So the past two days our little sweet girl has been a bit cranky. For all of her unique quirks with her funny personality, crankiness is generally not one of them. Frustration? Sure. Occasional anger? You bet. But she isn't usually cranky. It was a bit disheartening because she seemed to be adjusting to the new diet so well at first (even though it is still a few days old). I was doing my nightly homework last night and discovered something REALLY interesting. The biggest motivation for parents to put their kids on the Glucose-Free Milk-Free is that there is a lot of research that suggests those two things are making it hard for kids with autism to think clearly. That idea seems to be agreed on by a lot of people, it is the "why" that everyone has a different idea on. Ozzy and I thought one of the theories might not be so crazy. It is the theory that our Bubu is disposing of metabolic waste inefficiently. I picture this crazy analogy in my head:
When you are doing a really good job cleaning up the house, you are on a roll and you are putting everything in its right spot. And then you hit a snag, you either didn't realize that you had SOOO much junk or you are just tired and really have no interest in cleaning anymore, or maybe both. So you start just shoving papers wherever, the floor you meant to mop you opt to only sweep. And at the end of the day, the house is a bit cleaner but your tired choices created a bit of mess on its own.
That is the idea behind the opiate theory regarding gluten and casein (dairy) for children with Autism. Our Bubu is POSSIBLY taking in gluten and casein and instead of taking out the beneficial nutrients and having the waste pass through her, she is doing something truly unique. Her unique body is possibly "leaking" a bit of the gluten and casein out of her intestine and it travels through her blood stream and up to her brain where her brain is incredibly confused to have these unwelcomed visitors. The brain's reaction to these visitors may be inflammation or cloudiness that gets in the way of her brain communicating to different sections. Sometimes our Bubu is slow to pick up on something (especially in the afternoon), I picture the messages in her brain travelling in little slow-moving cautious cars in a dense fog. If this is the case, the diet will get rid of the fog.
The other theory is also very interesting. Some scientists believe that kids like Bubu are breaking down the gluten and casein into something completely different. They think that kids with autism are creating opiate compounds with the waste (that travel to the brain) and since they aren't getting rid of the junk like they are supposed to, the opiates stay and create a drugged-like state in some children. If this was true it would explain why kids with autism have such high pain tolerances (they are adorable pain killer-making machines) and it would explain the disorientation and confusion they often show. In short, bread and milk are making them high.
There appears to be some people that think both of these theories have some valid points. In regards to our little Bubu, I think it is a little bit of both theories. Bubu's foggiest time of day is in the afternoon after she has consumed two bottles in about five or six hours time. It would explain why when she first wakes up she is very alert and engaged (longest time without a bottle).
So how does this relate to the crankiness and regression? Well, if the theories are right, Bubu is in withdrawal from the opiates. The milk and breads helped her feel really great, incredibly confused but great. And she isn't exactly too concerned about lucidity, she is a baby. She wants to keep making those opiates (again, in theory). So the literature I read said that Bubu can experience withdrawal symptoms for about a week. Hopefully, after that it will be onwards and upwards. The book warns that Bubu has been making a lot of junk and that is going to take some time to clear out. So we are all going to have to be patient with her progress. That is going to be really tough some days. The book recommends that we do this diet for AT LEAST six months, even if we don't see much progress in those six months. Ozzy and I feel like she is already making little positive strides forward so we can't imagine taking her off the diet. I won't lie though, the diet is a bit overwhelming for us. Ozzy is awesome at reminding me that we don't have to fix everything in a day. Bubu is going to need some time. And thank God, at 18 months of age I think she has some time to figure out this stuff.
And I really feel it will be Ozzy, Bubu and me figuring out this stuff. There is a lot of information out there but not many concrete answers. It's okay, I have an amazing team to help me find the answers. Today may not be the most encouraging day but it is not even close to a really bad day.
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