Well I have the results from the post surgery sleep study.  Christina has both sleep apnea and PLMD.  

Here is the info

Pre-op study   AHI = 18   Apnea 1, Hypopnea 114, leg movements 8.8/hr  O2 desaturation 85%  Sleep efficency 95%

Post op study  AHI = 8     central Apnea 1 (17.6 seconds), Obstructive apnea 5,  Mixed apnea 2,  Hypopneas 54 (longest 39s, average 14 seconds)  O2 desaturation 79%   Sleep efficency 82%, arrousals 600 (may be computer error for high number, but first test showed about the same amount)

The doctor was trying to figure out how old Chris was, and when I said she was 7 he said that it would be impossible to get her to wear a mask.  I told him that she has been doing medical stuff since she was 3 (she had a rare form of cancer, and has had surgery 2X, MRI, CT, Blood tests and more x-rays than I can count....she is a trooper).  I told him that if I prepare her she will do whatever I ask, it might take time, but she will do it. (after researching apnea...non-treatment is not an option)  What he wanted to do after I said that was to give her a c-pap and just guess that the setting she would need is 7cm.  I told him that we have new insurance, so a new study should not be a problem, because they don't know about the last 3, so she is going to have a titration study.  THERE IS NO WAY IN HE** that I am going to let this dr guess at the setting for a c-pap for Chris.  I did not tell him this, but I was thinking it.  If he was not going to do a titration I was going to ask for an apap.......

So bottom line, Chris is going to be taking Clonazepam to try and reduce the leg movements, and then a sleep study in the near future.

How do I get a mask so Chris can get a little feel for the mask  and get a good fit before the test.....I don't want it to fail because she takes the mask off or because the mask is the wrong size???? I don't have much confidence in this lab havimg the correct size mask.......they don't titrate children very often (I asked the last time we were in)........

Thanks Susanne



Last edited by tatamom on Mon Jan 29, 2007 9:49 pm; edited 1 time in total

We were given a disposable CPAP mask made by respirionics.  It came in a small and petite size.  Will uses the petite and he is a pretty big 5 yr old.  They gave us the disposable kind to use to get him used to it, and once he was able to wear it for a whole night then we called for the sleep study.  SO maybe you can just call them and get them to order both sizes of a fairly cheap mask to get her used to it.  They said once they proved he needed CPAP/BiPAP then at that point we would find one of the really nice masks for him.  
Will is autistic among all the other stuff so it took us about 3 weeks but then he was ok with it.  We still put it on occasionally to keep him used to it now waiting for the insurance approval.
Good luck, and I'm glad it gave you the information you needed
Sarah J
PS We've had really good luck with clonazepam, and it helps make kids sleepy as a side effect.  Will takes it for Myoclonic seizures.

Susanne,

You are the best advocate for your kid that one could hope for, knowledgable and assertive.  I am so glad they have a treatment plan!!

Vicki


_________________
That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

Hi Susanne.  I'm glad you got the results finally.  And good for you on pushing to do another sleep study with the mask to find out what will work best for your daughter.  Our children's health is not something we expect doctors to guess at when there's a way to determine something for sure.  

Did the doctor say anything about the central apnea and the deep sigh thing we talked about before? And what is PLMD?  I'm not familiar with that.  

I hope the mask works out for Christina.  She sounds like such a trooper.  Isn't it amazing what we can learn from our kids?  

Keep us posted on what happens next.

Sara

I asked about the deep sigh and then not breathing.  Her neurologist said that would be a central apnea.  I looked at her graphs, and in the begining of the sleep study is when she had the central apnea and her O2 was 79%.  I remember hearing her deep breath, so I was hoping that it would show up.  So she now has episodes of Central, Obstructive and Mixed apnea.

I called the DME to try to find a mask for Chris, all the places I called would have to special order one for her.  I called the sleep lab where her studies have been done, and they can't remember the last time they titrated a child.  They said they would special order whatever they needed for her and let us take it home before the test so that she would be able to tolerate the test.  I have the feeling that this will take some time, but I would rather it be done right and without stress rather than fast.

PLMD is periodic limb movement disorder.  Christina was moving her legs 18x/hr, which was contributing to 600 arrousals during the study.  Apparently too much movement means that they are not able to sleep well.  She is taking an anti-seizure/ anti-anxiety medication to help her get to sleep and keep her from playing rugby in her sleep.

I can tell this is going to be quite and adventure, getting her apnea under control, but failure is not an option.  Someone mentioned that their child was in the hospital for 2 days before the titration, so they could work with the child and get the child comfortable with the mask.  Our neuro uses a free standing lab, so this is not an option.  Chris is a great kid, and if I allow her time she will be just fine.

Susanne

Whoever your DME is should be willing to go to whatever length to find a mask that fits.  If they dont, bug your doc about it; doctors will often get on the horn and put some pressure on the DME's.  Especially with kids.  Many companies that make CPAP products dont really market masks for kids; they just make adult masks in small sizes, which often works fine, but because of the great variations in needs and sizes, it can take a lot of effort to get a mask that your child will actually be comfortable with and wear.  

It is important for your child to have the mask before you go to the lab so he/she can "practice" wearing it; even if for just a few minutes at a time.  For a child to spend 2 nights in the hospital before a titration is almost unheard of (and I work in a pediatric-only lab).  In all but the most extreme cases, a little guidance and appropriate early preparation is sufficient to make the experience work.  There may be a few tears on the night of the study, but nothing is painful about it, just new and scary, and nothing that the child can't get used to.

