lynn

Glad you're getting some traction Emerson! My DS15 is seeing a cognitive behavioral therapist and he says that even more than the tools that he will hopefully be developing against OCD is the fact that the therapist absolutely knows what he is talking about and understands what he is going through. Don't know if you are needing a CBT, but that might anyway be a fruitful direction to look in for a therapist. Best of luck with your appointments!

Thank you guys so much!

LLM, is Therelac something that you should ramp up slowly? I started DS on it and he had a lot of increased symptoms, but it occurred to me that adding 30 billion organisms at once might be a bit aggressive--did you have any experience like that? I'm planning to try again, but a bit more gradually.

What is this somatic therapist? Where could I find one? This sounds promising.

Has anyone seen this doctor? Could you pm me if you have?

We were pretty upfront with them on the PANDAS stuff, didn't seem to bother them. Their feeling was that antibiotics have been pretty stable for 8 weeks (their criteria for drugs) and he has OCD, so fine.

We're in the same place. DS has PANDAS diagnosis, likely had this problem since 2001 but not diagnosed until last year, IVIG helped briefly twice, but didn't hold. Abx help (we know because he flairs when I take him off) but nowhere near 100% and DS is in a very competitive and challenging high school (freshman) with a raging case of anxiety and OCD. We have started ERP therapy which is moving glacially slowly--so slowly that we aren't sure it is moving. So we are considering the two paths--either lyme/multiple infections or psychiatric drugs. Making an appointment today with lyme dr, but don't know when it will be. ERP therapist asked us to consider meds to take the edge off while DS works on the OCD. On the face of it, DS really needs help--Kim, we are on the stage right after you (which with luck you won't have )where we have increasingly fewer options. But on the other hand, I'm really skeptical about the drugs. DS did not do well on 5-HTP, nor on inositol (both seemed to "activate" his symptoms) but the problem could have been poor dosing skills. I will try benedryl/quercitin. 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. I just posted about it in a separate link. I'll post about how it goes. The Fordham trial link is here: http://clinicaltrials.gov/ct2/show/NCT01194076

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

That's pretty amazing. Is this considered a new/innovative treatment or is it just an entirely different group of doctors? Have you noticed any side effects or herxing? Are there any doctors doing this on the east coast? Thanks so much for posting here!

Wilma I know how hard it is to watch this, and I'm so sorry you have to go through it. I imagineyou've already seen advice about advil, epsom salt baths, charcoal and making sure yeast is not rearing its ugly head. The only other thing that works in my house is to try and make the stress level go down. Sometimes this does require inhuman amounts of patience, not to mention allowing things that you might not otherwise allow, but around here once stress is lower, OCD is much more controlable . Once the stress level is down, ERP methods can be tried, and if you post what OCD behaviors are worst, there are some experts on the board that could give you advice on some good ERP protocols. I have to say, I don't know if stress is as much a factor with others, but with my child it is absolutely key.

Thanks Emmalily, as someone who has been through this, your sympathy means a lot! Yes he does have a 504, but the problem is that unless something else changes, I think he would have the same result, maybe worse because even more anxiety. Did you ever have ERP therapy, and did that help fairly quickly (or even slowly?)

This has been the most difficult week I can remember. DS (HS freshman) had his first experience with mid terms week, where he had a cumulative test in every subject (except for the kind lady in art who asked them to produce a picture of how mid terms week feels--there appeared to be a lot of black in DS's version.) DS's anxiety was so high that in some subjects it took him a full hour of diversion, picking arguments, hitting people and raging before he could even crack the book. Finally, DH and I split up the subjects (he got Chemistry, I got everything else ) and took turns sitting with him and drilling him on the subjects. He absolutely could not study on his own. Geometry was the worst--even with me helping he could not study for more than 15 minutes. The level of stress and anxiety was so high that I was actually glad when everything went to h**l in a handbasket at work and I had to deal instead of being at home one evening. We only have one test score back--geometry 68 This from my child who used to be so proud that there wasn't a math concept he couldn't get. I don't know where all of this has come from. We have been on zithromax, had 2 HD IVIGs (last one was about 3 months ago), are currently starting ERP therapy, have no known infections going around, and we are in major increasing crisis mode. I got the lab request for Igenex but no lab kit. I emailed them asking for one but no response, so I guess I have to call on Monday. Is Igenex what I should do, or should I just (like Stephanie) go direct to the Dr?

I have a dream to be able to work out in the evenings (even for 20 minutes) without everything going to heck in a handbasket. Then I might be able to fit into my pre-PANDAS clothes again.

I don't know the answer to this question (I wish I did!) but I am very interested in other's answers! Is Dr. Fallon considered an LLMD? Does anyone know about billing/insurance practices?

DS had a cam kinase of 149 (mean for PANDAS is about 150,) which I took as positive. 3 of 4 of his antineuronals were at the top of normal. I emailed Kathy Alvarez and she said that the antineuronals were in fact significant because they were way different from the mean. If you search on Buster's posts, there is one in which he describes the dilution factors and how they actually get that number--very interesting.

Just want to add that when I gave DS high dose Vitamin C for a while, he presented with a series of bizarre symptoms that stuck around for a day or so, then left. He had strange acne, warts, weird rashes, a little fever. At the time I believe it was viruses on their way out. I did that treatment for about 3 weeks ramp up (can't remember the dose, but it seemed quite high), 3 weeks high dose, 3 weeks ramp down. It did seem to help ultimately, but the symptoms were hard to deal with.

