need help with restricted eating, Dr. M and other things...

[BeeRae22]

Hello again! I've posted several times- DD with emergent condition. My daughter has exhibited symptoms of PANS since the beginning of October. The major symptom is restricted eating.

 

It's been 2 weeks since we've seen Dr. M and she's been on antibiotics. Her psych symptoms seem to have dissipated, (they had eased off in the week before we saw Dr. M anyway) and her general mood and disposition overall is better.

 

However, the eating piece has seen very little improvement. I will admit that since starting the antibiotics, she has been a LITTLE more accepting of: 1. having food put in front of her 2. taking teeny tiny bites of certain foods, IF I feed them to her 3. drinking chocolate Boost (but I think she does this more willingly, knowing that if she drinks enough I won't push the food trying as much).

 

We do not know for certain that she has PANS. All of her bloodwork so far has come back negative for everything.... So, my question is-- at what point do you decide that this could be a psychological problem or disorder?

 

My bigger question is-- (more for people who've worked with Dr. M) At what point can the doctor determine if this is a psych issue vs. medical-- and more importantly-- will he be willing to make that determination??

 

I don't see how this could just be psych. I haven't been able to come up with any psych disorders that mimick her symptoms either.... maybe I'm just reaching for a faster answer, but my dd is NOT eating enough, and she is still high risk in regard to her weight and health. I need her to eat!

 

Has anyone here dealt with restricted eating issues? How did you handle it? What kind of progress should I expect or hope for?

 

I am so tired from worry I don't understand how this all started and got to this point.

[pr40]

CBT helps with certain PANDAS symptoms, when a child is capable of udergoing it. since she cannot survive without food, you got a big problem.

I hope others with similar experience will chime in. if they don't, post again.

I would say that she is eating wrong stuff now and that you actually have two, not one problem.

In auto-immune disorders diet is very important and so correcting both how much she eats and what she eats might be important.

 

but on your question if this is PANs, there is nothing in what you say that does not fit the picture. what blood work did you do that came negative?

most our kids blood work except ANA and Dnase were always normal.

[LNN]

I don't want to put words in his mouth, but my personal experience with Dr M is that his training as an osteopath with a natural/integrative bent puts him in the camp that feels psych issues are medical in their causes - whether it be due to infection, nutrition, environmental toxins, methylation imbalance....

 

If your DD was fine and then suddenly was not, there's a physical/medical cause. People don't go nuts or turn anorexic for no reason. Especially children.

 

I've not had to deal with severe eating issues. Ours were mild compared to what you're dealing with. But I'd put real emphasis on getting a balance of nutrients into her, more so than calories. It's the nutrients - the B vitamins, the zinc, magnesium, Vitamin C - that are critical to neurotransmitter production and balance as well as immune system health. There are many, many nutrients involved, but these are the biggies for the immediate term. Zinc deficiency is implicated in some anorexia and is also essential to the immune system. The Bs are essential to neurotransmitters. Most commercial multi-vitamins are poor quality (e.g. they use cheaper, less than ideal forms of certain vitamins) but it's a start. See if you can get her to drink the ensure for calories and then take a multivitamin - or buy a liquid multivitamin that you can sneak into the Ensure.

 

Try (and I know it's hard) to no obsess about the eating. It invites power struggles and feeds into OCD behaviors if you start feeding her as a bribe to get her to eat. You can never win when you try to bribe OCD. It's a wretched, slimy bastard that can't be trusted to uphold its end of any bargain. If you get 1200 calories into her and a daily dose of the above vitamins, that's all I'd strive for. But then, I'm not the expert on the food issues. EAmom, KaraM, DCMom and a few others have fought these battles more than I have. EAmom's daughter was hospitalized for restrictive eating. You might try PMing them, as they're not on forum often anymore but are willing to share their advice if you contact them.

