Hi,
~Long intro~
I am Kathy mom to LeAnn (8 years, DS, soon to be "hose head"). LeAnn had her first sleep study when she was 3, because of that study she had her tonsils and adenoids out shortly afterward. Did fine for quite awhile, the snoring stopped and a repeat study was never done. At about 3 1/2 she got pneumonia really bad (hospitalized, collapsed lung) and was on oxygen (nasal canula) and nebulizer treatments every 2 - 4hrs for 10 months, while sleeping because without O2, SATS would drop to to mid 60's (I had bought an oximeter). Then she just got better. I did notice when she ever had a sinus infection (she gets these frequently) she snores, but the snoring stops as soon as the sinus infection clears up. Starting about Feb this year things started getting worse, she started sleeping neck extended and head tilted back, and at times sitting upright in bed, head tilted back. So I took her to her Ped, ENT and then had a sleep study, and saw ENT again. This sleep study was worse then before we had her tonsils removed (I had almost cancelled it because she was getting better).
This was her results:
Total sleep time    507 min
223 Abnormal  resp events
Resp disturbance events  3/hr
resp dist index   26.4/hr
mean duration of apnea/hypo apnea  13.1 sec
longest obst event 33.1 sec
mean sat  90.8
lowest 84.8
7 obst apneas
18 obst hypopneas
198 resp effort arousals
3 times she sat up to breathe, head arched back

So saw ENT (she gave me results) and made appointment with sleep specialist, who did not have a copy of her results (the test he read) so I let him look the copy I had brought with me (I learned along time ago once you have the doc in the room you don't let him leave until your questions are answered!) So basically he said she has obstructive apnea, and there are no surgical options so she needs a CPAP and will be on one for the rest of her life. So schedule another sleep study and we will set the pressure of the machine. I started asking questions: room air or O2 ? he said "I don't know why we'd have to use O2". I asked about a nasal canula? he said "she needs a CPAP", I asked him about periodontal disease (I have been told there is a greater risk for CPAP wearers) he told me to talk to her dentist.   I didn't like him, but he is my only choice.
  
Anyway, we do the study August 20th, I am not looking forward to it, I can't picture her keeping it on.
I have read previous posts, and my main concerns are her keeping it on, getting tangled in the hose (choking), the noise (she already has some permanent hearing loss in one ear), and potty at night.  
So, my questions are:
Is this a really bad study?
How noisy is the machine?
Do your kids keep it on?
Can they get tangled in the hose?
Do you notice a big difference in your child after they slept with the CPAP for a while?
How often are follow-ups?

Thanks,

Kathy (LeAnns Mom)

Forgive me for doing a happy dance but I also have a eight year old daughter with DS on CPAP. It is really hard to find people who have similar experiences!!!  Ok to answer the questions I know:
Is this a really bad study? - I am no DR but it does seem like she really does have some issues.
How noisy is the machine? -I don't really think it is that noisy. It is more like a white noise machine or a fan. It varies from brand and type but I wouldn't worry that much about the noise issue, but understand your concerns.
Do your kids keep it on? -Hannah keps it on for the most part. When they said she needed it I thought No way was she going to keep it on. I agreed to try it and glad we did. I will admit the first two weeks were really hard, she did not wear it more than two hours before waking up and panicking. Dr said it takes time. Now we are about three and a half months into it and she wears it all night. She still has an occasional bad night and rips it off her face but that is getting less and less.
Can they get tangled in the hose? -Sometimes. Hannah started with a 6 foot hose and I found she thrashes around so much that she was pulling the hose off her mask. We switched to a 10 foot and it made a big difference.The hose itself is pretty thick so I don't worry about her getting choked or anything. It really is not an issue at all.You can get little clips with velcro to clip to the sheets and pillow to help with this.
Do you notice a big difference in your child after they slept with the CPAP for a while? - I didn't think I was seeing any difference until she had a bad night and took it off at 2:00 am. The next day at school her teacher said she was exhausted and do not want to do any work.She really does have a lot more energy. The other difference is her speech has really improved as far as the length of her sentences and she is a lot more descriptive.
How often are follow-ups?-We have been going to see the DR every two weeks. It is a pain but It really helps us get a handle on how things are going. There have been little issues we have needed to adjust so it helps. I think in time the follow ups will get less. All Dr 's are different but I recommend frequent follow ups at least at first.

I think the big thing is having a open mind. It is not easy at first but it is possible and will help so much in the long term. I think about the damage it was doing and am actually grateful for CPAP. Please keep asking any questions and we are always happy to try to help.Best of luck and keep us posted!  By the way-your daughters history sounds a lot like what happened with us.


_________________
Heather-Mom to Hannah(8-hose head) and Logan(4), wife to Paul (also a hose head)

Thanks Heather! I've read your post on another board too. I've replied a few times, but not posted there (I embarresed I can't figure out how to do pic's!) Your daughter is a cutie!
I'll keep an open mind. I know she'd focus better if she got a more sound sleep (heck, I bet I could too!)
Thanks again,
Kathy

Kathy,

My son just turned 6 we have been on the cpap for a little over a month.  You were asking if the machine was noisy, the one we have is really pretty quite the only time it gets noisy is when he pulls off his hose or his mask leaks.  We are still working on total compliance but we have some really good nights when he sleeps all night and wakes up in the morning and removes his mask by himself and turns off his machine by himself.  Jake does get wrapped up in the hose sometimes when he is tossing and turning but the hose detatches from the mask before he can get choked.  He has so much more energy during the day then he had before it is like a different child.  We are going for a one month checkup after t&a surgery on monday.  Best of luck.

