Bottom line..EVERY DOWN SYNDROME CHILD NEEDS A BASELINE SLEEP STUDY!
One of the first things we did with Arina when we got her home, along with all her blood tests and echo's, was a sleep study. Arina has no symptoms of apnea. She doesn't snore, and she sleeps like an angel from 8pm to 7am. Without so much as a sound from her!
Still, her sleep study showed obstructive sleep apnea. And multiple times a night her sats drop into the low 80's.
She had her tonsils and adenoids out, and is supposed to be on oxygen at night. Getting her to leave it in her nose is impossible, so we make an oxygen tent out of her crib, and that works just fine!
Its just a part of our sweet children's anatomy. Along with those gorgeous almond eyes, they have large tongues, and tiny airways. This adds up to sleep apnea. I am seeing a lot of friends that have their peds, and even ENT's say that, because their child doesn't snore, they don't need a sleep study.Wrong! If your doctor says your child doesn't need a sleep study, you need to insist that they do. The best thing to do is go see a sleep specialist, usually also a pulmonologist. I guarantee that they will agree with you. There is no age that you should do a sleep study. Arina was 13 months, but we probably would have had one sooner if she was home. If you wait until they are 3 or 4, they could already be developing signs of pulmonary hypertension.
And you should also have follow up sleep studies every few years, because they can change.
Our sweet friend Max, his sleep apnea is worse than Arina's! But his doctor said he didn't need a sleep study because he didn't snore. I'm just glad that we discussed this and he had one done! I haven't met a DS friend yet, that doesn't have some form of sleep apnea!
There are even DS kids that have OSA so bad that they have to have a trach. Now Jax trach wasn't strickly because of OSA, he had a lot of other factors, but I took care of a lot of DS kids that had trachs because of apnea. My first patient after returning to work after having Jax was a 6 year old DS boy with a trach.
Please please please! If your DS child hasn't had a sleep study, get one scheduled today!
Yes - we fired Max's ENT this week :)
ReplyDeleteDo you have special blow-by funnel or something for the 'tent'? Dr. Pfeffer said something about getting a different setup if we wanted to try a tent vs cannula...
...and in case anyone local is wondering... our ENT, Dr. Bradley, isn't a pediatric ENT, which I think was a big part of the problem. He did wonders for my hubby's nose, but he's not the guy for Max. So I don't want to say he's a bad doc - but I wouldn't recommend him for our kiddos :)
ReplyDeleteThank you Lacey for posting this. I enjoy learning about children with DS and I had no clue this was an issue with them. My three boys all had OSA and had their tonsils/adenoids removed to help.
ReplyDeleteI still read when you post but I don't always comment.
Have a good day.
I couldn't agree more that all our kiddos need to have a sleep study! Sweet Pea passed hers, but who knows if that will always be the case. Retesting every few years sounds smart to me.
ReplyDeleteThank you for this info! Anya doesn't snore and the ped says her tonsils aren't very big, but we'll for sure get her in to a sleep specialist to be sure there's not a problem!
ReplyDeleteI am so glad I read this. This is my first time reading your blog. A firend told me about it. We were just at the hospital for my daughter who is 11 months. We were there for pneumonia. There were a lot of things going on and it was pure craziness, but the main thing keeping her there was her oxygen levels. They wanted her to go the whole night without needeing oxygen. Her stats would drop to 85 and they wanted her to stay around 92 and up. During the day she would stay above 90 for the most part, but at night was when we had the issues. The doctors finally released her. I think they realized that was just her typcal breathing pattern and took all factors into consideration (having DS and an ASD). Thank you so much for posting this. I am definitely going to look into this and ask my doctor about the sleep study when we go for a follow up this week. This is something I just can't let go!
ReplyDeleteThank you so much for sharing!
ReplyDeleteThis is one of those things I need to get scheduled for Claire. I slept with her the other night (we were visiting my mom and didn't have a crib) and noticed that her congestion would make really restless and apnea-ish at times. Now that her tubes are in, sleep study is my next project.
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