I took Goldie to the pediatrician this week to get another script for her bloodwork. She was more than happy to add zinc and selenium. She also wants to check her calcium since she's been constipated. She agrees that is most likely due to the lack of fluids. Goldie has been drinking more, but she's not happy with her chin to her chest everytime she takes a drink. I will be talking to the ENT about that next week. (BTW, I kept my journal, but the SLP at Children's never followed up with us.)
So while I was updating her on Goldie's health she mentioned that she had the sleep study results. I was so excited to get them before our visit to the ENT so I can have all my ducks in a row when we get there. The results are... abnormal sleep pattern due to an obstructed airway. Recommend removal of tonsils and adenoids.
The ped. reminded me that we don't have to follow the recommendations, the choice is ours if we want surgery or not. (I don't know what our other options would be. We can't not treat her sleep apnea.) What I want is for Goldie to be able to sleep at night and wake up rested. The last two nights have been awful with her waking constantly. Even with an extra nap she is still exhausted by dinner time. Sometimes crying and hitting her herself in the head. (headache?)
I have to admit my first reaction to the results, was to laugh and say "no, really?" I'm not happy that Goldie has sleep apnea, but I'm thrilled to be vindicated. This means I get to finish my letter to the dr at the DS Clinic who suggested breastfeeding was the cause and sleep training the solution.
So, if anyone has any suggestions or knows anything I should ask the ENT about, please comment!
6 comments:
Adam did have his tonsils and adenoids out when he was 5 yr old. I swear before they took them out from Oct. to May he would always have a snotty nose and after we did that it helped so much with that! I know they say the younger the easier the recovery is....... Adam had a rough 2 weeks after they took them out but was fine after that. Good luck with your decision.
Well good on you for being persistent, and shame on the dr for suggesting breastfeeding as the problem. What a ridiculous idea! I belong to a nz online community- upsideofdown.co.nz and there was a thread about this very topic not long ago. You could join and see what other parents had to say. Good luck
Aidan had adenoids only removed and his sleep improved. Plus, when he gets a cold now it's not quite as bad. Just make sure they do the neck x-ray before surgery. Aidan's doctor also refrained from hyper-extending the neck during his surgery as a precaution. Our doctor makes all of his patients with DS stay overnight in the hospital (swelling could cause complications with small airways), so you might want to find out about that, too. Good luck!!!
"This means I get to finish my letter to the dr at the DS Clinic who suggested breastfeeding was the cause and sleep training the solution."
What? Your kidding! Boy, if anything I would think a doctor who works with kids with DS would be thrilled to learn a child was getting the extended benefits of breasfeeding. Anyway, I wonder if the ENT could recommend alternative sleeping positions or something that would allow for a more open airway while sleeping. Who knows. Hate surgery, but a life with the consequences of sleeping poorly every single night isn't a fun road at all. Ah, decisions.
K
wow what a jerk to tell you that about breast feeding! Noah had his T and A out at 3. It helped for a short while with his sleeping but soon he was back to bad nights sleep. we have yet to find the answers 4 sleep study's later. after T and A he recovered well and after the first day, he acted like nothing was done to him and I worried he would eat something he should not. But, it was all fine. thanks for you nice comments about swimming.
I hope the DS CLinic learns a thing or two from your letter. The pulmogogist (no idea how to spell that) that saw Sean told us the same thing- that he needed to wean and sleep in his own bed. Then the sleep study showed that he stopped breathing 30x an hour. I think if he wasn't co-sleeping we'd never get any sleep!
I hope she gets her surgery soon and makes an easy recovery.
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