Hi everyone,

Would you believe it if I said that Chris has still not had a titration .  YUP.....she is still waiting for a titration.  

It is not as bad as it seems, I am not at all upset about last night.  We went expecting a titration and when we got there they said that the order was for a split study.  The tech said that she wanted to watch Chris for 2 hrs and then start the titration.  Well.......2 hrs came and went and no cpap.....3 hrs came and went and no cpap .  I had been looking at her monitor and had seen odd breathing patterns as well as her breathing rate drop to 10 several times.  I was laying there watching her feeling very trapped.  If the tech did not come in and titrate her then she did not have apnea and I had been making her use a cpap for 4 months to treat a condition she did not have....I could not think of a way to explain that to her.  Then I started feeling bad because the alternative was for her to have apnea and require a cpap far into the future.  Both ideas were very uncomfortable......not having apnea would be great but it would leave neurological questions that have not quite so nice and life changing answers.

Anyway the tech never did come in an titrate Chris.  I asked how she did and the tech said that she was great.  I asked about the titration and she said that Chris did not have enough events to meet the criteria for a split study (20 events/hr for 2 hrs -- set by the insurance companies).  So I was actually happy that she was not titrated because that would mean that in the last 6 months that Chris's apnea had become much much worse.  I can deal with waiting for the results and doing another study for a full titration to make sure we get it right.

There is also good news.  Chris was very still when sleeping so the Neurontin is working for her RLS/PLMD (or so I think without the study results).  I am thinking that if there is another study and if she is still as still that I will finally be able to remove her rail from her bed....she would love to get rid of that.  The other good thing is that because they have the full night study that the pulmo will have the entire picture of Chris (he is reading the study) and we will know that the results are accurate.  He has concerns about the last lab having technical errors as well as there not being enough time between her surgery and her post surgery study.

I also have to say the Tech was great   and the facility was very nice, but a little cold for me...next time I will wear pants instead of shorts for while I am just watching Chris.  The Tech thought Chris was the greatest.  Chris beat me 5 time out of 7 at UNO while getting wired up.  I would be happy to go back to that location and have that tech again (but it would be nice if we did not have to).

Hi everyone,

I'm pretty dissapointed that we have not heard anything from the sleep study yet.  I called the office at the end of last week and they said they would call and set up an apt to go over the results.  They never called and when I called today I learned that the Dr is on vaccation for the week, so we won't know anything until next Thursday when we go in for her next asthma apt.

I'm really frustrated because I just want to know if she has apnea or not.  Until we met this doc the diagnosis was not in question.  Now I am just confused, if she does not have apnea then what is going on??? I wonder if the cpap is inducing apnea, but some nights she will only have 4 apneas and on other nights she will have 22 -- that is with the same pressure.  When there was the mistake with the pressure and it was set at 4 instead of 8, there was little difference in the readings.  So...am I causing a problem by using the cpap or is the pressure not high enough to prevent the problem???  I wish I knew, but will have to wait another two weeks to find out.

Oh well, we have been waiting 9 months since her diagnosis, what is a few more weeks for confirmation and then another month for a final (temporary) titration......On the positive side, waiting 9 months has allowed us to find out other fascinating things about Chris that would have negatively effected her apnea treatment (assuming she still has apnea).


Chris found the nose only mask that she was given to begin with.  She has decided that she likes it better than the full face mask.  She put it on and just started laughing because it felt so funny to have the air directly in her nose.  She was laughing so hard she could not talk.  I told her she could wear the mask, but if she had too many leaks I would have to trade it for the ff mask.  She is doing much better with the mask now than she did to start with.  She is able to keep her mouth mostly shut so her leak rate is low and it has not negatively impacted her weekly AHI.  

Susanne and the laughing mini-hosehead Christina  4 1/2 months on cpap and a lifetime to go????????

I can't believe it.  Why have they not done a titration??  When will you ever find adequate care for Chris??  How frustrating this must be.  I'm frustrated and I'm not even her mother!!

