1. Is there a support group for this?
Yes, yes, yes!!! We have an incredible facebook support group! It is a closed group- only parents (and involved extended family members) of an SATB2 child are allowed in, because we do discuss all sorts of issues that come up with our SATB2 cuties.
We share all sorts of happy success stories, questions, experiences, AND are even planning a big get-together in the summer of 2017!!! Here is the link- SATB2 Syndrome and Glass Syndrome
2. Will my child ever talk or communicate with me?
Honestly, it could go either way. There are kids who have no speech, sign, or communication. BUT, there are also kids who can use iPads to communicate, use sign language, and some do have some functional speech!!!
In my opinion, early intervention is crucial, and sticking to speech therapy (or signing, or using a communication device) is CRITICAL! Even when you feel like there have been zero results! My SATB2 sweetie didn't say her first word- "Mama" until about 18 months of speech therapy. $10,000 is a hefty price tag to pay for 5 words. But it gets so much easier as they go along!
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| An example of an iPad communication app |
3. What is the normal life expectancy for this syndrome?
As far as we can tell, these children will have just as long a life as anyone else. There haven't been many people diagnosed that are older than 20-30, so it is very difficult to tell.
4. What medical problems are associated with this syndrome?
Seizures (see Silent Seizures- kids won't always convulse!), osteopenia (low bone density), dental problems- missing teeth, crowded teeth, poor tooth quality, etc, high or cleft palate (roof of the mouth), intellectual impairment (low IQ). I explain them in more depth HERE.
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| Most SATB2 kids have a deletion at 2q33.1 |
5. Will my child EVER be potty trained?
Hopefully so!!! I have been surprised at how many kids are successfully using the potty since I joined the facebook group! Before, I feel so much despair- I had a 2 year old son that I trained in a weekend, but months and months did nothing for Chelsea.
Fortunately, I didn't give up and she is now in big girl underwear all the time!!! I did a series on how I potty trained her- the preparation, activities for the potty, first 3 days, and the conclusion. Prepare yourself now- it will be a long haul, but SOOOOO worth it!!! I also recommend a secret chocolate stash (since I don't drink) for those hard days!
6. My kid eats ALL the time, but is super skinny! Is that normal?
Yep, very normal for SATB2!!! My little girl is teeny tiny, but eats almost non-stop. Healthy otherwise, but it wouldn't matter if I fed her cheesecake wrapped in bacon with chocolate milkshakes every day- that girl won't gain weight!!!
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| Not my picture- Chelsea's feet are skin and bone |
7. What sort of behavior issues should we expect as my SATB2 child ages?
Prepare yourself for tantrums, screaming, sensory meltdowns, hysterics, oh the joy!!! Most of the parents I hear talking about this say it really kicks in around 6-8 years old, and that they recommend a behavior consult. We have done some ABA with our little girl, and she is usually very well behaved in public, but has horrific meltdowns at home.
I recently took on a private duty nursing case for a 5 yr. old girl with Glass Syndrome. Your article has answered a lot of my questions about her condition and hopefully, what I might expect during my assignment with her. One thing I noticed on my first day was her excessive salvitation. Her mother told me that it was a relatively new symptom. Is it a common condition in these children?
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