[searching_for_help]

So, so very sorry you are going through this. We've been doing this for 10 years BECAUSE we, and her numerous eating disorder therapists and doctors just thought it was a "psych thing". YEARS of individual therapy (with different therapists), numerous psych drugs (don't even remember them all...) to no avail. I had a gut feeling that her sudden onset bladder frequency was significant, but we went to lots of docs, 2 of which were at a very respected Children's Hospital, and they didn't know what was going on. "She'll grow out of it..." The anxiety, OCD, etc. was just chalked up to the eating disorder. (I'm beginning to wonder if most anorexics actually have something like PANDAS going on...)

 

PANDAS/PANS kids tend to have lots of issues. I think strep started it in our case, but now she has mycoplasma P and gut issues that we are working on. Our daughter rarely presents with physical symptoms. Her anxiety, depression and OCD worsen when she is sick. I'm really beginning to wonder if it's originally the antibiotics we have to use that destroy the good gut bacteria that our kids need to fight off infection. But then they need antibiotics to control whatever else they get. What a vicious cycle!

 

I'd make sure you get a good probiotic in her. Deficiencies can cause mental issues, and if her gut doesn't have good bacteria in it, you'll have a problem. Also some good digestive enzymes. I'm even trying to supplement our daughter with sublingual when I can - to bypass the gut. (Her testing shows she's deficient in amino acids, certain vitamins, etc.) Problem is, she counts EVERY calorie, and worries about the number of calories in the pills... Out of curiosity, had she been sick or on antibiotics before the PANDAS symptoms started?

 

You have to force her to eat, patiently sit there no matter HOW long it takes. Tell her you know how hard it is, but food is medicine for her. The more malnourished she becomes, the harder it is for her to get better. (It's awful, and their fear and anxiety can turn them into little monsters when you push like that, but when they realize you won't back down, they are more likely to give in and eat (eventually.) But, please, do it patiently. (I wasn't always very good at that...) Also, please remember that they are literally TERRIFIED to eat, but deep down they really want you to make them eat. The eating disordered "thoughts" won't let them do it on their own. (It took my daughter YEARS to be able to tell me that, because she knew it sounded weird, but the thoughts caused such extreme anxiety.) Hug her and tell her you know how hard it is, although there is no possible way to understand their anxiety unless you've been through it. Also, be prepared to find food that you thought she ate hidden or thrown away. They are not trying to be bad, they are literally that scared. Another tip, if she's losing weight really fast, is make sure she doesn't have access to the Boost. I thought our dd was getting enough calories, but found out the reason she was losing was because she was pouring half out and diluting them with water. Also, (my daughter just piped in) that you need to check for excessive exercise. She said she was exercising a lot LONG before we were aware of it.

 

Personally, I'd find a doctor that is willing to do some testing. She has something going on that is causing this. Functional or Integrative medicine docs, or LLMD's are better than allopathic docs, generally. We have a nurse practitioner now who has been wonderful about testing, and most of dd results show immune problems, bacterial and viral issues. Gut issues as well. I recently posted a case study where a teenage boy had both psych and neuro problems due to H. Pylori and B12 deficiency. They treated the H.pylori and gave B12 shots, and the neuropsych symptoms went away - my point being you need to have a doc willing to search for what is going on and TREAT IT. Eating disorder clinics won't test for what's going on, they think it's all in their heads. We actually had one facility say they'd look into PANDAS, but when we got there (5 hour drive later), they said they didn't believe in PANDAS. I don't want anyone to ever have to go through that nightmare.

 

 

 

 

[BeeRae22]

llm, how would I go about pm'ing the people you mentioned? I would really like to chat with someone who's dealt with this themselves....

 

pr40- we did the full blood work up for Pandas- strep, lyme, etc. all results were negative. Dr. M did say that the lyme testing that's available is insufficient at best and the negative result doesn't really mean anything. I think he suspects a lyme co-infection.

 

DD wasn't on antibiotics before this. She did have a cold/sore throat when it started in October, but the strep tests that we did in early January were negative.