Vicki


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

Hi Vicky,

Frustration hardly describes how I feel right about now.  I think I passed that part many moons ago.  Part of the problem is that Chris has no obvious risk factors for apnea (other than the adenoids that are gone).  For some reason the pedi-pulmo-sleep doc is not convinced that she has apnea.  She does not wet the bed, sweat a lot when sleeping (like I really go in every night to see if she is sweaty.....we live in a rather hot area and our house is always hot - sweating is nothing unusual here), she does not have behavior disturbances, her RLS/PLMD is being treated so she does not kick a lot anymore, she does not wake up or have nightmares and she is not overweight (7 3/4 years old and 49 lb)......she just doesn't breath properly.

Part of the lack of titration is the fault of the insurance industry.  Apparently the orders for her last sleep study said to do a split study.  The problem is that the insurance company sets the guidelines for the studies and she would have needed to have 20 events/hr during the first 2 hrs of the study for them to pay for a split study.  I suppose the insurance industry does not have a separate set of guidelines for kids even though the allowed AHI is so much lower for children.  In order for her to have qualified for the titration that night she would have had to have been worse than she was on her second sleep study (AHI of 18 prior to surgery), and much worse than the post surgery AHI of 8.

I like the doc very much, and I think he knows his stuff.  He just does not want to take another docs word about Chris having apnea.  I'm glad he wants to investigate, but this is dragging on and on and on.  I have the paperwork to send in to get Chris a medic alert bracelet, but I don't want them to list apnea as the primary medical concern if she does not have it. She is very interested in getting her bracelet (she picked out the orange logo).   I very much want to get this issue settled for the time being (I know that apnea can disapear or get worse as kids grow so this will be a longtime frustration), especially before school starts again.

In the end it will all work out for the best, I guess I just need another lesson in patience.

Susanne and my goofy mini-hosehead Chris

No he did not say "no more jumping on the bed"......

Are you sitting down (probably but I just thought I would check and see)......The doctor said that Chris does not have apnea.

Yes that is right after 1500 hours on cpap, and 2 post surgery sleep studies the official conclusion is that Chris does not have obstructive sleep apnea, nor central or even hypopneas ......OK 1 obstructive event during the study.

Here is what we were told.  Her last study was done in a nice new lab run by the pulmo (#3 by the way).  He is board certified in pedi-sleep and pedi-pulmo so he should know his stuff.  Anyway he said that when he read her study ***the entire study not just a summary or the tech's scoring notes*** it looked like her AHI was 1.8-------However he decided to take another look at the entire study more carefully and realized that she only had 1 obstructive event, her lowest Oxygen was 94% and that the real problem was her legs.  We knew she has RLS/PLMD but we thought the medication (neurontin) was controlling it.  Apparently not completely her leg movements were 8/hr....I personally think they would have been much higher but the room was cold and they had a number of heavy blankets on the bed, Chris snuggled in and did not move all night.

Now you are probably wondering how she was misdiagnosed for 5 months (I know I was).  What we were told was that childrens sleep studies are harder to read than adults.  The changes in them can be more subtle.  We were also told that there may have been problems with the equipment, it may have been old and was not put on her by an expert in children (the tech had never done a child with adhesive allergies).  He also said that he did not know who read her other studies, the dr might just have looked at the tech's scoring and her neuro probably never recieved an actual copy of the tests--just a 1pg summary.  We also had to keep in mind that at the begining of this adventure that she had not beed diagnosed with asthma/reflux or food allergies, all of which play upon each other and all contributed to her apnea in one way or another.  Because she had the cpap we found out about these other issues that were not obvious to anyone, and yet negatively impacting her health.

So now you are wondering what we are going to do now....... Chris has been off her cpap for 1 week now.  She is very happy to skip the cpap, but she can't dive under the covers quite as well now.  She had trouble sleeping without the noise of the cpap so we had to go out and buy her a radio with nature sounds so she could go to sleep.  Did you know that the ocean sounds are quite similar to a cpap????  We know that now.  We are not at all mad at the doctors who gave us the wrong info, the cpap did not harm her in anyway and she had great fun with it.  I'm much happier that she was treated and we found out that it was not needed -- finding out later that she had been having breathing trouble and she was ignored would be far worse.

The pulmo is going to talk to the neuro and get something done about her legs.  Then because she has sleep issues she will continue to recieve sleep studies in the future so if the apnea is still actually there (and she was just having a great night) we will know.

