Feeling helpless- DD still not eating

[BeeRae22]

I have posted a number of times in the past 5 months. My PANS daughter is still not eating. Her severe ocd symptoms cause an extreme fear of choking and swallowing. She drinks only Boost for breakfast and lunch. At dinner, I make her sit at the table. She becomes extremely aggitated and angry most times-- last night she was hitting me, scratching me, angry face, slamming her fork, etc. It takes me about an hour to get her to eat 8-12 or so bites of food, and she drinks another Boost. The only food item she will eat willingly is chocolate ice cream.

 

I finally found a LCSW that treats children with ocd that is about 35 minutes away to treat her with CBT and exposure therapy. It took me 1 week to get a call back from her initially, and then we waited another week and a half for the appointment. She told me that she had been ill. Last Thursday, 3 hours before the appointment, she had an "assistant" call to cancel, saying that the therapist was ill, it would be several weeks before she could see my daughter, and she didn't know when that would be. She gave me a name -- Joe Brown, as a referral, but didn't even have the phone number, and he's further away.

 

I am so incredibly sad, and frustrated. She still hasn't even replied to my email or called. I had really built up this appointment to my daughter too-- that she was going to get the help that she so desperately wants and needs. I cry almost every day. I lay awake worrying about her almost every night. Why is it so hard to get help for my beautiful 8 year old little girl? Do I move on and try to find someone else, or wait for this woman to call me back? I keep taking my dd to another doctor, another therapist, another appointment. She is getting frustrated that nothing is helping her. I had such confidence and hope for this therapist after the 2 1/2 hour initial conversation I had with her. She was the closest I could find, takes our insurance and really seemed to know what she was talking about. I don't know what to do. I can't tell my daughter one more time that "this person is going to help", only to be let down again. Should I just wait a few more weeks?

[michelew]

I don't know what advice to give you, but just wanted to tell you that my thoughts and prayers are with you. I can certainly relate to the pain and anguish you feel each day. My son has been battling this disease for over 3 years, and a big part of our issue has been anorexia nervosa. He is now 14 and is almost 5'8 and weighs only 90 lbs. He looks like a skeleton. I am able to get him to eat, but he watches every single calorie, and is over top of me every time I prepare a meal. He is obsessed with restricting calories. We have been trying everything from high dose abx to heavy duty immunosuppresants, and we're still battling this. All I can do is let you know that you are not alone, and I'll keep you and your daughter in my prayers.

[lfran]

Have you called the Rothman Center to see if they handle eating-disorder OCD? They are really some of the best in the country. Even though they are in St. Petersburg, Florida, and it seems ridiculous to have to travel to Florida to receive good ERP, that's what many of us on this Board have found out from trial and error. Many of us have tried one or more local therapists only to go to Rothman and have them make more progress in a few days than the local people made in months. Rothman runs intensive OCD programs -- they meet with you every day (or sometimes twice a day) for one or more weeks. They take most insurance and they were wonderful for us, after we had tried 4 local therapists who didn't really do anything.

 

I strongly urge that you at least call them and see if they can help. Unfortunately, right now it is spring break time so everyone wants to vacation in Florida and airfares and hotels are high. But prices will go down after the rush, or it may be worth it to go anyway, if they say they can help. I personally would not be enthusiastic about a therapist who knows how serious your child's situation is and who keeps putting you off. And I have personally met with several therapists who were local to us who assured me they knew all about CBT and ERP and they really couldn't hold a candle to the people who really *do* know what they are doing. And it is so sad, because all the literature says this is the gold standard for OCD. Why can't the therapists do it successfully????

 

So sad. This is a *!*&% disease. We all know it.

[lfran]

Also, you can stay in the local Ronald McDonald house and that is free (or extremely low cost -- I forget which. Like $10 a day or something?) And it is walking distance to Rothman. And the airfare and lodging can count as medical expenses on your taxes, although you have to have a lot of medical expenses until the deduction kicks in -- it used to be 7.5% of AGI but I think they raised it to 10%.

[PIK]

I did CBT too. It really DIDN'T help me as I was too sick for it to do anything. What did help about it is that the doctor told my psychiatrist that we were dealing with OCD and not schizophrenia (which I had been saying from day 1) What DID help was Anafranil. It was a miracle for me. I'm in no way a doctor, but it sounds like what your daughter needs is the right medicine, not CBT. Your doctor should be trying any and every drug to help her since it's an issue of not eating. I of course wouldn't want to be responsible if anything bad happened, but I urge you to discuss Anafranil with your doctor. From my experience at least it was a sickness (i.e. illness) and needed medical treatment, NOT "techniques" and "therapies" and "talking" etc. I see it like an infection - you need antibiotics or medical therapy. Talking about the infection or discussing it or whatever until you're blue in the face won't heal it. I just get really frustrated sometimes because people would tell me to "try" and to "fight" etc. Your daughter needs the right med.

[dcmom]

I strongly second Ifran's advice.

