My son had a sleep study 2 years ago, it showed he had obstruction and some central apnea. They took out his large tonsils and adenoids. He slept good for a short while but soon was back to sitting, and changing postions all night, his favorite is bending forward in half or to the right or left or hands over head. Took two more years to get in to see a neuro. Had second sleep study done, just got the results back and it shows no obstructions and no central ( does central just go away?) showed slight snoring, only 9% REM. They are at a loss as to why he is not getting REM, so sending him now to get an EEG and blood work. The last blood work we took him in for( to check for restless  leg) showed low Ferritin and so they put him on Iron.
I just want this to go away and have my son for once in his life and have a good life with out being so tired. Does anyone have any info for me? The only meds he is on are, just started the iron, zyertec some times, and myrlax some times for constipation, and singular some times. He is not hyper or have bad behaviors, he just seems to get tired easy and wants to lay down in the after noon at school. This is his first year to be full day at school and it makes him so tired. For the first time since full day school started is he going to bed right away. I dont let him nap anymore since he has to get up at 6:30 to be at school at 7:30, he used to not fall to sleep for hours and hours now he goes to sleep right away and for the first time in his life early around 8pm. But, with the moving and sitting and lack of REM. does anyone know if the slow release meletonin would work for him to keep him asleep? Thanks

Hi Bev, welcome!! I wish I had some advice for you but I am not sure what is going on with your son. I have a daughter who is nine years old and has DS too. She has been on CPAP for sleep apnea for about four months now. It has done wonders for her. As for the melatonin , I have several friends who use it with their kids with DS and it does work well. I would check with the DR first though to make sure of no drug interactions and for correct doseage.As for the moving around in his sleep, did he do this after his T&A surgery?? The reason I ask is that even though Hannah has been on CPAP she still moves around a lot at night.Her Dr's are a little stumped at why she does this as her apnea is controlled well. Some of the tiredness might just be getting used to the new long day schedule. Boy, wish I could help but just wanted to let you know you are not alone. Hopefully maybe some of the others will have some good advice for you.


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

Thanks Heather. I did ask the dr about the melatonin and he said, it was fine to try and see if it worked. So, far it has not with a few nights of giving it to him so i am on the hunt for the slow release kind since, he is having trouble with staying a sleep. He has alwasy done the sitting up and moving around in bed since birth I think. That is good that Hannah takes to the machine well. If Noah has to do the machine I hope he can adjust as well. It seemed like the dr didnt want to give it to him, but I said, I would try anything to get him a good nights rest. I too need some rest : ) I hope we can find some answers. Ill keep you posted.

Hi,
My son is 24 yrs now, but because his cognitive level is quite low I check the peds. section as well as the adult.  Your post got my attention because of how you described his movement at night, including sitting. My son has always done that too!  I've never heard anybody else doing that.

He has not had a sleep study yet, but the doc has finally ordered one.  He will have a hard time I know---will want to pull off the wires, but I want to give it a try if it can give us some answers.  Did your kids have difficulty tolerating the wires?  got any tricks you can share w/me?

re; your son's fatigue level even though no apnea----has he ever had heart problems?  The sleep study includes some heart info from what I understand---was that info normal for him?  Not trying to scare you, but I know heart probs. can occur w/down's and that one symptom is fatigue and weakness. -- My son has a slow heart rate during sleep according to the overnight oxometry and I am wondering how much that contributes to his datime fatigue.

Does your son have sensory integration issues?  I know that sleep difficulties often go along with that.  My son has always had interrupted sleep and insomnia which I attribute to his sensory intergration dysfunction.

I know it's hard to have to function when repeatedly not getting enough sleep.  Hang in there.

Thanks for your post. you will have to let me know how your sons sleep study goes. My son has had two both were difficult to get all the wires on but we hung in there and it got done. This last one he cried and cried but we stuck it out and it got done. He didnt try to pull them off.He had such a long day and was so tired that by the time they let us go to bed it was 10 and he was out in 10 min. So, he never bothered with the wires or pulled them off. The only thing we asked was that they put the nose wires in after he was alseep and they did come in later once he was sleeping and I thought that would wake him but it did not. He is such a light sleeper at home but since he was so wore out from the long day and the hour of crying he never woke up. Get your son up early that morning and keep him nice and busy so he is so tired that night. I hope it all goes well and that he is able to get through the test. The Tech told us in the morning that when he saw my son had DS he thought he would be going home early since most will pull off the wires and the parents cant take all the crying. But, I just wanted it done and to get to the bottom of why he is not resting.

