That's a lot to process...so many hugs. If you have any questions about stuff related to speech/language development OR feeding (liquids or purees/solids) please feel free to PM me.
The more I think about it, the more upset I am over the misdiagnosis. I'm grateful ds didn't have to undergo anything painful after the misdiagnosis and we didn't unnecessarily medicate him or anything like that. The glossoptosis caused h and me a lot of added anxiety. I have been so worried about his tongue falling back and covering his airway at night while he is sleeping. I kept him in our room next to my side of the bed and woke up constantly to watch him breathe. The doctor warned us that any kind of respiratory illness could be extra dangerous and even having post nasal mucous could effect his airway.
We had a swallow study scheduled for July that it turns out he doesn't need. He almost had to do that unnecessarily. I have been worried sick about starting him on solids.
The icing on the cake is the almost $1k bill from the ENT we got in the mail last week. H wants to call and refuse to pay it now that we know that they didn't do the proper tests and gave us a misdiagnosis.
Big hugs to you GotWine. I've been thinking about you and wondering how you all are. You're a great mom and your son is lucky to have you.
Eta - just saw your last update re: the bill. I know this was discussed recently here and the consensus was that a bill for a misdiagnosis needs to be paid. However, check what they billed for and make sure it doesn't include the exam he didn't do. I'm sorry you're having to deal with that stress on top of everything else.
Big hugs to you GotWine. I've been thinking about you and wondering how you all are. You're a great mom and your son is lucky to have you.
Eta - just saw your last update re: the bill. I know this was discussed recently here and the consensus was that a bill for a misdiagnosis needs to be paid. However, check what they billed for and make sure it doesn't include the exam he didn't do. I'm sorry you're having to deal with that stress on top of everything else.
I missed the post on this. You make a good point about making sure we weren't charged for the test that wasn't done. I'll go back and look at the explanation of benefits and see what was charged. The bill itself doesn't give a lot information.
I'm sorry you're dealing with this, but glad that you're getting answers and support. I hope you're able to process and get your anxiety controlled quickly.
Wow, that's a lot to deal with. You're in great hands at CHOP, though. I'm in Philly, if you need anything, feel free to PM.
All of this. CHOP is the best (my daughter had surgery there as a baby - we saw an outstanding neurosurgeon and opthomologist, and a friend is an ENT there) if you need anything, PM.
"Hello babies. Welcome to Earth. It's hot in the summer and cold in the winter. It's round and wet and crowded. On the outside, babies, you've got a hundred years here. There's only one rule that I know of, babies-"God damn it, you've got to be kind.”
I'm so sorry you got a misdiagnosis earlier and that it caused you so much worry.
That said, sleep disorders and swallow difficulties are fairly common in kids with hyoptonia in the neck/trunk and CP. DS had related sleep apnea and likely had swallow issues that resolved once his tonsils and adenoids were removed. (His were fairly large, but with the low tone, it was more difficult for him to keep his airway open so they were really obstructing his breathing.) if you have even the slightest concerns when thinking about how he nurses, takes a bottle, or sleeps (snoring, any breathing pauses, or super restless are some signs), I'd encourage follow-up, even if for the different diagnosis.
Thanks. So far he is doing quite well with sleeping, swallowing and breathing. I will definitely be keeping a close eye on him.