Too much time has passed to adequately fill you in on the last year+ of life with Emma. There has been change, and much has stayed the same too. We still have: -Challenges, -Ups and Downs, -Good Days, -Bad Days, -Times we Laugh, -Times we Cry, -Late Nights, -Tired Eyes, -Broke Backs, -Happy Hearts, -Screaming Tirades, -Loving Hugs, and Autism.
I’ve been wondering exactly how to ease the upcoming subject into my post without alerting any autism-ma’s and pa’s about the material. Why? Because a year ago, I would have started reading one of my favorite blogs, and gotten to a certain point where the dreaded initials are typed, and started to fade out. “Crap,” I might have thought, “there goes the neighborhood!” I would have likely been annoyed at losing a blog that I thought was maybe going to remain sane, down-to-earth, and not jump on the Autism Bandwagon that I detest so much.
The subject? The material? The DREADED initials?
(Phew. Okay. I said it. Are you still here? Still reading? I hope so ~ Because it’s become a part of our lives, and I’d like to tell you my little story about it.)
Emma has ongoing digestive issues, like many children with autism. She also had many stomach aches. We went in to see a GI specialist about a year ago, and he took an x-ray. He said she was so full of poop, and impacted/etc, that it was causing her ‘leaking’ and tummy aches. He told us to do this GI cleanse, and then put her on a daily dose of Miralax.
“What the hell else?” I thought to myself during and after the appointment. I tend to be pretty honest and straightforward. I told the GI guy that I just didn’t see myself being able to implement this for at least several weeks, but that I’d give it a shot when I could. He thought that was incredibly rude of me, but I didn’t care. School, Driving, Autism, Not potty trained at the time, and all the other stuff going on led to constant overwhelm and an inability for me to take on anything new, especially a committed regime like daily Miralax. Let alone the cleanse he recommended. So, time went on… And in the end, Emma was ‘going’ every day. I felt that things were probably moving along just fine, as she didn’t seem constipated any more. We solved potty training (mostly, more about that another day). Whatever.
Stomach aches ensued, we ended up going back to him in February of this year. He did an x-ray. Showed her “backed up like a freight train,” (his words, not mine) and he then got very irritated with me for not having taken his advice. He said that he would not see Emma again unless we did the GI cleanse. >SIGH<
So. GI Cleanse. It involved putting my daughter on 48 hours of clear liquids only, and on something like 8+ cap-fulls of Miralax. Oh, By the way, did I mention that her behavior had gone completely out of control? She had become increasingly violent, angry, aggressive, you name it. She was screaming horrible things at us that we had no idea where she got in her head, like, “I’m going to BURN YOU!!!!!!” and “I want you to go get SHOT!!!!” and etc. She was attacking us physically, and …life was hard. So. I anticipated 48 hours of physical abuse. I went and spent over $200 I didn’t have at WalMart buying games, toys, new playdough, etc. I figured I’d better be ready to take on anything and keep her very, very happy.
We started the cleanse. The cleanse went on. She ate about a million popsicles, and I got her every kind of soda and juice imaginable. She only asked for food 3 times.
(Do you want me to repeat that?!?!?!)
She never broke down. In fact, she was nicer and better than she had been for a long time. There was no violence, minimal tantrums, no heavy meltdowns with head banging. I didn’t get kicked or hit. I only opened 2 of the toys I bought.
And I wondered first, Who replaced my child with this new and improved unit? Was there a recall I missed? And I wondered second, What in the world is my daughter eating that would cause such a sudden change?
That’s when I knew we’d better go ahead and give the GFCF diet a try. It wasn’t sugar or food dye affecting her, that’s pretty much all she’d been consuming for 48 hours straight. My husby and I decided we’d test one full month and check in with everyone at school and home about if it was worth continuing.
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Now. My daughter was in no way cured of autism. At all. She is still and does still have a developmental delay, a diagnosis of autism. However, she stopped being so violent and angry. The irate meltdowns disappeared, and the regular meltdowns seemed to lessen. That is what we saw at home. Less screaming, no hitting and kicking.
School? Emma’s para summed it up by saying, “If it was my daughter, and I firsthand saw these results – I wouldn’t hesitate for a second to keep her on the diet.” So, despite the cost and added workload on the mother (me), we kept her on the diet.
I’ll be honest, in most ways it sucks. It’s more expensive, it takes way more time to come up with lunches and breakfasts to send to school that she will eat, and it’s just …more work. My son is not a fan of most of my GFCF treats, but hey, I guess that means he won’t eat them all, eh?
The strangest parts: Emma has lost a little weight (a good thing. She was not obese, but a bit overweight, which is a huge concern to doctor’s these days. I was tired of fielding the questions about her restricted eating patterns and what I’ve done to try to overcome them). She is eating a wider variety of food then before, definitely. Also, she is eating way less food. (She’d have these crazy hungry days where all she would want to do all day was eat – It was all I could do to keep the eating to some sort of minimum. Other days she could eat more than my teenaged son.)
Most strangely, she has totally and completely accepted her diet. My 5 year old daughter that hates change and only wants her way? She says, “Okay mommy, I can’t have that. It has (wheat/dairy).” We call it her Allergy Diet. She’s only broken down about not having a grilled cheese sandwich ONCE in the last 9+ weeks.
(Is this post long enough yet???? ha! I’m making up for lost time, folks. Hang in there.)
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Two days ago Bob and I decided that we needed to test this diet out a little bit, and see what some wheat would do. I let her have a hot dog with the bun. Then, I let her have two slices of bread, and then three pretzel crackers. She had been normal all day. About 45-60 minutes later she turned into the bride of satan. Bob kept looking for pea soup, and I literally sat in the front seat of the car plugging my ears and trying to smile to hide my ear-pain. She went ballistic; she screamed for hours, she repeatedly kicked us in the car while in her carseat, she banged her head back over and over again, and nothing was right. She sobbed and sobbed over nothing relevant. It went on and on… 4 hours later? A little bit better, but not much. The next day? A little iffy sometimes, but better than the previous evening. Today? Fine. Although she has asked for more bread about 10 times, which is more than the last 9 weeks. Hmpf.
No more wheat. Please, dear people, no more wheat.
Why did we do this? Because I feel it’s important to not blindly trust something, especially if it’s not easier and cheaper. I want proof. I also wanted to try to see if it’s both wheat and dairy, or just one that is more of a problem than the other. Obviously we figured a little something out this weekend. I am making her lunches and breakfasts with a renewed vigor. Also? I have a secret weapon I can use to get out of family functions… (Ha ha ha ha! Please know I’m joking!!!)
Stay tuned though, because next weekend we’re going to give dairy a try.
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PS: I did one of my big research papers in my abnormal child psychology class on the subject of the efficacy of the GFCF Diet in treating children with Autism. The reports are that it is inconclusive; there is no proof of it curing or changing a child’s autism in any way. So. I used that to back up my stance that I was not going to put Emma on the diet. The results are still inconclusive, and so I don’t mean to tell anyone what to do. I can however say that our experience has been somewhat drastic and specific. The end. For now. xoxoxo
***Update: The GFCF diet turned into just gluten free, until the beginning of 2017, when it appears to have lost its effectiveness.