Warning: loooong boring medical post

I think we may have stumbled upon a solution to part of the kids' problems. I almost hate to blog about it because I'm scared I'll jinx our success, but I've been somewhat skipping around the house lately in excitement and it's hard not to blog about something that is so fantastic I'm burning extra calories thinking about it.

It involves food.

About a month ago Michael's OT, Donna, asked me how Laurel's eating was going. Earlier this year she had worked with Laurel's therapist on how to get her to eat, but we hadn't really talked about the subject since May when we stopped her formal feeding therapy. At the time, Laurel ate almost nothing. A single strawberry cut into pieces would be a meal. Additionally, most everything she put in her mouth was chewed up and spit out. Like these almonds I discovered one day on the table:


Yes, I found it JUST LIKE THAT. Laurel is very tidy in her regurgitation.

Anyway, I told Donna that we'd seen quite a bit of improvement in Laurel. She was willing to try a lot of different flavors and textures. And she was actually swallowing the food - HOORAY!! Quantity-wise, though, she was still barely eating anything. I had to fight to get 15oz of formula in her a day (basically her only fluids) and she would maybe eat 5-10 bites of food in the ENTIRE DAY. I commented that I was hoping her stomach would expand and she'd start eating more, but it wasn't happening.

"Could she have reflux?" Donna asked.

"I don't think so," I answered. "She's NEVER vomited or burped. She sleeps wonderfully, and never complains about any pain."

Donna then explained that in her multitude of patients with eating problems, she's encountered several that had asymptomatic reflux. The only sign that there was a problem with these kids was that they didn't eat large quantities of food - they'd rather have 20 small meals a day than 5-6 normal ones. She encouraged me to get Laurel on an anti-reflux medication and see if she improved.

This seemed entirely plausible, so I took her to the pediatrician to see what he thought. He agreed it could be the cause, but he pretty bluntly told me that it was MUCH more likely she wasn't feeling well because she wasn't 100% off her allergens. Laurel is allergic to dairy, soy, and gluten. Since we found out last fall that this was the case, we've cut out most of the bad food. But there was one thing we couldn't cut: her formula. Even though it is hypoallergenic and the dairy proteins are already partially broken down, at the end of the day it still has dairy. We had tried to switch her to a different, completely allergen-free formula but she wouldn't drink it. So, in an effort to keep her meager nutritional and caloric needs met, we had decided to stay on the bad formula.

But maybe, just maybe, it would be better to sacrifice nutrition and calories and stop the formula. It was a risky call, because frankly Laurel is barely growing as it is, but Ken and I thought about it and decided we'd give it a try. It was a "desperate times call for desperate measures" decision.

Since we were going Hard Core with Laurel, it made sense to do the same with Michael (who is allergic to dairy, soy, gluten, eggs and peanuts). I hired a food scientist to rework Michael's juice recipe, and she provided some insight into what milk we could migrate Laurel to. Frankly speaking, hiring her WAS THE BEST MONEY WE EVER SPENT.

Michael was successfully converted to the new juice recipe within ten days or so. His old recipe was two Odwalla juices, heavy cream, fish oil and flax oil. His new juice is 3 (different) Odwalla juices, hemp milk, fish oil, flax oil, and an UBER expensive meal replacement powder. For a boy who was ultra picky and would refuse to drink his juice if the proportions were slightly off, transferring him to the new juice so quickly was a minor miracle. I AM NOT EXAGGERATING.

Almost immediately I noticed Michael was increasing his consumption. Now, I'm embarrassed to say that when I first noticed how quickly we were running out of juice I was annoyed and stressed because his juice is VERY expensive to make (over $400/mo) and it's hard enough finding room for that in our budget without him EATING MORE OF IT. I mean, who does he think he is?

But then I came to my senses and realized (DUH!!) that he is eating more! That's good! I never really worry about Michael's size because Laurel is obviously much more dangerously small, but Michael is pretty small himself. He's about 15% for height and 5% for weight. Put more dramatically, we are JUST NOW getting him to wear pants that are 2T...and he's almost 4. So yes, eating more is good!

As for Laurel, we are slowly converting her from her Alimentum formula to hemp milk. We haven't been as successful with this - mostly because the flavors are so different - but I'd say we've cut her dairy consumption by half in the past couple of weeks. And like Michael, one day I turned around and realized she's eating more...A LOT MORE. Whereas before I'd have to fight to get her to drink 15oz of formula in a day, now she will wake up from her nap and drink the same quantity IN ONE SITTING. I can fry her an egg and she will eat the whole thing. She now approaches me throughout the day to ask for food, and if I ever randomly offer her something, she always accepts it.

And I swear, I was watching her run around naked yesterday and I think her butt and thighs jiggled a little more than usual. Not a lot, but I'm pretty sure she's gained a bit of weight. Also, two people have recently commented to me that she looks really good, that her skin tone looks better and the circles under her eyes aren't as prevalent. People who didn't know we were on the new diet.

It is almost...exhilarating how much hope I'm starting to have that we are on to something.

If you are in the autism world (or heck, probably anyone with a child) you've probably heard the stories of kids being helped by dietary changes. I've always tried to keep an open mind to it all, but I guess I've struggled with believing it. I mean seriously, how bad can wheat and dairy be?? Isn't macaroni and cheese a childhood staple? And my kids' allergies are IgG, not IgA (which are the "normal" allergies where reactions show up quickly and dramatically). MOST doctors don't even believe in IgG allergies, let alone test for them. The pediatrician I had before my current one told me that Michael's allergy reactions weren't significant enough to warrant dietary changes and actually ENCOURAGED me to put him on more dairy so he could get more fats. After all, we rarely saw any sort of physical "proof" of his allergies.

Until now. It seems pretty clear that food must have made them feel yucky, and to avoid it they just ate the minimal amount needed to survive. It is hard NOT to draw that conclusion after witnessing the dramatic way their eating patterns have changed since we converted their diets. Sure, I guess it could be a coincidence - they could both be starting to eat more quantity and variety at the same time because of some mutual realization that Mom is gonna go over the deep end if they don't start gaining weight - but I doubt it.

So it looks like I might start to be one of "those" parents. You know, the ones who dive head first into the world of alternative medicine and don't look back. I'm embarrassed to admit this, but I'm already starting to hope that they will have developmental explosions now. That perhaps the stress of the allergens on their system was distracting their brains from developing and now that the allergens are gone (or in Laurel's case, almost gone) they will be free to focus on learning. I don't have to tell you how little scientific evidence there is for that statement, but at the same time it is REALLY attractive.

And then there's this: for the past ten days or so, Michael has been in the midst of a HUGE, unprecedented oral sensory-seeking phase. The boy has something (a toy, his clothes, the furniture) in his mouth all day long. People keep asking me if he's getting a new set of teeth. I hadn't really connected the dots until this morning, but what if it is a reaction to his diet change? Could the allergens have made his mouth super sensitive to the point of an all-liquid diet, and now that they are gone his mouth is "balancing out?" Hard to say.

But it certainly can't be ignored.

My little eaters...