PARTIAL Sleep Apnea

[Anonymous]

I just found out that my son has PARTIAL sleep apnea because of large tonsils and adenoids, so he’ll be getting those taken out at the end of the month and that should help his daytime mood and his sleep issues considerably.

Out of desperation with my son’s inability to fall asleep and the fact that he was always wired and NEVER sleepy. I booked an appointment with a sleep specialist. My son NEEDS 14-16 hrs of sleep in a 24 hour period or he’s a monster (screaming, throwing things, tantrums). When he gets sleep – which is really difficult – he’s an angel. The doc said that I was doing everything right by making sure he got enough sleep. I had brought up apnea, but he never stopped breathing in his sleep. The sleep doc said that MOST kids with sleep apnea have PARTIAL sleep apnea. Then he looked in Logan’s mouth and said “Yup, his tonsils are big” and suggested I take him to an ENT to see about getting them removed.

That’s it?! I’ve been struggling with him for 3 years and that’s it?!! Why didn’t any one of the dozens of docs that have done barium swallow, esophageal dilations, endoscopies, etc say something about his large tonsils?!!! I can’t believe that something that common is going to fix my son’s sleep issues.

A little history of my son’s sleep issues:

When I brought him home from the hospital after 2 weeks in the NICU, he NEVER napped during the day. He was always WIDE-EYED. He’d scream bloody murder for 1-2 hours in the evening and then pass out while laying on my chest while I was sitting up. When I went to lay him down – he’d immediately wake up. Then I would hold him all night – It didn’t take long before my breathing would wake him up too. With my pediatricians OK, I started CIO method when he was almost 4 months old. He had massive reflux and tracheomalacia (he’d gasp for air if he laid on his back because his trachea would sag and slightly collapse). I thought he was going to choke and die for sure, but their was nothing I could do to soothe him, he’d scream all day and everything (car ride, bath, rocking, music) would piss him off more. After 1 hour of crying/screaming he’d finally sleep and wake up happy. In the begining he’d only be awake for 15 mintues before needing to go down for another nap (he’d stare off into space – his only sleepy signal). When he was 6 months old his bedtime was 2 or 3pm and he’d sleep all the way to 5am the next morning. If he woke up I’d try to feed him and he’d aggressively swat the bottle away, so I stopped going into his room and he’d only cry for 5 mintues before going back to sleep (that would happen twice a night). Now he’s almost 3yrs and he sleeps 12-13 hours at night and naps 2-4 hours during the day. I NEVER GET TO SEE MY BABY!!! It sucks. I also wanted to add that my son did/does not snore and I think his breathing sounds normal (the ENT said his breathing was noisy during the day when he checked out my son – I never noticed).

If your child has trouble falling asleep and never looks sleepy and is always wired, you may want to take him/her to an ENT to check for large tonsils – it may be partial sleep apnea (which you don’t have to stop breathing to have!). I have also heard that acid reflux can cause the tonsils to swell and become inflamed/large from the acid.

My son is also getting ear tubes put in the same time because the ENT said there was fluid behind his ears. He’s never had an ear infection before. The ENT says he probably has, but I just never could tell because Logan was cranky EVERY day from being over-tired. Oh great, more guilt! He says it didn’t hurt him, just would make it hard for him to hear with the fluid in there. The fluid gets trapped because the large adenoids push up against the tube making it difficult to drain.

During the night, children with sleep apnea may:

• Snore loudly and on a regular basis
• Have pauses, gasps, and snorts and actually stop breathing. The snorts or gasps may waken them and disrupt their sleep.
• Be restless or sleep in abnormal positions with their head in unusual positions.
• Sweat heavily during sleep.

During the day, children with sleep apnea may:

• Have behavioral, school and social problems
• Be difficult to wake up
• Have headaches during the day, but especially in the morning
• Be irritable, agitated, aggressive, and cranky
• Be so sleepy during the day that they actually fall asleep or daydream
• Speak with a nasal voice and breathe regularly through the mouth

http://www.sleepfoundation.org/hottopics/index.php?secid=11& amp; amp;id=96

lansima2006-6-13 11:26:41

[Anonymous]

Thanks Marsha! That makes me so mad that it takes 3 years for someone to pay attnetion to this. Your description actually sounds exactly like Hailey, but we’ve never been able to sleep train because the reflux is still out of control. Hence she never sleeps or naps. She’s chronically over tired. I asked my ped about a referral to an ENT and he said no. I told him that I was worried about apnea because she sweats a LOT in her sleep, and she has these wierd breathing episodes. He told me that she doesn’t have this or I’d know (and he’s a good doc). I told him that I just wanted to get her checked out to be sure. He said that it wasn’t necessary. (sigh)… your story breaks my heart. Why do these little ones have to suffer so much and no one seems to care. Good luck with the surgery. I hope that you see a big improvement.