 

She wouldn't try to dilute the Boosts or anything like that.... we are working on getting more into her each day to meet 1200 calories per day. For the past couple of weeks she has been going to OT 1x a week and at dinner we "try" to have 10 bites (the bites are pea-sized and it's a huge effort for her to do it). I am thinking about completely taking the pressure off and not insisting on trying for the 10 bites any more to see if that goes anywhere.... It is a huge strain emotionally on both of us and it doesn't seem to be helping. She is willing to drink the Boost and isn't trying to not eat or restrict calories- in fact, she wants to be better and eat, and avoid going to the hospital and seems willing to help me out with that, as long as she doesn't have to chew and swallow food! I am always on the fence about whether or not I should make her "try". Most people I've talked to tell me to "try to get her to eat, but don't create any anxiety around eating". Well, that's a contradictory statement if I ever heard one! There's no way possible to do that!

 

I would love to connect with someone who's dealt with this aspect of PANS. I often feel as though I'm doing everything wrong.

[BeeRae22]

searching_for_help, how old was your daughter when this started for her? You said it's been 10 years? My daughter just turned 8 in November.

[sf_mom]

LLM made some good suggestion and thought I'd post some supportive information in relationship to them.

 

"Symptoms of zinc deficiency (weight loss, appetite loss, and behavior changes) resemble those of anorexia nervosa to some extent. This has led some researchers to theorize that low zinc levels may be related to the onset of the eating disorder. 1,2

Preliminary evidence including one small, double-blind trial suggests that zinc supplements might indeed be helpful in treating anorexia nervosa, possibly enhancing weight gain and helping to stabilize mood. 5,20,21 One frequently quoted study often used to discredit the use of zinc in anorexia appears to be relatively meaningless when inspected closely. 4,20,21"

The following information on Copper/Zinc relationship can be overwhelming. I have read the article several times myself and it has eventually sunk in. At your next appointment with Dr. M, have him run the Spectracell Vitamin Test (if he hasn't already) and see what her copper/zinc levels are currently. He can guide you appropriately on the ratio of Copper/Zinc. In our experience supplementing at what seemed to be high doses of zinc (30 m.g. daily) wasn't enough.

http://www.tvernonlac.com/copper-toxicity.html

Edited January 29, 2014 by sf_mom

[searching_for_help]

Well, if it's not a fear of calories, but a situation of "chewing and swallowing", I'd DEFINITELY say PANDAS. If she doesn't mind drinking, there are lots of yummy smoothie/shake recipes that are high calorie.

 

 

My daughter's overnight bladder issues began in 4th grade. She also had anxiety around a lot of things most of her life, but some strange issues (OCD) would crop up every now and then and go away. She had one of those situations when she was around 4. Then in 5th or 6th grade the eating disorder developed, but she kept much of it hidden from us as she knew it was strange, but couldn't stop herself from doing it. Since then, if she gets more anxiety or depression, it's a sure bet she's actually sick. Maybe I'm overly hopeful, but I've done a lot of research, and I do believe once we get her infections taken care of and her gut back working properly, things will return to "normal" - whatever that is! Just hate to see our children suffer so much with anxiety and such.

 

 

I'm pretty sure there are some case studies at this link with similar situations (but I'm a bit short on time right now...)

http://pandasnetwork.org/research/ocd-in-a-young-child/

 

 

BTW - my comments earlier about forcing her to eat were when I thought she was trying to restrict. As long as she can get her calories in via liquids or smoothies, I'm not sure I'd stress her too much with the chewing/swallowing. (I'm sorry I wasn't clear on that from your original post! Just make sure she gets enough in - because weight loss in itself can manifest in anxiety/stress, etc.

[Mommy2MCL]

Also, a mom suggested the book, "What to do when your head get stuck" If you can get her to verbalize her fears about eating you can help her work through them. We are on the 1st chapter and my dd is really opening up with us about her daily struggles and thoughts... In the future I would like to get her into CBT but that will come in time but this may help your daughter realize that her thoughts they may be bottled up so tight are normal and she is not the only one going through something like this.

 

What to Do When Your Brain Gets Stuck: A Kid's Guide to Overcoming OCD (What-to-Do Guides for Kids)

[BeeRae22]

the copper/zinc information is interesting.... I'm going to check into that further!

