Down Syndrome and OSA, what to do?

[rosacer]

I friend of mine has a kid 8 years old who suffers from Down syndrome. The boy was diagnosed with OSA recently.

She doesn't want to try a CPAP ! She told me the hospital made a kind of helmet with something in the back of the head to force the kid to sleep with the head turned to one side or the other; it's the same principle as the tennis balls in the back of a t-shirt.

She swears the helmet had fixed the problem but I don't think the kid has had a sleep test.

Have somebody heard about this thing?

[chunkyfrog]

I noticed that the manual that came with one of my masks advises against using the mask if a patient is 'obtunded'. . .
Depending on the severity of his Down symptoms, they may be working on simpler solutions.
My hopes go out for this precious child and all who love him.

[The Guest]

This is a very difficult circumstance. If it were my child, I would call the different labs in my area and question them specifically on their experience with pediatric down syndrome patients. Perhaps the local childrens hospital neurology or pulmonology departments might have some advice about where to go. An in-lab titration is necessary to validate the effectiveness of whatever mask is selected. Also it's very important to work with providers that truly know how to help this type of patient.

[Janknitz]

What a tough situation! This mom is clearly overwhelmed, and it isn't easy for adults with full sets of skills to get used to CPAP--it will be a struggle and a half for a kid with Down's and his mom.

I think you are going to have to leave this be. You don't walk in those shoes, and you can't imagine it either. If she asks about OSA or CPAP you can emphasize that the only way to tell if a particular treatment is working is with data, either through a sleep study or with a data capable machine. But if she doesn't initiate the conversation, I'd leave it be.

Would this kid's quality of life be better with proper treatment? Undoubtedly, but it's just not your place to say.

I'm the mom of a special needs child. Her issues are mostly orthopedic and EXTREMELY mild, and I don't have that much to contend with, honestly. Yet sometimes I am totally overwhelmed. You just can't imagine the time and energy every little thing takes, and add to that the constant advocacy with the entities that are supposed to be helping adds additional emotional layers and energy drain. Sometimes I have to prioritize, and some things that professionals think my child needs just don't get done. This makes me feel like dirt but there are only so many hours in the day. And my kid needs to be a kid sometimes, not a patient all the time.

All I can say is that last thing I need is friends telling me how to do even more for my child when they have no clue what I'm already doing.

Leave this to the professionals who treat the child. If it's truly a priority, it's up to them to help the mom understand and give her the support to make it work.

[adksleepygal]

What a tough situation! This mom is clearly overwhelmed, and it isn't easy for adults with full sets of skills to get used to CPAP--it will be a struggle and a half for a kid with Down's and his mom.

I think you are going to have to leave this be. You don't walk in those shoes, and you can't imagine it either. If she asks about OSA or CPAP you can emphasize that the only way to tell if a particular treatment is working is with data, either through a sleep study or with a data capable machine. But if she doesn't initiate the conversation, I'd leave it be.

Would this kid's quality of life be better with proper treatment? Undoubtedly, but it's just not your place to say.

I'm the mom of a special needs child. Her issues are mostly orthopedic and EXTREMELY mild, and I don't have that much to contend with, honestly. Yet sometimes I am totally overwhelmed. You just can't imagine the time and energy every little thing takes, and add to that the constant advocacy with the entities that are supposed to be helping adds additional emotional layers and energy drain. Sometimes I have to prioritize, and some things that professionals think my child needs just don't get done. This makes me feel like dirt but there are only so many hours in the day. And my kid needs to be a kid sometimes, not a patient all the time.

All I can say is that last thing I need is friends telling me how to do even more for my child when they have no clue what I'm already doing.

Leave this to the professionals who treat the child. If it's truly a priority, it's up to them to help the mom understand and give her the support to make it work.

What a wise Mom you are - bless you for your courage. Having a special needs child is like nothing anyone can explain just as any other experience in life. You cannot "get it" unless you have done it.
We have good friends who also have a Down's son - he is now 42 but he has OSA. Fortunately he is very compliant and easy to deal with - he does use Bi-Pap and needs it very much. They have been able to use this with him and he has good results. But with a younger child its going to be a very different picture for sure. My advice is to also leave this to the professionals who are treating. Suggestions will only add more frustrations to an already overwhelming situation. Just be available and supportive and open IMHO

[rosacer]

My intention was not to tell her what to do with her child, I'm not the kind of person who tries to say others how to take care of their lives at least they ask for my opinion.

But I'm somebody with a brain who likes to learn and understand situations, and more when I face a weird one.

