Hi,

I went to the DME on Tuesday.  I asked them to reset her ramp from 40 min to 25 min.  I asked them about the mask the ped pulmo mentioned, and I asked them to read the smart card so I could see how Chris was actually doing.

Here is the latest info......the mask that was sugested is a ResMed Hospital Full Face Mask (disposable). The DME had one and gave it to us no charge, so we could see how things went and decide if this was the mask for Chris.  If this mask is the best one for Chris we might have big problems with the insurance company, this is disposable and needs to be replaced every week......I'm pretty sure the insurance company won't want to buy 52 disposable masks for Chris every year until she grows into the small adult ones.  If they have a fit we are going to get the pulmonologist, ped RT, DME and myself talking to the insurance......the adult sized ones just don't do as well for Chris.  So far this mask seems to be working well for her.  She is not having leaks around her eyes and she is relatively comfortable.  That being said.......it looks like she is wearing a "jock strap" upside down on her face.  If we keep this style of mask I WILL be making my own straps..... The other masks look just like masks, but not this one........

On to the real fun stuff......when we picked up Chris's cpap they said it would record data, but I am amazed the information collected in the last month.  I did not realize the machine could tell the difference between an obstructive event and hypopnea, as well as measure snoring.....

Anyway here is the data  Chris has an obstructive index of 1.5 and a hypopnea index of 0.9, as well as a vibratory score of 0.8.  According to the detailed graphs from the previous week, most of the apneas occur between 3am and 7am.  She is using the cpap for an average of 9 1/2 hours/night.  (since then the average is now 11hours/night).  Her compliance is 100%.  One of the graphs for the previous week shows a gap of over an hour, and I don't understand why.....she does not remove the mask at night.  I wonder if the machine is having problems?

Her average large leak is 3 min, with a max leak of 81.9 and an average 90% leak of 42.1, and average leak of 35.9.  So I don't think she is having major problems with leaks.....I am listening on a monitor and going in and fixing them when I hear them or a disconnect.  I don't understand why the display reports of leaks is different from the printed one?  I have decided this is a confusing subject.

So....in my opinion Chris's cpap is not set high enough is she is still having measurable snoring, hypopneas every night and nights with 15 apneas.  She will be going to see the second pedi pulmo (board certified sleep specialist) April 11th to be evaluated to see if she needs a sleep study to titrate the cpap......When the called and said the 26,  told them that she has had 3 sleep studies, has a cpap arbitrarily set at 8cm, has been seen a  pedi neuro and pedi pulmo....why does she have to have an evaluation by another pedi pulmo to see if she has a problem....I have documented proof that she needs a titration and would be quite happy to bring it to them so we could get on with it.....after all we have known she has apnea since October.  They said that was their procedure.  I asked if they have a cancellation list and they said no, but I could call every day to see if there was an opening.  I asked who do I call (I also told them that I called the neuro every day for 2 weeks trying to get the sleep study results from the last test and then to get the cpap).  I don't know if I scared them by telling about calling the neuro or if the re-read the information from the first pulmo, but they called the next day and said how about the 21st and I asked if the had something sooner and low and behold there was an opening on the 11th (neither spot had been open the day before).  

So this is where we are today.  She has started taking the Neurontin for RLS/PLMD and has not had any problems (only 3 days so far so we are not quite up to the full dose yet) and she seems less tired in the afternoon......but that could because it is spring break and she can sleep as long as she wants.

Have a great day,  I'll let you know when things get interesting again

Susanne

Chris the super mini-hosehead with 1 month/306 hours of cpap time....and still smiling

Susanne,
You and Chris are the poster-people for CPAP moms and kids.  

As for the disposable mask, I would say that you should be able to find one that is just as good which will last longer.  I have also used respironics disposable masks before, and the ones I used had the disposable inserts that are changed out.  They look relatively inexpensive, but I understand your concerns with the ins. companies.  

As for the hour-long gap in the study, it could have possibly been a mask leak that the machine measured as the machine not being on.  Mask leaks happen from time to time when a person rolls over to an akward position or something like that.  

