Hi everyone my son is 4.5yrs and has Duarte. Thankfully he was released from seeing a specialist until age 18 cuz he literally eats whatever he wants and is a very healthy boy. We don't restrict his diet whatsoever. I noticed about 4 mths ago that his speech issues was no longer baby talk but now starting to sound like a real problem that needed to be looked at. It took awhile for insurance to get processed but now hes on week 3 of speech therapy. His nurse comes 3 times a week for 45 minutes. She was able to zone in on him dropping consonants and pretty much talking too fast, and having weak motor muscles. Hes a very smart boy so shes confident he just needs to teach himself how to use his mouth muscles and for us to correct how hes trying to say certain letters. She mentioned apraxia and i forgot something else? But i found this recent study and i think it hit the nail on the head. I wanted to ask you all if anybody had their child go thru the speech therapy to correct their motor skills and the children turned out fine in school with no other disabilities. I want to get ahead of this issue so we can better equip my son. Also now knowing this, should we be calling his specialist again? In San Antonio, Dr. Matalon was his specialist being flown in once a month. He was the only Galactosemic specialist SA had. Then he stopped flying in after a year and we started driving to Austin to see Dr. Gibson. Any insight would help. Ty
These are true stories and messages from moms I have received since I began this journey researching DG in 2008. Sadly I didn't start foldering the messages til 2012 but please see that many are in the same boat as you-confused and with many questions. The post is not to answer these questions specifically but to post to record the issues and questions for the public.