He was born with two holes one closed and the other we are waiting on. We go in Dec. to check on that. They have said, they would do surgery down the road if it doesnt close on its own but acted like not a big deal for now. The last time we went to see cardio was two years ago. I know not getting rest is bad on his little body.

He has some sensory issues. most have gotten better with age. He dislikes loud noises or places. He doesnt like to get his hands dirty or sticky. doesnt like for his shirt to get wet. Likes his shoes off as soon as he gets home. Likes to rub his feet on something a few times when falling off to sleep. Doest like his head touched, he will let me rub his head and brush his hair, but has a melt down, crying fit when he gets his hair cut. he wont touch a drinking glass if it is cold or wet with moisture.

I will keep you posted the next time we see the dr. Let me know how your son does as well.

Hello Embrtopathy, Does your on have an interest in tv at all?? You may want to call the sleep lab and see if they have a tv/dvd combo. When my daughter had her studies done they had the tv hooked up and she was able to watch her favorite movies while they did the wires. Maybe it might distract him a bit. You could always bring a portable DVD player with you. My diaghter was eight when they did hers. She was not happy about the wires but she tolerated them very well.  My daughter had open heart surgery at seven weeks old. She has a slight leftover leakage from her mitral valve. Fortunately we follow her pretty closely with her cardiologist and so far her apnea has not affected her heart.


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

HI--thanks for your replies.  It's funny that I feel more 'understood' by you than by adults, or even parents of teens....my son's cognitive level is preschool age so I guess that's why....also the sensory issues.

Anyways I meant to tell you about the meds you mentioned:  both singular and zyrtec increase my son's sleep and daytime fatigue; miralax does not.  Melatonin actually kept him awake.  I think it's very individual and the timing of when you give it is important cause the body's natural melatonin increases and decreases on a regular basis.  I think usually it's said to give it around the time it gets dark, if I remember correctly---but not sure.  

Another thing many try is benadryl, but there is a 'hang-over' effect the next day usually and i don't think it's good to use it on a daily basis long-term.  Benadryl was really hard on my son---much too sedating and some nights it had the oppossite effect of making him hyper.  He'd be soooo sleepy but couldn't 'shut down' neurologically to sleep.

His sleep is greatly affected by stress/excitement.  For instance a change in routine (whether the experience is positive or negative) means a couple weeks of poor sleep at night.  I always knew when there was a substitute teacher at school, coz he wouldn't sleep well.   Then, there's the over-stimulation of a party or field-trip; illness; whatever.

We just learned to 'roll with the flow' until he reached adolescense.  He then began to be late for school, and eventually had to go to home-bound because of his extremem daytime fatigue.  (No doctors know why, but now I'm thinking it has to do w/sleep apnea---the length of pauses  has increased.  And now that I know his heart rate is low.......maybe that happened because of years of apnea catching up w/him combined with his growth spurt from 14-17?  I don't know, but I'm hoping the sleep study will be successful so we can have more info).

I'll be interested to see how much REM sleep he gets and "delta sleep" as well.  I've always suspected it to be less.  He also has always had a hard time transitioning between sleep stages---each change seems to arouse him and he seems to wake upon completion of the cycle.  This is another reason for his restlessness, I believe.

The sleep center has a tv, but no dvd player and I don't have a portable one.  But, the tv will help in regards to keeping a familiar routine.  I plan to take a couple things w/us for that purpose.  He is also used to sleeping in a full-size bed, and believe me he uses the whole bed and still falls out some nights.  So, using a twin is going to be another challenge to stayingn asleep.  The sleep lab still hasn't called to set up the appointment though, so I guess i'm gonna have to call them.

later.........happy sleepiing tonight after the 31st excitement!

