Hi Heather,

Dr T just gave Chris the setting of 8, there was no titration . Shortly there after I decided that cpaps were not his thing and went looking for a pedi-pulmo.  Now I need to decide which pedi-pulmo should see Chris....

The new dr said to take Chris's mask with her when she goes to the dentist so they can see what a cpap mask is and see where it is pressing on her face.  She said that the kids that develop problems have neuromuscular isues in addition to apnea.

Chris is being watched by a orthodontist already due to massive overcrowding.  I took her mask in the last time she was seen to show him.  He has not treated a child on cpap, or an adult for that matter.  He is not sure what it will do, so he said to go to the local dental school and see what they say.  He said the only thing he can think to do right now is to give her a retaining wire on her bottom teeth to keep them from being pushed back by the mask.  He would like to see her in 3 months to see what is happening.  

Just what we need, another potential problem to watch out for, don't we have enough already?

Have a great day,
Susanne

Hi everyone,

I bet you thought I had forgotten about writing this little drama.......nope......just been busy.  Here is the latest we went back to pedi-pulmo #1 and learned that Chris probably does not have asthma, but just a nice chronic lung inflamation of undetermined cause.  I think in english that means that "I don't know, don't want to find out with this complicated child and she is here for apnea why worry about her breathing in the daytime".

We are not happy with the attitude of this pulmo.  I asked what am I supposed to do when she gets her dad's cold...if she can't use her cpap and her O2 drops to 80% at night (not for the whole time, just parts) on a normal non-cpap night what is going to happen to her.......what do I need to do to ensure she remains healthy and breathing well.  The dr said "not to minimize your concern, but we all drop our O2 at night when we have a cold and a few nights won't hurt her".  Perhaps it won't but if she has less than optimal lung function when she is well AND she has O2 drops when she is well don't I need to be concerned about when she is not?????  I don't think the dr see's the whole picture or understands sleep apnea.  I was also a bit upset (to put it mildly) when her RT said hypopneas were not a problem, that they were normal....sort of like sighing during your sleep.....I had a slightly different understanding of hypopneas --that they are as bad as apneas especially when they last an average of 17 seconds upto 39 seconds.

The clincher that this is not our pulmo is was when the RT went nuts when she saw the printout from Chris's machine.  I was showing them the printout to try and get them to set her machine on auto so while we are waiting for her titration at the end of the month.  Of course they were not willing to set her machine on auto or on c-flex, they won't do anything until the sleep study pulmo #2 tells them what to do.  Apparently the RT did not know that there were machines with smart cards avaliable.  So we are going to check out pedi-pulmo #3 next week...this one is board certified in pediatric sleep and pediatric pulmonology (we would have gone there first but they were not listed on our insurance)  I hope this pulmo #3 takes this seriously and understands the whole picture.

Just in case the pulmo fun was not enough, her oncologist scheduled her for CT//MRI's from her knees to the top of her head.  I told him that the neuro and the pulmo both mentioned head scans and he said he would go ahead and order them all so she did not have to do this more than once.  So she has been throughly scanned and we have learned new things......according to the Anesthesiologist she needed an ET tube to ensure her airway during the scan (2hrs--far too long for a 7yo with RLS to lay perfectly still).  Then they asked if we had been told if she was staying overnight or not.  No one had mentioned staying to us but they said they usually keep apnea patients overnight if they have had general (which she did).  The scans went well and she did go home later that evening because she had a cpap at home to use....however the Zofran (sp??) they gave her for nausea did not quite work so she did not use the cpap that night because I was afraid of her getting sick wearing a full face mask.  If anyone ever gives her general again they will have to keep her overnight....it is far to dangerous for her to be home......getting over anesthesia and not using her cpap, not to mention that it is very hard on mom's to try and watch her all night.

Thats all I can think of for now, I hope she goes back to school tomorrow, 3 days off for her is fun but hard to get anything done.

Tatamom and Chris -- only 1 night off cpap, 760 hours on cpap and still counting

Hi Everyone,

It took 3 tries, but we have the correct pedi-pulmo now .  I took Chris to pedi-pulmo #3 (the one we wanted to see in the first place but was "not covered" by our insurance ...he is now).  He is board certified in pedi-pulmo and pedi-sleep.....WOW what a difference from a board certified pedi-pulmo  He doesn't get any credit for being on time, we had to wait an hour to get seen, but it was so worth it.

