I can't believe it has only been 11 days since Chris recieved her cpap.  She has a total of 92 therapy hours already.  I am very happy that she is doing so well, but I am a little dissapointed that she still comes home from school tired.  I was talking to her teacher today (1st grade) and we were talking about her reading.  At school in the morning she can read anything you put in front of her, but by 6:30-7:00 she is having trouble even with simple words.  She is just too tired to read after school.  Sometimes she wants to go take a nap.

Last night was great, her actual AHI was 1.2, with minimal leaks.  She is doing fantastic and not complaining.  We are going to Girl Scout camp tomorrow (cabin camping not tent camping), so we will see how she does with other girls asking her questions and stuff like that.......this could get quite interesting....

You are doing a great job.  

Out of curiosity; How many hours of sleep does Chris typically get on a school night?

Hi Tim,

Chris usually gets about 10 hours of sleep a night, weekends are the same.  Sometimes it is closer to 11 hours.

Thanks for the encouragement.  

Susanne

I just saw this thread for the first time and read through it. I just have to say it is great how well Chris is taking to it, and how good you are handling it from a support standpoint.  My oldest (8 now) has sleep issues, and had a sleep study when he was 5 that didn't turn up anything other than a deviated septum that makes it difficult for him to breathe (he can't breathe out of one nostril basically). Since I have OSA and so did my dad, I'm half expecting Duncan to develop it as well at some point.

But anyway, I just wanted to wish you the best of luck going forward as you continue to go through this. There are definitely child sized masks out there, so even if your current DME doesn't have any, you can find them elsewhere.


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Day 12

I bet you have been thinking all along, this is too good to last, Chris can't be that easy to get a mask on.  You are right, last night she asked if she could skip the mask........I knew this was coming (and will come again many times), but I thought it would be sooner.

Anyway when she asked if she could go without the mask I said no.  I asked her if she always wore her seatbelt in the car and she said yes.  I asked her why and she said it keeps her from going "splat" if I stop fast.  I asked her if she wore the seatbelt yesterday, but not today and I stopped fast would wearing the seatbelt yesterday help her?  She said no, because she was not wearing it.  I told her that the mask was like her seatbelt......wearing it one day does not help you stay safe and healthy the next. you have to use it every day (unless you are sick) to keep you healthy.  She seemed to understand what I was saying, and put the mask on with no problems. I'm quite sure we will have this discussion again.....good thing I always use my seatbelt or that example wouldn't work.

It will be interesting to see how she explains this to her bunk mates at camp.....

Mask hours 10, actual AHI 1.6, L/Min 8.1

Day 15 sort of anyway

Camping is always an adventure........the bugs.....the snoring parents.....the camp food......the burn bans......the snoring parents......archery.......flashlight camp fires....did I mention snoring parents???

I had a very up close and noisy introduction to sleep apnea in adults.  On of the other parents in the cabin apparently has severe sleep issues.  I had never heard so much gasping, snorting, snoring and pauses in breathing in my life.  I suppose last year I would have ignored it and thought they were just snoring, but now that I am "educated" I could just hear those brain cells dying and see that blood pressure rise all night long as the other parent kept stopping breathing all night long.  That was scary and I don't even know who that parent was (they left the next morning).  That was quite an introduction to sleep apnea, I am so thankful that Chris won't have those types of problems, because we are treating her now and preventing them from ever becoming an issue.  That was a great inspiration to keep Chris on cpap.....

Anyway that snoring/apnea parent was bothering me, not Chris.  She goes to sleep as soon as the mask is on.  She did a fine job of showing off her machine, mask and hose to the other girls.  They were wondering what that long smiley face tye died thing was hanging from the rafters in the cabin was.  None of the girls noticed it when we first got to camp, they mostly noticed the cpap after seeing the colorful hose.  They asked Chris about it and she said it helped her breath.  She showed them how much air was coming out of the hose and showed how she could use it as a hair dryer.  All the other girls thought it was cool, and went to get the other girls to have Chris show them. Chris did just fine with the cpap and the other girls (of course they were all at least 11 or 12 and older).  The cabin was so noisy that no one could hear the cpap (I was 3 ft away and could not hear it).

On this trip I learned to let Chris tell about the cpap.  Not to worry, Chris has everything as under controll as it can be when you are 7.   Always bring a long extension cord (I did bring one).  Don't turn the humidity up to high when the air temp is in the 40's (I learned about raining in the mask).  Cpap and associated stuff requires an extra trip from the car to the cabin......

All in all a great trip, Chris had a lot of fun and so did I.  The girls are all more educated about cpaps than they were before the trip (their leader did not tell them anything about it in advance).  And sleep deprivation does not effect her AHI......on Friday night she only had 7 hours sleep and still had a good AHI, Saturday night she was back to 10 hrs.