My Son is 5.. he also had a sleep study 2 years ago... he had reflux as a baby, allergies to milk protiens.... pneumonia , constant chest colds, high temps during the night and always complained of tired sore legs.... I did some reasearch on the internet and demanded an apointment with an ENT... I thought it would be that easy.... He sent me to a Sleep study Dr .. he had the test at 3 years old. He too hated touching wet things... would not leave on a wet shirt if he dribbled on it or hold a sandwich if the butter would get on his fingers. He HATES things that are sticky.. including band aids and it was a battle to get him to leave the wires on his body.... since then he has lost a few of those quirks but he is still a "strange" little boy at times. He is highly intellegent.. how i don't know as his report says the suffers from Severe obstructive sleep apnea and Periodic Limb Movement Disorder ( restless legs).
For some un known reason the results of this test did not reach the right people and Brandan was never treated.... he has been suffering for the last 2 years and losing weight along the way. I held him back from school this year and forced my Dr to re check the test results and do something about this..... He has been given a nose spray for the last 6 weeks and that did nothing... so Tuesday we are heading for an ENT consult and booking in to have his tonsil and Ad removed.... about time i say.... poor little..... by little i mean 14 kg at 5... has taken as much as he can... He is moody and tired all the time. He does not eat and is just happy to lay around all day... we even had a salt water pool put in to try and expand his lungs and he him active.. worked for a little while but he soom became to tired to be bothered swimming... every winter we end up with the same thing,,, pneumonia....
I thought i would vent my anger hear as you other mums know how frustrating this is ... especially for the little ones in this.

Anyone that has had the surgery.... did it help?.... did you see an improvement?,I am praying this is the answer ...

Hi mskora, I hope your son is sleeping better soon. My son had his T&A out at three years old. It helped him sleep better for only a short while before he was back to his normal sleep patterns of tossing, flopping, jerking, folding in half, sitting up. I know it does help a lot of other kids to have the surgery though. I would do it, it may help your son.
We have since had a 3rd study done but have not been back for results. I have found out since through an endoscopy to rule out Celiac Disease which he doesnt have, that he had slight old damage from refulx but she said, since he didnt have any signs of it she wouldnt treat it. I did ask, if this would cause him to wake all night and she did say yes. He has never showed any signs of this at all so I am taken back by it. I did read up on it and silent reflux has a lot of things that my son Noah has, frequent ear infections, constipation, allergies, lack of sleep and some others I can not think of right now. We go back to the GI dr in Aug. and I am asking for meds and see if they help him in any way sleep better.
I wish there was one dr that could answer all our questions and make everything right! Good luck and hope all turns out well for you and your son! Blessings, Beverly

Greetings!

I just wanted to say - i have a 4 1/2 year old son with Down Syndrome and he has Severe sleep apnea and osephageal reflux and a very short oesophagus.

We have had a number of sleep studies - adenoidectomy twice and tonsilectomy - this did help with the apnea and now again he stops breathing about 30 times an hour for up to 10 seconds.  He is very sleep deprived as he also gets up anytime from 4am in the morning and may not go back to sleep at all.  We are all exhausted.

We tried Nasonex - that did nothing and we are on Singular in the evenings.

But our last options as we have been told there are no more surgical options is CPAP and we go into hospital on Tuesday for 3 nights and then a 1 night sleep study on Friday to try and get him to wear the nasal mask - which by the way he only leaves on for a few minutes at a time.

I surely understand what you are going through and any advice i can get would be wonderful.

I need to try and desensitize him to the mask

Good luck with the "desensitization".  I hope you're able to figure out a way to get him to tolerate the mask.  I've been working on it for nearly a month w/my 4 yr old and have yet to make any progress.  However, we did start out with a full face mask (due to mouth breathing and bloody noses) but are hoping to get him on one of the nasal pillows or something similar in the hopes that he will be more accepting of a smaller mask.  We're also out of options surgically.  Keeping my fingers crossed that everything goes well for him (and you).  Hugs.

Shelee

What do you to try and get your 4yr old to wear the mask - have you tried the sleep pur products.  Do you sleep with him/her?  do you get up all night?

