In this current blog by Dawn, a mother of an Aspie, she discusses Kelsea's latest bio-medical treatment.
In The Aspergers Syndrome Corner 6, Dawn describes how her high hopes for a cure became a trial and error period. She relates how after much discussion with the doctors, they did more research and found a genetic defect. Finally she encourages other parents to become pro-active to ensure that your child is getting the treatment she needs.
Click here to see a list of prior blogs.
Trial and Error is suddenly becoming our new vocabulary. I think I had the unrealistic expectation that we would see immediate results from the protocol that Kelsea's specialist had her on. Unfortunately, no miracle occurred in her behavior and trial and error was now the norm. It was heartbreaking for us when we had such high hopes.
Kelsea's Dr. had her on high doses of quite a few vitamins and minerals, but in re-testing her blood levels, nothing had changed - she was still very deficient. We weren't seeing any changes in behavior either. So more tests were run which resulted in more diagnosis of extreme malabsorption.
In addition, we discovered major hormonal
imbalances. I had known for years that
this was an issue with her, but a previous pediatrician's answer to that was to
put her on birth control pills. It did
help in the short term, but it never addressed WHY she had hormonal imbalances
in the first place. It ultimately caused
even more behavioral issues with the synthetic hormones.
Her bio-medical Dr. took her off that immediately (much to Kelsea's disappointment - for an aspie, knowing exactly what day she was going to start her period and not be "surprised" was heaven). However, it had to be done. Over the next several months we tried different supplements and would remove some and add even more; all to no avail. We were becoming so frustrated that we were ready to quit this whole expensive venture.
We shared our feelings with the Dr. and the nutritionist. They spent extra time researching Kelsea's case trying to find the cause of many of her issues. Finally, they felt that it could be rooted in a genetic defect so we had yet another blood test.
Sure enough, the Dr. was correct and the test was positive. It is called an MTHFR defect and both my husband and I are carriers. Ultimately, it causes her body to act as a sponge where toxins are concerned - makes perfect sense, and something that we had pretty much figured out on our own. It also causes malabsorption which answered the other issue she was having.
So in this particular visit I pushed once again to start chelation therapy - a detoxification of heavy metals. There were several other protocols they needed to adjust first (adding an MTHFR supplement - due to the genetic defect, changing her adrenal meds, and starting her on mythelated B12 shots). So after completing those protocol changes, THEN we finally got to start the chelation.
Through this process I have begun to realize that I need to be more pro-active in my research of the protocols they have Kelsea on. Just as when she was in elementary school and I had to supplement everything the schools were teaching, now I am going to have to do my own research on everything the Dr. is doing to see if there are avenues that would be better suited to her specifically, or ways we can enhance what she is already taking.
I know my daughter better than anyone and I also know that what works for one person doesn't necessarily work for another. I no longer want to do the whole trial and error thing, I want to find real answers! So I am back on the computer doing extensive research and finding some possible real answers and suggestions to give to the Dr. and nutritionist.
I am also scheduled to attend a couple of different conferences on autism and bio-medical treatments. I have talked my way into one conference that is for licensed practitioners only but I am a very pro-active (and pushy) parent and I feel I have studied this enough over the last year that I will have a pretty good understanding of the subject matter.
I couldn't take no for an answer. I need to know as much as I can about how the body works and what are the latest bio-medical resources and treatments for autism spectrum disorder.
If I have to become an authority on the subject to help my daughter, then that is what I will do!
Here is a listing of prior Asperger Corner Blogs by Dawn:
Aspergers Syndrome Parent is another great site about a mother of an Aspie. She explains the different types of Autism, the behaviors and how to be an advocacy for your child.
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