What can I say, he was great.  He was easy to talk to and was not bothered that I am an informed parent.  He looked at the entire "Big Book of Christina" not just the section about her breathing.  He looked at her entire sleep book (all the data from the card since Feb.....40-50 pages so far), he knew what a smart card is and said she has a great top of the line machine.  He said if she was his patient, he wanted to have everything, not be working with just one part of her breathing issues, and he said he works well with her neuro (they are in the same multi-specalty office).  He did not seem bothered that she has a risk of lung cancer and is being followed by oncology (pulmo#1 did not look comfortable with this info).

I told him congratulations , you have a new patient.  He changed some of Chris's asthma medication and said that she probably does have asthma even though she has no known triggers and has never had an asthma attack (pulmo#1 changed her mind and said no asthma last time).   He was very nice and asked me to cancell Chris's sleep study at the end of the month.  He explained his reasoning and I had no problem with his reasons, and will reschedule one at another location for the middle of next month.  I was very happy that he wants to try and get a baseline study to prove that she has apnea and then do a second night for the titration if our insurance will allow that.  He said he would like to have a baseline so he can #1 make sure he is treating the correct problem and #2 have a baseline to make comparisons to in the future and #3 he would read both of them and have access to ALL the information avaliable on Chris.  He said if he could not do a baseline study, that he would be able to tell from the titration study if she actually has apnea by how she responds as the pressure is increased.  He had his nurse coppy all 40-50 pages of Chris's sleep information from her machine so he can get a better picture of Chris before the study begins.  

So we are still   waiting for a titration, but I really feel like her care will be excellent not only for the asthma but also Apnea/RLS/PLMD.

I think I must be dreaming because this guy is too good to be true, but he is really there.............we have found our Dr at last   Christina likes him too .

I just bought a 100ft extension cord for her cpap......we are going camping with the girl scouts this weekend at the beach.....should be interesting.....a tent---me---Chris---her box----100ft extension cord--- I can't wait.

Susanne and my mini-hose head.....Day 85 on Cpap and 842 hours so far....a lifetime of healthy sleep to go.......

YEAH!!!!!! Someone who will finally coordinate her care!! I get so frustrated with the number of Dr's Hannah has and that I often get conflicting advice. This DR sounds GREAT!!! Good luck with the camping trip. That should make an interesting post!


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

What a wonderful way to spend the weekend....at the beach with Girl Scouts (and seeing my Boy Scout across the parking lot with his patrol).  Chris loved camping at the beach.  OK, we were not actually on the beach, we were at the campsites with water and power.  The older girls were wondering why we were not actually camping on the beach and I told them that Chris needs to have electricity so she can breath at night.  They were OK with that (they like Chris--she is their troop mascott) especially after they saw how much sea weed was on the beach....

Anyway we set up the tents and ran the extension cord from the power box into the tent with no problem.  Actually I love our tent, it has a small zipper on the front corner so you can get the air out when you are rolling it up, but it is the perfect size for the power cord and kept us from tripping over the cord each time we left the tent.  Each morning I put the cpap back into the car and removed the power cord from the tent, I'm not sure how curious people are about powercords going into tents, but I did not want her machine to dissappear while we were out of camp.  I did  leave the hose and mask.  It looked kind of funny, but I put the head straps through the loops for the window ties so her hose and mask had a chance to dry (and stay out of the sand).  The only problem we had was with "rain" in her mask, we ran the humidifier on 1, but perhaps we should have had it off completely.

So that was the beach camp with cpap.....we packed it up and drove several hours back home just in time to go to Chris's Brownie meeting.  She gets to go camping with her troop this next weekend.  They are cabin camping at a GS camp.  I was excited until my older daughter showed me the sheet saying that there were no outlets in the cabins.  I felt like crying when I realized that Chris was potentially going to be excluded because of power, they are ready for diabetics, asthmatics anything but sleep apnea. When I had talked to the council about their camps (summer camp) they said they had had a few kids with cpaps at camp........I think they were not telling the entire truth.  If there is no power in the cabins where did the kids plug in???? did they actually make them sleep in the nurses cabin?????  Chris is not going to resident camp this summer, I don't think her medical issues are worked out enough yet....Next year she will go.

I called the camp ranger and he said that Chris would have to sleep with me on the other side of camp in the men's quarters or in the assistants cabin away from the other kids, or we could sleep in the kitchen -- again with no other kids present (even if they have a parent with them).  I am very dissapointed with this.  I feel so bad for Chris that not only will she not be able to eat what the other kids are eating (food allergies) but now she can't sleep with them either.