I will let you know how my week in hospital goes with Toby.

Thanks for your message.  
Where do you live?
regards
Michelle

You ladies all need medals.... I feel like the lucky one when i read your post. My child only has one problem at this time... Brandan also suffered from extrem refulx and was medicated for a long time.. I too believe that this is also what can wake then at night as sometimes Brandan will tell me that he was "just a little sick in his mouth but he swollowed it"... Just becuase it might not be hurting them I still think it needs to be treated. Brandan is no longer treated but if he gets it more oftern i would def be getting a 2nd opinion.
I have not ever seen the sleep study and I will be ringing them tomorrow to have a copy faxed to me..... Why don;t these bloody dam doctors speak to each other....you would think that being a spec in sleep disorders they would have a lot better idea than us mothers... seems as tho they have their personal ideas and that it is. honestly I am so cranky with them at this time. I just pray that all this stops soon...
Now my sons Pediatic Dr says he thinks that my youngest may also have it... i asked for a referal to get 2 of them seen together at the same time to save me a little money and time... he said wait till she is old and then worry about it..... God what is wrong with these dr's... why would I want to wait and have to go thru this all over again.
Anyway thanks for the rant and rave..
I hope you kids take to their masks very soon. I am sure that it will help them no doubt. It must be hard for them to wear. I am not sure I could cope with one myself.
X Mel
Take care and get some rest!

just wanted to let you know we are still waiting for the CPAP hospital visit - it was delayed due to the fact there are no beds in the children's hospital available.  Hopefully we will go in three weeks time.

I so wish this was all over - i am ready for both myself and my son to try and get some good sleep - even though i know it will be a battle first.

i will keep you all posted

thanks
Michelle

HI,
My son got his sleep study in Feb and did so well -- Iwas very proud.  The tech was really wonderful w/him.  He seemed to sleep better than usual, and I didn't see any of the episodes that I have felt are central apneas.

The results said no centrals, 5 obstructive, 1 hypopnea with a total AHI of 1.2 = "no significant apnea".  go figure.
It did also say though that he only had 7% REM (compared to the norm of 20%) and he had 0% stage 3 & 4.

It took until mid-June to finally see the sleep specialist, but he was very attentive and acknowledged his sleepiness is "not normal".  Ha....more that I've been able to get from any other dr.  He's had us keeping a sleep diary and has a few diagnosis he wants to explore.

Last week my son had a crazy night (breathing wise) & I stayed up and wrote notes, then faxed them to the doc.  The next day the doc ordered a CPAP.  So he will be fit for a mask tomorrow.  I've no idea how he's going to do at actually keeping it on his face, but it's worth a try.

The Dr said that his REM does have mild obstructive apnea, and that he thinks maybe what I am seeing & calling centrals are actually Upper Airway Restrictions.

Another thing, and actually the most encouraging so far is that we decreased his sleep medicine at night.  At about 17 yr he started taking trazadone because he was consistantly sleeping only 1-2 hr at night, then sleeping again in 4-5 hr, always being exhausted.  A couple years ago we also added zoloft for possible seasonal affective disorder / depression and I decreased the trazadone.

I have suspected the trazadone has a carry-over drowsiness effect for him (even tho' docs have said it's not known for that).  I've skipped a couple nights of it between prescriptions and his has not been able to stay asleep.

Well, this sleep doc suggested half-ing the current dose and it made such a difference!! His total sleep is still 11 hr/24 period, but now when he's awake he is alert. .... wonderful!...i have my boy back.

then........he said go ahead and stop it all together....we did ...for 3 nights and 4 days and that was enough.  Each day he was increasingly sleepy to the point of not coping and I said enough of this.  We went back to the '1/2 dose' and had a couople days to catch up on daytime fatigue, but his nighttime sleep immediately improved.  Last night he slept 10 hr straight, woke at 7:45 am....looking good.

hopefully the cpap fittling tomorrow won't mess things up  


then, next week we go back for another sleep study:  all night followed by an all day MSLT.

It is wonderful to finally have a dr listening and attempting to find some answers!

thansk for listening and the support.  I hope your children are doing well.