Hello, I am hoping someone can explain the sleep study report to me.  But first a little history.  My daughter has not had a good nights sleep since she has been born.  At first it was attributed to Gerd.  After that it was attributed to my long term breast feeding and co-sleeping.  I was told that she was restless and waking up in the night to eat and that when I stopped breastfeeding and put her in her own bed, her sleep would improve.  Well, I stopped breastfeeding 8 months ago and she still does not sleep well.  She is still co-sleeping.  I just feel more comfortable having her next to me when she seems to have such trouble breathing at night.

Anyway, 3 months ago she started snoring very loudly adding another complaint to her sleeping issues.  She seemed to have pauses between breaths as well.  I took her to the pediatrician who referred us to the ENT.  He had us get a singe lateral film of her neck which showed prominent enlargement of the adenoidal soft tissue with narrowing of the nasopharyngeal airway.  It stated that their may be tonsillar enlargement as well, but the ENT said he did not see any tonsil enlargement upon physical examination.

He told be that she seemed fine and recommended that we take the "wait and see if she grows into her adenoids" approach because of her age. I was fine with that but concerned with the possibilitiy of sleep apnea so I requested a sleep study.

We went a couple of weeks ago and I thought it went well.  I even commented to the tech that I wasn't sure they were going to find anything because she seemed to sleep better that night.   I just got the results back and had my follow-up with the ENT.  He read a couple statements off the sleep report and told me to decide whether or not we wanted the adenoidectomy.  I have to say that I was a little shocked because I thought he was going to tell that the report showed that their were no disturbances as all especially since I thought she slept pretty good that night.  I am now doubting my own abilities to discern whether or not something is wrong.  If I thought that night seemed pretty good and in fact it showed that she was having some trouble, what in the world is happening when even I think she is having a bad night?

Please help me make a decision as to how to proceed.  She is two years old and the thought of surgery is very daunting.  Most of the sites I have seen discussed children 4 and up.

Below you will find the results of her study.  Please take a look and let me know what the information means to you.  The ENT didn't really explain anything to me and my pediatrician basically wants to stay out of it.  I don't know if that is a territory issue or if she really is at a loss as to what to tell me.  Either way, I wish she would just say.  Most of her apneas were deemed central and I have seen some postings on Chiari.  I realize that is rare but of course my mind is racing.  My daughter is in Occupational Therapy for Sensory Integration and low muscle tone.  I want to know if I should see a neurologist or another doctor for a second opinion or what.  

Any help will be greatly appreciated!  

Thank you,

Jennifer


Sleep study data is as follows:


Study Results:

Assessment:
Sleep disordered breathing. Although the study proved challenging due to limitations in detecting air-flow.   the patient did demonstrate loud snoring as well as episodic desaturation suggesting significant sleep disordered breathing.

sleep data:
total sleep time 404.9 min. (6.5 hours)
wake/movement time: 41.9 min

respiratory data:[b]
total apneic events: 15
fully obstructive: 1
Central - single event: 8
Mixed(periodic breathing): 2
Total hypopneic episodes: 4

Total apneic time: 2.4 min.
Total time in periodic breathing 3.0 min.

AHI: 2.2
average apnea duration 8.6 sec.
longest apnea (type): central at 14.3 sec.


[b]Oximetry summary:
average oxygen saturation: 93.3%
lowest oxygen saturation:  83%
time w/ saturations <90%: 0.3%

Technician comments
The patient displayed very rare obstructive respiratory events.  Brief episoded of periodic breathing were observed in third REM period.  Intermittent varying intensity snore (mild to loud) with heavy breathing, independent of body position.

[/b]

Hi Jayers,

My 7yo daughter is waiting for her c-pap titration.  She has had breathing trouble since she was very small.  It started with her being a preemie and having reflux.  She has always been a very active sleeper----I describe sharing space with her like sleeping with a rugby player--and a loud snorer.  When she was small I had no Idea that kids could have apnea, other than the preemie sort.