Also, another thing to keep in mind is that, just because the machine printout is saying that there is still snoring etc., does not mean that they are happening to the extent which the printout implies.  The machine-scored printouts are very sensitive, and therefore not as accurate as an actual sleep study.  That being said/  I agree with you~She needs a titration!!!!!!!!  There should be justification for any pressure setting on a machine.  

You guys are doing such a great job, you should have the appropriate pressure so you can reap the benefits of your hard work.

tatamom wrote:

I am amazed the information collected in the last month. I did not realize the machine could tell the difference between an obstructive event and hypopnea, as well as measure snoring.....

This is the data you can see at home if you get EncorePro and a card reader.  While the card will keep long-term summary data, it only saves 7 sessions of detailed data, so I find it helpful to download it at home.  I like to see all of my details each day.

tatamom wrote:

One of the graphs for the previous week shows a gap of over an hour, and I don't understand why.....she does not remove the mask at night.  I wonder if the machine is having problems?

No problems with the machine.  It was the change for Dalight Saving Time.  Everyone who has EncorePro saw it.

tatamom wrote:

So....in my opinion Chris's cpap is not set high enough is she is still having measurable snoring, hypopneas every night and nights with 15 apneas.

Has anyone discussed using an Auto-pap for Chris?  An Auto-pap will recognize the events and modify the pressure accordingly.  I'm not suggesting it as a replacement for the titration study, though some people advocate this.  I simply understand how important it is to you to get the best therapy for Chris and with nights with 15 apneas, it seems an Auto might be more effective.  There's an Auto version of the machine you have.  It gathers the same data you saw and more - the details of the pressure adjustments.  That pressure adjustment information is included in the EncorePro reports for Autos.

I am really mad .  I just realized that when I took Chris's cpap to get the ramp time shortened, that they really messed up.... ......they did not shorten the ramp....they removed the ramp and reset the pressure at 4...... ....it should be at 8.  So...... I am not happy with the DME that they incorrectly set the machine, and I am slightly embarassed    that I did not realize it until tonight.  I suppose that setting the pressure low is slightly better than setting it too high, but I don't know why the messed up in the first place.  I am still having Chris use the cpap anyway so that she won't think that it is optional.  

 Anyway they will be seeing me on Monday   morning so they can reset the machine properly (I know I can get the information and do it myself, but I am still nervous about messing up the other information on the machine and if I correct it myself they won't realize that they screwed up........)

Susanne

Do you ever have one of those days when you are not quite sure this cpap thing is working?  

I went back to the DME yesterday and told them that the cpap was not working properly.  They took the smart card out and came back and said that the card was correct, but that the machine was not reading it properly.  The RT said that he is not sure if he made a mistake (he usually uses the REMstar auto M as an auto not a straight cpap) or if there was a problem with programing the card.....next time he will only program the machine and not try with the card.

I thought since I was at the DME that I would get the detailed print out for the week spent on 4cm.  I came home and compared the 4cm to the previous week at 8cm an did not see a lot of difference.  The average for the 4cm week was 2.2 and the average for the previous 30 days was 2.4. (Her post surgery AHI was 8....in kids it should be less than 1.0 or 10 events/night)  When I compared them day by day for a 2 week period, there was not a lot of difference in the AHI high.... the 4cm range was 1.0 to 2.0 with 11 hour sleep and up to 22 events/night......the 8cm range was 0.7 to 2.2 also with 11 hours of sleep and up to 19 events.  I wonder if her AHA is artifically low because she is sleeping so long--if she went to bed at 9:30 instead of 8 there would be a much higher AHI because very few of her problems happen early in the evening?

Bottom line.....I'm not seeing a lot of difference in the results.  I am glad that I have both sets of graphs to show the next pulmo, and I wish I knew why there is so little difference in the graphs....is this working or causing more problems????  Chris is so tired she is falling apart at night and is hard to wake up in the morning. I can't wait until April 11 when we can show the graphs to pulmo #2 and see what she says.  In the meantime we are going to continue and see what happens next (she has been on the PLMD/RLS meds for 1 week) hopefully things will get better soon.

