Child with Down syndrome and severe sleep apnea

[kcstevenson]

Hello! My child is 7 years old and has severe sleep apnea. He has Down syndrome and is very small (35 lbs). He has an episode once every two minutes and a sleep index of 24. We've done 3 sleep studies and it keeps getting worse. Our sleep doctor referred us to an ENT and the only recommendation is a tongue reduction surgery or a tracheotomy. He's already had his T&A removed. He has not tolerated a CPAP device the two times we've tried it. We're out of options. Is there a CPAP that might work better for him? Does anyone know of a program that'll get him used to the CPAP? Any help would be greatly appreciated.

It feels like a battle with insurance every time we ask to use a CPAP device and it is extremely expensive to rent the device for a month. Last time we rented it, he wore it for a grand total of 45 minutes over two nights, then he refused to wear it.

Thanks in advance.

[Mabutu]

Yes many downs kids are prone to sleep apnea because of the macroglossia

Tongue reduction surgery should help a lot and the sooner the better.it carries a risk of post op haemorrhage so they probably will do a temporary trachy. How is his mood ?

[Julie]

Hi, if I was 7 I wouldn't want to wear the thing either. However, I strongly suggest you get referred to a pulmonologist or neurologist with experience in sleep disorders and/or children. You're at a place where while it's normal to 'just' prescribe Cpap for apnea, your son is not only small, but has issues which the rest of us don't - and we still have problems adjusting. It also worries me that you say things are getting worse. I caution you to be very careful about e.g. ENT's or others whose main focus is surgery (tho' I do agree that macroglossia is a 'built-in' problem) your son's already had the T&A, and while there are other types (UPPP, MMA, etc.) which certain doctors will recommend, they are known to a great extent to be unsuccessful within a few months and if anything possibly complicate things. Please let us know how things go - we'd very much like to help in any way we can. There is equipment (masks etc) made for children, but I think you need to see a new doctor asap as well to make sure Cpap (or Apap) is the only answer right now.

[SewTired]

This may be of no help to you, but an acquaintance, whose child needed a cpap and wouldn't wear it, got his own machine and mask. They kicked Mom out of the master bedroom and practiced with their machines first during the daytime for some hours and then at night. After some days, child went back to own room happily using mask. Dad continues to wear his as well, even though he doesn't need it, so that his kid will continue to wear it. He just bought a cheap, out of date machine with straight pressure for himself - mask was included. Will this work for your kid? Probably not, but if you're game, it might be worth a try before surgery.

edited to add: yes, both his children have Downs. They chose to adopt a Downs child rather than have more children.

[avi123]

Edna:
https://www.down-syndrome.org/reviews/320/

[BlackSpinner]

What works for many adults is wearing it while watching tv. This makes it a normal thing for the mind/body.

If you wear a mask at the same time then it becomes even more normal. My electricians and the attic workers all have been wearing masks with canisters. Go to a good quality hardware store and look for one. It will feel daunting to wear at first but if the electricians can wear them while drilling and hauling wires, you can manage it to watch tv together.

[Janknitz]

If your child has an occupational therapist, see if the therapist will work with him on wearing the mask--or ask for an OT referral if he doesn't have OT already. A child with Down's has many issues to contend with--often there are sensory processing issues, difficulty understanding the abstract concept of why the mask is needed, and sometimes behavioral issues as well. An OT can help address these issues--it might start with some techniques to decrease the sensory issues, things to help your child understand (e.g. putting it on a stuffed animal first to help the animal breathe, or pretending he's an elephant, a fire fighter or pilot, etc). It may be a very slow or gradual process of putting on the mask, expecting him to wear it all night every night may take many weeks or months to get there. You may have to just hold the mask up to his nose with the air on for 10 seconds and then reward his tolerance. It's going to require extreme patience on your part, so hang in there.

The surgery may definitely help. Make sure you get a second opinion and have a good understanding of the recovery process, which might be tough. We tend to be very negative on surgeries here for adults, but for kids it's an entirely different matter, and I don't think anyone here who has opted to use CPAP instead of surgery is in a good position as an adult to advise you on that. Maybe there are parents on the Downs support groups who have experience with this type of surgery.

Wishing you strength and fortitude as you work on this difficult issue.

[kcstevenson]

Thanks everyone.

The sleep apnea really affects his behavior. He is tired by 9:00 in the morning and has a difficult time in school. He is supposed to start full day school next year, but I don't see how that'll be possible with how tired he gets throughout the day. If he naps during the day it helps a little, but it's very difficult to get him to nap and it's not possible during school days. Plus, we have a three year old and a 7 month old which makes dedicating time to him even trickier.

We've seen multiple Dr.'s. Even drove 6 hours to Portland (we live in Spokane), to get a second opinion. The Dr. there has stopped doing the tongue reduction surgery because he didn't see great results with it and he felt it was to morbid to put kids through.

I think our plan of attack will be to buy a machine and a children's mask and go at our own pace. We have some really good ideas from behavioral therapists that may help us in getting him to wear it. We're going to find a behavioral therapist here in Spokane to help us through this journey.

Thanks again for the advice. Now onto figuring out the best machine and mask to buy him.

[avi123]

del

[Lucyhere]

Put him temporarily in a special institution for Down's syndrome children where specialists there would train him to use a CPAP.

What an awful thing to say to a mother of a small child! Try thinking about what you say to people!

[avi123]

Avil why don't you just get off the site altogether!

You are as ugly as your cat!

[palerider]

Avil why don't you just get off the site altogether!

You are as ugly as your cat!

which, not surprisingly, isn't ugly at all.

you, however, are a black hole of worthless babble, helping no-one.

[Julie]

Avil, if we were in the water and drowning, my handsome cat (who thinks he's Ali) would be saved long before you!

[BlackSpinner]

Avi you are nuts.

[nanwilson]

Avi you old crack pot.... you just jeopardized your relative and two helpers by posting a photo of them on an open forum of the internet. I surely hope this does not cause any problems for that lovely little girl. You are indeed a crack pot, just like the day you posted your actual name on here, if it wasn't for a few of us here, you could have been inundated with scammers .