And now, for something medical!

I always think that this blog just isn’t being used anymore and then every once in a great while, when I want to make a post out of the blue, I see that Jesse DOES actually post here. Which makes my posts even more out of place. So here is a random medical post/update on the kids in a sea of “nerd posts”.

I believe I’ve mentioned it before, but when Nathan was born, both Jesse and I felt VERY strongly that he was sent to us to be a help for his brother. You can imagine my confusion and anger, then, when Nathan regressed into autism, losing all words, eye contact, etc. It’s been a difficult road and I sometimes handle things better than others, but I’ve always wondered what that bit of inspiration was about since I couldn’t fathom how another special needs child (even more severely affected than Liam) could possibly help his brother.

For the past several years (even before Nathan regressed) I have been looking into “biomedical” treatments for autism. The basic premise is that there are underlying medical issues that cause or exacerbate the symptoms of autism. When these underlying medical issues are treated, symptoms can be reduced or even eliminated. This interests me, not because I think autism is some kind of plague that needs to be eradicated from the earth, but because I don’t want my children to suffer needlessly from a medical condition that goes overlooked because they have been labeled with the term “autism”.

Around the time that Nathan regressed, I read about a neurologist at Arkansas Children’s Hospital who specialized in children with autism, mitochondrial disorders, and a condition called Cerebral Folate Deficiency. I didn’t really know much about these at the time, but his wait list was over a year long and someone said that I should get my kids on the wait list even if I didn’t know that I would use the appointment. I could always cancel down the line if it wasn’t something I wanted to look into. That seemed reasonable to me and something told me there was something to this doctor’s research that could benefit my boys. It just didn’t seem right to me that a perfectly healthy child could shut down and get locked inside himself for no reason. So I put both boys on the wait list.

We waited over 20 months for our appointment, but last month (August) our appointment finally arrived. Jesse and I loaded up the kids and drove to Arkansas to see Dr. Frye. We had a battery of tests scheduled. I hoped and prayed that I was not putting our kids through unnecessary tests and that their recovery would be fast and as painless as possible. Last week we finally got the majority of our test results back. There were a lot of very interesting results and perhaps I’ll go into some of the others in detail another time, but the headliner here is that both of my boys have been diagnosed with Cerebral Folate Deficiency. Liam, in particular, was severely deficient. His doctor said that children are usually no longer able to speak or walk with levels as low as Liam’s. I am certain that Liam would have been headed for a major decline in health, regression, and possibly development of a serious seizure disorder had we not caught this now.

The good news is that treatment is relatively easy. Liam and Nathan will get a prescription covered by insurance and will have some dietary modifications (Nathan is already dairy free, but Liam will also have to go dairy free). It is possible that we will see some huge improvement in speech, attention, motor skills, socialization, and maybe even relief from some of Liam’s OCD symptoms. To be clear, I have no expectation that this treatment will “cure” them of autism. But there is actually a chance that they may gain many or all of the skills stolen by autism once their levels come up. And even if we don’t see major improvement, I am certain we are preventing a major decline for both boys later.

Looking back, I realize that Nathan HAS been a huge help to his brother. Without his regression into autism, I never would have searched for these answers and Liam may well have been headed for a very rough adolescence (and life) without treatment. We are feeling tremendously blessed to have been led to the right doctors and to have found these answers before facing severe medical declines in the children.

Here are some sciencey articles if you want to know more about CFD:

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2 Responses to And now, for something medical!

  1. Kara Walker-Lyon says:

    Hey what is it the Doctor prescribed for them? And what is the test to diagnose CFD?

    • Shauna says:

      The prescription is called Leucovorin. It’s high dose folinic acid. CFD can only be diagnosed via lumbar puncture, but I would highly recommend it. Besides the folate level, we got all kinds of good information about neurotransmitters and other stuff. Tons of info and well with it.

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