it works. I also wanted to say that one of the major scary parts of this condition is the fact that our lovely gifted children lose a pretty big portion of their self esteem and self image when these ramp-ups occur and they suddenly have the card catalogue upset syndrome (very interesting discussion). I think that's what has driven DS's OCD to this level this time. I'm just hoping that the combination of treatment and ERP can get him back.

I agree with you about the check ins--they offered me that but to keep the research honest they wanted me to wait at least a week prior to starting. That ends next Tuesday, so I will request as many boosters as they will give me! I'm also asking for a referral. As far as the ERP step, genius about switching the focus to the endpoint and making a master schedule. I think if he could just get into a routine it would make things much calmer! I will tell him that I asked my friend the expert on the board and she suggested this (anyone other than parents has automatic credentials .) Don't know if I can get the HW load decreased though--this is a very competitive school and although they've been great with the 504 you really have to do a certain amount of geometry problems before you get it. And although there are certain teachers who give a lot of what I consider um pointless homework, I probably can't go up to them and say DS didn't do your homework because he has enough to do and yours was stupid. (Entertaining though the picture is...) But really, his workload isn't bad and he could easily get it all done in 45 minutes per day per subject. If, of course, he could only get started. I always appreciate your clarity of thought. Thank you for giving me a new way of looking at the problem. We'll work with it!

DS got out of the intensive with high hopes, and in fact certain extremely troubling symptoms are gone entirely (like hitting me, thank God.) But I need to figure out a smaller step for starting homework. The therapist had given him the idea of making a schedule and letting the schedule drive homework instead of me or DH. But he doesn't seem to be able to make the schedule and/or stick to it until about 9 at night, which leads to going to bed at 2 am--too too late. So I need a smaller step that carries less anxiety to get him on the homework track earlier. Have any of the experts (you know who you are )had a similar problem or can think of a good intervention? We really need sleep! Thanks for everyone's help--without this board I would just be nuts!

I sympathize with your frustration! We have a 504 for DS in 9th grade. He gets extra time on tests, freedom to leave the classroom to use the bathroom or just get tics/frustration out, and no penalty for bad handwriting. This is based on a TS diagnosis. That being said, when OCD and anxiety appeared at the beginning of the year we got a pretty generalized "huh?" from the teachers. From their point of view, he was a mediocre student who was otherwise quite pleasant and they thought we were helicopter parents who were nuts. They still have no idea, and I have no reasonable way to let them know what is goint on. No help, I understand, but my sympathy to you!

We have tried both weekly therapy and the one week intensive. Of the two, the one week intensive was most helpful because it really jump started the ERP stuff and was very on track and helpful. The once a week therapy was not as helpful and we think that what happened is that 1) the therapy degenerated into a once a week gripe session for DS and was prevented by him from addressing the issues and 2) the therapy actually made him more activated because it confirmed his belief that there was a problem without addressing it and getting to a solution. However, the problem could be that there was just a bad DS/therapist match there. For us, the main symptom is inability to do any homework due to anxiety and fear of failure and furious, acted out anger at anyone who tries to encourage homework completion. In the intensive, the therapist set up two rules: 1) If hitting or even "poking" is directed at either parent, we must immediately leave, and if DS tries to stop us from leaving the room, we must leave the house (practically speaking, we must go to the downstairs apartment and visit grandmother.) This has worked very well (in the 3 days since we finished.) 2) Every day when DS comes home he has to make a schedule--30 minutes for English, followed by 5 minute break, 45 minutes for geometry, 5 minute break, etc. The schedule is supposed to be his bulwark from anxiety, since all he has to do is move through the schedule and we don't have to intervene. This has not worked as well and we are tinkering with it (e.g., DS didn't understand that he was supposed to finish each subject in the time he allotted himself; DS, as always, is pushing the envelope as far as how long breaks will be; DS does not want to actually start his schedule until 9 pm, which results in inconvenient 2 am bedtime.) Hopefully we can get this one on track since when we practiced it in therapy it seemed to really take care of the anxiety. If this doesn't get back on track, we will resume weekly therapy with a new therapist--but long story short, this is a great treatment and gives really good insight into not only OCD behavior but also dynamics in which the parents may be adding to the problem--quite embarassing, but at least now we know!

Hi Nancy-- I posted about this a few weeks ago--I copied it below. Just want to add that the astonishing things keep happening. Yesterday DH and DS got into a towering fight about when DS should start homework, and DS calmly told DH that he needed to work on his homework schedule first. DH kept yelling, and DS got sucked into the fight, but then, 5 minutes later he had used the new relaxation tools the therapist had given him and walked out of his room and re-engaged DH by showing him the HW schedule and telling DH that it was his (DS') responsibility to get it done. I was floored! Usually that kind of argument would be enough to destroy any chance of getting work done at all, and would have included a number of angry attacks on all of us along with destructive avoidance mechanisms that would have everyone miserable. Instead, we got a friendly kid who went in and read Romeo and Juliette and found the paradoxical statements all by himself! Here's my earlier post: "Another thing that I am trying is an ERP intensive. Right now Fordham is doing a clinical trial on a one week intensive ERP for OCD kids. The control is that you have to wait a month between the initial evaluation and the therapy trial. The therapy consists of on hour therapy sessions per day for a week. We are doing it during winter break (President's Day.) They can also arrange it so the child gets a session at 7 am, goes to school, then comes back for the second session after school (this would give me an anxiety attack.) They also do the initial evaluation by Skype so if you lived far away you would only have to come for the therapy, not the initial evaluation. The Skype thing was interesting. It is apparently also given in Tampa and the Mayo Clinic. I'll post about how it goes. The Fordham trial link is here: http://clinicaltrials.gov/ct2/show/NCT01194076."

Just got home from day 3/session 6 of the OCD 5day intensive clinical trial. Very interesting, and even a bit hopeful. The therapist is a grad student, which at first made us depressed and discouraged, but apparently all the cases are discussed by the entire group of students and instructors every day, and, in fact, this guy is pretty good. Lately DS' worst symptom has been anxiety over school, intensifying to the point that he can't even start his homework, can't study for a test, and is angry at any school based comment of mine. This accelerates to hitting me when I try to intervene and get him started. As is so often the case, our current model is that it is the mother (me) who is deeply involved in the OCD and must be extracted. The therapist started on the first day to try to peel off parts of the symptoms to eradicate them. We have now gotten to the point that DS sat down today by himself and did a specified amount of homework with no coaching, no hitting, no crying, no anger, and allowed me to do my own thing outside of the house without going into panic phase. Admittedly, this is low stress, it is vacation and the homework is not due tomorrow, but this is still more than I expected so soon. Anyway, just wanted to note that the intensive seems to be a good way to go for us, since the OCD behavior is so ingrained that it is hard to move with weekly sessions. Good to see clinical trials for things other than more and more drugs too!