I am learning (I have been learning about this since Oct.) that sleep apnea is a grey area for drs.  There is a pediatric board certified sleep specalist, but I don't think there are very many of these drs out there....in texas from Dallas to the Boarder I think there are 2.  Christina is the only pediatric OSA patient our pcp is treating, so he doesn't know anything about this.  I am learning (by experience) that her neurologist probably does not have any OSA patients that have not been cured with surgery (she got better, but still has problems).....I am thinking this because the only sleep lab our neuro uses has not titrated a child for c-pap in recent memory.....they don't even know how to prepare a child for c-pap or have the proper size masks, etc....I am learning all I can about OSA, because at this point in time I don't feel I can trust the medical community to always know what is best for my less than typical child.  But my pcp is willing to listen and learn, the neuro will learn to listen to me and the sleep lab will know what to do next time they have a child for a c-pap, life is a learning game and Chris is forcing a lot of people to play catch up.

If I was in you position I would talk to a pediatric neurologist or a pediatric pulmonologist.  Has your daughter ever had an MRI done of her head or back?  If she has I believe it would show a chari malformation, but I am not sure.    I know Chris's spine MRI said there was none and she has not had a head MRI yet (she has other issues that require CT/MRI testing).  I wish I could tell you what you should do other than keep talking to drs until you find one that understands the issues and is willing to help and that you feel comfortable working with.  Don't give up, you are doing a great job.  You do know what is best for your child and are being the best mom she could ever hope for.

Susan

Hi Jennifer.  I'm sorry to hear of the problems with your daughter.  You and I seem to be in the same boat.  My son is 18 months old and we've done 2 sleep studies.  After the first one, we had his extremely large tonsils and adenoids removed.  That did improve his breathing at night.  He used to be very noisy, not snoring, but just a loud breather.  However, I still noticed him not breathing at times so we did another sleep study focusing on central sleep apnea.  It came back with 4 episodes in 3.8 hours but the obstructive apneas were now gone.  Our ENT has now referred us to a pediatric neurologist who specializes in sleep disorders.  We are anxiously awaiting that appointment in March.  

You and your daughter would probably benefit from seeing a pediatric neurologist also.  I'm kind of surprised you haven't been referred to one yet.  As far as removing her adenoids go, I can't say whether that's the right move or not.  I know it helped my child, but his adenoids and tonsils were incredibly large.  He was only 14 months at the time which is pretty young.  I know I'm not much help as I'm very concerned over the central apneas at this point.  It was just nice to see someone else kind of experiencing the same thing with a child around the same age.

Emerson also has reflux as a result of being born with esophageal atresia and a TE Fistula.  This is where his esophagus didn't go all the way to his stomach and parts of it attached to his trachea instead.  The T&A was actually his 5th surgery in his short little life.  Anyways, take care and please keep us posted.

Sara

Hi Jennifer.  I'm sorry to hear of the problems with your daughter.  You and I seem to be in the same boat.  My son is 18 months old and we've done 2 sleep studies.  After the first one, we had his extremely large tonsils and adenoids removed.  That did improve his breathing at night.  He used to be very noisy, not snoring, but just a loud breather.  However, I still noticed him not breathing at times so we did another sleep study focusing on central sleep apnea.  It came back with 4 episodes in 3.8 hours but the obstructive apneas were now gone.  Our ENT has now referred us to a pediatric neurologist who specializes in sleep disorders.  We are anxiously awaiting that appointment in March.  

You and your daughter would probably benefit from seeing a pediatric neurologist also.  I'm kind of surprised you haven't been referred to one yet.  As far as removing her adenoids go, I can't say whether that's the right move or not.  I know it helped my child, but his adenoids and tonsils were incredibly large.  He was only 14 months at the time which is pretty young.  I know I'm not much help as I'm very concerned over the central apneas at this point.  It was just nice to see someone else kind of experiencing the same thing with a child around the same age.

Emerson also has reflux as a result of being born with esophageal atresia and a TE Fistula.  This is where his esophagus didn't go all the way to his stomach and parts of it attached to his trachea instead.  The T&A was actually his 5th surgery in his short little life.  Anyways, take care and please keep us posted.

Sara