So glad I found this board.  My son Jake has been diagnosed with severe OSA since May 25, 07.  He has had two sleep studies done and then on June 26 we had a T&A done.  The dr said that his adenoids were huge blocking his airway and that his tonsils were to quote him "disappointingly little, for what he hoped to find".  He was hoping the his tonsils were as big as his adenoids so as to explain his sleep apnea problems.  Anyway we had both tonsils and adenoids taken out.  Jake has had his cpap for two weeks before his surgery.  He is still sleeping with his cpap.  We go back to the dr for his one month checkup after surgery Monday.  The dr wanted to wait until all the swelling from the surgery had gone down and then reevaluate him.  He did say that we would be going back for another sleep study after the surgery to see if this helped his sleep apnea.  Jake is getting better about sleeping with his mask.  Keep in mind he just turned 6 two weeks ago.  Some nights he makes it all the way through and takes his mask off himself in the morning other nights I hear him on the baby monitor and he has thrashed around so much he has knocked the mask off or becomes tangled in the hose.  Some nights I can get the mask back on and some nights he just cries and will not let me put his mask back on, keep in mind that he is not fully awake during these periods.  Anyway Jake has been a snorer since he was a little baby.  Sleeping with his mouth wide open.  We have a strong family history of sleep apnea.  He is currently on Flonase, Singular, Zyrtec and a cream for eczema.  From age 4 months to age 2 he was on breathing treatments to control wheezing.  I was told the eczema can come from people that have asthma or breathing type problems.  He has been taking allergy medicines since he was a baby.  Anyway sorry to ramble on but it is so nice to be able to post to parents who are going thru the same thing.  Hopefully this will be the last surgery for Jake for a while.  Last year he had surgery on his eyes to correct amblyopia (lazy eye), and he had tube in his ears when he was 9 months old.  I will definately be checking back with this board there are a lot of knowledgeable parents here.

Best wishes for everyone,
Jennifer

Hi Jennifer, so glad you are here!! I am Heather, mom to Hannah who is eight. She has been on CPAP for about three months now. She had the T&A surgery when she was five but her sleep apnea is back and we found ourselves back to square one. Hannah is doing well with CPAP but I still find the same thing-sometimes she still rips the mask off her face and there is no way she will put it back on. I think it takes time. It sounds like your son is doing great with adjusting. Try not to get discouraged, it is a adjustment.I know what you mean about the surgery and hoping this is it- Hannah has had four including open heart surgery.Stick around, I am sure we can learn a lot from each other!


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

Thanks Heather, for the encouraging words.  It's nice to hear from someone else going through this.  It seems pretty interesting to me while reading these posts that most kids have some other problems besides the sleep apnea.  I try to take it one day at a time with Jake.  Here lately we have been having a problem with wetting the bed.  Not sure why it is coming back now when he went for so long without wetting the bed.

jgiles wrote:

Thanks Heather, for the encouraging words.  It's nice to hear from someone else going through this.  It seems pretty interesting to me while reading these posts that most kids have some other problems besides the sleep apnea.  I try to take it one day at a time with Jake.  Here lately we have been having a problem with wetting the bed.  Not sure why it is coming back now when he went for so long without wetting the bed.

Not that I have children, but the bed wetting could be due to stress.  I was just diagnosed with sleep apnea, and I also have colitis and spastic colon.  The first few days on CPAP, I also began having a problem with both.  It's over with now, thank goodness.

Thanks for the suggestion Jeanie.  We have a follow up appointment on Monday with the ENT so I will mention that his bed wetting has started again.  It is just frustrating since he has gone for months without wetting the bed and has done it for the past three nights even though I make sure he uses the bathroom right before bed.

That is actually a side effect of sleep apnea. Hannah is having the same issue too, after being night potty trained for some time. I am not sure if I understand it completly but I think I read that apneas cause stress on the major organs, including the kidneys and they produce more urine. It is something that is frustrating but more easy to deal with knowing there is a medical cause for it. We started putting her in a goodnights brand pull up at night and that helps.I am hoping in time that it will disapate with treatment.It might be worth mentioning to the ENT.


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

Heather, I really hate to put him back in pull ups but I guess if that helps keep him from wetting his bed then I guess it is worth a try.  Fortunately or unfortunately Jake weighs only 39 lbs so he can still fit in a pull up.  The more I learn about apnea the more worried I become.  I was reading somewhere earlier today that sleep apnea in children can cause them to be slow to gain weight and grow.  Has anyone else heard of this?  The reason I ask is that I by no means am a short person (5'8") and his father is 6'1".  We are certainly not underweight people either.  Jake tops out right now at 3'6".  Anyway thanks for the advice and I will definately talk with his ENT.

Jennifer

The tech that did my son's sleep study mentioned something to me about how lack of oxygen (from the apnea) causes the body to produce more urine.

Funny enough, Caden never wet the bed until he started snoring.