Jennifer

Monday we received our CPAP polysonogram results. Got the script. I have not called the DME, to get equip yet, I need to re-arrange her bedroom, and I NEED to talk to her ENT. LeAnn did great with the "hose nose" (they try just the nasal mask first and if that works, they want the child to go with that instead of full face mask) during the sleep study, she actually pushed it back to "seal" when it came off.

Here's my frustration: I was told my daughter will need a CPAP forever. I have so many questions, and I despise the Sleep Study Specialist (SSS), he is an arrogant little twit and could not answer my questions.  Told me he was not a pediatric specialist, and it would be nice if there was a pediatric sleep study team here(dedicated PED Sleep specialist, pulmonologist, ENT and dentist/orthodontist) but there is not and "he" was our best choice (NOT!!).
This is the 2nd time we saw him and the 2nd time he did not have her results in her chart--And I brought the results to him and handed them to him the last visit!! RRRRRGGGG!!!
My questions (the twit didn't answer):

Her CPAP has heated humidity, and is a nasal mask, not full face (SSS said if a person does well with nasal no need for full face, I asked if that includes children, he said "that's what I just said") LeAnn sleeps with her mouth open so the air goes out he mouth, which can dry the mouth, and I was told can lead to gum disease with long term use (tech said they are seeing this in adults that have been on CPAP for 8+ years ) so we should see the dentist more often, her Ped dentist said "OK", but had not ever heard of this, have any of you?
 
Does your child see a sleep specialist, ENT, or pulmonologist?

Do you have a Ped sleep study team?

I have been told be careful the mask isn't "too" tight, it can actually push in the upper teeth, so if I notice a deformation (facial bones are not completely fused yet) the mask is to tight. If this is a concern why not take a facial Xray and keep track of this, what if I don't notice this (SSS said I would notice and need to take her to an orthodontist)?

Has anyone been told any of this, I could not find in previous posts.

Thanks,
Kathy

If your daughter is sleeping with her mouth open she needs a full face mask.I don't think it matters much if they are kids or adults but if you breath through your mouth at all you are losing pressure out of it.I think they would have noticed it during the titration study though so you may be ok. Not sure about the gum disease thing though  but will be seeing her dentist soon and asking though.
Hannah sees a pediatric sleep Dr. He is a actually a pediatrician who specializes in pediatric sleep disorders. We got lucky to find him as I have heard there are not many peds Dr's out there. Your DR sounds like he has a serious ego problem. What a jerk.We see a ENT all the time for other issues and he refered us to the ped sleep DR. We have yet to see a pulminologist.  No experience with the facial deformation but it is a bit concerning. Glad that you are on the right track though with getting her machine. Keep us posted.


_________________
Heather-Mom to Hannah(8-hose head) and Logan(4), wife to Paul (also a hose head)

Hi Bizzykbee,

Has your DD had her adenoids rechecked?  They can grow back and become a problem again.  As for the mouth breathing, there are pediatric chin straps avaliable that will help keep her mouth closed.  We were advised to see a pedi dentist/ortho to ensure there are no facial developmental problems.  The doc that advised this has never seen the problems but would rather be safe than sorry.  

As for your doc, I would go to the ends of the earth to find another one.....(if possible)  We have seen pedi pulmo (X3), pedi neuro (X1), and pedi ENT (X2).....finally decided pulmo #3 was the best to treat DD  (after careful review of sleep study lost OSA dx for now.....)

Tatamom

This is the 4th night for CPAP. She has not taken it off!! She barely moves in bed at all. I didn't realize she had such dark circles until they disappeared. I LOVE this machine ! Today in PE she ran the whole mile, she did stop and "take a rest" but the other kids started cheering her on and she got up and finished and she did the mile in cowboy boots (she got cowboy boots over the weekend, she does hippo therapy) she insisted on wearing them and not a battle I was willing to fight this am so she wore them to school with her yellow dress.  
As far as the CPAP, she just has the nose piece, she keeps her mouth closed most of the time, but I did get a chin strap today and a memory foam pillow, she sleeps on her side and was getting a red mark on her cheek.
Her sleep apnea number was only 3 1/2 (obstructive apneas and hypo apneas per hour) but with her "awakening's" and age, my insurance has agreed to pay on a 3 month trial basis (they usually want a number of 5 or greater). I learned more from the resperatory therapist at the medical supply store than I did from the doc we saw --1 1/2 hours (we were there getting fitted and he explained EVERYTHING) Her pressure on the CPAP is "7" I was told that a really low number, I thought that was a lot of pressure when I put it on my nose. I don't find it comfortable at all. I am so proud of her    
I did get a referral for another Sleep Specialist (she also a pulmo) from her ENT we will see her in about 3 months.
I am so happy this is working !
My next goal is for me to get a good night sleep!
Kathy

That is fantastic, kathy! I can just picture her running with her little cowboy boots and all!

It's wonderful to hear a success story!

Now maybe you can get some sleep, too.



keep us updated.


kim

Your comment about the dark circles reminded me of my same reaction.  The change in my daughter's dark purple circles under her eyes were the most noticeable physical change after getting cpap - I couldn't believe I hadn't noticed them before, now that's all I can see in the old pictures!   We've been using cpap for 4 years and we've found that her pressure needs changed as she got bigger.  Everything would be going along great and then I'd start to notice the attitude change, the dark circles would appear again and her doc would do another sleep study and they'd raise her pressure.  Finally, after 4 years of slowly increasing her pressure settings, they put her on an autotitrating bipap and WOW! This one's a keeper.  It starts at 7cm, but goes up to 20+ in the middle of the night.  I had no idea that her pressure needs might vary throughout the night until I started reading this forum.  Now I feel bad that we didn't get the auto machine sooner!   They also told us she'd be on the machine forever.  We think of it as a great way to keep the boys away, lol.