GatsMom Posted February 7, 2010 Report Share Posted February 7, 2010 Day 16 of Augmentin 1000mg XR twice daily for ds16. Boycotting food, bad acid reflux and descreased appetite are common PANDAS symptoms for him. We're treating for yeast and reflux. To date I've been able to get enough food into him to dose him twice daily with the Augmentin, Advil and Fluconazole but getting food in him is getting harder, not easier. Otherwise, I seem to be seeing improvement in the emotional lability piece. He normally has a robust appetite and I know there is significant ocd involved (he'll voice his contamination fears over almost every single food option). Today I've only been successful at getting a couple saltines into him. Could anyone share how they handle this in their house? I know the lack of fuel going in is only going to make him feel worse. I have offered to make or buy anything he wants that sounds appetizing. Many thanks Gat's mom Link to comment Share on other sites More sharing options...
peglem Posted February 7, 2010 Report Share Posted February 7, 2010 Just a thought, though I may be way off base- how about kinda using the OCD to get him to eat- honey is antibacterial, so toast w/ honey? Link to comment Share on other sites More sharing options...
thereishope Posted February 7, 2010 Report Share Posted February 7, 2010 My son went through eating issues to. he never voiced why. Part of the reason was contamination. It wasn't the whole reason, though. Anyway, in addition to trying to overcome fear, you obviously need him to have nourishment. Once my son started eating again, at first it was only self contained foods. Single serve applesauce, individually wrapped cheese, single serve yogurts. You get the idea. He wouldn't let me cook for him either or get his cups or utensils. And everything had to be cold. That may have been sensory or it may have been he didn't want me to handle his food. Maybe both. Again, he wouldn't tell me. It's all my guessing based on observations. Now, often he wouldn't want me to know he was eating or be in the room with him so I told him to just eat when he wanted. It was also kinda animalistic, at times, when he started to eat again. He'd grab food when no one was around and just start eating it in the middle of the room. Crumbs and pieces falling everywhere. But I just ignored it and cleaned up when he left. I don't want to say to feed into his OCD (no pun intended) but nourishment is so important to recovery.So maybe buy some single serve things. The good thing is eventually his eating went back to normal. I made sure I always had fun foods (he was 5) or things he'd like just in case he'd want them. Over time, he was back to eating normal agaim, I am able to make his food, and he's even trying new things. Now he's more adventurous with food thahis older brother! Link to comment Share on other sites More sharing options...
GatsMom Posted February 7, 2010 Author Report Share Posted February 7, 2010 Day 16 of Augmentin 1000mg XR twice daily for ds16. Boycotting food, bad acid reflux and descreased appetite are common PANDAS symptoms for him. We're treating for yeast and reflux. To date I've been able to get enough food into him to dose him twice daily with the Augmentin, Advil and Fluconazole but getting food in him is getting harder, not easier. Otherwise, I seem to be seeing improvement in the emotional lability piece. He normally has a robust appetite and I know there is significant ocd involved (he'll voice his contamination fears over almost every single food option). Today I've only been successful at getting a couple saltines into him. Could anyone share how they handle this in their house? I know the lack of fuel going in is only going to make him feel worse. I have offered to make or buy anything he wants that sounds appetizing. Many thanks Gat's mom I was just reading about Manuka honey and hoping I could find some locally. That's a great idea! He does lean toward the single serve, individually wrapped things (a piece of wrapped cheese did go in him today). I'll get the applesauce tomorrow. We normally go through a lot of yogurt but I think he's getting burnt out on it because for weeks its been a staple. If somethings been in the frig for more than a couple days now, he won't eat it regardless of the expiration date. When he does eat, he doesn't like me to make a big deal out of it. I think he's working so hard just to get it down so I always downplay it and, like you said Vickie, clean up any evidence later. I have been trying to remind myself all day that we've been here before and his beautiful appetite returned once before, surely it will again. Please keep those ideas coming! Thanks so much! Link to comment Share on other sites More sharing options...
dcmom Posted February 7, 2010 Report Share Posted February 7, 2010 Gat's mom- We have gone through the food refusal with both girls. I don't believe either has contamination issues (although one MUST check expiration dates). Their issues are fear of throwing up, just plain old not wanting to eat, nothing sounding good etc. I have found just making stuff and putting it out for them to graze on the kitchen table is best. Even today, my younger one, who is for the most part in remission right now- had a tough lunch time. I asked her what she wanted- NOTHING sounded good to her. In the end, I made up a whole tray for her with about 6 things I thought might go over, and she ate well. Sometimes making the decision, when nothing is ideal, is part of the problem. If he is interested in smoothies or milkshakes- they can be made high calorie and nutritious, and may be more appealing since they are in a sweet/drink form. Good luck- eating and sleeping are the WORST, because you know they can't heal when not getting enough of both. Link to comment Share on other sites More sharing options...
