The subtle art of healing...

[monarchcat]

This blew me away tonight so I thought I'd share. My son started azith 1 month ago and has been doing great, with a few setbacks here and there. He started a steroid burst 6 days ago.

 

Things had been going great, but I noticed the tics increasing over the past couple days and the mood getting a little darker and last night and today a DEFINITE increase in irritability and irrational arguments. I was getting disheartened.

 

My son has for a long time now, been an extremely picky eater. He's almost phobic about trying new foods and has a very limited diet. Mostly pizza and other easy carbs... bagels, pancakes, etc. He would literally get terrified and panicked at the thought of having to try something new.

 

SO... tonight, after being distressed all day that he is back-sliding after doing so well... my husband brought home chinese food for dinner for he and I. My son said, "What smells so good??" I offered him a piece of chicken with black bean sauce and he immediately ate it.. then proceeded to eat two platefuls of chicken with black bean sauce, rice and a scallion pancake. To see him do this is like having your dog walk up to you and start conversing in English. It's just... beyond consideration. Inconceivable.

 

It reminds me how complex and deep-reaching this all is. How much it affects....

[coco]

Hi!

 

Yes, I do understand what you are explaining so well! It's a beautiful thing! My daughter also experienced self-inflicted diet restrictions, and to see her eat with gusto and ask for more makes my heart flutter!! The other morning she ate and eat sandiwch with 4 poached eggs on it! And this was a kid that could survive on air and pretzels prior to ivig and abx. In just 8 weeks she has gained 6 pounds!! yahoo!

 

Don't get crazy over the setbacks (well, I guess we are all crazy anyway!!) but things will go up and down as our children heal. My daughter just had her second ivig treatment today and we are praying for continued progress.

 

coco

[thereishope]

That reminds me what my reaction was when my son ate carrots a couple weeks ago. Since his PANDAS episodes, he hasn't eaten a vegetable. He became even pickier than he originally was and I kind of gave up offering him certain things even though he is recovered now.Then one day my older son asked why he has to eat veggies but his brother doesn't. Before I knew it my PANDAS son said "I don't know if I like carrots". He picked one up, ate it and said he kind of liked it. He continued to eat a whole serving. I ran from the table to call my husband and tell him. I'm telling you, as a parent who has lived with PANDAS, you find such joy in such simple things.

 

Now if I can just get him to eat meat other than chicken nuggets....

[coco]

Yes, Vickie!! I do the same thing!!! LOL!

[monarchcat]

I really didn't know if the extreme pickiness was PANDAS-related or not, but I'm very encouraged! My husband and I just kept giving each other "holy &*^%!" looks all night!

[bronxmom2]

Of course the steroids also make them really hungry.

[Megs_Mom]

"To see him do this is like having your dog walk up to you and start conversing in English."

 

It's so funny - we were walking through the grocery store, and my daughter suddenly realized that she wanted Apple Juice again - after a full year of refusing it. I watch her all the time, like she is a movie come to life. I know everyone else thinks I am nuts - so it's nice to hear other people here talking about it. I can't stop marveling at little things. Here is an email I got from my husband the other day while I was out of town:

 

"Megan's pill fell out of her mouth while getting in the car this morning. I was going inside to get another. She picked up the pill from the driveway and swallowed it. She slept 8:45 to 7:10 without interruption."

 

 

We are so amazed by everything normal!

[faith]

Do alot of parents here regard their kids 'pickiness" with food somewhat of a problem? did any of the doctors you all saw believe that this is part of the profile of a PANDAS child? just wondering, as my son is very thin, like a stick. I'd say he's always been pretty picky with food. he is 10 now, but probably up til about 2 yrs ago, I would still be picking up his fork and trying to feed him. not because he couldn't, but he would be so uninterested in just sticking to eating, he picked like he was at a cocktail party, he'd take forever to eat. my husband would get so annoyed at me, but I just wanted to get as much food as I could into him. I mean he eats now, maybe a little better than before, but still skinny and does not gain any substantial weight at all. he has always been in the 5th percentile. ........ Is this a familiar story for most of you? just wondering.

