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Hi need help again. I posted this on the pandas forum but it might be a more appropriate post on lyme forum so I am reposting here. My son is 7 has pandas sudden onset with history of strep, lyme/bartonella clincially diagnosed overwhelming symptoms, and regressive autism likely induced by the previous two diagnosis.

 

Well over a month ago my 7 year old started to restrict his own eating. Basically he went from being a big eater and snacker to rejecting food or not eating very much of his meals. He suffers chronic constipation and I give a daily magnesium/supplement/gut protocol so I thought he had GERD because he complained about hiccups, chest pain, said everything tasted yucky and seemed relieved when we would give him alka seltzer gold. Well we have been treating the GERD (ratadine) daily and now he shows signs of anxiety anytime we ask him to eat or ask what he wants to eat. He gets anxious and says no thank you and wants us to leave him alone. I can offer him his favorites and he tells me NO in a panic.

 

He has limited language(autism) so this has been very difficult to figure out but my DH and I have reached the conclusion its looking more and more like anxiety at the thought of eating. We are managing to get a few pieces of toast in him daily with much effort. He will drink electrolyte water no problem so we are not in danger with him yet, but its only a matter of time as kids lose weight and can become malnutritioned very qucikly. He is already looking skinnier to me.

 

I have several calls into the his GI Doc to get more of a thorough workup but my instinct is leading me to believe it is anxiety as the cause more and more. He was a picky eater before but a robust eater and now not wanting to eat. I don't think its autism related I think OCD from the PAnDAS or Lyme is the culprit. My 9 year old whom is typical went thru this with pandas and said his brain told him if he ate then something bad would happen. He finally got over it when we switched his abx from azithro to penn vk. I think this may be happening now to my youngest but again I am not positive.

 

Also I have to mention he does not look sick he is jumping on trampoline, playing his video games, doing great in tutoring, I think if it was GI related he would appear sick.

 

Improvement are noted in cognitive skills, energy, bowels are moving again, sleep is good 9 to 10 hours nightly, overall health is looking good I even see improvement in his sensory problems (he is not biting/chewing on his shirt as much and calms down at babies crying if I tell him to just breath and he is safe) but now OCD around food is the new issue.

 

Could the GI problems be triggering the OCD? Last night he rejected everything even toast. So I did a little behavior therapy with him around eating and he managed to eat half a slice of brown rice toast. His facial expression told me it was OCD. I told him it was safe to eat and that how I got him to eat half a slice.

 

What can I feed him? Have you seen this before? Any advice would be appreciate? Thank you.

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Perhaps it is anxiety about eating the foods offered, or anxiety about the normal mealtime ritual?

 

One idea that you could try is to take any possible pressure off the ritual -- leave food out in a non-mealtime area like a coffee table or playroom and see if he is eating it when you aren't around. Have you tried any kind of food, even junky snack foods, to discern between anxiety and pickiness?

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Sorry, do not have a lot to add except my son had really bad stomach aches at the beginning and would not eat much at all. It was really scary seeing him so thin. His Dr. had him have some liquid, protein drinks that you buy off the shelf. Cannot remember the names of them.

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My dd9's primary symptom for lyme/pandas is food restriction. I could always tell when she had strep and before our lyme treatment I was looking up whether a 6 yr old could have Failure to Thrive. She only weighed 30 lbs and I thought she was dying. She would say that nothing tasted good and nothing sounded good to eat. She would cry at the table because she couldn't eat, she just didn't seem like she could tolorate the taste and didn't know what to eat. She would get stuck on one thing and eat it every meal until she would no longer eat it. Once this happens it's rare that she will want to eat it again.

 

I fed her carnation instant breakfast exclusively for a long time and for a long time she'd eat sauted shrimp too. There was no rhyme or reason to it, she'd get a taste for something and eat only that. It was super scary when she couldn't figure out what it was that she would eat. It helped her if she came up with what to eat on her own and help me cook it too.

 

She did have fear of choking so she would chew a lot and eat very slowly. She wouldn't eat certain foods because she thought she would choke on them, especially things that required a lot of chewing like steak. She would often chew and chew and could not swallow it and eventually spit it out.

 

Also, offering any foods at breakfast helped, not just breakfast food. Even now that she has a much better appetite, she is prone to eating one thing and prefers dinner food at breakfast. When I see her getting into only eating one thing I ask her to add some variety and she will.

 

In the absence of strep and now that her lyme is basically treated, this does not happen any longer and her favorite thing to do it eat. She is almost 10 yrs old now and weighs 60 lbs. She is very little for her age but I'm so happy about those 30 lbs gained in the past 4 years.

 

HUGS!

 

Susan

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  • 2 weeks later...

I un-knowingly had lyme for @20 yrs. one of my earliest memories of feeling "wrong" were food related. my family called them my moods, i would shut down and feel physically ill, ramdomly when it was mealtime. when the feeling was over, sometimes after lying down, i was back to normal. i lived off of fluffernutter and hoodsies for a while. my dd suddenly stopped eating everythig but strawberries cheese crackers and white fish when she was 3. she was a great eater before that, she is now 6, last year we found she has lyme too. i think it is a sensory thing for sure. she gets soo upset if she doesnt know what to eat, or if we want her to try something. she cant handle it. i have sympathy for her and everyones kids with this sort of thing, since my experience was different but still similar. i do worry though, at dance classes she looks so skinny, i am afraid of what others may say something out of concern. but then i tell myself who cares. hopefully lyme treatment and lots of encouragement will help (them all) gain weight!

Edited by danddd
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