I'm new to sleep apnea, too and I've been doing a lot of research, the more I learn the more I fear-but I'm a gotta know kind of person, but the whole thing is scaring the !@#! out of me. My son is 5 and right now we are waiting for the results of his first sleep study. About the delayed growth- I've read the same thing. My son is on the small side, too, but me and my husband are small framed people. Seems like (and don't quote me on this) I read somewhere today that the reason for the stunt in growth has to do with the disruption in hormones that are released when children sleep. I'll try to find where I read that and post a link to it later, it may have been on this site somewhere.

Thanks any info that I can get would be greatly appreciated.  I to have to know what we are facing.  I don't like being in the dark.  Thank you for everyone that has responded with info for me I am so grateful.

Just discovered this section of the forum so wanted to post a comment.  Our son Dylan age 8 was just recently diagnosed with sleep apnea.  We have been on CPAP for 2 weeks now and are seeing positive changes, however never as fast as you would like.    He has been on allergy meds/antibiotics since the age of 2weeks.  He was definatively diagnosed with allergies at age 2.  We've tried multiple allergy meds, etc.  He had a tonsillectomy/adenoids removed at age 3.5yrs, on day 6 post op he ended up with a bleeder and lost a ton of blood and we were close to losing him.  He as well has always snored, before and after the surgeries.  And yet snores today, only when he doesn't wear his CPAP.  Because I went into respiratory medicine as a profession it has allowed me great resources to learn a lot about a lot of things outside of my specialty.  Dylan was allergy skin tested at age 4.  We began 2 allergy shots once a week for approx. 2years, then went to 2 shots everyother week for approx. 1.5 years and then backed off to 2 shots once a month for 6 months.  I am happy to say that we just ended a 4yr stint of allergy shots.  And believe me they made all the difference in the world.  Our allergist said that allergies, asthma, and eczema all go hand in hand, if you have one you'll prob. get 2, if you have 2, you'll prob. get the third.  I can say we've have been blessed to at one time or another have all 3.  The biggest prob. being the allergies.  I have learned since our diagnosis of sleep apnea how even more importantly it will be to keep his allergies in check, which I feel we are very on top of anyway.  So how did we decide to investigate a sleep disorder, it's ironic that my husband as well has medical training and one day in the car we looked at each other and went I bet he has a sleep disorder!!!  And guess what he does.  I am so motivated to learn more and more everyday from each and everyone on this forum.

Hi Jennifer! Your post brought back so many memories of the early days with my child.  I have triplets, born at 27 weeks and we have struggled with so many of the asthma, allergy issues from day one.  My daughter has worn cpap since she was 4y.  Unfortunately, her tonsils and adenoids are not enlarged at all and they really don't know what is the cause of her apnea. They always believed it was because of her paralyzed vocal cord obstructing her airway, but now that we know she still apneas at 20+ pressure, they are at a loss to explain.  I hope that you find his apnea resolves itself after he fully recovers from the T&A surgery.  I wanted to relate a story that might help explain the bedwetting.   My daughter's first night on cpap was when she was 4 years old - long since potty trained.  On the very first night of her cpap, I went to her room in the middle of the night to check on her and cover her up.  When I pulled the covers over her, I realized that she had a verrrrrrrry large "poop" in her pants.  I was stunned and dismayed to think that she had soiled herself in her sleep.  We tried to wake her to get her cleaned up, but she was so groggy that it was like moving the dead.  Anyway, we got her cleaned up and back to bed.  The next day her pulmo doc called to ask how it went the first night.  I said, "she didn't have any problems with the mask, but she had a GIANT BM in her sleep... that's not good."  And this is what the doctor said: "On the contrary... that is SO good.  Your daughter had the first "real" night of sleep of her life.  The machine allowed her to fall into such a deep, restful sleep that she didn't even wake for the BM."   He explained it thusly: her body wouldn't "let" her fall deep into sleep with the apnea because it's a self-protection... so even though it always appeared that she was sleeping through the night, she was never getting a deep, restful sleep - until CPAP.   So, even though the bedwetting may seem problematic, take comfort in knowing that your son is finally getting the deep sleep his little body so desperately needed!  Our solution has been to minimize beverages after 6pm and make sure they go potty immediately before getting into bed.  If we forget to make her go potty,  she WILL have an accident because she is sleeping so soundly now that she has the machine.  

Now, about the growth part.  I have triplets.  My daughter (on cpap) weighed 1# 8oz at birth.  The boys were 1#11oz and 1#15oz.  My daughter was always teeny tiny.  Guess what - she is about 4 inches taller than both her brothers now.  Her doctor explained that kids with breathing difficulties (she also has asthma) burn many more calories just to BREATHE.  So her caloric requirements are so much higher than her brothers.  She eats like a horse now -- much more than the boys, but she is still thin (weighs 45lbs) and likely always will be because she expends so much energy just to breathe.   But she is taller than the boys - and that's probably a result of her increased calories and the cpap.  We make sure to feed her lots and lots of high-cal foods just to mitigate the effects of her calorie burning.  I wish I could eat like she does!