GatsMom Posted February 8, 2010 Author Report Share Posted February 8, 2010 Day 16 of Augmentin 1000mg XR twice daily for ds16. Boycotting food, bad acid reflux and descreased appetite are common PANDAS symptoms for him. We're treating for yeast and reflux. To date I've been able to get enough food into him to dose him twice daily with the Augmentin, Advil and Fluconazole but getting food in him is getting harder, not easier. Otherwise, I seem to be seeing improvement in the emotional lability piece. He normally has a robust appetite and I know there is significant ocd involved (he'll voice his contamination fears over almost every single food option). Today I've only been successful at getting a couple saltines into him. Could anyone share how they handle this in their house? I know the lack of fuel going in is only going to make him feel worse. I have offered to make or buy anything he wants that sounds appetizing. Many thanks Gat's mom In the other current thread about cessation of symptoms during illness, someone mentioned the possibility of remission in symptoms having to do with the ketogenic state that most kids go into when they are sick and not eating. I looked further into that and know that ketogenic diets are often prescribed for kids with epilepsy. Seems burning stores of fat for fuel rather than carbs & protein somehow regulates the electric activity in their brains. If possible, they start those kids with a 24 hour fast to get the body used to burning those fat stores. I could be way off base (am waiting to hear from my epilepsy expert on this) but I know my son's food refusal isn't 100% ocd. There is an element that is contamination fear and of course the biggy, fear of throwing up BUT he maintains that he has no appetite particularly in the first few hours after he's awake after his 12 hour nightly sleep. For several days now he goes about 14-16 hours without eating (10-12) of that he's alseep. Everyday by about dinner time, he starts to come around and almost always eats a decent dinner. I'm a firm believer (through my work) that the body is constantly seeking homeostasis and possesses innate abilities to right itself. I do recognize that sometimes things get bigger than the body can regulate on its own...like strep in our kids. I understand (and fully appreciate) the need and benefit of all outside therapies but is it possible these fasts (that seem painless for him) are part of his healing? I will continue to offer food. I, too, sometimes have success with putting out a platter of options for grazing. (did this for superbowl tonight and he did great) Single serving sizes and smoothies/shakes, too. I really appreciate the great ideas from everyone and, as always, it's so good to know we're not alone in this one. Much like the 12 hours per night of sleep he's claiming, I'm wondering if a few hours of ketogenic therapy per day is part of the way his body's trying to heal. Does this make even the slightest bit of sense to anyone else or do I just need a big glass of wine? Thanks much! Link to comment Share on other sites More sharing options...
Suzan Posted February 8, 2010 Report Share Posted February 8, 2010 My dd7 has food OCD issues that are worse during an episode. I buy generic protein drinks that are like Boost. If I can't get her to eat regular food I know I can get her to drink that and I feel better knowing she's getting protein and other stuff from it. It can get expensive and if she's in a good place I only let her drink one a day and push the food the other meals. Mornings are usually the worst so she often has one for breakfast. She doesn't like any smoothie I make. I don't know why. I hope the antibiotics start doing the trick and help with the food. For my dd, she normally gets her appetite back after several days. Susan Link to comment Share on other sites More sharing options...
momto2pandas Posted February 8, 2010 Report Share Posted February 8, 2010 Have he tried some exercise? I remember very well that feeling of not being able to eat, and the only thing that helped was getting up and moving, particularly after eating. It was like the food sat very uncomfortably unless I got my body moving. I never had contamination fears, though, so it sounds like he may be dealing with something other than just the physical unpleasantness of eating during PANDAS, here. Link to comment Share on other sites More sharing options...
chap Posted February 8, 2010 Report Share Posted February 8, 2010 Wondering has anyone tried the Ketogenic diet for tic reduction? Link to comment Share on other sites More sharing options...
Suzan Posted February 8, 2010 Report Share Posted February 8, 2010 Have he tried some exercise? I remember very well that feeling of not being able to eat, and the only thing that helped was getting up and moving, particularly after eating. It was like the food sat very uncomfortably unless I got my body moving. I never had contamination fears, though, so it sounds like he may be dealing with something other than just the physical unpleasantness of eating during PANDAS, here. Oh, regarding the exercise, not related to food, but I just got my dd8 up and moving.... she's doing 15-30 min a day on the treatmill and it seems to really be improving her mood! She tends to be my over-eater. I'm hoping it helps balance her out. Susan Link to comment Share on other sites More sharing options...
thereishope Posted February 8, 2010 Report Share Posted February 8, 2010 I know what you mean about not trying to make a big deal out of it.My son was 5 and I was finding myself every 5 minutes saying "Do you an apple?" " Can you eat something, please'. Then I realized I was probably making the problem worse. I put time limits on myself and only allowed myself once every 2 hours if he wanted something. Asking him still made me feel better but I tried not to let the food issue encompass everything for him. Link to comment Share on other sites More sharing options...
