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Video Q&A: Everything about learning disabilities Event Date: March 2, 2023 | 11:00am - 11:30am CT

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@gama2018

My 4 yr old grandson born with cleft lip and open pallet had 5 hr surgery before 1 yr old. He was babbling before then stopped completely after surgery. He has been studied at OHSU and diagnosed NOT autistic Delayed speech . Now at 4 yrs 6 mos he’s babbling and trying to say words using vowels only. Now cannot regulate emotions , doesn’t want to use potty (almost trained before speech explosion),severely behind academically. Daycare can’t handle him Please help !!! What’s going on with brain ??

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Replies to "My 4 yr old grandson born with cleft lip and open pallet had 5 hr surgery..."

Dear gama2018, I’m sorry your grandson is going through this 😢. I am mother to two grown boys and grandmother of two toddlers. My oldest son has learning disabilities and is on the autism spectrum. He also has epilepsy since birth (I had placenta abruption). Please bear with me, there is a point to all this. My husband & I were told he might not live — or if he did he might never walk or talk. After many weeks in the NNICU he came home. He was below average weight, the anti-seizure meds ruined his appetite, but otherwise he was developing normally. He too was babbling and crawling, laughing etc. Then one night I woke to find him having a grand mal seizure that did not stop until he got Valium and Phenobarbital at the hospital. After that event, all baby talk/babbling stopped. We had to wait until he was old enough to have him tested to see if he “qualified” for special education services. 30+ yrs ago was a different ball game. But the real point/question here is it possible your grandson had some type trauma around the surgery? A reaction to anesthesia perhaps? I’m not a doctor I do not want to speculate. However my heart broke when I read your words—I have said them too. What is MOST important now is going forward. If it has been over a year since your grandson was evaluated, ask for another or seek a second opinion. If you have good medical insurance see if it will cover all or part of a neurological evaluation. This will be invaluable in obtaining special services if need such as speech therapy, physical therapy etc. Follow your instincts. If you know he needs help, try to get it. If you think he can do it, let them know that! Let all those who CAN speak on your baby’s behalf, be a SuperTeam. Prayers & positive thoughts, sincerely Winterlite