Tuesday, November 23, 2010

Whoa...don't take my gluten!!!!


We are still in the midst of experimenting with our diets around here to figure out a way to get the family healthy but happy with what's on their plate. Of course we're also trying to get Emily talking a little more, and running into walls a little less. This is no small task.

Let's start with the good news. Ryan and the kids are doing great with a dairy free life. I'm finding recipes that seem to agree with everyone at least part of the time. I'm still enjoying my Starbuck lattes and cheesy meals when out with my friends. (And my best friend Rachel gave me some goat cheese for my birthday...best present ever!) Nora can even have a little pizza as long as she takes a lactaid pill. I couldn't be happier with this outcome. We've adjusted.

However, about two weeks ago, Emily broke out with a bad case of eczema. It was all over her back, and the bumps on her rear end returned. This, coupled with a lot of loose bowels, led me to foray into the world of gluten free cooking. All I can say is what a disaster! For those of you that aren't familiar with gluten, its a very long and complex protein found in wheat and barley. It is difficult to break down, and the theory amongst many autism advocates is that kids like Emily can't fully digest the gluten. So these kids need to avoid any and all wheat products. Think about that for a second...that means no bread in most of its forms (bread, bagels, English muffins, buns) no pancakes or waffles, no doughnuts, no pasta, no meat-free substitutes, no crackers, and of course no cheese...oh my god we are going to starve.

I tried, I really did. But so far its just not working. Its been a few weeks and we haven't gone more than a day and a half fully gluten free. Taking away animal crackers is akin to taking away her oxygen supply, and I just can't handle the tears. "Momma...Momma...Momma...Animal cracker. An-i-mal CRAK-er. Momma...Momma..." You get the drift. I even started cooking meat in the attempt to make this diet work. I made the best looking schnitzel this side of the pond with gluten free flour and margarine instead of butter. Emily didn't even touch it, and I was sick to my stomach for nearly 3 days. So we can safely add pork to the no-go list. (Editor's Note: Nora doth protest. She declared schnitzel and potato pancakes the most delicious dinner ever).

Anyways, we reached the breaking point.

Yesterday for dinner Emily ate rice with ketchup.

This is ridiculous. White rice and organic ketchup is not a healthy meal.

So its back to the drawing board. Over lunch Ryan and I had a long conversation, focusing on the literature I've been reading. The theory, the one that we feel pertains to Emily, is that her body has been overloaded with a lot of toxins. Any additional toxins (like peptides created from undigested dairy and gluten) are overloading an already stressed brain and immune system. We decided we are going to go after the toxins in her body first.

Removing the toxins is going to have to be done in two main ways. First, we need to remove the crap that is already inside of her. We are going the all natural route, starting with glutathione (an amino acid) as well as medicinal clay, garlic, onion, and cilantro. I haven't quite figured out how I'm going to get all these tinctures and pills into her, but hopefully it will be a funny story you can all read in the coming weeks. Secondly, we need to avoid putting more crap into Emily (and Nora and the rest of the world!). It is my intention to switch to all organic/natural products by the end of the year. This obviously means food, but also toothpaste, soaps, and household cleaning products. We will also have to think twice about the types of household repairs we do; many items from the hardware store from paints to plywood to carpets "off-gas", so if we are working in this old house, Emily needs to be somewhere else.

I don't know if this is going to work, but it can't hurt. And certainly being more green is best for everyone, so these are changes I'd like to see become permanent fixtures around here.

As I busy myself with my plans to save Emily and then the world, you can find Emily and Nora enjoying animal crackers and cherry juice, with a side of apple sauce.

Tuesday, November 2, 2010

Nora's X-Rays

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Here is a copy of the x-ray image of her arm from the day of the fall. The doctor said that the angle it has moved is between 10 and 12 percent.

Nora's Broken Arm

 I suppose this was the universe's way of telling me letting the kids play hookey from school for the day wasn't the best idea I've ever had. But it sounded like so much fun...

And the beginning of the day was fun. I planned an afternoon with my mom, who was home recovering from a chemo treatment. (As many of you know my mom is currently fighting breast cancer. I don't really write about it here in the blog because I feel that its her story to share, not mine). Anyhow, we went to the store for some delicious chocolate almond milk, got a picinic lunch to boot, then headed over to my mom's house on one of those beautiful fall days that looks like a postcard. Blue skies, the trees in every shade of red and yellow you can imagine, and the long grasses were brown and rustlng in the wind. Who'd want to go to school?

We visited with my mom for a bit, but the kids were getting antsy and my mom was looking tired, so we headed to the park. Since it was only 2pm, the other kids weren't home from school yet and we had the place to ourselves. Emily loves the slide there. I like the swings because my feet don't drag on the ground. Nora was excited to try a new set of monkey bars. We were all having a good time. I was on the swing, watching Nora when she jumped to reach the monkey bars and missed. She grabbed at the air as she fell, and she hit the ground hard.

My mom alarm went off. She didn't get up, and the cry got stuck in her throat. It only took me 2 or 3 seconds to reach her, but oh my god it felt like eons. I reached her little crumpled body on the mulchly ground, and for a second I wasn't even looking at Nora. I was looking at me, and I was 11 years old crumpled on the ground one block over from that very park, with a broken arm. I knew that arm was broken without even looking at her.