Quick recap. DS14 started ticcing at the age of 5, waxed and waned, then went into a major exacerbation of OCD in Spring of 2010. Went to Dr. B that summer, had several rounds of antibiotics with no effect, had a steroid burst with no effect, but had labs indicating immune deficiency and a symptom list that indicated PANDAS was possible (very frequent urination, handwriting problems, sudden onset associated with illness.) So we went forward with 2 rounds of IVIG, one in September and one in November. Sadly neither the tics nor the OCD really moved at all post IVIG #1. They got worse after the IVIG, then slowly returned to somewhat less than they were before IVIG. We are now 10.5 weeks out from IVIG #2 and have had a similar pattern of getting worse (not so much worse as #1) It is very discouraging! Dr. B had scheduled us for a third IVIG, but given that we were seeing no healing, we cancelled until we actually see some improvement (should that occur.) This feeling is intensified by the fact that DS is in 9th grade now and his grades will affect college, etc. and we don't need to go through another recovery period while trying to keep up grades. Given all that, I am seeing some small improvement now. DS grades are slowly starting to trend upward indicating that his short term memory and math skills may be coming back. Writing skills are slowly slowly improving. Question is, now we have started ERP/CBT for the OCD. So are the skill returns because of the lowered stress and improved concentration from the beginning of therapy? Are the better grades because we have been spending every waking moment tutoring and supporting? Too soon to tell, in my opinion. And there are certainly major setbacks on a regular basis (for instance last night, when the task of memorizing 20 Spanish words was nearly impossible because he couldn't remember...and he became anxious and agitated and truly unpleasant) Still on Azithromycin, treatment dose of 500 mg/day (DS now towers over me and wears size 14 shoes so he gets the adult dose.) I tried stopping the Azith, but behavior and skills dropped precipitously. Our current plan is to continue the therapy and antibiotics, watch and wait. Depending on what happens, we will consider additional testing or additional IVIG this summer.

One thing that helped us was to ALWAYS use the Fast Pass system. It is really fun to walk past those long lines of people and it really cuts down on the exhaustion and anxiety.

At one point I decided to go after viruses. I used quite a lot of vitamin C (capsules, not topical), and warts appeared and then disappeared over a period of about a month. Can't remember if the disappearance was before or after I added olive leaf extract and finally virastop enzymes. The combo helped him be pretty tic and OCD free for a while, but then it all came back. Still, some combo of those supplements might be helpful for the warts.

DS has this periodically. I always thought it was a yeast issue, but it didn't seem tied to other yeast concerns. I'd be interested to know what others thought myself.

I'm by no means an expert, but in my experience die off from things like probiotics would last maybe a day, at most a week. On the other hand, it sometimes takes a while for abx to show a positive effect. You say that you are seeing some gains. Are they somewhat significant and enduring? If so, you may just need to continue for a while. Also, did you notice a downturn after the Nystatin and/or probiotics? If so, you may need to stop one or both of those and see if the gains return. Yeast can sometimes mask gains. You might need to revisit Nystatin and probiotics to de4termine whether they are sufficiently helping yeast. I know it is difficult--hang in there. If you are seeing even modest gains, that is a hopeful sign.

You guys are just amazing. I told DS14 last night that we are not working on hitting this week so he has a free pass on it right now and it visibly reduced the anxiety level. Since then he has half heartedly started up a few times, but when I said again that hitting was not our point of attack this week, it stopped. Then, this morning I was helping with homework and I told him to do one chemistry problem and then do the rest of his homework because it needed to be addressed also and it was hard for him, but he was able to stop working on chem and do the rest of his subjects. Don't know about the rest of his chem, but at least the rest is done:) Thank you all, you are such a font of knowledge

Hi Meg's Mom-- Lynn, I am a little confused by your post. So yes, ERP can make things a little worse when it starts - a talented therapist can help with this as well - but I am not sure this is an ERP therapist? The term ERP was thrown around during our initial interview. This is a Manhattan office that specializes in OCD (and goes on television!!)so I figured they would be ERP. What is your son's anger caused by primarily - is it a reaction to OCD compulsions? I apologize for not knowing this already. If this is an OCD based issue, then the changes you have made thus far would not seem to be appropriate first steps. If you let me know this, then I can give you a little more advice. There are a LOT of therapist that can do CBT, but do NOT understand OCD, or the ERP therapy that is necessary. We do a small non-profit that helps to train therapists for children on this very topic - because finding a really good therapist can be very challenging! There are more for the teen group, however, than for very young children. I will tell you that we dumped a number of therapists before finding a great one, who was indispensible to us. It appears that the anger is caused by anxiety over OCD compulsions. Mostly anyway. Also, I second WorriedDad on asking about the phase of the illness you are in? I think some level of ERP can be done at almost anytime, but what that level is will be strongly dependent upon how well the child has been treated medically. And depending on the issues and the severity, having a really talented ERP therapist is key. He was about 20% down from his absolute worst point, now he is right back up there at the peak. Although, oddly, the exacerbation he is in now allows him to do much better in schoolwork than the worst he was at, which was at the beginning of the school year. He is getting back a little of his self confidence (arrogance) about being able to ace tests (sadly sometimes inappropriately.) The biggest problems he has right now are inability to start homework because of rituals and fear, and anger at his parents when they try to help him get started. I really appreciate your responses--I was feeling so depressed!