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BeeRae22

Daughter needs treatment NOW-- Rothman in FL best choice? Other sugges

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"Feeling helpless, DD still not eating" continued... She is on the brink of hospitalization for G-tube. Considering Rothman In Florida, or Bradley in RI if Yale University here in CT doesn't come through. For those of you that have been to Rothman---or anywhere for that matter--- what happens when you come home? Can a couple of weeks of intense treatment really help long term?? Pros and cons of treatment facilities and/or hospitals? Anyone have any other recommendations? Dd needs help NOW-- she is fading away... And her rage outbursts and aggressive behaviors seem to be returning too. This can't go on any longer.

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Rothman was excellent and yes 3 weeks of intensive was very helpful. But our problem was ocd with no major eating issues involved at the time.

Have you contacted. T.mom or michelew on the forum?

Both have extensive experience in anorexia.

 

Have you tried steroids or ivig for this disease? Autoimmune testing (ana, esr, antibodies)?

The brief foray we had into anorexia came after pex (months later ) & ivig helped slowly, along with zithro500 mg daily and augmentin 1000mg twice daily (she was 12/13- 120lbs or so).

Are there any other psych/neuro isssues?

Have you seen this video:

 

Aealliance. Org

 

Go to clinical tab at top and then watch grand round video.

 

Sorry I cannot post link now (on my phone)

 

Sorry for all the questions, just trying to point you in a direction that helped my kids, including one with a brief, sudden anorexic period.

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beerae22 -- Since you live in CT, I assume you also considered the new pandas center run by Kayle Williams at MGH? Has Yale Child Center not been helpful to you? They were the NIH center for Pandas study and I would assume that they could be very helpful to you.

best of luck

Edited by pr40

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Waiting for Yale to call back. Someone there said that they thought they might be ale to help, but she wanted to check with the director first. I was hoping for a call back yesterday-- didn't get one.

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Kyle williams is Lekhman's student. We saw him in January. His secretary's e-mail is pdownes@partners.org. there is a long waiting list, of course. But my understanding is that for urgent cases, they make exceptions. They are trying to be a PANDAS clinic and should be able to understand your case and at least try to do something. They are also connected to child psychiatry dept at MGH.

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So sorry you are in this situation. I recommended Rothman- they are the best at what they do. However, I do not know if they can deal with the "medical" portion, the nutrition tube, etc. I would email Dr Storch there and tell him what is going on. He may have a recommendation.

 

Rothmans program is three weeks, it does take that long to deal with the OCD- she won't be eating overnight.

 

To me, esp with the return of rages, etc it seems she needs pandas treatment (steroids, IVIG, pex)- and I think most have found therapy works MUCH better post pandas treatment. Although I wonder if a doc will do one of those treatments if her health is threatened by the not eating piece.

 

Do you have a doc you are working with? Maybe the doc could contact either: dr Beth Latimer in MD, and Dr Souhel Najjar in NY. They are closely connected to their hospitals and do PEX. They might work with a doc to admit her for a nutrition tube if needed, and then once stable do PEX. Then you could follow with therapy at Rothman.

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If I have anything to do with it, she's not going to get the tube ;) the thing is, while her ped says "it's not the end of the world", I know it would be too much for her and its not going to FIX anything. I'm staying on it, and pumping her full of as much Boost as I possibly can until I can get her into a program. It's just that this can't go on any longer, or we're going to be out of options. If I can get her in somewhere within a 2 hour drive, than I would do it today. Something's got to happen here.

 

Thanks Pr40, I'm going to email them tonight.

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Hi, we went to the Rothman Clinic last summer for the 3 week (once a day for an hour only) intensive CBT program for OCD.

 

My daughter's have both had severe anorexia issues in the past, and fairly straight forward PANS issues, (ie. textbook). The time at Rothman was amazing. Therapist was very, very skilled. However, my daughter DID NOT have eating issues at that time..and she had just had plasma pheresis a few weeks earlier..she was doing better post-pheresis (she had severe OCD and raging issues) and was "available" to the intensive CBT thanks to the pheresis...it was still a very rough go doing the therapy, intense but helpful. They are as skilled in CBT as there is, a remarkable CBT program.

 

From the description, your daughter is so far down in her BMI that she is in a critical state, and has been for sometime. (Thus, the tube feeding is being recommended by your doctor to establish a normal balance in her body--this is critical.) This must be dealt and I know you want to take steps to get her weight restored to a safe level.

 

The longer this goes on there is an increase in possible heart, organs, etc. being damaged -- please do not wait to get the eating disorder issue under control.

 

We saw the E.D. team at The Children's Hosptial in DC (both daughters, for months)...

 

....When I felt like we could not handle the situation, and the doctors were recommending tube feeding on an inpatient ward we considered going to the Kartini Clinic in Portland, Oregon. It is designed for children, and the expert doctor (Dr Silber) at Children's ED Clinic thought VERY highly of this program. You may want to look into that if you can. They will make her follow a prescribed routine -- inpatient or outpatient. You can stay nearby. It is very highly thought of and works with children. We almost went, but that time my daughter started to eat again after pheresis (both daughters have had it.) The Kartini Clinic would re-establish her eating before she goes home. They may be worth a phone call or email to describe your critical situation. They have a waiting list often, but take critical cases -- have a doctor call.

 

I truly believe that the brain needs to be re-nourished before you can start thinking about places like the Rothman. When a child is so far down -- PANDAS/PANS or not, the immediate need is nourishment before they can deal with the OCD issues. Please pursue this. I am happy to talk with you again if you want to pm me.

Edited by t_mom

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