DD Still not eating.......

[BeeRae22]

Hello,

 

Some of you may remember my posts from awhile back regarding my daughter. Her onset of Pandas/Pans started in October. She is now being treated with abx by Dr. M and we have seen a huge improvement with all of her symptoms except for the eating piece. She is 8 years old. She is not restricting calories, is not afraid of weight gain, and does not have a distorted body image. She is afraid to eat-- fear of choking and swallowing. At one point, she went to a completely liquid diet, but is now at a point that with much whining, gagging, complaining, running away from the table, and lots and lots of time, I can (sometimes) get her to eat several bites of certain foods.

 

I am incredibly frustrated and feel completely alone dealing with this. I have not been able to connect with a single person, professional or otherwise, that has dealt with this particular issue. I was contacted by someone on this forum who's daughter had eating issues, but they were dealing with the "typical anorexia" symptoms which is very different from what we're dealing with.

 

We were taking her to OT for awhile, but I didn't feel like we were getting any further with that than we were here at home. I've sought out psychiatrists and therapists that have dealt with this, with no luck. I just don't know what to do anymore. She will drink Boost now, and with all of my efforts has regained about a pound and been maintaining that, (after a 3-4 pound weight loss) but she can't live on Boost forever!

 

We are waiting for a huge run of bloodwork to come back to Dr. M's office. I am anxiously waiting to hear those results. However, the results aren't going to cure her.

 

Isn't there anyone out there that has dealt with this before????? What am I supposed to be doing? I've considered dropping everything in my life, and everything in my son's and husband's lives, and my daughter's, to commit to sitting down with her for hours a day to get her to eat, because at the moment, that's what it would entail, but I'm not convinced that any amount of doing that would cure her either.......... and could potentially do more harm than good also?!

 

There has to be someone out there that could help. I wish I could find them.

 

 

[3bmom]

Have you tried an anti-viral? Valcyclovir and no dairy is what saved us. He wasn't afraid of choking, but his OCD had him lose 30lbs in 2 months at age 11.

 

I assume she won't try soup broth,fruit smoothies or chocolate almond milk. I think Boost has both Dairy and HFCS which is laden with systemic pesticides that are neurotoxins and endocrine disrupters along with Round-Up and it may be creating a vicious cycle. They do have an organic version I found when my Father-in-Law was on Boost. He started getting OCD but also had a viral infection and other issues. Looked just like Alzheimer.

 

Just my thoughts. Will keep you in my prayers since I know how scary and alone you can feel.

[BeeRae22]

well, that's just it too..... Boost is crap. Loaded with sugar, which I would love to eliminate as well.... but her primary diet is Boost and chocolate ice cream, with chocolate syrup. Those are the only food items she will take willingly.... no smoothies, other drinks (except cran grape juice and some other juices). and no other foods. at all. I get all kinds of suggestions, but there is no logic to what she's afraid of and why. The texture bothers her, but she won't accept that noodles, pasta, etc. are soft enough, and has never liked yogurt or mashed potatoes or anything like that to begin with.

[3bmom]

I have been there. You are right no rationale at all. Just before we admitted our son to the hospital he had snuck out of the house at night and went 2 miles to get a milkshake, the morphine connection with the immune system. When he was at the hospital they let him eat unlimited ice cream and no blood work. The night we came home he had his only seizure. I think they are self medicating with dairy but it exacerbates everything. He stopped dairy because our new Dr back then yelled really loud at him and scared him. I also saw improvement with antibiotic and antiviral. Should you try a different antibiotic or a combo.

 

I know some of our kids don't do well with SSRI's but your situation is serious enough to consider. Our Dr. doesn't use them till you are stable but then it helps with Seratonin for the frontal lobes and restful sleep.

 

In all our talk on excess glutamate one of the links discusses dairy along with the importance of Zinc. I am thinking of that and heeding everyone's advice on low and slow.

[PIK]

I had what you're describing. When I was 12 I think PANDAS first appeared in me as an eating disorder (calorie counting, food restriction, fear of weight gain etc) but the poop hit the fan at 28, and the eating thing was totally different. Aside from MANY other issues, I was not eating. It was certainly not an eating disorder thing at all. It had nothing to do with concern of gaining weight, as I was concerned in fact that I was too thin. It was partly a fear of choking/dislike of swallowing, i.e. I was really aware of my swallowing mechanism. It was also a delusion. I thought I was swallowing little people. I know it sounds silly, but that's what it boils down to. And it just had to do with eating in general. Like I attached very special significance to what I was eating, what I was supposed to eat, what I shouldn't eat, as in magical thinking and rituals. My mom gave me a miniature bagel and to me it represented the year 0 when Christ was born, and it was holy and I wasn't supposed to eat it. I have a feeling that some of it had to do with being put on Abilify. This was a terrible medicine and caused me severe anxiety. I don't know if the swallowing thing was also partly an actual side effect of antipsychotics. Is your daughter on an antipsychotic? From my own experience with severe OCD, I think a lot of the fears and rituals revolve around the body, such as illnesses, contamination, as well as bodily functions (what goes in and comes out of the body). I wish I could be more helpful, but I just want you to be reassured that you're not crazy, I also had this, and it certainly did have to do solely with severe OCD and PANDAS. I guess it's harder since your daughter is much younger than I was, but I wonder if you approached some of the things I'm bringing up. Can she explain what it is about eating? I don't think anything with OCD is senseless - there's some kind of crazy logic behind it. Is it the texture? Is she afraid of being poisoned. Is it the taste? Is it the actual feeling of swallowing? Is she afraid of choking? Have her explain in her own way what it is. I remember telling my mom "I'm swallowing the little people" because each bite of food going down actually felt like I was swallowing a miniature person (imagine like an Oompa-Loompa.) All my senses were extremely heightened and I was super aware of everything. It just baffles me that psychiatrists know so little about PANDAS and OCD. If I can explain it to you, not having studied medicine, any competent psychiatrist should know about it too, but they're too busy talking and not spending enough time listening to their patients. My psychiatrist still questions whether I have schizophrenia, when it completely clear that clomipramine made me better, the gold standard for OCD, when none of the antipsychotics did anything. Add to this the fact the I had suspected rheumatic fever, glomerularnephritis, and a most recent ASO titer of almost 1600 with elevated dnase-B etc. I mean come on, what more do they need as proof, aside from the fact that every one of as is describing very similar things. It's not a mystery, PANDAS is really and they just don't want to investigate it sufficiently.

