Hey everyone.  I'm new to this forum.  Found it by chance on line and I think I've found more helpful information here than anywhere else.  At least it's information that feels a little more at my level.  
My 5 year old son underwent a polysonogram about a week ago and we just received results from the doctor yesterday.  We were concerned about sleep apnea last fall and questioned his regular pediatrician who at the time attributed it to swollen throat due to a cold/virus.  
This year at his yearly/kindergarden exam, I metioned that I was still concerned as I noticed a few episodes of strange breathing and pausing of breath at times when he didn't have a cold.  We were referred to a very nice sleep specialists that actually specializes in child neurology as well as pedicatric sleep disorders.  We were lucky enough to live in the same area.  I've been told that there are not many sleep centers that specialize in pediatrics.   (?)
At any rate, she has told us that our son suffers from obstructive hypoventilation.  She said that all other measurements looked normal for him, but that he has excessive levels of carbon dioxide that he is not expelling when he exhales at night (?) (At least I THINK I understood her correctly)   He is scheduled to see an ENT next week.  She's told us that this particular ENT has worked with alot of children.  I was totally unaware of this type of condition in children and have been amazed at the information on line about how it so often goes undiagnosed in kids and the damage (wether repairable or not) that it can cause with respect to learning / memory.  My son also grinds his teeth HORRIBLY at night.  I've seen one reference somewhere that this could also be caused by sleep disorder.  Anyone know if that is true?  He's also very small.  at 5 years of age he is about 37 lbs.  lucky if he is 40" tall.  Has only now started wearing clothes that are normally for a 4 year old.  While I am only 5'2" and his dad isn't very tall either, I'm curious how much his small stature has to do with this disorder.  Any help  in layman's terms would be great!!  So glad I found this site!!

Hi Natesmom and Welcome!,

The technical term for night time teeth grinding is Bruxism.  It is a sleep disorder different than apnea.

You can read more about it at these sites which I found from a Google search.  There are a lot more sites.  Google with Bruxism or Teeth Grinding.

American Dental Association Teeth Grinding (Bruxism)

Bruxism/Teeth grinding-Mayo Clinic

Most sleep centers work with older kids/adults and so do not have the experience with little kids or the equipment to fit them.  That is why they said that there are not many sleep centers that are set up to test little kids.

Hypo just means below (as opposed to hyper which means above).  So hypoventilation means inadequate breathing.  One cause of hypoventilation is the brain not giving the signal to breath.  That is not the case with your son whose hypoventilation is obstructive, which is caused by a physical blockage.

In kids with physical blockages, it is common for them to be caused by enlarged tonsils and/or adeniods.  And, unlike in adults, a tonsillectomy has a very high success rate for curing this breathing disorder in children.  That is where the consultation to the ENT will be extremely helpful.  They will be able to tell you if they think your son's T&As might be causing the obstruction.  Obstructive apnea can have other causes as well and could be related to other internal throat structures.  Again, the ENT will be helpful.

You can request a copy of his sleep study and post it here in the "Sleep Studies" section where people can take a look a it.  The other parameter which is very important is the drop in oxygen levels that your son has during his sleep.  Normal levels are 95-99%  These drops in oxygen blood saturation (O2 Sat.) cause difficulties in concentration, focus and memory.  These effects usually reverse completely with CPAP therapy and adequate oxygenation.

Keep posting and let us know how it all turns out!

Vicki

Thanks for the quick reply Vicki!
I didn't receive a copy of the sleep study results.  I'm going to call and request them.  The doctor did say something about oxygen levels.  She explained results fairly extensivly (though a little too quickly for someone who doesnt' have knowledge of this sort of thing)
If memory serves me correctly, she said his "mean" average for oxygen intake fell at around 97%.  Said his only real issue seems to be with the expelling of carbon dioxide.  I THINK she said that it should be under 45 a majority of the time, though it could occasionally go above.  Nate's was over 45  approx 60% of the time.  Again, I could be off a little as I'm going by memory.  She did confirm in initial consultation that his t & A's wer very large.  She said it is common at his age and that many children grow into them, but that in some children, it is a physical obstruction that could be detrimental and needs to be addressed.  
Regarding learning / concentration / focus issues:  I've not received any complaints from his teacher as of yet, though I plan to bring this issue up with her at a parent teacher conference in two weeks so that she can watch for any changes should we have to proceed with surgery.  I know that he can become frustrated very easily and can be very crabby.  I always assumed that was his Daddy coming out in him    but now I wonder.

