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Horrid OCD three months after IVIG


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We just arrived in florida to attend the OCD therapy w/ dr storch in St Peterburg. Our daughter has been evaluated for a year for PANDAS and even in an NIH clinical study. the IVIG in May made her better for 3 weeks in June. But now she is much worse with OCD than ever before. She takes celexa once a day in a low amount. Her OCD has become so horrible it is hard to describe. Walking outside is now a chore, She must stop and touch the ground every few seconds. Sometimes pausing to touch the same area over and over. In public, people must walk around her. She is horribly mean to her brother. She blames him and must have anything she sees him hold or touch immediatley to touch herself. She takes 2 - 5 hours at night to fall asleep, much of that time spend wandering around touching things, even though she is on melatonin and occasionaly rehmeron. Are there any other meds that are good to clear her mind and bring on sleep? Have any of you had success bringing an end to very repetative OCD behavior? This is ripping apart our family. HEr brother cried and cried today cause she is so mean to him, he is 10, she is 12.

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I do not have an answer for you- just to say that we ahve been there. I know how horrible things are for you now. IVIG did not really help my child, that I could tell- though we had almost 3 years of what you are describing by the time we finally got it. Steroids (a month's worth) helped a lot the first time she had them. Pex helped the most- She is just 3 weeks out and is about 50% or more better. It is remarkable. Is there anyway you can get pex?

Is she able to do the therapy in FL? My child would never have been able to do that-- though I think therapy would be excellent, as I am comign to terms with the fact that this may never go away and learning to cope maybe the only thing that gets her to semi-independent adulthood. She is 13.

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I can't help but think that if anyone can help your DD with the OCD, it will be the team at USF. Their reputation is sparkling, and the experts from the Rothman Center that I've met are very wise, compassionate and experienced. Hang in there and try to trust in those folks a little. I just know they'll be able to help.

 

Isn't part of the program a med eval, too? Assuming so, they will help you with her meds; sounds as though Celexa is not the best choice for her, or the dosage is not appropriate perhaps.

 

As for sleep, if melatonin alone is not helping, have you tried valerian root? It might help to additionally relax your DD while the melatonin kicks in.

 

Hang in there! We'll be thinking of you and wishing you and your DD success at the USF program.

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Burnell - first off, I am so very sorry that your daughter is having a post-IVIG exacerbation. My son had a severe exacerbation after his IVIG as well, and we did not begin to see improvement until about 3 months post IVIG, and then improvement was gradual for the next 3 months. He is now 6 months Post IVIG and I can say that he is still not at his "best", but we are continuing to see improvement. The OCD and rituals are the residual problems for us, and we begin CBT next week - though not in Florida (due to scheduing). My son was evaluated in Florida a few weeks ago and the evaluation was excellent.

 

I also recently learned about an inpatient unit at Rogers Memorial Hospital in Wisconsin. I believe it is the only adolescent inpatient unit for CBT/ERP for OCD. I looked into it briefly for my son. The have a 6-8 week wait list, and the length of stay is usually at least a month. BUT the program really looked excellent. It brought me comfort to know that there is SOMEPLACE he can go if he ever gets really bad... and I believe my insurance participates with them.... just something to keep in mind if Florida does not work out as you anticipated!

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Your dd sounds a lot like my dd was at one point. She was completely incapacitated by her ocd. It has taken multiple IVIG's and also lyme/bartonella treatment to get her back. Although she was negative for lyme and bart, her test shows exposure to lyme and her dr. (and I)feels strongly that she has both, esp. based on her response to treatment.

 

I did not think, two years ago, that she would ever be able to live independently. She is 14 and just got her first job at a store making pizza and sandwhiches. Despite a blip here and there, she is doing fantastic, as of late. (knock on wood)

 

I don't know your whole story but if PANDAS treatment alone doesn't work, maybe a trip to an LLMD might shed some light things.

 

After reading extensively about LYme/bart, I came to the realization that I have it too. Treatment has cemented that in my mind. When I'm better, I'm so much better. When I'm herxing, I feel horrible. Those things don't happen to ppl who aren't struggling with the diseases.

 

Keep working at getting her to 100%. It is possible. It just takes figuring it all out a little at a time. And mostly it takes time......hang in there.

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We had a very rocky time post IVIG, but are fortunately on the other side now. Several times after IVIG, our son would regress. Now, I surmise that it was the antibodies finding more "bad ones" hiding in his body, and the bad behavior was part of the die-off process. We gave around the clock benadryl post IVIG when he had those bad periods, as well as activated charcoal. We also made sure the kid was pooping regularly to get that bad stuff OUT!

 

Have you continued antibiotics post IVIG? Perhaps your child got exposed to strep again? We also give our son olive leaf extract, which seems to help too. We did a lot of inositol with IP6 in the past too. If you have continued antibiotics, have you continued probiotics too? When my son's gut is off (mostly with clostridia) he could be extremely mean for no reason to his siblings.

 

It does appear that your child's IVIG was not as successful as some. I'm so sorry about that. It's got to be a huge letdown. I hope you can find whatever is causing this horrible OCD.

 

One other thought....was your child in the NIH study? Is it possible that your child didn't get the IVIG, but got the placebo? This may be a dumb question, but it does seem a bit odd that after IVIG, your child got better for three weeks. With numerous case studies I've read, the period right after IVIG for up to a couple months is pretty rocky. For your child to be good right after for three weeks seems unusual to me, but I am no expert.

 

I will mention that my daughter needed celexa and psych treatment because of her brother's PANDAS. He caused such chaos in our home for three years, and I underestimated how difficult it was for her. If I had to do it over again, I'd give her more respite, and try to find time for just me and her to spend together away from her brother.

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We just arrived in florida to attend the OCD therapy w/ dr storch in St Peterburg. Our daughter has been evaluated for a year for PANDAS and even in an NIH clinical study. the IVIG in May made her better for 3 weeks in June. But now she is much worse with OCD than ever before. ...This is ripping apart our family. HEr brother cried and cried today cause she is so mean to him, he is 10, she is 12.

 

 

Burnell I am really sorry you are going through this. Our Pandas doctor told us that a second IVIG would be considered if our child had a good reaction for the first month or so and then her behavior took a dive. We were told that the half-life of IVIG was about 3 to 4 weeks, and thus, if a child took a nose dive back to symptoms (after an obvious improvement in the first month) then a second IVIG may make sense to do-- I wonder do you know for sure if the treatment your child received in the study was the real IVIG? If the half-life issue is true, it sounds like your child fits that model for trying a second IVIG perhaps?

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Hi Eljomom, that was what we were told. It is one perspective on an example of the "circumstances" of when a 2nd IVIG might need to be pursued.

 

It is also my understanding that yes, the ongoing "healing" takes time.

 

I believe it was Diana P. who mentioned to me that she thought it would be at 6 months after IVIG that the full effects would be evident.

 

Though I get the impression that no one knows for sure why IVIG "works", it is my understanding that it has an effect on the immune response which then continues to positively affect the child's symptoms. Brain healing, basal ganglia quieting, who knows!

 

I think the half-life issue is not as clear cut w/ IVIG as it is with a medication, as the whole issue of why-to-use IVIG is to have an effect on the immune response of the body, and I would think that is a multi-layer process.

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