The questions I am most interested in discussing (but not limited to) are as follows:
The tonal nature of my daughter’s speech is nasal, and we believe to be related to soft palate issues (Velopharyngeal insufficiency – VPI). Has anyone had this condition diagnosed?
If VPI has been diagnosed, is the issue caused by a structural malformation or a muscle control issue?
Does anyone have experience with successful/unsuccessful corrective surgery or therapies for improving speech and language issues?
Is anyone else experiencing a decline in speech and language capabilities (we are)?
Should VPI be included as part of the ongoing natural history study?
As the mother of a Tango2 child that also had 22q, I can speak on this topic but understand that most of the difficulties Robert had were symptoms of 22q and I’m not sure if they also a part of Tango2. Robert was non verbal (even at the age of 5). He was in speech therapy continuously and had surgery when he was one to have his submucus palate repaired. Lots of 22q kids also have nasally speech and many have successful VPI surgery. In 22q kids, the issues seem to be structural and I’m not sure if that’s the case in Tango2. I definitely think this is an area that needs to be explored for the tango2 community.
Ryan has had speech therapy since he was 2 years old and he is now almost 23 years old. He was never a big fan of speech therapy but I know it’s been beneficial. When he talks to “Alexa” or “Siri” he isn’t always understood. That’s when I see the years of therapy kick in. I can hear him slowing his rate, and lifting his tongue to pronounce his L sound more clearly. Sometimes electronics can be the best motivator and teacher!
Bob, a few years ago we couldn’t hardly understand Katie. Her speech teacher at school suggested we take her to an ENT for evaluation. He diagnosed her with VPI. We decided to go through with the surgery to correct that. At the time we didn’t know as much as we do now about impact of anesthesia so we did have to go through the gamut of pre surgical testing. The geneticist at the time recommended against it. He said it would come back. We went for it and it is the best thing we have done for Katie. Her self confidence and social skills increased greatly and she continues to do well. Because of her age she did have to re-learn how to talk due to compensating for so long.