Thanks Tim,

I contacted the local childrens hospital that has a pediatric sleep lab and asked them what they do.  I told them what I wanted to do with Chris....having a mask for her to get comfortable with and all....and they said that is what they do with kids (although they have books and video's of kids with masks on).  So it was good to know that I was on the right track.  I called our neuro to see if he knows of anyone who can help me get Chris properly fitted and comfortable with the mask, I am still waiting for the answer to that.  I could go and call a pulmonologist or RT by myself, but I don't want to get on the wrong side of the best neuro in town.

I can't wait for her to get her c-pap.  Last night I gave her the Klonopin for RLS/PLMD and put her in my bed.  She has never been so still when she is sleeping...it was scary still. I wonder if the medication is making her breathing worse....last night her breathing was very shallow and slow.  I also suspect that she was having seizures or twitches from the medication.  This is scary and I wish we were on to the next step and I did not have to worry about her breathing at night.

Susan

Good to hear your getting some help.  I would wait and see what your neuro says, but you are free to go check out some DME's in town.  Insurance usually pays for CPAP masks/etc. if you have a positive diagnosis of OSA.  I have not heard of RLS meds causing seizures, but that doesnt mean its not possible.  Does she always sleep in your bed?
T

Hi Tim,

Chris does not usually sleep with me.  But the neuro has asked that she does periodically so I can monitor how much she is moving.  I thought it would be a good idea to see how she responded to the medication by letting her be with me.  She did much better on 0.5 mg of Klonopin than on 0.25mg....but this morning she went to school looking like she had a hangover, and this evening she is very emotional.  I think tonight we will try for 3/4 of a tablet and see what happens.  I talked to some parents on another site and they said they their children had extra movements from Klonopin like the ones I described, so I will just watch and see what happens.

I did not hear from our neuro today (he is horrible about calling back) but the sleep lab called and tried to set up her sleep study for tomorrow.  I said "you do know this is on a 7yo" and they said "yes" and I said "you can't do a study on her so soon, you don't have the proper size equipment and have not given her any time to become familiar with the masks"  at this point she passed me to her supervisor.  He is going to check their inventory and see if they have any petite masks, if not they will order one for her as well as a child size.  They are then going to call me and I will bring her over so she can have the mask fitted and take it home so she can get used to it.  When I feel she is comfortable with it I will call and arrange the sleep study.  This lab has not done titrations on children, but they are willing to let me decide when Chris is ready.  She has already decided on names to call her cpap....  Our insurance has no problem with paying for a c-pap and equipment.  We just changed insurance on monday and I asked specifically about machines and pre-existing conditions.

Thanks
Susanne

Excellent.  Good for you.  CPAP cant be rushed with kids.  We have even sometimes given out a mask a month ahead of time for especially anxious kids, and had them play with it in the bath tub, have a stuffed animal wear it all night, etc.  It makes a big difference.  I'm sure there are kids who could do OK on the first night with CPAP, but that is definitely not an ideal situation.

The plot thickens........I just recieved a call from the sleep lab, and they said that after some investigation, the would prefer to pass on titrating Chris.  They said that they don't have the correct size masks or straps.  The said that titrating a child might be more complicated that an adult and they were not willing to practice on Chris.  I wish we could have this done soon, I think the RLS medication is making her breathing worse, but it is very important to do it right the first time.  

I give the sleep high marks for being honest and saying they were in over their heads.  They are going to tell the neurologist that they won't do Chris and suggest sending her to the childrens hospital sleep lab (I don't know why she was not there in the first place).  So......the story continues......

Hi Susanne.  I'm sorry to hear your setback with the sleep lab.  But like you said, at least they're being honest about their capabilities.  Hopefully you can get into the sleep lab at the children's hospital quickly.  Please keep us posted.

Sara

tatamom wrote:

  I wish we could have this done soon, I think the RLS medication is making her breathing worse, but it is very important to do it right the first time.  

First of all, let me preface this by saying I do not have a medical degree and am only speaking from experience.  I was told by our Sleep Specialists during our intake interview that my daughter would need to come off her Klonopin if the sleep study showed she had sleep apnea (which she does) because Klonopin at high doses can cause respiratory issues.  There are other medicines for RLS out there that do not suppress the respiratory system as part of their effect (e.g Mirapex--which is what my 29 month old daughter is on for RLS like symptoms that were only partially helped by Klonopin) so I'd ask the physician who prescribed the Klonopin for another medicine for RLS given her sleep apnea.


_________________
Erin
Mom to 3 children 4 and under!! including a sweet 2 year old who has chronic kidney failure with severe cystic encephalomalacia, cortically blind, mixed cerebral palsy, severe global delays, Sleep Apnea, possible RLS, reflux, G tube

Thanks for the info on Klonopin.  She will never be taking that medication again.  After 3 nights on it (1@0.5mg, 1@0.25 and 2@~0.35) she had a bad reaction and turned into a little ball of rage....tearing up things, crying, sobbing, screaming....not good.  Our neuro said that kids don't usually have a problem with Kloniopin.  Our neighbor (a ped) said that she must be very sensitive to have that much of a reaction this stuff.  I wish our neuro knew what he was doing.

I am still waiting --not very patiently-- for him to send her info to the pediatric sleep lab so she can be seen by people who supposedly know what they are doing.  If I don't hear from him this morning, I am going over to the sleep lab and getting her records so our pcp (who knows nothing about apnea in children) can send her to the ped pulmomologist/sleep lab people.

Anything else she should not take with apnea???


Susanne