I am so excited, for the first time last night her AHI was 0.8. finally under 1 Yea!!!!!

PS Chris used a bow for archery that was 4inches taller than her and still hit the target 4 out of 10 times.

Hi Y'all

We are still here.  Chris still loves her cpap and is doing very well.  Her AHI is now between 1.9 and 0.6....which is great.  She is having no problems with removing the mask or disconecting the hose (only once in the last week).  She is a very happy member of the Apnea Kids Country Club.

Next week we see the neuro again as well as the ped pulmonologist.  I'll let you know what they say next week.....bye untill then unless Chris does/asks something different.

Susanne

Hi everyone,

It is hard to believe but it has been 3 weeks since Chris recieved her cpap.  She hasn't had any real problems yet.  She loves her mask and colorful hose cover.  I have been able to re-explain again that the cpap is like a seatbelt, wearing it yesterday won't help today it is an everyday thing.  She is ok with that.

Today we saw the neuro who gave her the cpap again.  I told him that she was seeing a pulmo on thursday to manage the cpap usage.  He was fine with that.  I told him that Chris was still an agressive sleeper and that she is very hard to wake up in the morning.  I told him that Chris was still experiencing paraesthesia (tingling feelings on her back, feet, chest and face) as well as spacy moments when she is completely out of it and does not know what is happening.   I also told him that Chris is sleepier now than she was before surgery and cpap.

He has a plan of action for Chris now (he should he has been seeing her since last July).  His plan is to get her sleeping under controll and then see what happens to the spacy moments and other things.  He has given her Neurontin 300mg, to see if we can slow her legs down (15 movements/hr) and keep her from arousing so often (78/hr).  He said Neurontin only works half of the time, but the next step is dopamine-agonists something not studied for safety in kids.  So we will start the Neurontin after we talk to the pulmo and make sure this is a good plan, considering her breathing issues.

Now for the good news....the night before last Chris' AHI was 0.1,  last night it was 2.1....but at least for 3 nights in the last 3 weeks it was less than 1.  Compliance is not an issue right now.  She does not remove the mask at night.  She does not disconnect the hose very often.  Most importantly right now she is a happy kid, even the neurologist said I am doing a good job to have such a happy kid...all things considered.

Now for the funny part.  Last night I put Chris' mask on and she started breathing.....then the machine turned its self on.  She thought that was so funny.  She had me put the mask on again and again so the machine could start by its self.  She was having a great time and laughing the whole time.  She is a great kid.

Time to go, I'll let you know what happens next........the story of Chris the mini-hosehead continues

Susanne

Susanne,

Thanks for the update!  I am so glad Chris is doing so well!  Your neurologist sounds really good in his specialty.   I'm glad it worked out with the sleep specialists managing Chris' apnea.  Looking forward to continued updates:

Vicki


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

Hi eveyone,

 This is still week 4, the last post was also week 4.....not 3 (I am losing track)

Chris went to the pediatric pulmonologist on Thursday.  The Dr was very nice and quite upfront about the limits of what she can do for Chris.  She said that she was not board certified in sleep medicine and would not become certified.  I let her know that I wanted her to deal with the apnea, not the RLS/PLMD or potential lung cancer--those problems belong to other Drs.  She did say that Chris should not have apnea, she has none of the risk factors for it in children and she does not understand why Chris has it.  It was very nice to have a Dr actually say that this is abnormal, rather than the raised eyebrows that I have gotten from other Drs when I mention what Chris has.

That being said, Chris still has apnea...she did not read the book that said she should not.  However the pulmonologist is going to send her to another who is board certified for an evaluation and sleep study at the children's hospital.  I had to choose between these two Drs in the first place, and now we get to see them both and can decide who is best for Christina to see long term.....seeing both of them is an unexpected surprise.  Chris will have a cpap titration and a head MRI in the future.

During that very L.....O......N.....G visit (5 1/2 hours to be exact).....they gave Chris a pulmonary function test.  She did not do well at all on the test, but improved greatly when they gave her a breathing treatment.  So to the fun of RLS/PLMD/OSA/ we get to add asthma.  I have heard there is a link between apnea and asthma....time for more research.  

I have noticed that Chris is more tired now than she ever was before surgery and the cpap.  I mentioned this to the Dr and she said that was unusual and she wanted Chris to stop the cpap until it had been titrated.  I said no, because her AHI was down to 2 or less with the cpap and the Dr looked confused and said how can I know that without a sleep study.  I told her I was looking at the readout every morning and calculating the daily AHI from the 7 day average given by the machine.  I think my knowing about cpap, apnea and AHI confused them.....I think they are used to clueless parents.  Perhaps her being so tired is a combo of all of her problems and if we get the asthma under control the apneas might(???) improve.  I have been given Neurontin for her legs, but won't give it to her until I see how the asthma medication is effecting her apnea.......I think starting 3 medications at the same time for different conditions can be a bad/confusing thing.  So first we get her breathing and then we stop the nighttime marathons.