Hi Again Natesmom,

Funny how we lose our first names when we have kids.  I don't even know the real names of half my daughter's friends!  Your memory serves you well, the normal range for blood CO2 partial pressure is 35 - 45 mm Hg.  In normal-straight forward OSA, CO2 does build up during the apneic event and is one of the signals to the brain to take a breath.  However, in normal situations, when a breath is finally taken CO2 levels return to normal.

It seems as though your son's respiration is too depressed to adequately exchange the gases and it sounds like the docs. think it is caused by an obstruction.  In adults, continuous high levels of CO2 are seen in conditions like pneumonia, chronic obstructive pulmonary disease (COPD), and over-sedation from narcotics.  Since these are not the things going on with your son, it sounds like they are trying to determine the cause of his chronic hypoventilation.

The treatments would probably be the same, CPAP to keep his airway open or surgery to remove the obstruction.  You sound like you have good docs. who are very thorough.

Keep posting 'cause I want to know how that kiddo is doing!

Vicki



Last edited by Vicki on Wed Sep 20, 2006 7:33 pm; edited 1 time in total

Thanks again!  So glad I found this site.  Makes such a difference when someone writes it down in a way that's easy to understand. Will certainly accept any help/comments anyone is willing to give.

My son, 11 yo, recently had another sleep study and they have changed his diagnosis from moderate OSA to mild OSA with obstructive hypoventilation.  He already had is T&A out many years ago.  Are there any other treatments available besides cpap?  He is currently on c-flex but finding a mask that fits him the right way has been a problem.

Michelle :  )
Mommy to Alex (cleft lip/palate, asthma, OSA, TTD, mild hearing loss) and Ryan (LD)- 4/30/95
                Christopher (glaucoma, apraxia) - 11/22/01
CarePage: www.carepages.com   (CuttlersJourney)

Update on my son, Nate.  He visited an ENT last week.  He looked at his throat and the first thing he said was, "Has anyone talked to you about the size of his tonsils?"  I said that it wasn't until we went to the sleep specialist that we were told about the size of them.   I had to mentioned sleeping issues to his pediatrician twice, but he never mentioned the size of his tonsils.  We gave him copies of polysonogram results and after a short discussion and review of test results, he told us that sometimes with small children that have sleep issues and enlarged tonsils, there is a "grey area" where you try to decide if it's best to remove tonsils/adenoids or if you should wait a year or so and see if the child grows into them in the near future and not force an unnecessary surgery.  Between seeing Nate's tonsils, reviewing study results, and our conversation during exam, he felt that there really isn't much of a grey area in this case. They need to come out.  There were no "apnea" events during the polysonogram;  biggest issue was the low carbon dioxide output,  but he said that while the polysonograms are wonderful, there is still the fact that they are, to an extent, a "lab environment", are usually for one night only, and don't necessarily reflect the whole picture of what goes on in reality at home.  He felt that based on what he physically sees in the throat, what we told him, and the study results, he believes that Nate does indeed have some apnea events when sleeping.  We were very comfortable with this doctor.  Very kind, and kept asking if we had any questions.  His answers were pretty much identical to what I've read so far on the subject, right down to commenting on how they are trying to make pediatricians more aware of the possibilities of sleep disorders in children and that many doctors and parents just don't know to ask about it so don't be too hard on his pediatrician.
Surgury is scheduled for November 2nd.   I asked which "technique" he would be using and was told that he uses the "Harmonic scapel" method.  Can anyone give me any info on this procedure vs. others?
I was told that it would minimize bleeding and pain following surgery.  True?    Said to expect about a week of recovery time at home.
Sorry about writing a "book".  So much to say, so much to learn.  Thanks to anyone who can respond

