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LO is getting surgery(autism moms would be extra helpful here.)

Anonymous
Posted by Anonymous
  • 15 Replies

He is 6 and getting his tonsils and adenoids removed. We have been trying to figure out for over 2 years now why he's sick and coughing all the time. His PCP ruled out tonsils and gave us the run around forever before I finally got LO into an allergist. Allergist tried to insist it wasn't allergies but it was acid reflux because of the bad post nasal drip. I thought she was full of it but I decided to give the meds a try anyways.. Big shocker they didn't work. However she noticed LO had water on the middle ear and has had it for the 6 months she had been seeing him (he never complained so we had no idea) so we FINALLY get a referral to an ENT. They ask us a few questions and we find out the reason LO is tired all the time even though he sleeps 12 hours a night is because he has sleep apnea. So they tell us the tonsils and adenoids need to come out. So he is having that surgery next week. I know it's going to be harder because this kid.. he has to be in intense pain to complain about it and when he does complain about it he cries and screams for hours on end. I mean.. I am guessing he won't do that as he'll be in too much pain. And then the food diet. You'd think it would be easy as it will be all popsicles, ice cream and stuff like that but he actually doesn't like that stuff so that is going to be quite the challenge too.


I had this surgery when I was 12 so I kind of know what to expect but not from a mommy standpoint. If your kid had this done how did it go and how did they do? Was there anything extra you did to help your LO get through it?

Thank you for any advice given!! LO will be home from school soon so don't be shocked if I don't get back to you right away.

Posted by Anonymous on Sep. 26, 2017 at 3:27 PM
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Replies (1-10):
Anonymous
by Anonymous 1 - Original Poster on Sep. 26, 2017 at 3:36 PM

BUMP!

Anonymous
by Anonymous 1 - Original Poster on Sep. 26, 2017 at 3:37 PM

BUMP!

Anonymous
by Anonymous 2 on Sep. 26, 2017 at 3:38 PM
Bump.

I'm going to think about the food thing...
Anonymous
by Anonymous 1 - Original Poster on Sep. 26, 2017 at 3:40 PM

Thank you.

Quoting Anonymous 2: Bump. I'm going to think about the food thing...


proudmother5946
by Bronze Member on Sep. 26, 2017 at 3:41 PM
My daughter liked Melona bars in the blender with Ensure when she had her tonsils out.
Anonymous
by Anonymous 1 - Original Poster on Sep. 26, 2017 at 3:42 PM

I've never heard of Melona bars. I will give it a google. Thank you.

Quoting proudmother5946: My daughter liked Melona bars in the blender with Ensure when she had her tonsils out.


Anonymous
by Anonymous 3 on Sep. 26, 2017 at 4:17 PM
To be honest, I was a terrible experience for us. The anesthesia made him regress farther back than he ever had been. He was 7 at the time with a cognitive level of a 5 yo and the anesthesia pushed him back to that of a 2 yo. We lost 90% of his verbalization and most OT skills. After a few weeks when we were questioning what happened, the doctors came up with the lie that maybe he had a seizure during surgery although there is absolutely no proof of seizure activity on any of the monitor strips he was hooked up to. And we still had all the issues he had presented with. It wasn't until we met with a functional med doctor that we got any answers.

I hope it is a better experience for you than it was for us.
Anonymous
by Anonymous 1 - Original Poster on Sep. 26, 2017 at 4:20 PM
That is another one of my fears with him getting this surgery as we know just one thing can set off regression. But we know it has to be done.

Quoting Anonymous 3: To be honest, I was a terrible experience for us. The anesthesia made him regress farther back than he ever had been. He was 7 at the time with a cognitive level of a 5 yo and the anesthesia pushed him back to that of a 2 yo. We lost 90% of his verbalization and most OT skills. After a few weeks when we were questioning what happened, the doctors came up with the lie that maybe he had a seizure during surgery although there is absolutely no proof of seizure activity on any of the monitor strips he was hooked up to. And we still had all the issues he had presented with. It wasn't until we met with a functional med doctor that we got any answers.

I hope it is a better experience for you than it was for us.
BatPooCrazy
by <--That I Am on Sep. 26, 2017 at 4:23 PM

my DS is horrible with food too, but he gets a carnation everyday. he will eat vanilla ice cream every so often.  we havent been down this route yet, but the best is to fill him up on liquids and maybe baby food?

DDDaysh
by Member on Sep. 26, 2017 at 4:27 PM
My son has mild ASD. He was 5 when we had that surgery. Pediasure was the only thing I could get down him for days. Good luck!

On the bright side, his speech greatly improved after the surgery.
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