I don't think the Girl Scouts have considered that a child that requires a medical device at night would be healthy enough to go to camp.  Time to change the Girl Scouts........


Susanne (suffering with a GS camping hangover) and my still sandy camp ready mini-hosehead Chris

--the buildings are too far from the power to run a power cord and leave the door open a crack and if they did there are a lot of things that will enter the cabins that are dangerous so that is not an option (and we are not just talking mosquitos)--

Tatamom,

Have you investigated alternate power sources? We're going camping in June, and I'm getting set up with a marine deep cycle battery and the appropriate connecting cables for my RemStar Plus M Series w/ heated humidifier. We plan to use the battery as a spare in our van, so it will charge as we drive. From what I've read on the forum and was told by the manufacturer, I can expect enough juice to last the weekend. I will be trying it out at home at normal humidifier setting (3) first to see just how long the charge will last.

There is a lot of info on this forum regarding alternate power sources for the CPAP, and the manufacturer will provide information as well.

If I ever need to haul the battery farther than just lifting it out of the car at a campsite, I'll get one of those handy boxes on wheels. I don't have the battery quite yet, but I know it will be quite heavy!

Good luck from an old Girl Scout,
Octogirl

Hi Octogirl,

I am thinking about an alternate power source, but I don't have extra money right now to buy one.  I would like to think that camping in a cabin at a GS camp that there would be power avaliable.  I did call the GS office and left a message saying that I would like to talk to them about an accessability problem at camp.  I'll see what they say.  They may just have never though about this particular issue.

Susanne

There are two battery powered CPAPs on the market.  The BreatheX, which is wearable, but would be too much for a kid and the Aiomed Everett.

Vicki


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

Oops    the Girl Scouts called me back and said that her leader had already talked to them about sleeping arrangements for Chris.....she will be in the leaders cabin.  If she were to go to summer camp they would assign girls to the leaders cabin and have the leaders sleep in a kids cabin...so they have done this before.  I am slightly embarassed but very happy to be wrong about GS camp.

Susanne   and mini-hose head   Chris

Sorry to say that Chris was not able to go camping with the GS this weekend.  She has been having trouble with her asthma this week (she was walking around with an 02 of 91% ...after using her inhaler.....and we had no clue she had a problem other than being lethargic)

It was declared to be a bad idea to take her 1 1/2 hours from the nearest hospital.  It was going to be fun but not worth her health.  She is going to see the pulmo tomorrow.....her AHI avg has gone from 1.4 to 1.8 (highest ever) over the last few days.  I think the asthma is messing with the apnea.  We will see how good this doc is soon.......

I have decided that there should be a limit of 1 life threatening condition/child.......trying to figgure out 3 (apnea, asthma, food allergies) is way to much.  But Chris is happy and healthy???? and doing well.

The adventure continues.......

Tatamom and mini-hose head Chris

Hi Everyone,

Chris and I are still here.  Chris has about 1080 hours on her cpap and is very happpy with it.  She loves the noise and runs the hose next to her head so she can hear the sound better.  I will say that I like the noise as well, I listen on a monitor and then I know she is breathing well (but sometimes I hear her not breathing and am sitting there waiting for her to start again.)

As I mentioned before Chris's asthma was acting up and I was needing to use a nebulizer on her every 4 hours (even at night).  The first day I just removed her mask and left the machine running so it would not mess up the compliance data and apnea recordings.  Then I remembered someone saying that running it without the resistance of breathing would wear out the machine, so the next time I decided to do something different.  When I took her mask off I put it on myself and put the nebulizer mask on her.  I figgured that as long as it was being used it would not "freak out" the readings.  Her treatments only took 7 minutes, but it was very eye opening to wear her mask.  It was hard to breath with the mask on and it felt very odd.  I was surprised at how hard it was to breath against a pressure of 8 (the ramp was easy).  After a few minutes it was a lot easier, and I could imagine myself in her position sleeping with the mask on (I almost fell asleep while waiting for the treatment to finish).  Now I understand a little bit of what she goes through every night.  I am very impressed with Chris for doing this without complaint every night.  It also helps me understand why if her pressure is raised she will probably get bi-pap.  Chris was very happy that I wore her mask for her and that now I understand better.  All I can say is what a great kid she is.