 

thanks

Faith

[nojo]

Do alot of parents here regard their kids 'pickiness" with food somewhat of a problem? did any of the doctors you all saw believe that this is part of the profile of a PANDAS child? just wondering, as my son is very thin, like a stick. I'd say he's always been pretty picky with food. he is 10 now, but probably up til about 2 yrs ago, I would still be picking up his fork and trying to feed him. not because he couldn't, but he would be so uninterested in just sticking to eating, he picked like he was at a cocktail party, he'd take forever to eat. my husband would get so annoyed at me, but I just wanted to get as much food as I could into him. I mean he eats now, maybe a little better than before, but still skinny and does not gain any substantial weight at all. he has always been in the 5th percentile. ........ Is this a familiar story for most of you? just wondering.

 

thanks

Faith

 

Faith, this is us too. We are the bottom 5th in weight. She just doesn't eat, and when she does is very, very slow. When she is sick, she totally shuts down on food. She would rather drink than eat, so we have to limit milk at or around meals. We supplement her with Boost, and we put heavy cream in her milk to help her gain weight. She still hasn't gained even a pound over the last year. Lately she has been picking at breakfast, and I've been finding most of her lunch and snack in her bag from school. I've threatened her that if she keeps it up, I'll make her eat with a teacher or in the clinic. She ate her whole lunch the next day (or hid the remains much better). I walk a fine line when making food I know she'll eat, and indulging her quirks. Currently for breakfast she likes special K with red berries, but we have to pick out all of the red berries. You can't just by plain special K, it tastes different . When she does eat my husband and I do our happy dance.

[thereishope]

My son was a big baby, then when he entered toddlerhood, he leveled off into maybe the 50th percentile, and now he is in the 25th (?) percentile. I'm not concerned about the percentiles right now because I think some is genetic w/ us. My 8 yr old is tall and skinny and it looks like my 6 yr old will remain the same too. Can't say the same for my 3 yr old girl

 

My 8 yr old son (non PANDAS) weighs maybe 65

My 6 yr old PANDAS son weighs about 43-44 pounds

Both are in the 95 percentile for height.

 

 

My kids have alway been picky. when my 6 yr old went into PANDAS episodes his eating was greatly affected directly by PANDAS. But, I think for him, it turned into habit post PANDAS episode. I think if I work at it, I maybe able to fix some of what went wrong in terms of the decrease in food options. So, I guess I can say PANDAS affects his food intake during an episode but I don't think PANDAS is controling what food he chooses now. If that makes sense.

 

When he gets soemthing he likes, he can pack it away w/o me asking. Even lately, he's asking for seconds on things I never thought he would ask for.

[smartyjones]

We supplement her with Boost, and we put heavy cream in her milk to help her gain weight. She still hasn't gained even a pound over the last year. Lately she has been picking at breakfast, and I've been finding most of her lunch and snack in her bag from school.

 

I really think there is some connection btwn food/eating trouble and pandas - from a physical side not always related to ocd eating issues. I'm not sure where it comes from - i feel that it is strep in the gut. Is there anyone that has the opposite - a pandas child who is overweight?

 

my son was a big baby and then all over the place on the chart as a baby/toddler. the year before pandas, he'd settled into about the 15 percentile. during first pandas episode, he was looking so scrawny and almost dropping off the chart. a few people suggested i take him off gluten and dairy but that was such a daunting thought to just do with no evidence. we saw a naturopath who ran a food sensitivity panel and he was highly reactive to all dairy, eggs and most grains. we took him off all those. of course, i was concerned b/c he was almost off the chart as it was. i watched his food intake and weight very closely. he actually ended up gaining something like 4 lbs in the first 6 weeks -i think he was at something like 32 lbs so it was a huge percentage!