The walk home was just awful. No kidding. Sometimes, no matter what you do, you can't win. Since we hadn't been at the park all that long, Emily wasn't ready to go. When I said, "Nora's hurt! Time to go!" she started screaming. I had to carry her to mom's, and she kicked and screamed most of the way. Since I had one writhing toddler in my arms, there was no way I could carry Nora too. She had to walk next to me, and she was crying and said, "Mom!!! You're going too fast. Every time I step it HURTTTTSSSS....". That walk home took forever, and the park is only 4 doors down.

I laid Nora on the couch, and she didn't move. Her little wrist was so swollen. I drove like a maniac to the store to get her some pain killers, because past experience from my broken arm taught me that sports creme is not an effecive cure-all. Once I got the meds in her, I made arrangements to drop Emily at home with Ryan while I took Nora to the clinic. Another long drive...75 miles in fact between mom's and the docs. But we missed rush hour and made it safe.

Once at the clinic, Nora was a star patient. I couldn't have been prouder! She listened to all of the instructions when her x-rays were taken. She sat as calm as could be waiting for Dr. Patel, who was a very nice and very funny doctor. She was brave when they put on the temporary cast, and managed to eat every last bite of her Happy Meal. She even went to school the next day. Since then, she has been to the orthopedic doctor twice. They've moved her into a permanent cast, which is the brighest pink you can imagine. She will probably be in the cast for 3 months. So far she has adjusted to life with the cast. The only thing she misses are her long baths with Emily. Obviously the cast can't get wet, so she has to sit by herself with no bath toys. She also misses the park, and continues to ask me if we can go and play when the weather is nice. It's good to know that even after such a big fall, she's ready and willing to get right back up.

Monday, November 1, 2010

Waiting waiting waiting....(Part 2)

Another day has passed, still no news on Emily's appointment, although the nurse I spoke to said don't be surprised if our appointment is scheduled for next MARCH. Umm...okay. Well, I can still do some reading; after all, being informed can't hurt. So here's the second installment of what's on my mind concerning Emily.

A lot of the info I've come across has discussed that in addition to the problem of autism or allergies or ADHD, a lot of the kids presenting with these disorders also have stomach and digestion problems. Many moms, including me, think that the link between the two is more than coincidence.

I know my kids have tummy troubles. They are plugged up like, oh I don't know, something with a cork. Anyways, since neither one of them has ever had runny poop, I didn't think they had an issue. Well wasn't I wrong. After doing some reading I decided to talk to Nora about her potty habits, since she can talk, and her diapers were always similar to Emily's. (A good mom knows everything about her babies). Nora informed me that she didn't go potty everyday, and when she did it hurt. I started timing her, from the time she first felt like she needed to go to the time the cork popped, so to speak. Sometimes it would take her 24 hours to make one BM. Oh my goodness, that is just terrible.

To save you all from unnecessary details, take my word for it that Emily has the same problem. And so now for the solution. Coincidently, step one of project "Save Emily from the Short Bus" is also helpful for Nora, who I believe is lactose intolerant, like her dad.


Read that again carefully: I removed dairy from the house. No more ice-cream, yogurt, or milk. No more mac and cheese or Goldfish. No more bread made with milk, no more fake meat products since many of them have caesin or whey, a milk derivative. No more eating like I know it.

It's been two full weeks since I've had the kids off the big D completely. They are adjusting, thankfully, better than I. The first few days were really rough. Both girls refused to drink the almond milk, and were literally hanging from my legs crying for ice-cream. Emily started to have these bizarre hyper-active fits, in which she'd kick her legs for an hour at a time. She couldn't be still to save her life. She is still having those fits, although they have lessened in frequency and duration.

As far as stomach pains go, the kids are doing great. Ryan said he hasn't felt better in years. Me? Well, I think I'm having the hardest time with this because dairy doesn't make me feel sick, it makes me feel full. And soy milk, well it doesn't sit so well with me. I've increased my Starbucks latte intake to make-up for the lack of milk at home. Its not what I planned to do at all. I wanted to stand by the kids and go dairy free with them, but I actually felt so hungry without dairy I couldn't sleep. After a week of being awoken by my growling stomach, I had to concede defeat and purchase a latte with milk. (Irony? Yes, that I'd need coffee to sleep does seem backwards).

So that is the happy medium we've achieved thus far. These changes are hard, but we are getting used to them. I imagine in another week or two going diary free will be as natural as being a vegetarian has become. Once we hit that point, we will initiate phase two, which is to remove gluten from our diet. I haven't quite figured that out yet, since the literature states you cannot be meat free and gluten free. So we've got some choices to make around here, but whatever we decide, it will be with Emily's best interest in heart.

For further reading on the links between developmental delays, autism, and diet, please check out the following sites:

Talk About Curing Autism: http://www.talkaboutcuringautism.org/index.php

Generation Rescue: http://www.generationrescue.org/home

Do Toxins Cause Autism?: http://www.nytimes.com/2010/02/25/opinion/25kristof.html?_r=1