Now on to the interesting developments and new questions........ of course it is summer here and bed times are not quite as strictly enforced....so she has been going to bed quite late on occasions (ok 10 instead of 8:30).   Over the past week her AHI has dropped from an all time high of 1.8 to a low of 0.8 for the weekly average.  She had a 0.8 for 3 days in a row and then it went back to 1.0.   I am trying to figgure out what had changed for her AHI to drop that low that fast.  She has been tested for food allergies (again) and now is allergic to rice-wheat-peas-tuna-celery (????).  I don't know if eliminating another allergen from her diet or staying up late (but she is still sleeping 10hrs/night) or more time between dinner and bedtime is making the difference.  I don't think it is the asthma because that is still very variable.  I am begining to wonder if she has silent reflux.......after all she had everything else without symptoms why not  reflux.  She will be seeing the pedi-pulmo next Tuesday and I want to know about reflux/apnea connection....

At any rate I am very glad to see her AHI drop below 1, although the goal is 0.5-0.0 so we still have some work to do . I have decided that Chris is a complicated puzzle and that her sleep apnea is not a straight forward problem....way to many variables.

So......the quest for answers continues.......life on cpap continues.......and she is still waiting for the titration.

Susanne and my favorite mini-hosehead Christina

I dont have a child with OSA...but I am 26 and have it myself.  I also have serious asthma and allergies to everything. (starting to sound familiar? lol)  
I have had the last 2 since I was her age.  The OSA was only diagnosed this year....but we know looking back that I have had it since at least my preteen years.  That is when the snoring and some other symtoms started.  My mother always thought the gasping and breath holding was asthma related.  It was never mentioned to the doctor.  
I think that as hard as it is for her to be dealing with this at 7, she is also lucky.  She has a mom who advocates for her health.  She wont have to wait until she is 26 and has a small child of her own before she discovers the apnea.  
I will tell you that even after being on the albuterol rescue inhalor for nearly 20 years it will still keep me up if I take it right before bed.  It will also leave me a bit shakey if I have to use it more than normal.  I think that is pretty normal.   My daughter is 2....and every night I send up a thank you that she is healthy.  She is what prompted me to finally get my OSA treated.  The best thing I can do for her is to be healthy myself.  
I wish my mother had realized all those years ago that something was wrong.  I start CPAP this week....now I have to make myself 100% compliant.  I cant let myself do worse than a 7 year old.  :)  
You are both doing great.  
Has she been checked for allergies to pollen,dust,dander,or mold?  Those are my big ones.  They mess with my asthma horribly.  There are times of the year that I have a hard time going to work.  I have the cabin filter in my car changed every few months and take allergy meds to try and keep it under control.

Also....did some light browsing on masks that run small.  I found this...might be worth a look, comes in a petite size and they say it runs small in general anyway.   It is the Hans Rudolph 7600 VIP Full Face Mask with Sensa Seal.  I havent ever tried it....so dont have a clue on how good it might be, but it might be a better fit for her small face.  Just thought I would put that out there.

Susanne,

Enlighten me.  Is it necessary to get an AHI so low in a child where an AHI/RDI of <4 in an adult isn't normally even treated?  And I would think that an AHI of 1.4 vs. 1.8 is simply the inherent variabilty of the measurements and normal night to night variability and not significant to be a indication of a true increase in her AHI.  I would think AHi would have to vary more than 0.4 to be clinically and statistically significant.

Vicki


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

Hi Jennmary,

Thanks for the encouragement.  I'm glad I listened to my heart and did not give up when the neuro said I was nuts.  

Chris was tested for environmental allergies and surprised the allergist that she had none.....not even dust.  Her allergies are exclusively food -- rice, wheat, peas, tuna and celery.

I hope things are going well for you with you cpap,

Susanne

It has only taken 125 days, but tonight Chris will have her sleep study.  The called to set one up and asked if she was avaliable tonight.....I said I would move mountains to get her there tonight.....so off we go for more fun.

I am sort of glad it has taken this long, during the waiting time we have learned the Chris has Asthma/Food Allergies and Reflux, all of which contribute to some degree to her apnea.  We have 2 of the 3 under controll -- asthma is a royal pain--  So I am happy (yet frustrated) for the wait, now we will have the most accurate titration possible.  

I'll let you know how it goes.....I hope they have an XS Quatro mask for her to try and that the lab is in good condition (no broken parent cots)...See you tomorrow

Susanne and my mini-hosehead Chris -- 1255 hrs on cpap with a healthy lifetime to go