Since she has been off the cpap she has been bouncing off the walls, she can't stop moving.  I think the cpap was helping with the RLS/PLMD because it seems like it is in full force right now.  She is either falling over sleepy or in constant motion.  I hope they get the meds correct for her before school starts.

Anyway that is Christina's story.  The moral of the story is :  Get enough opinoins from doctors who know what they are doing so you get the correct treatment and are satisfied with the answers you are receiving, and follow your heart-- you know your child best. That's it for now, I know where to come if this issue returns,  I'll miss y'all.  

Happy papping and sleep well

Susanne and her mini-EX-hosehead Christina
PS I am still quite happy to share what we have learned, just send me an note.

Wow, Suzanne, we will miss you around here! I am happy thought that you finally got a correct diagnosis. Hannah is still dealing with RLS/PLMD also and it is frustrating.Stay tough and hope you get some answers on that issue. Best of luck.


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

Hi everyone .  Did you miss us?  Chris is back .

I went out to check my phone today and had a call from our pulmo/sleep doc.  When I called him back he said that he had been reviewing Chris' old sleep study from 07 and decided that she does indeed have sleep apnea and that she needs the cpap .

As a refresher and update.....Chris has RLS/PLMD/reflux/asthma/and other really fun stuff going on.  She saw the neuro for her rls/plmd a month ago and he increased her Neurontin from 300 mg to 900mg per night to calm her legs down.  Unfortunately at 90mg Chris develops halucinations   so that med is no longer an option for her (the neuro has never had a child do that on neurontin especially after taking it for a year at a lower does.  His comment was "she has some weird wiring")  So she was off neurontin for a week during which time she became a very dangerous sleeper.  She would kick, flip, flop and snore a little bit....she was also tired by 6:00.  So for the last 3 nights she has been on .125 of Mirapex.  Mirapex has not caused any major problems as far as reactions, but she has been even more dangerous of a sleeper with it than without.  She is still on it because her body might just need time to adjust to the med so it can work.  

I told the pulmo/sleep doc the most recent story and he says to try cpap for 2 weeks with Mirapex and see if it helps.  Then drop the cpap and see if it is still working.  I am inclined to drop the Mirapex and just go to cpap and see if that helps and then add mirapex to see what happens.

Anyway tomorrow we are getting the cpap set on auto from 4-10cm.  We don't know the  proper pressure because she was never titrated and I was not comfortable leaving the machine on 8.  I told Chris about this after school today and she is excited.  She likes her cpap   and is happy to have it again.

So this is the next chapter of the Chris story.....more to come I am sure.

tatamom, I just read all 5 pages of your dd's saga! What a journey!!! You are a great mom, and your dd is a wonderful little girl. I love her positive attitude about it all.

I think the real issue is that when there is a mixed bag of medical issues going on, it is somehow all related and it takes sooo long for the docs to figure it out and treat each one. And no one knows how the treatment for one will affect the symptoms of the other.

I can so relate to the different drs saying different things, and some being willing to see the whole child and others not wanting you to mess up their preconceived thinking pattern. I am currently going through this with my son. After nearly a year, we are finally narrowing down a problem that began with him passing out. We were told seizure disorder, no sleep apnea, then sleep apnea and no seizure disorder, and now finally sleep apnea, delayed sleep phase syndrome and dysautonomia, a fancy word for autonomic nervous system dysfunction. He was another child that no one thought would have sleep apnea It has been a crazy ride (I know you can understand) and we may not be done. We are on our way to a GI dr today due to gastro issues (I suspect food allergies)  I like how you said once, only one life-threatening disoder/child. Wouldn't that be so nice?

I will keep reading your post, but I wanted to ask you a question. You have done a great deal of research. Can you post some of your sources for AHI numbers for children? I will be addressing my ds' school soon, and all the ammo I can use to educate them about sleep apnea and its affects on children and learning would be greatly appreciated. You had a dr. mention AHI #s and ADHD. What is that all about?

Thanks, and take care,

Judi

Hi Suzanne, so glad to see you back! Sorry Chris is still having issues though. Fortunately she is a trooper about it though. I really hope that the CPAP use helps. Hannah is doing great with hers.We even had a super great report card recently that reflects her use. I really hope the CPAP will help her rls/plmd. You must be so frustrated.


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