Monday, December 10, 2012

Autism, Bipolar Disorder and Neurofibromatosis... Is There a Connection?

Tomorrow I meet with the principal and school psychologist for my youngest son to begin the process of helping him while we wait for his Aspergers assessment with our HMO. In preparation of the meeting, I got a call last week from the school psychologist who’s been evaluating my youngest son in class. She did take notice of his unusual way of speaking, she said, “He tends to blurt out information to no one in particular and doesn’t give eye contact to the classmates around him.” As she asked more questions about him I explained that he has an older brother with a mood disorder. She paused for a moment and said, “You know... I’m not an autism specialist, but I can share from my own experience that it isn’t uncommon when I see a child on the autism spectrum to see another family member not so far down the family tree with a mood disorder, such as bipolar disorder. It’s like it’s the same gene, just a different mutation of it appearing in another family member.”

I found this to be intriguing. I happen to know another family who has a son with Autism and a close relative with bipolar disorder. I have also heard from a follower with a similar situation. It makes me wonder how connected these disorders are.

Another piece of interesting information I came across is that children with Aspergers tend to have more unusual medical conditions than the average child. According to The Asperger’s Answer Book by Susan Ashley, Ph.D., 12-37% of children with Aspergers may have one of the following:

• Chromosomal Abnormalities
• Thyroid Disorder
• Neurological Disorders
• Tuberous Sclerosis (Tumerlike growths on the brain)
• Neurofibromatosis (Soft tumors all over the body)

The last one on the list made my eyes pop out! Neurofibromatosis... That’s the exact same condition my son was screened for last month! The screening was done because he showed one of the markers with cafe-au-lait spots found on his body at an annual physical. The second round of screening showed that his eyes were free of tumors and we were told that they would keep an eye on him in the coming years to see if it would develop. At the time, I felt we were done with that forever, but now seeing it on this list made me feel a little uneasy.

With all that said, we’re taking it one day at a time. My son will begin his assessments for Aspergers Disorder right after Christmas. We were fortunate to get in with a highly regarded team, as I was told, “they are the best in the area!” I don’t know what to expect with Aspergers Disorder being dropped from the DSM guide, will my little one walk away with a diagnosis of autism, or will he fall outside the spectrum? It will be interesting to see how this all plays out.



10 comments:

  1. Wow! Very interesting! At my son's last pediatric endocrinologist appt, she took notice of my son's very large cafe au lait birth mark on his neck/chest/back/stomach and wondered if he'd ever been evaluated for neurofibromatosis. Crazy that you just mentioned a correlation. I need to hop on it and call his pediatrician right away!

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  2. I bet there is a correlation with ADHD in families with bipolar and autism as well. I wonder if there is any research going on about these connections or if they are all anecdotal right now?

    I hadn't thought about the impact of the DSM V on you guys--wow. It will be interesting to see what sort of diagnosis he gets.

    Sounds like you have a very observant school psychologist.

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    1. Let me know if you come across any research!

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    2. Very interesting that you bring this up as out of my four boys my eldest has a diagnosis of Bipolar type II and Aspergers, the second has a diagnosis of high functioning autism along with food allergies, Gerd and chronic asthma and my third born has severe ADHD.

      I, personally, would love to be part of a genetic study.

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    3. Betsy– You definitely represent this research! It will be interesting to see what they discover over the coming years.

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  3. One year ago, my 3 year old son with NF had few words, today he's in the 75th percentile for vocabulary, and a great sense of humour; speech therapy works. He still struggles with language, dropping syllables. I also put credence in being gluten free; see http://www.cbc.ca/natureofthings/episode/autism-enigma.html. We thought he was autistic, given the leaky gut and was tested (ADOS), but he has NF, that’s clear. It may not be for everyone, but our path has made a difference. He’s now being monitored for his NF and for possible autism correlation study. Our speech therapist wished she had videotaped her first session and the sixth week session, as it was night and day; his daycare teachers further validated a change and said he’s not the same boy just after 4 weeks of speech therapy and gluten free diet. Our approach to a change in his diet may not be clinical, but we think something clicked, but it took the better part of a year to see measureable change. This is certainly not advice, it’s tough being gluten free, more expensive and less tasty.

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    1. So he had stomach issues prior to switching to Gluten free?

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  4. Hi, yes, he had what is referred to as a “leaky gut”; loose stools, no "normal" bowl movements. It was a pure coincidence that we heard reference to the nature of things show and that's when we knew we had done something right – if medical research was looking at gluten and autism, and we saw a change in our son, there must be something to it. We didn't have the NF diagnosis until 2012, we started gluten free (and speech therapy) in the fall 2011, and within a short period, solid movements started to return, and new words started to be spoken.I believe many NF patients could also have celiac disease. It may not work for everyone, but I know what's working for my son, and that gives me hope for his ability to learn.

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  5. Sorry, I failed to mention that we took him off dairy milk; we give him Rice Milk, non dairy. Milk contains "casein", I can't recall the issue fully, but it is also key to his diet.

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