 

looking back, i had been putting his milk glass back in the refrigerator and then eventually dumping it often. one time he didn't really even touch his chocolate milk at a coffee shop. so i think on some level for some reason, he did not want milk, which he had previously liked. once we eliminated those, he began wanting to eat lunch and eating more.

 

now with no science but mama's intuition - i believe the food problems are the result of strep/body imbalance. there are the anti-dairy people who believe it to be very inflammatory in healthy people. i do kind of agree but think it to be really troublesome if there's something else going on.

 

has anyone with a DAN dr discussed milk and immune issues?

[thereishope]

My son no longer is a milk drinker. It started during a PANDAS episode when he'd only drink apple juice. Even after the PANDAS episodes ended, this new aversion to milk stayed. I've decided not to push it and to trust that his body is telling him something. That milk isn't right for him right now. He drinks maybe 1-2 half cups of milk a week.

 

 

 

[

 

looking back, i had been putting his milk glass back in the refrigerator and then eventually dumping it often. one time he didn't really even touch his chocolate milk at a coffee shop. so i think on some level for some reason, he did not want milk, which he had previously liked. once we eliminated those, he began wanting to eat lunch and eating more.

 

now with no science but mama's intuition - i believe the food problems are the result of strep/body imbalance. there are the anti-dairy people who believe it to be very inflammatory in healthy people. i do kind of agree but think it to be really troublesome if there's something else going on.

 

has anyone with a DAN dr discussed milk and immune issues?

[Worried_Dad]

Our son became a vegetarian (on moral grounds) about a year before the PANDAS hit. So he was a "selective eater" already. But after the PANDAS hit, he became the pickiest eater on the planet (at least, our part of it). He had borderline anorexia after his August 2008 symptom explosion and every meal was agony. We came close to hospitalizing him at one point, after he'd lost almost 20 pounds in about 2 months. And sensory defensiveness resulted in him complaining about the way things smelled and tasted (too strong).

 

He eats better now... but (OCD symptom?) his variety / flexibility has collapsed. Like Sammy Maloney in the book, he has to eat the same thing every single morning (in his case, fried rice - long-grain brown - with egg and peas mixed in). It's torture trying to get him to vary his diet or try new things.

 

Has improved a bit in the last few weeks, since we started the mega-dose augmentin. We're praying the progress continues!

[thereishope]

My son ate an applesauce cup for breakfast for months. It had to be Mott's Healthy Harvest strawberry. When they changed the packaging, he was not very happy about that. Even after I considered him recovered, that's what he continued to eat. Then maybe a month ago, he suddenly started to vary his breakfast out of no where on his own. Now it's different every day. He still does go for that applesauce now and then, but it not out of necessity.

[Suzan]

Our son became a vegetarian (on moral grounds) about a year before the PANDAS hit. So he was a "selective eater" already. But after the PANDAS hit, he became the pickiest eater on the planet (at least, our part of it). He had borderline anorexia after his August 2008 symptom explosion and every meal was agony. We came close to hospitalizing him at one point, after he'd lost almost 20 pounds in about 2 months. And sensory defensiveness resulted in him complaining about the way things smelled and tasted (too strong).

 

He eats better now... but (OCD symptom?) his variety / flexibility has collapsed. Like Sammy Maloney in the book, he has to eat the same thing every single morning (in his case, fried rice - long-grain brown - with egg and peas mixed in). It's torture trying to get him to vary his diet or try new things.

 

Has improved a bit in the last few weeks, since we started the mega-dose augmentin. We're praying the progress continues!

 

Us too, it's Trader Joes Cinnamon Spice Oatmeal for my younger dd. She gets anorexia behavior as well and now that she is 90% right now, she still is very rigid in her food choices and will no longer eat fruit except on very rare occasion and will only eat a bite of selected veggies.

 

I am so happy to read your posts of improvement with your son. I am thinking my older daughter needs this antibiotic change, at least it is worth the try.

 

Susan