 

PANDAS treatment is twofold, medical and psychological. The sooner and more aggressive the treatment, the quicker the success. You need a pandas doc to prescribe immune dampening treatment: steroids, IVIG, PEX. If one does not work, you should fairly quickly move on to the next.

 

Second, most also need psychological treatment. The preferred treatment for OCD is ERP (exposure, response prevention). This isn't always easy, and you need a really, really good therapist. We have not been able to find anyone great locally, so my daughters did the program at USF. I cannot put into words how remarkable the docs there are!

 

Not eating is a very, very serious issue. Your daughter is young, and you are new at this. You really need experienced professionals to help her. They will also take the weight of the world off of your shoulders, and teach you how to deal with OCD.

 

Good luck.

[BeeRae22]

So, the therapist that was going to see her called me yesterday and told me that because of personal reasons, she can't take her on as a patient at this time. I am back to square one. Also yesterday, my daughter had a yearly physical at the peds office. She has fallen two levels on the growth curve-- has lost the pound and a half that I struggled to get back on her. The ped is talking about a feeding tube, which I know in her current mental condition would be devastating for her. I am going to do everything in my power to prevent that from happening.

 

She is seeing Dr. M and has been on Azith for 7 weeks or so. She is also more recently taking the MycoP drops. Her depression, agitation, and most other behaviors have improved significantly, but the eating piece has remained. Dr. M seems to think that continuing the azith is the best course of treatment,, but she is starving in the meantime-- literally. Should I push for a change in meds? If the ocd is medically rooted, is CBT really going to help? I can't even find a therapist locally (yet) and this can't go on for much longer. She is going to end up in the hospital. If the azith has improved her other behaviors, why is this piece of the puzzle so hard to resolve???

[mdmom]

Rothman saved my son's life. We went there for ERP therapy for a total of 5 weeks last year (2 separate trips). It was worth the time, travel and inconvenience of being away from home.

 

The second time we went was for eating issues related to fear of vomiting.

 

I highly recommend you at least call there. Explain your situation to the receptionist and ask to speak with a doctor. The director of the program spoke directly to me before we made arrangement for my son to go. He went over my son's symptoms with me and decided that he would be a good fit for the program.

 

It is also really helpful that they "get" PANDAS at Rothman. They recognize that a lot of kids have a medical basis for their OCD and they accept that a lot of parents are finding help for their kids with antibiotics, IVIG, etc. and I have never felt judged that my son wasn't following a typical course of treatment for his OCD (i.e. psych meds).

[qannie47]

I really feel for you. I am sorry that things are so hard/stressful/worrisome for you right now. I hope you find a therapist soon. Does she drink the Boost willingly? If so, maybe you can add chocolate icecream to it and pump up the calories. I know this is not ideal, but in the meantime, until you can get her under some experienced care, if she is willing to drink unlimited Boost, I would at least go with that. Boost was originally made for Aides victims, and so it is loaded with essential ingredients.

 

Is Boost the only liquid? If it is her fear of swallowing, would she submit to fruit smoothies? Anything liquid that you can fortify.

 

Do you think she might be interested in helping you create liquid nutrition? Perhaps getting her involved where she makes it herself, and sees that the food is pulverized and unable to cause choking might help with the psychological aspect...

 

Hug to you.

Edited March 20, 2014 by qannie47

[LNN]

Maybe ask Dr M to order a SpectraCell blood test for her and test for zinc deficiency. Zinc deficiencies can be linked to eating disorders. Also ask him about maybe doing a 1-2 week trial of zinc supplements - 50mg/day in a pill (can get at any grocery store, CVS or health food store) or if she won't swallow a pill, you can get it in a liquid from Amazon http://www.amazon.com/Designs-Health-Zinc-Challenge-Beauty/dp/B000FGXMAY/ref=sr_1_2?s=hpc&ie=UTF8&qid=1395320655&sr=1-2&keywords=liquid+zinc If she's deficient, the liquid will have no taste. If she has enough zinc, she'll detect a metallic taste. The degree of taste tells you the degree of deficiency. Zinc supplementation can sometimes bring big improvements.

[BeeRae22]

I will ask about the zinc deficiency, thanks. I am willing to try just about anything at this point. I make calls every single day, and I can't seem to find a program for her. It just seems crazy to go all the way to Florida for treatment. There is a hospital here In CT with an OCD clinic, but they don't take our insurance. We simply can't afford to pay everything out of pocket, we are already paying for the doctor who is treating her out if pocket- he doesn't take ANY insurance.

 

She won't drink smoothies, or anything like that. I let her have all of the ice cream that she wants, and she does drink the Boost willingly, but with school, etc. it's hard to even get enough of that into her. I am going to get a 504 for her, so she can have Boost available several times throughout the school day. Boost is loaded with sugar though, which isn't good either. Everything she takes in is sugary-- ice cream, boost and juice. I'm sure that's not helping either.