[PowPow]

Thanks, pik, for this insight. It is helpful to hear how this illness "feels" from an adult.

How did the eating get better? Did it? Clomipramine?

Thank you for this glimpse into our kids' suffering. My daughter has similar heightened awareness of swallowing.

[PIK]

I don't know what made it get better. Certainly the clomipramine made just about ALL of the OCD symptoms stop almost immediately. But as far as the eating and swallowing, I think it had stopped before I was put on the clomipramine. I asked my mom who cared for me the whole time, and she said she thinks Abilify caused it, and when the Abilify was discontinued, the swallowing issues stopped as well, but I knew what was going on in my head better than her. Sometimes I think she made connections that were not really there because she just couldn't understand all the craziness going on in my mind. I'm not so sure there was such a direct link between the eating issues and the Abilify. It may have exacerbated it, as it caused me SEVERE anxiety, but I think the eating stuff just faded away. I was psychotic, with ideas of references and all types of hallucinations of all five senses, and I think the eating thing was part of the psychosis, which resolved a long time before the rest of the OCD symptoms and thoughts did. I'm sorry I can't be more definitive and helpful, because I'm sure both you and your daughter are suffering and no one is helping, as I and my whole family was suffering when I was sick. Because this is something that happened to me as an adult (PANDAS first appeared at 12 with anorexia issues, OCD at 14, rheumatic fever at 16, glomerularnephritis at 28 with full fledged psychosis at 28 as well) I wish I could do more to help getting this thing more recognized. I want to scream - THIS IS REAL!!!!! I first read about PANDAS before the whole psychotic episode, and I was like "It's talking about me. It's my story" I worked as a medical transcriptionist for a good ten years because deep down I think I wanted to figure out what went wrong with me. When I was taken to the psychiatric emergency room with psychosis, I was telling the psychiatric nurse "I have PANDAS, it's OCD. IT ALL FITS TOGETHER AND MAKES SENSE" and NO ONE listened. I now see a rheumatologist for the joint issues and elevated ASO titers, and he told me that he wasn't aware of any relationship between OCD and strep (he works at the Hospital of the University of Pennsylvania, one of the best health centers in the country) and I just wanted to hit him and call him a dufus. They truly DON'T know a lot about this. My advice is to talk to your daughter and try to figure out EXACTLY what's going through her head in regards to eating, and then as a mother I'm sure you can find away to work through it. If my mother had given up with the silly psychiatrists that saw me (who asked if I was mentally retarded mind you, though I happen to be mentally gifted) I would probably be in an institution somewhere now with a diagnosis of schizophrenia because the doctors had their head up their anuses.

[Christianmom]

Hi beerae22,

Sorry for what you are going through. When my son was at his worst three years ago, his worst OCD was related to food. In fact, it was the only clue that anything was wrong with him--he is asymptomatic for lyme and strep. His OCD thought was that something bad was in his mouth, so he couldn't put food in his mouth or swallow. He had several variations of this thought. It was the worst OCD we ever had to deal with because the lack of food weakened him making it all the harder for him to deal with his OCD.

 

I think the wake-up call for us was when our doctor (Dr. T) at the time threatened to hospitalize my son if he didn't put on weight--he gave us two weeks, that's how bad my son was. So we explained this to my son (15 at the time) and told him we would be sitting with him for every bite because we loved him and this was just not a compulsion that we could allow him to continue. So we sat with him constantly. He ate four or five small meals a day. Very, very slowly he gained weight--it took months. Now he is much better than he was then, though still really struggling with OCD. And I always know when his OCD is completely overwhelming him because he starts having eating issues again. Even on a good day, he opens his mouth overly wide when eating. I have asked him if it's because he has OCD when he eats now. He said no, but he opens his mouth overly wide to make sure he doesn't have a bad though come while eating. That's how vivid these OCD thoughts have been in the past for him.

 

Also, antibiotics helped my son. Not so much because we were on the right antibiotic at the time because I don't think we were, but because antibiotics make my son hungry. Hang in there, food OCD is a tough one!