New and having problems

[flutterby]

Just got my machine on last Tuesday. Havent been able to wear it thru the night. It gets on my nerves. But, I can tuff it out. My daughter I share a room with whom has Down Syndrome is freaked out with me wearing the mask. So I have to wait until she falls asleep to put it on or not wear it. I usually snore so loud it wakes her up and she yells at me to stop. With the mask I dont snore. Tried to make that point but didnt phase her. She is 18. Guess it will just take take for the both of us to get used to it.

[roster]

When your daughter is relaxed and rested during the day and the two of you are doing a little fun activity she enjoys, try wearing the mask for a few minutes at a time and check her response. Hopefully she will gradually accept it.

[Guest]

I have to agree with Roster. You must gain acceptance from your child or you will go backward in treatment.

Ask the doctor how to have your child become more comfortable with you wearing the mask.

I am about two months into treatment and I have never felt better. The first two (2) weeks are rough, but now I would not go without it.

Keep the faith and be strong, together you can make it. Keep us posted.

[Willtry]

Could also ask her to help decorate it. This way may not be as scary looking

have you looked in the mirrow with it on :;; Feak Out ;;;;

[flutterby]

Well I talked about it with the lady that gave me the machine and gave me instructions etc. She said to let her look at it and play with it. Show it to her etc. But when I put it on she gets scared. I think it reminds her of hospitals. I tried waiting until she fell asleep but the night before last I fell asleep waiting.

What's upsetting is that she has sleep apnea and I feel kinda gulity cause I'm getting treated and she is not.
I took her for sleep study and we ended up having to leave that night cause she was upset and crying cause she didnt want the wire stuck on her.

She needs hearing aids too but we couldnt get them cause she wouldnt get fitted for them. We ended up having to leave because she was upset and crying because she didnt want them to put anything in her ears to mold them.

I have fibro and the dr. says I should feel better but I havent wore it all night since I got it.

[robysue]

Well I talked about it with the lady that gave me the machine and gave me instructions etc. She said to let her look at it and play with it. Show it to her etc. But when I put it on she gets scared. I think it reminds her of hospitals. I tried waiting until she fell asleep but the night before last I fell asleep waiting.

A practical idea to try: Get a colorful hose cozy and some colorful headgear pads (check out Pad-a-Cheek) and use them: They may take away some of the "hospital look" of the equipment on your face. And think about naming the hose/mask some kind of cutsy name that your daughter can use to refer to the equipment. Seeing you put on "Babar's nose" might be easier for your daughter to get used to than seeing you put on the "cpap mask".

From the rest of your post, it sounds like you are dealing with multiple difficult problems with your daughter's health situation. I wish you all the best in both figuring out a way to get the treatment you need and in time, get your daughter to accept the treatments that she's currently so afraid of.

[flutterby]

Thank you! I will check out the hose and face mask pads. I didnt know they had those things available. I'm going to try and talk to my daughter again when she gets home from school.

[adksleepygal]

I love RobySue's idea of using the colors, letting her help with it - and a name she would love - that will involve her too. As more time goes by she will get used to you with this - kids are always leary of anything like this especially when it involves their parent. But DO NOT feel guilty for having treatment. Remember you must be YOUR best to be able to be the best parent for HER!
I will be curious to see if it helps your fibro - keep us posted with your progress. You do have a lot on your plate - support is going to be a help for you and whomever you need to involve to get this support and her used to the cpap idea is absolutely worth it! Prayers and best wishes.

[beachgirlHP]

Try paint markers and letting her "paint" your face while your wearing the mask. She will be excited whenever new masks come in the mail cause she will be able to get creative again!

[flutterby]

Thank you so much. I was looking at the hose covers and saw a cheetah one. She loves cheetah stuff. There were also instructions on how to make your own. Maybe if I let her help me pick out the fabric and make it she would get used to the idea more.

[Tired Linda]

What's upsetting is that she has sleep apnea and I feel kinda gulity cause I'm getting treated and she is not.

Flutterby, just think of getting on an airplane and having the flight attendant give that talk...if the oxygen mask drops down, the adult should put theirs on FIRST in order to be able to help the child. Remember you need to be able to take care of yourself in order to take care of her.

Linda

[flutterby]

Thanks Linda
Love your quote!!

[flutterby]

Break thru! Marissa actually asked me to put the mask on because she didnt want to hear me snore.

[RDawkinsPhDMPH]

First you: It is not uncommon to take awhile getting used to the cpap. Some people love it from day one and some take weeks to months to get used to it. I even had one guy who tried diligently for a year before he was able to sleep well with it. (He had had several strokes so was highly motivated.) I cover some of the issues in my book "how to tolerate cpap therapy for your sleep apnea"

Second, your daughter. In almost 25 years of working with sleep disorders, EVERY single Down's Syndrome patient I have tested (ranging from early teens to adult) has had obstructive sleep apnea. Most of them adapt well to CPAP and those that live in a local home take pride in their CPAPs. You might be able to solve your problem and, at the same time, help your daughter by having her checked for sleep apnea.

[robysue]

Break thru! Marissa actually asked me to put the mask on because she didnt want to hear me snore.

This is GREAT news! Hopefully you can keep Marissa thinking positive things about your CPAP machine for a long time. Let her pick a name for it too!