Wanted: Intensive Cognitive Therapy recommendations (post-IVIG)

[Burnell]

My daughter age 12, has OCD and was diagnosed with PANDAS by Dr. Triffelitti in October 2010 and was accepted into the NIH Clinical study on PANDAS in March 2011. The NIH study resulted in her receiving IVIG in May 2011. Her OCD involves touching and tapping such as doors, walls floors, and the ground. The main thing that sets her off bad is when she sees her 10 yr old brother touch or hold anything, such as a fork, stuffed toy, glass, computer game, etc. Then she must touch that same object right away so he must hand it to her. He just loves it, NOT! At the worst, she touches all day, but at night is worst sometimes taking 3 -4 hours of wandering around the house doing the touching before going to sleep, as late as 3 am. At best, at the end of June 2011, she was mostly touching things at home and at bedtime only for a quick 10 minute trip around the room before bed. The past week, her OCD has come began to grow more often and longer than in June. The NIH doctors have recommended she begin Cognitive Behavioral therapy. We saw a therapist in Lancaster PA, who said our daughter needs intensive OCD treatment. Most of the places with that do it over a 3 week period. Does anyone have experience or knowledge with an OCD treatment for adolescents such as University of Pennsylvania OCD Clinic with Dr. Foa - Anxiety Solutions in Maine with Dr. Fitzgibbons - Or the Univ of South Florida OCD treatment with Eric A. Storch - Or at any other intensive treatment center such as at Yale, NYC, or Wisconsin? I do not care where we go, but I we need a place where they will work with her and encourage her and we will need to get her to do the homework. She is discouraged and cannot stop the OCD. Thank You.

[dcmom]

We are heading to florida with Dr Storch next month.

Insurance will cover, and we will stay in the Ronald McDonald house for 3 weeks.

This makes it pretty economical.

 

Their group is one of the best in the country- and understands pandas well.

[tpotter]

If she's in the study, it means she may NOT have received IVIG (it may have been placebo.) I am not denying the CBT can be helpful, but if IVIG will at least take the edge off things, it may be worth finding out, if you can.

 

My understanding of the study was that if your child received placebo, you can ask to get the actual IVIG if there was no improvement (I may be wrong, but that's what I thought I read.)

 

Do you know if she got actual IVIG or placebo?

[philamom]

Dr. Martin Franklin from University of Penn was recommended to us, but I don't have any personal experience with him. I just wanted to throw his name out there if you are local to the area.

[Burnell]

If she's in the study, it means she may NOT have received IVIG (it may have been placebo.) I am not denying the CBT can be helpful, but if IVIG will at least take the edge off things, it may be worth finding out, if you can.

 

My understanding of the study was that if your child received placebo, you can ask to get the actual IVIG if there was no improvement (I may be wrong, but that's what I thought I read.)

 

Do you know if she got actual IVIG or placebo?

 

 

She had both. The Placebo in April, then in May the real IVIG.

[MomWithOCDSon]

We have not attended either as of yet, but I have heard glowing recommendations for both Dr. Storch's program in Florida and the Rogers Memorial program in Oconomowoc, Wisconsin. Just from the information available and having met Dr. Storch at last year's IOCDF Conference, however, my bias would lean toward the Florida program for a child of your DD's age. USF seems to be somewhat more pediatrically-oriented than does Rogers. That's just my impression, however, and perhaps other folks can speak more definitively to that.

 

I will add, also, that we attended a couple of sessions for kids/teens at last year's IOCDF conference, as well, and there was one for which a panel of teenagers dealing with OCD gave short talks and answered questions, etc. A number of them were patients of Dr. Franklin at U of Penn, and they spoke very highly of him . . . how kind and gentle and instrumental he'd been in helping them overcome their anxiety, etc. He seems like a great guy, too.

[LNN]

I too would have a bias toward Storch/Murphy because of Murphy's involvement with Pandas research. Their group also uses Skype to conduct ERP sessions for those who cannot travel. I don't have details, but I'm certain a call to them would tell you the details.

 

I'm all for ERP/CBT and in no way want the rest of my post to sound like I'm trying to dissuade you from pursuing a treatment program. That said, if you know your child has received real IVIG and has not responded favorably, there may be additional medical issues going on beyond Pandas. I'm not suggesting experts were wrong or that Pandas isn't a component. Only that it may not be the only component.

 

I know that as part of the screening process, you had a CDC western blot for lyme. However, for many reasons, this is not a conclusive test and may be worth re-visiting with a different (Igenex) blood test. You may want to have additional testing on the immune complex system, specifically C3a and C4a complexes, which can indicate bacterial and/or biotoxin (mold) issues. It may be worth re-checking ASO and Anti-DNase strep titers. Or C3d immune complexes. There are other issues as well, and I'm no expert. I only bring these up as a suggestion that there may be more to investigate.

 

ERP/CBT is an awesome way to help any child deal with OCD and anxiety issues. You learn tools that will help you for the rest of your life. However, with infection-triggered OCD, it seems therapy is less effective while the infection is raging, and only becomes helpful when it's combined with the proper medical plan. So I just wanted to throw out some food for thought.

 

Good luck to your whole family. Regardless of which center you end up with, you may also want to ask what they offer in terms of sibling support. Sounds like your son might benefit from some experts who can empathize with his plight as well.

[T_Mom]

I wanted to ask re: the IVIG study.

Did you see an improvement after the "real" IVIG?

 

We were told that IVIG has a half-life of around 4 weeks. Thus, if your child had a noticeable improvement following the IVIG and then started dramatically back downhill around 4 weeks, some PANDAS treating doctors recommend a second IVIG at that point. We see Dr L, and have been very thankful to be able to do so, she is very close to NIH in Bethesda.

Edited July 22, 2011 by T.Mom

[tpotter]

Also, I wanted to mention that my DS18 had excellent improvement after the 1st IVIG. His 2nd was scheduled 8 weeks apart (because that's how Dr. B. was doing it.) He started backsliding by that time. His OCD symptoms took a dramatic downturn (in other word, got dramatically better) after the 2nd IVIG. In fact, he is diagnosed also with Asperger's, and his social skills improved from about a 7-8 year old level to approximately 13-14 year old level...overnight. He was suddenly "getting" things he hadn't previously gotten. He ended up getting a total of 5 IVIGs, and he suddenly reported that his last OCD behavior (something on the computer, and he's 18, so I don't check on him anymore), went away after approximately #3 or #4 (can't remember which.) His 1st OCD (fire setting) went away following PEX 1 1/2 years earlier.) He did say the other day that he was starting to have some problems again, but he was also sick for about a day or two. I think he's o.k. again, because his mood is very nice again. Luckily, he's pretty open with me about this problem, and I have told him that if he ever has it or something else again,he needs to let me know, so I can help him get treatment.

 

Now, that being said, I know there's a lot of discrepancy on this, and please, no one get on my case about it, but if you do have more than 1 IVIG (which I would suggest if you got benefit out of the 1st), and you find that he regresses again shortly afterwards, I would see if there are other infections. Keep in mind that PANDAS is an autoimmune disorder, so the longer our kids are sick, the more chance there is of other infections. My DS 15 has PANDAS, Bartonella, Babesia, Erlichiosis, and who knows what else. My DS18 has PANDAS, Lyme, and possibly co-infections. He was helped more by the IVIG than DS15, but DS15 was much sicker than DS18, and we had to work on getting rid of the infections. We are still working on that in both of my children.

 

So...bottomline, if you got benefit from IVIG#1, as T-mom said, you might benefit from IVIG#2. If you continue to have problems, I would suggest considering the possibility of additional infections.

 

Good luck with this.