Our Plea for Change

TRIGGER WARNING…this is Micah’s reality. This is obviously not the case with ALL autistic children…but this is OUR autism, our journey, and our story. If you are offended, that isn’t our intention…but these are facts:

Dear Michigan Department of Community Health:

Each year more than 200 Michigan babies – one in every 500 to 600 births- are found to have a disorder detected by newborn screening. In 2009, there were 117,309 babies born in Michigan. Out of those babies, MANY were born with a TSH lower than your borderline follow-up cutoff for CH. I am one of those babies.

Please consider lowering your TSH cutoff value of 33 for CH newborn screening or at least sending lab values to the physicians even when the results are “normal.” How else will doctors know when to re-screen if you don’t send them lab values?

If TSH values don’t drop naturally after the newborn surge, values over 10 require immediate treatment with thyroid hormone (t4) to ensure proper development, growth, health, and brain function.

Look at the autism rates since 2004 (in Michigan) since you changed the way you do newborn screening for CH. It has skyrocketed. Some of these families believe their child’s autistic behavior is a “mystery” when it is VERY possible their child suffers from undiagnosed CH.

The tandem T4 and TSH test method may have resulted in false positives…but that is certainly better than false negatives.

Please we beg you to change this, it may be too late for Micah, but it isn’t too late for the other children who will be born with similar TSH values.

Sincerely,
MicahBoyGenius An autistic child who slipped through the cracks with a TSH value of 30…oh and his little brother who also has CH but is neurotypical and lucky enough to have a TSH value of 35 to get early treatment.

The reality is…I know and I have faith that the MDCH will do the right thing here. I know they care about the children in Michigan and I know they are going to make a change and help 1000s of children.

***UPDATE: Update, I spoke with Bill Young, PhD, who is the Newborn Screening Program Director at the MDCH. He responded sincerely and promptly to my inquiry and I will keep you posted on the results. They are now reviewing the way they do CH newborn screening and may end up lowering their cutoffs.

ATTENTION: If you live in Michigan and your child has been diagnosed with autism AND hypothyroidism but you are not sure if what their newborn screening results were at birth and would like to know… ask your child’s physician to request their TSH lab values from: 

Michigan Department of Community Health 
201 Townsend St, CV-4 
Lansing, MI 48913 
TEL 517-335-8938 
FAX 517-335-9419 
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