Susanne

Oh man, hang in there. Boy this stuff sure isn't easy is it? I wish the whole situation was more cut and dried. It seems like there are so many variables to worry about. I think you and I are a lot alike.


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

Hi,

I just thought I would let you know how things are going with Chris.  She has now spent 6 full weeks on cpap, 5 at the correct pressure and 1 at the wrong pressure (DME error).  She has had a total of 419 hours on cpap so far.

She is still doing very well with the cpap.  She has not had any problems using it or any objections to using it (mutany will not be tollerated   )  She has not had any hose disconections or major leaks for a while.  She tried the disposable mask for a few nights at the low pressure and is now using her regular mask without any major leaks (as far as we can tell).   However she is still sleepy and hard to wake up.  Yesterday she tried to fall asleep in the car at 1pm, she is doing better at staying awake, but she still is a sleepy kid.

Chris is still taking Neurontin for RLS but I am not sure that is working.  She is also taking 100mg of iron a day, Singlular and Asthmanex.  I am wondering what the asthma meds are doing to her sleep.  I have read that inhaled steroids can mess up you sleep and one place even said that they can interfere with your upper airway and contribute to OSA.

Anyway that being said, I have a lot of questions for the next pedi pulmo that we see.  Someone mentioned a link between GERD and OSA, she had reflux as a premie but I assumed she was well past that issue....perhaps not.  I have seen GERD causing OSA and OSA causing GERD....can they please make up their minds.  My DH was doing a search for OSA and asthma after Chris was diagnosed with asthma.  He said there is nocturnal asthma which mimics OSA very well but does not respond to CPAP, unlike OSA which does respond positively to CPAP.  I want to know how they tell the difference between nocturnal asthma and OSA......I would be very distressed if we were treating the wrong thing....Chris has proven herself to be a "spotted Zebra" in medically speaking so I just need to be sure.

She is being checked for allergies April 5, sees the pedi pulmo sleep dr April 11 and back to the original pedi pulmo April 26.

Susanne
Chris (my favorite mini-hosehead)  8cm, REMstar auto M series, Respironics ComfortFull

I am glad to hear she is doing so well with CPAP. I have high hopes this will work for Hannah too. I find it very interesting that you found a link with OSA and GI issues. Hannah has ben having severe acid reflux daily and I was thinking there may be a connection. I am awaiting a pediatric GI consult.I am anxious to hear what you find out.


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

From the FAQ section at this site:

OSA and Acid-Reflux

Click on the Un. of Maryland link and also go back to the FAQ and you will find connections between OSA and variety of disorders.

If you want to see current medical research in any area, go here:

U.S. National Library of Medicine PubMed Query field.

PubMed is where all peer reviewed medical research articles in the world are archived.  It is run by the U.S. National Institutes of Health and The U.S. National Library of Medicine.  You can search with any terms, like "pediatric obstructive sleep apnea", "diabetes obstructive sleep apnea", "upper airway resistance syndrome", etc.

Many times you can get the full length article through a boxed link to the right.  Or, if that is not available, I can get it.  If you need help interpeting the article, PM me.

Vicki


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

Thanks so much for those links. I appreciate the info.


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

I am so excited.  Chris is finally getting to go to a sleep over at her friends house.  Her little buddies mom was finally brave enough to try having Chris over.  I am so glad, Chris was missing visiting her friend.  Sleep overs are such a fun part of childhood I hated for her to miss this (she had been over many times pre-cpap).  I showed the mom the equipment and set it up where Chris will be sleeping.  The mom seemed a little bit scared of the whole thing but I told her Chris is a pro.  She has used it for over 550 hours and 52 days without a problem other than an occasional hose disconnect.

On another note, I have just learned that Chris is allergic to wheat and rice (and peas but we can live without them)......the allergies may be contributing to the asthma......the asthma may be contributing to the sleep apnea.....it will be interesting to see how treating the previousely unknown food allergy will change her breathing.  This in turning out to be an interesting adventure with a lot of twists and turns that I never saw coming....but here we go off on another adventure wheat and rice free living.