Hi Natesmom!  We just came back from the dr's and were told 2 things I have never heard before.  Children such as mine who are not getting enough REM sleep due to apnea don't release enough growth hormone and therefore tend to be smaller.  The other thing was that children who have the high levels of CO2 may still have this during the day with negative effects on behavior.  This can be tested through blood work (serum bicarbonate test SP?).  Has anyone else heard about these 2 things?  Any info. would be helpful!!

Michelle :  )
Mommy to Alex (cleft lip/palate, asthma, OSA, TTD, mild hearing loss) and Ryan - 4/30/95
                Christopher (glaucoma, apraxia) - 11/22/01
CarePage: www.carepages.com   (CuttlersJourney)

Hi!  
I have read a few things about issues with behavior due to sleep disorders.  Many things I've read said that there is a correlation between sleep apnea and ADD/ADHD.  Not all of the time, but a lot of the time.  It said that many doctors don't think about sleep disorders contributing to behavior issues and that if more of them were aware, that it's possible that diagnosis of ADD and medication prescribed for it could change.  
His ENT specifically asked us about his behavior when we went for initial consult.  Said that even if you don't have major issues with behavior, we may still see a difference in it after the surgery.   I know that he can get VERY FRUSTRATED and he does so easily.  I am sometimes amazed at how wound up he can be for a child that doesn't seem to get a great deal of decent sleep (in my opinion anyway).  Though he has never been a child that sleeps for long periods of time.  When I used to read about how many hours infants sleep at certain ages, I used to laugh out loud because Nate NEVER slept as much as they said he would.
I've read about the growth hormone release as well.  My son is very very small for his age, so I'm curious to see if he shoots up any in the next 6 months or so.  Is your son small for his age?  Nate's surgery is scheduled for Nov 2nd.  Getting nervous about the whole thing.  
You mentioned previously that your sone has his tonsils out years ago but he had now been diagnosed with obstructive hypoventilation?  So did the surgery benefit him  at all?  Or have I misunderstood? What procedure did they use?  His ENT said they use the harmonic scaple method.  Have you heard of this?

Hi!  My son had his T&A when he was 2 1/2 years old (back in 98) so I don't really remember what  procedure they did.  If I find his record I will look it up and get back to you.  We did see a difference for a short period of time with his sleep.  He has always had a hard time falling asleep unless he is using his c-flex.  We haven't seen as much of a change in behavior as we thought we would.  He too gets frustrated so easily, even at 11.  His weight has always been just under the 5th % (born premature at 4lb. 3oz.).  He currently weighs 60 lb. on a good day!!      As for the obstructive hypoventilation, this is a new diagnosis and I am trying to figure it out and understand it.  We have never been told that this was a problem before.  He spent 61.3% of the night with EtCo2 levels greater than 45mmHg with a peak of 54.3.
My friends 5 year old son just had a T&A a couple of weeks ago.  She kept him medicated for a few days following it.  Lot's of love!!!  Good luck on Nov. 2nd.

Michelle :  )
Mommy to Alex (cleft lip/palate, asthma, OSA, TTD, mild hearing loss) and Ryan - 4/30/95
                Christopher (glaucoma, apraxia) - 11/22/01
CarePage: www.carepages.com   (CuttlersJourney)

