After my last post in September, we have had a few more appointments for the little guy regarding his FPIES, Digeorge/22Q and dup15Q diagnoses. First we saw OT, then SLP, then had an EEG, and then saw GI again in Oct.
OT said he is on track for a few things but definitely delayed in others, like language, physical and cognitive. Play skills socially he is a little bit behind, around an 15-18month old. Overall I would say he is about 15months old in his development, which isn’t so bad but we don’t want him getting any further behind than that. Since he also does not talk yet, he grunts and signs (ASL), SLP wants to send him for ASD evaluation but also for a possible Speech Apraxia since it is very common with kids like him. She will evaluate him herself for a Cleft Palate issue (aka Resonance problem; hypernasal etc.), and that will be in February at our next appointment as we await news from our ASD clinic request (there is a 1yr wait 😦 Boo!)
We also had an EEG done because at some point in September, while trialing Kale, he started having blinking seizures very often and then had one where his arm was twitching and lip downturned and moving. So, they wanted to rule out seizures/epilepsy since it is a major symptom of 22Q AND 15Q. No news about that yet but he was good for everything they made him do during the appointment. He hated the cables all over his head and wanted nothing to do with the doctors there but he got through it… On call ER doctor has the results so I guess it will be in the system when we go see Genetics or Neuro next.
As for GI, well we are kind of at a standstill with everything. He can still only eat Peaches and we have failed 3 more foods (kale, plums and now buttercup squash). So I’m planning on maybe doing a 1 month long gut rest and see where it takes us in December.
OMG, I can’t believe he will be 2 yrs old by then! I have to start thinking about bday party and gifts and such. He loooves Paw Patrol, trains, Teletubbies, playing with his brothers and watching Baby Signing Time. Hmm… Maybe some type of ASL game? Have any ideas??