 

DD won't drink any smoothies, but she'll drink the Boost so I'm thankful for that!

 

I am also definately going to order that book-- I've heard about it from several different sources now.....

[LNN]

To PM someone, if they've replied somewhere in a recent post, you can click on their name and it will bring you to their profile page. From there, you can click on "send me a message".

 

If it's someone who hasn't been on in awhile, you can go to the search bar in the upper right corner at the top of the page and use the drop down menu to select "search members" (click on the icon of the magnifying glass to change from "search this forum" to "search members".

The type in the person's screen name and click search. This will give you results and then you can click on the person you're looking for. This will bring you to their profile page and from there, select "send me a message"

 

 

Speaking of books, you may also get some good info from this one: http://jamesgreenblattmd.com/anorexia-overview/ where Greenblatt (Tufts integrative psychiatrist) outlines the role of zinc deficiency in anorexia. Zinc is critical for both the immune system and neurotransmitters. If your DD was low in zinc and then got sick, it could have turned a mild zinc deficiency into a catastrophic one, trigger the anorexia as a result of having to divert zinc resources toward fighting an infection. Just a thought.

[BeeRae22]

Hi- I'm still trying to connect with someone who's dealt with extreme eating issues as a result of PANS. I've pm'ed a few people with no response.

 

After 2 weeks of antibiotics, my daughter has made a complete turn around with her mood and behaviors! She is the funny, goofy., smiley girl she was 4 months ago! But she is still terrified to eat. I don't know if this is a learned fear now, or if there is still more to it medically..... I am convinced the abx have made a huge difference and I am so glad that we didn't go down the psychiatric road with this...... is the eating piece of this puzzle the hardest part to resolve, and how do you resolve it??? Will more time and antibiotics help???

[pr40]

when she is capable of it, and she seems she is, therapy and various kinds of discipline (we do reward system, star system and what not), should help you. abx in and of themselves may not.

[LNN]

I contacted two of the moms I mentioned above and asked them to PM you.

 

Yes, I do think additional time on antibiotics will help. But be sure to get probiotics into her, 2-3 hrs away from abx. You don't want to destroy "good" gut bacteria - which play a role in neurotransmitter synthesis and impact nutrition/absorption. And you don't want to develop yeast issues. yeast can trigger symptoms that look like Pans. So use about 50 billion CFUs of a good probiotic (one that's refrigerated - not the stuff you see on the grocery shelves tha may have been sitting in a warehouse for 6 months. CP-1, Theralac and Kirkman's High Bifido have all worked well for my kids.

[BeeRae22]

pr40, have you dealt with extreme restrictive eating issues? I'm not sure what types of "therapy" would be useful in our situation-- we've been going to OT 1x a week and honestly, it feels like a waste of time. We drive 30 minutes there, and sit there for an hour- the OT cuts her food into tiny bites and we talk about how soft the food is and she crushes up pretzels and shows her how they dissolve in liquid, etc.-- she ends up having roughly 10 bites by the time it's over, then we drive 30 minutes home. This takes up most of the evening on a school night, and disrupts a normal dinnertime for the whole family, and then we have to rush to do homework, get ready for bed, and God forbid we have a bit of time to relax! I feel I can do the same thing we are doing at OT at home. And sometimes we do it, and it doesn't seem to alleviate her fears anyway.... I'm not sure about rewards systems.... dd wants to eat, and does seem proud when she takes a few bites-- but is that really going to get us anywhere? and what kind of "rewards" would you offer to get a child to eat??? I have to be careful about offering "rewards" also, because I also have a 6 year old son, and don't want to put any ideas in his head about not eating/rewards for eating, etc. As far as "dicipline"- dicipline doesn't seem appropriate at all. The only "dicipline" I impliment is having her drink the Boost, to make sure that we're (trying to!) get enough calories in.... it doesn't seem fair or helpful to "dicipline" her regarding eating food that she's terrified to eat.

 

If I could connect with someone who might have some suggestions on things that worked or helped with them, that would be great. I am open to anything, but it has to feel right for us too