Nate's CO2 levels were like that as well.  they said that they varied, but 60% of the time they were over 50. Regarding you just now finding out about it:   The Sleep specialist said that we used specializes in children.  We were lucky enough to have one that is local to our area as I'm told that there aren't many set up to test small children.  She told us that the CO2 levels  is something that a lot of places don't test for.  They test for it because it tends to happen more frequently in children which they do alot of work with.    In fact, she said that aside from his O2 levels, based on his polysonogram alone,  everything would appear to be close to normal aside from how often his sleep is disturbed.  The CO2 level is what clued them in to the hypoventilation.  Did your son have CO2 levels checked previously to this latest study?  Possibly they didn't check for CO2 levels back in 98 so missed it back then.  Do you think      Just throwing out a possibility
Nate has also always been in the 5th percentile for height and weight.  At 5-1/2 yrs old, he weighs in at a whopping 34 lbs. soaking wet.
Thanks for the good wishes.  Hope it goes well. Knowing my luck, he'll get scared, I'll get upset, and before you know it I'll be promising him that hamster I've managed to hold out on for the last 6 months!    Will update on how it all goes.

Just put a call into the lab who did previous sleep studies.  Hopefully will hear back soon.  Where do you live that you have a center that deals with pediatric sleep apnea.  They are very hard to find.  We think we found one about 1 1/2 hours away.  That's who did the most recent sleep study.  Has your son ever had a surgery before?  If not, and you don't get too weak in the knee with medical stuff, I highly recommend you walk him to the OR and stay with him until he is out.  I have been doing that with Alex since his first surgery at 2 months ( in addition to my youngest when he has had surgery).  I really believe it cuts down on the anxiety for the kids.  Good luck on the hamster thing.  We currently have 4 gerbils!!!  At one time we had 8 due to babies being born :  ), this happened 2 times.  You would think we would learn!!

Michelle :  )
Mommy to Alex (cleft lip/palate, asthma, OSA, TTD, mild hearing loss) and Ryan - 4/30/95
                Christopher (glaucoma, apraxia) - 11/22/01
CarePage: www.carepages.com   (CuttlersJourney)

We live in Rockford, Illinois.  Dr. Marabella Alhambra. (SP?)  She used to specialize in Pediatric Neurology, but has since focused more on Sleep Disorders.  Will look it up, but I think I spelled it correctly.  You should be able to find them on the web. I know there is a website for the sleep center we went to and that she's the main (only?) physician there.
He's had one minor surgery when he was about 8 months old. Unrelated to this.  Medical aspect doesn't make me weak in the knees.  It's that whole mommy/child thing.  When you know it's for the best, but everything runs thru your mind and you want so badly to take away the fears from them.  Worried to death about what can go wrong.  I'm horrible that way.  He's my only child. A gift from God after many prayers and I'm very over-protective.  Freely admit that.  Poor boy is lucky I let him eat with a fork
If they'll let me, I'll certainly stay with him until he goes to sleep.  That would be great.

I think we are all overprotective of our children, especially when they are struggling with things!  I think that is why I feel I am always looking to educate myself regarding my children's "issues".  I do believe it helps me to be a better advocate for them.

Re: CO2:  Previous lab did not do CO2 levels because they didn't specialize in children!!  So we have nothing to compare.  My question still remains, I think I asked this before, can the high levels of CO2 remain in the system during the day?  They are recommending a test for this but I haven't seen any information supporting the need to  him through more testing.  Anyone know anything about this?

putMichelle :  )
Mommy to Alex (cleft lip/palate, asthma, OSA, TTD, mild hearing loss) and Ryan - 4/30/95
                Christopher (glaucoma, apraxia) - 11/22/01
CarePage: www.carepages.com   (CuttlersJourney)

I only know that they say that the fact that the CO2 stays in the system, (for however long) can have an effect on other things such as behavior, moods, ability to focus, and memory.  Don't remember if his doc ever said anything about how long it stays in system.  However, I just phoned my son's sleep specialists's office to try and find out for you.  She is out of office until Monday.  They said that they would ask her on Monday and phone me at work and let me know what she says.
Hopefully I can help you get an answer to your question.  Nate sees his ENT for pre-op testing on Monday morning.  I'll ask them too, though I don't know if they can tell me or not.
Will let you know what I find out.