I have never heard about this kind of therapy and I have no big information about how kids with Down syndrome are treated, I would like to know that's it. The reason she doesn't want to try a machine (that's what she says) it's because she doesn't want to be dependent of electricity, that's her decision.

She wanted me to stop using my machine and start using that kind of helmet. From a point of view of simple logic I can't see how the fact of having your neck twisted could stop the OSA problem to me it would produce the contrary.

But as chunkyfrog says, me to I hope this child is having the best possible solution for his problem. And by the way his level of disability is very high.

My other hope was that somebody here at the forum could suggest something that we don't know in Canada. I believe that OSA has been treated in USA for more years than here, maybe I'm wrong.

[chunkyfrog]

I have cousins who live without electricity--a religious choice.
I could not ever eschew technology. The cost would be too much.
I thank God for not making such demands on me;
and can't help but wonder why so much is required of others.

[scrapper]

I know you mean well.........but this was my first thought, and I couldn't have said it any better:

All I can say is that last thing I need is friends telling me how to do even more for my child when they have no clue what I'm already doing.

Leave this to the professionals who treat the child. If it's truly a priority, it's up to them to help the mom understand and give her the support to make it work.

[rosacer]

Thanks The Guest that's a very good idea.

I really don't understand the reaction some of you have had about my question. If you have people telling you what to do with your life and you don't like it, I'm sorry about that.

It's not because I'm not going to tell this friend what to do that I need to stay in the ignorance. And I definitely not going to tell her ANYTHING about, be in peace please get out of the defensive.

I would feel very stupid if it happens that one day somebody ask me the same question about this problem with Down syndrome and I need to answer I don't know I didn't want to inform myself because I'm nobody to tell you what to do with your child and I don't have Down syndrome myself. This doesn't sounds bright at all. And maybe this thread could help somebody who need this information.

So I would appreciate if somebody could answer my question. Thanks.

[scrapper]

No one knows everything----------certainly you can only feel stupid if you allow yourself to feel that way.......

While OSA is obviously the priority to many of us, it may not be for the caretaker of a special needs person, given the multitude of ever changing concerns...........

Very kindly.....many of us have answered your question:

My advice is to also leave this to the professionals who are treating. Suggestions will only add more frustrations to an already overwhelming situation. Just be available and supportive and open IMHO

All I can say is that last thing I need is friends telling me how to do even more for my child when they have no clue what I'm already doing.

Leave this to the professionals who treat the child. If it's truly a priority, it's up to them to help the mom understand and give her the support to make it work.

Perhaps the local childrens hospital neurology or pulmonology departments might have some advice about where to go.... Also it's very important to work with providers that truly know how to help this type of patient.

You just can't imagine the time and energy every little thing takes, and add to that the constant advocacy with the entities that are supposed to be helping adds additional emotional layers and energy drain.

[rosacer]

Noticing that it was 234 views for a thread with 9 replies I imagine some people could be interested in what could find in my research, here is one

http://downsyndrome.nacd.org/sleep_apnea.php

http://jada.ada.org/cgi/content/full/140/3/307

[BlackSpinner]

Very kindly.....many of us have answered your question:

No you have answered questions You thought she was asking. The mother suggested that SHE use the helmet. Rose wanted to know if anyone knew something about the treatment. How about an actual answer to the question instead of a lot of defensive "Don't tell me what to do!!!!!!!" when that was not even part of the question or discussion.

[donnafowler]

Thank you for posting those links--I had never thought about those with DS being anatomically predisposed for OSA. Also, your question makes me think of other situations where CPAP may be harder to use and get good compliance, such as mental illnesses, loss of brain function due to illness or stroke, etc.--and what other options are out there for those folks and their families.

I don't have any answers for you, but you do pose an interesting question.

[Janknitz]

My apologies. I did not intend to take you to task for being concerned about your friend and her child, but only to say that sometimes we have to let it go when it comes to other people's acceptance of CPAP. And, I did not address your main question--again, my bad.

I know that my own enthusiasm for CPAP makes me see OSA all around me and makes me want to be an evangelist for CPAP. But what works well for me is not the same for others. People who come here for information are a self-selected group who are actively seeking information and advice, but people out in the world who are struggling are not necessarily tolerant of the same level of involvement because they may not be asking for it in the first place. I've had to bite my tongue many times, hearing people talk about getting drowsy during the day, or trying CPAP and stuffing it in the closet after a halfhearted attempt.

[chunkyfrog]

I, too have become a CPAP evangelist of sorts; mostly because my experience has been so profound.
Many times, I forget that others do not respond so well to treatment; and
some find the little concessions many take for granted are just too much for others.
I tend to irritate people--I will try to do better.
--I mean not be so irritating. . .