Anyway right now she is tolerating the cpap well (11 1/2 hours last night) and it is more challenging to get her to use the inhaler than the cpap......oh I forgot to mention that the RT had another mask idea for Chris.  I am going to have the DME order the new mask next week.  

Have a great day and I'll let you know when something else interesting happens.

Susanne and the mini-hosehead Chris

tatamom wrote:

sleep study at the children's hospital

I know Chris has had other sleep studies.  Is this her first at the children's hospital?  Also, do they let you stay in the room with her?  Just curious...

tatamom wrote:

seeing both of them is an unexpected surprise

That's great!  Let us know how the other doc is.

tatamom wrote:

we get to add asthma

I guess the asthma is a new diagnosis.  Gosh golly.  Just too much for her.

tatamom wrote:

.......I think starting 3 medications at the same time for different conditions can be a bad/confusing thing.

You are a wise mom.

tatamom wrote:

the RT had another mask idea for Chris

What is it?  What is it?  We must know!

The last two nights have been horrible.  We have had our first real thunder storms in a very long time and all 3 kids were up at various times the night before last.....I thought I was never going to get any sleep.  I gave Chris a try at her rescue inhaler to see if that would help cut down on the apnea's at night...all it did was keep her up....and then her mask was leaking and the hose came off in the middle of the night.

Last night we had another thunderstorm.  It was raining so hard that I could not tell if the noise I was hearing was the a disconected hose on the baby monitor or the rain, so of course I kept checking Chris to make sure she was still connected.  To add to the fun, the power went out, and she was having major leak issues last night.  After getting up for the 8th time to fix the leaks I was about ready to chuck the whole mess out the window.  Good thing that I know this is helping her and is worth the  frustration.....but at 2:30am I am inclined to wonder.  Anyway, I started her on the Neurontin last night and it did not have a negative effect....yet (the asthma medications have not had any effect on the AHI, it still jumps from 0.9 to 2.5 on any given night)

Today we are going to the DME to see if they have the mask suggested by the pulmo and to get her ramp reset to 25 min (it is at 40 and she is out long before then).  I am trying to get them to read her smart card, but their reader is out of action for now.  I will tell you what type of mask they are suggesting, all I have is the order numbers, so I can't tell right now.

Chris's studies were done at a free standing lab, (one that the pedi pulmo does not like) not the childrens hospital....but that will be next.

This is way too much fun, I can't wait until we get the leak thing under controll........

Susanne

Hi, Tatamom.  Wow.  You're doing an amazing job!  I just wanted to give you reassurance on the reading thing.  My daughter is always too tired to read after school.  She does enough in school that it's just too much.  It worried me in first grade (she's 9 and 4th grade now).  The summer between 1st and 2nd, she read a lot!  She read all of the first Harry Potter, and half of the second!  Then started second grade and didn't read at home again until winter break.  That summer, she wanted two of the library reading program prizes which required 1,200 pages in 5 weeks.  No problem!  Started 3rd grade and didn't read at home.  By then, I was seeing a pattern.  Same thing last summer - huge amount of reading during school breaks (and advanced proficient on the state standards tests) but not reading at home during the school year.  Right now, she's working on the Lord of the Rings series at school!  But only wants to read preschool books herself at home.  She really likes us to read out loud to her, and has amazing comprehension, but I guess she's just burned out doing it herself.  So don't yet worry about that drop in reading level between classroom and home.  If she's like my kid, it'll vary greatly depending on her school schedule.    

  Keep up the amazing work!   And good luck!

Aurora

P.S.  Don't all kids come home from school tired?  We ask an awful lot of them every day even without medical issues!

Susanne,

This is from the FAQ section at the top of the "Sleep Apnea Help" section.

Asthma and Sleep Apnea

I laughed when I read about the camping trip.  I went for a sleep over in the LA Natural History Museum with my daughter's troop.  Hundreds of us slept in an exhibit hall and our troop got a quick course in sleep apnea and CPAP therapy.  Kids are great about not making it a big deal if it is presented that way.  And just like your experience, there was one parent who snoring almost shook the tusks off a mammoth.  I too, wish I'd have known who it was.  Gorwn ups who don't handle it as well as kids always change their attitude when I tell them that my CPAP keeps me from keeping them awake.

Vicki


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

Susanne,

I just wanted to let you know that I really enjoy reading your Diary of a Mini Hosehead. Keep it up!

Hop


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