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I hate to speak too soon, but dd (who has not eaten a meal in almost 8 months now) had a little victory tonight with food! After CBT today (session 12) we stopped at cvs to get her a little "prize" for "being good" (this is debatable! She had a rage episode, but did cooperate eventually) about having bloodwork done this morning. At a previous CBT session her therapist had her eat some pirates booty which she ate, somewhat willingly (a few pieces only) with a lot to drink, and quite a bit of effort. So anyway, I spotted Cheetos puff corn and got her a bag... Well, tonight, wow! She ate half the bag, with nothing to drink! And then at dinner, she had 3 (gerbil sized) bites of pizza, and didn't even pick it apart! This may not sound like much, but the puff corn and these 3 bites was the most food she's eaten at one time in months! And the only solid food she's had has been grilled cheese soaked in chicken soup broth (to the point of falling apart) and she has not varied from that AT ALL, so this was HUGE!!!!

 

So, here comes the question..... Today was day 6 of minocycline. And today she had an extra long CBT session (12th session, was an hour and a half long)-- which has shown 0 progress to date. (She has "eaten" a French fry-- note the word eaten in quotes--- and a pretzel stick once with the therapist in the past, but has not shown a bit of progress at home, at all.

So, I'm looking for opinions! ;) Is this.....a). A fluke B). The CBT C). The minocycline kicking in Or d). A combination of the above?? I'm sure I'll never really know, and if the progress continues I'll be grateful for whatever it is, but what does everyone think???

 

We had a LOT of bloodwork done today, retesting and checking. I am really anxious for it to come back.... The only thing we've found so far is myco p, but we suspect Bartonella also.

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This is wonderful news even if you do not know exactly what is behind it! I hope she keeps moving forward!!! Sorry if I don't have any answers to your question....I assume time will tell. Is this the first time she has been on that specific med?

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Great news! I vote for B and C! You are in the best position to tell what's working, but for what you've described, a combination of medical treatment and therapy makes sense. It sounds like you're doing the right things and heading in the right direction. Progress can be painfully slow, but you'll get there.

 

If at any time you feel the therapist isn't "cutting it," please remember there is an amazing intensive OCD program at the Rothman Center in Florida (USF). We went through it for our son's school anxiety/refusal, and my only regret is waiting so long to head down there.

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Well, I guess I spoke too soon :( she wouldn't even try anything yesterday.....

 

To those above, and those that mentioned it previously though-- what, in your opinion(s), will Rothman be able to do, that I'm not already doing??? Thinking about picking up our lives and going to Florida for treatment is overwhelming, but I'm wondering if it's something I should be considering or not. We are currently going to a well respected and known llmd/pandas/pans doctor, who is treating her with abx and we will be going on to trying steroid burst next, I can't get ivig covered by insurance right now and definately can't afford the risk of trying and having it not work. She is going for CBT/ERP twice a week at The Yale Child Studies Center- OCD clinic. What else is there???? I am going to try to talk to Dr. L today if I see him-- I don't know what else to do.

 

If anyone can fill me in on what Rothman might have to offer that is different or better than what I'm doing, than I'd definately check into it more! Dd needs to return to health and eating. 8 months is too long!

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This is wonderful news even if you do not know exactly what is behind it! I hope she keeps moving forward!!! Sorry if I don't have any answers to your question....I assume time will tell. Is this the first time she has been on that specific med?

Yes, this is our first trial of minocycline ;)

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I would encourage you to stay on the minocycline for at least 3 months and see what happens. I was told by doctors it would take that long to see the antibiotic would help. The antibiotic really needs to get into her system.

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I think your doc is not being nearly aggressive enough (sorry).

 

In my opinion, 8 months is WAY too long not to see progress. Minocyclene and steroids should have been started way back. I urge you to consider finding a pandas doc that will treat aggressively and help you with insurance.

 

Rothman is the best for Peds OCD treatment. It is daily treatment- plus they are tough , they push the kids. I don't have experience with where you are for therapy- so it might be fine-

 

With any treatment I would expect results- if not- I would look elsewhere.

 

I don't mean to sound harsh- but I know how hard this is- I also know it can get better

Edited by dcmom
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I would encourage you to stay on the minocycline for at least 3 months and see what happens. I was told by doctors it would take that long to see the antibiotic would help. The antibiotic really needs to get into her system.

I'm not sure, but I don't think it's recommended for kids (or anyone) to stay on Mino for extended periods of time.

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I think your doc is not being nearly aggressive enough (sorry).

 

In my opinion, 8 months is WAY too long not to see progress. Minocyclene and steroids should have been started way back. I urge you to consider finding a pandas doc that will treat aggressively and help you with insurance.

 

Rothman is the best for Peds OCD treatment. It is daily treatment- plus they are tough , they push the kids. I don't have experience with where you are for therapy- so it might be fine-

 

With any treatment I would expect results- if not- I would look elsewhere.

 

I don't mean to sound harsh- but I know how hard this is- I also know it can get better

I agree that more aggressive treatment is needed.... but what does that mean? Her last appointment was about 2 weeks ago, and finally her doc does (finally) seem to be willing to get more aggressive. The plan is to have her on a trial of Minocycline, and then move onto steroids. He talked about ivig, but without a positive strep on file, he said it would be incredibly difficult, if not impossible, to get it covered by insurance.

 

The Yale OCD/Turret's Clinic was once headed by Dr. Leckman, (he is still in those offices) and I can only assume that anyone in that office is well qualified and trained in treating OCD. Is Rothman a Pandas/Pans treatment facility, or is it just an OCD clinic? Again, in regard to OCD therapy, I can't imagine that Yale Child Studies would be inferior to any other facility-- maybe I'm wrong?? I guess where I'm heading with this, is that imho, no amount of therapy is going to fix anything until we resolve the underlying medical issue. Not to say that it won't help at all, but I think she needs treatment first, and therapy second.

 

I am open to taking her somewhere, if I can gain a sense of confidence that it's going to help. We have been through a lot, and I'm trying really hard to make the right decisions to move forward.

 

Thanks to all of you for your input! I really do appreciate it. I would feel so lost and alone without all of you!

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I agree about medical treatment that works prior to therapy really being effective.

 

Rothman uses ERP, lots of during appt exposures, along with homework to practice. Not a lot of "talking". Is this what ur therapist is doing?

 

I will send u a pm later with a doc suggestion.

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