smartyjones Posted February 8, 2010 Report Share Posted February 8, 2010 gat's mom - have you investigated any food allergy/sensitivities? i agree with what has been posted here, esp. making the decision and just putting out food. also, my son and someone who i believe has undiagnosed pandas, are not necessarily regular eaters. my older son generally eats 3 meals a day and a snack, my younger maybe would eat one good meal, and a bite here and there. last year,in the thick of everything, he was falling off the growth chart - age 4 and jsut about 30 lbs. before we knew about pandas, we went to a naturopath who blood tested him for sensitivities. he was off the chart for so many foods. i was nervous to take him off those b/c what would he eat? and he was already looking very scrawny. however, i watched carefully and the first week he ate more and gained weight. i can't remember the numbers but he gained something like 4 lbs in 6 weeks or 6 lbs in 4 weeks -- either one a considerable percentage when you're 30 lbs! after the first week, he said 'mama, i don't want to eat anything i'm allergic to.' i noticed he hadn't been drinking milk for some time before - i'd been putting it in the fridge and then dumping it. i don't think this is the answer for everything. someone once posted an English article about the enzymes that bind with gluten and dairy also bind with strep in the gut. i believe something like that goes on. anyway, is he a big dairy guy? i'd try to take that out and see what happens. just a thought. Link to comment Share on other sites More sharing options...
thereishope Posted February 8, 2010 Report Share Posted February 8, 2010 My son boycotted milk while he was sick. Even now, he rarely drinks it. I only give it if he asks for it. I have a feeling his body is tellling him to stay away from it and I respect that. He never did stop with the cheese, milk, etc . Just glasses of milk. Link to comment Share on other sites More sharing options...
GatsMom Posted February 8, 2010 Author Report Share Posted February 8, 2010 Day 16 of Augmentin 1000mg XR twice daily for ds16. Boycotting food, bad acid reflux and descreased appetite are common PANDAS symptoms for him. We're treating for yeast and reflux. To date I've been able to get enough food into him to dose him twice daily with the Augmentin, Advil and Fluconazole but getting food in him is getting harder, not easier. Otherwise, I seem to be seeing improvement in the emotional lability piece. He normally has a robust appetite and I know there is significant ocd involved (he'll voice his contamination fears over almost every single food option). Today I've only been successful at getting a couple saltines into him. Could anyone share how they handle this in their house? I know the lack of fuel going in is only going to make him feel worse. I have offered to make or buy anything he wants that sounds appetizing. Many thanks Gat's mom He had some sensitivity testing via applied kinesiology during his last exacerbation with no major sensitivities. The herbalist that tested him still follows his case and she's convinced the the porousity of his BBB is out of what and a gluten free diet is needed. We were doing well in that regard but have fallen off in the last week when it became more of an "eat anything, just eat something" scenario. He elects to stay away from milk when in an exacerbation as it plays to all of his contamination fears and I've long considered that it must be something that his body does not need or isn't using properly. Vickie: I know exactly what you mean about offering food. I try my best to limit myself in my offering and not chase him down with it because it only makes things worse for him. Last night, we had a meltdown of epic proportion from midnight til nearly 2a. This came as a complete surprise because superbowl sunday is just a great day for him. His dad came over and they had a great time watching the game. I listened from other parts of the house and he sounded just like my son again. In an effort to get him to eat and enjoy it I made one of his favs, cream of potato soup (a lot of milk, a lot of cheese). He had seconds. Then 5 hours later it all fell apart. The thought trigger was all of those *&^% ads during superbowl for aspirin therapy for heart attacks. (and the patients in the ads who were going through their lives normally when boom, they nearly died from an MI). I knew at the time that those ads were coming too fast for him to process! I understand the thought trigger, but what made him trip to that level and did last night's dinner choice have a role in it. I'm looking into the similarities between gf/cs and the ketogenic diets to try and find some middle ground. In my own work, I recognize the value in certain diets when the body is in crisis as a means of leveling the playing field for optimal recovery. I would have no trouble believing that the thyroid is somehow involved (my mom has had a pesky thyroid for years). He had no exercise at all yesterday and I'm sure that didn't help. His dad is bringing a weight bench over for him to use, hopefully that will spur more physical activity which is usually not a problem for him. I appreciate all the help. I'm worn out. Gat's mom Link to comment Share on other sites More sharing options...
Mustang Carole Posted February 8, 2010 Report Share Posted February 8, 2010 HI Gayle, Can you try giving him digestive enzymes to help digest the foods and vits that might be irritating his GI system. The gluten free diet is very helpful but start it slowly not all at once or they go into a withdrawl and craving mode...the yeast are screaming for food. Because he has no appetite now, maybe he was exposed to more infection, thus the increase in pandas symptoms. Hopefully, he will get stronger and turn around soon. I like the low thyroid possiblity, can you get a thyroid labs checked out, easy fix with meds. Just my 2 cents... Carole Link to comment Share on other sites More sharing options...
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