I'll let you know how things go at the sleep over.....

Susanne

Susanne, I will send you a PM. Welcome to the wonderful world of wheat /rice free living! Isn't this just so much fun! - Also glad she is getting to go on her sleepover!


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

Just to let you know that the mini-hosehead sleep over went well.    The mom did not have any problems with Chris or the cpap.  Apparently Chris's friend did not say anything negative about the cpap other than she was glad she did not have to wear one and that Chris was blowing air on her all night (same bed).  Chris said she agreed that she wished she did not have the cpap.

Overall a success , but Chris did have leak problems...her leak rate was much higher than at home.

Off to see the next Pedi-Pulmo-Sleep Dr on wednesday....the fun never ends here  


Susanne

Hi everyone,

The Apnea Kids Country Club adventure continues ......Chris finally got to see the pedi-pulmo-sleep dr (we have been trying since Dec).  It was quite an appointment.  We had the opportunity to talk to a resident, she was surprised that Chris has apnea.  She was going over a sleep questionaire with me and Chris was not/had not shown any symptoms of OSA.  I don't think she would expect a child like Chris to have apnea.  Anyway after enlightening the resident about unusual children who don't have the symptoms associated with their conditions we moved on to the Dr.

The Dr. was not very happy that Chris had been given a cpap with an arbitrary setting of 8.  She wanted to know why the setting was 8 and I said Dr. T. said that was his best guess.....apparently not a good idea (didn't I already say that?)  She asked if Chris had c-flex and I said her machine had c-flex and auto but the machine was not set to use them.  She wanted to know why the machine was running as a straight cpap and I said because Dr. T had written the order for a straight cpap.  She was less than amused.  I am glad that Dr. T is not responsible for managing her apnea and I think that this Dr is as well (although she is not responsible either, that belongs to pedi-pulmo #1...at least for now)

Back to the visit.....She said that her goal for a child's AHI is from 0.0-0.5 and Chris is running 2.2-2.4.  She said that Chris's 28 was quite extreme and might explain some of her attention/learning problems.  She said that the non-cpap AHI of 8 is also quite high so Chris needs cpap (I think I said that as well).  She said that they will try the sleep study starting at 4 and if Chris needs more than 8cm that she will give her a bi-pap trial.  I am under the impression that the Dr is expecting to need the bi-pap for Chris.  She says she will try to find the setting that gives her both a low AHI and the best sleep quality.....it is a ballancing act between breathing events and quality of sleep and oxygen saturation.  

I was not nuts (like DH thought) being concerned jaw growth and the effects of having a child straped into a mask 10 hrs/night.  She said that she has not seen a child with a problem from a mask (that did not have other contributing factors), but that Chris would need to be checked by a pedi dentist/orthodontist twice a year until her face has stopped growing just to make sure that there are no growth issues.  

So......I am waiting for the hospital to call and set up the sleep study date (sometime at the end of May) and then hope we get called for a cancellation so we can get this straightened out.  I am hoping that our insurance won't have a fit if Chris gets changed to bipap or vpap after using the cpap for a few months (I am glad that we have complete durable medical devices coverage). I have to say that I am quite impressed by our DME, the RT said that she would try to find a mask that would fit Chris, and when I handed her the booklet that came with Chris's mask she was surprised that the DME had found one that was a reasonable fit.  Apparently they use nasal masks and kid sized chin straps, they don't even have small/petite masks at the office for kids to try on.

 I am glad that Chris's problem is being taken seriously now and that in the end it will be straightened out.  I just wish there was not so much waiting.

Susanne
Chris has 586 hours on her cpap so far, 10 hours/night and 100% compliance

Hi there, I was wondering how Chris's appointment went. Very interesting to say the least.Did Chris have an initial titration study when Dr T set her pressure at 8 or did he just guess? I also never had thought about jaw growth. I will have to write that one down for the next visit!


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