[Anonymous]

Marsha,

How did they determine that his tonsils were enlarged and that he had fluid in his ears? Was it just by looking at them? If so, would a regular ped be able to see if they looked? My doc has checked Hailey’s ears several times, so would he know if there was fluid there? Also, how did he come to the diagnosis of partial apnea- did he watch him asleep? Just wondering if this might be part of our problem as well…

[Anonymous]

Would he give you a referral to a sleep disorder clinic? Then they’d refer you to an ENT.

you wrote “He told me that she doesn’t have this or I’d know”….well it sounds like you do know. Don’t give up!

I just read a post on the ea/tef site I visit frequently and there was a mom with a 1-and-a-half year old that expressed concerned to her son’s Pulminologist that her child would stop breathing when he was sleeping in the car seat and then gasp for air. The pediatrician said no big deal, he’ll grow out of it. ….WHAT?!!! I can’t believe some docs!!!

Maybe if you stressed that you think your daughter may have partial obstructive sleep apnea and you think it is affecting the quality of her awake hours? Also, I don’t know how young they do tonsilectomies?

[Anonymous]

sylvia had obstructive sleep apnea—–she did not develope it until she was a little over a year old. she had her tonsils and adenoids removed right after she turned 2—–it made such a huge difference in her eating, sleeping and weight gain.

your son may not have had large tonsils when he was younger.

[Anonymous]

Thank you. Unfortunately she frequently has these episodes where her breathing goes really fast and then very shallow. It almost sounds like an asthma attack. It goes on for a bit and then she suddenly starts shrieking, and when I go to get her she’s covered in sweat (and I mean dripping wet). I told the ped, he said he doesn’t know what it is, but he’ll think about it a bit. He never got back to us about it, and when I asked he brushed it aside. I’ll ask about the sleep clinic, though I don’t think we have those here.

Christine, what did it sound like when Sylvia had episodes of apnea in her sleep? Could you tell that it was happening?

s&h’s mum2006-6-13 21:20:28

[Anonymous]

The sleep clinic doc was able to suspect/asume the partial sleep apnea just from me telling him what Logan’s symptoms were and how is was always over-tired but never sleepy looking. That along with having large tonsils, apnea is a logical possibility. Although you can’t know for sure without a sleep test – but I personally didn’t feel that the sleep study was neccesary and I feel I already tried everything else – including waiting for him to ‘outgrow’ it.

The Sleep doc and the ENT could tell his tonsils were big by looking at them. The ENT said they were big the length wise and not the width wise, so it may be easy to miss. Also, the ENT suspected he had fluid in his ears by looking at them, it was confirmed with a 10 second test of sticking a “wand” to his ear that bounces sonar signals or something and they measure how much the ear drum vibrates (less if there’s fluid?)

Another thing to note is that I’ve been reading that Large tonsils may actually cause reflux (or make it worse) because of the strain of having to breathe harder. Reflux can get better after removing tonsils. Also, sleep apnea can casue high blood pressure which may be related to your daughter’s sweating?

I think that ENTs know a lot about Apnea and hopefully will be able to help you if there isn’t a sleep clinic available. She was on an apnea moniter for a whilet and she still stops breathing and fights sleep? I think your daughter’s symptoms are enough to (if not make a diagnosis – lead to further tests?)

[Anonymous]

lori—that doesn’t sound like sleep apnea at all to me. alot of kids breath irregularly when they are sleeping and it is not significant. i’ve heard my kids do the rapid breathing thing and then sometimes they will breath so quietly you can’t even hear them.

sylvia’s breathing was very loud and it sounded like she was struggling for breath. sometimes she sounded like she had to gasp for air because her throat had closed off. the ped ent told me that when sylvia went to sleep, her tonsils were touching.

obstructive sleep apnea can cause poor growth because most of our growth hormone is produced when we are in the deepest stages of sleep. a child with osa is constantly aroused to a lighter stage of sleep—–sylvia was a very restless sleeper—so their growth is affected.

our local ent does not take tonsils out before 2 years old—-we went to a pediatric ent because sylvia was so young and only 20 lbs when we started the process. we were told she was at a high risk for dehydration because of her low weight, and that she would have to stay a couple of days in the hospital. she was 2yrs old and 22 lbs by the time she had her surgery and she stayed 2 nights in the hospital. i am so glad we went with the ped ent. even after 2 days on an IV, i was still worried we would have to take sylvia into the ER for IV fluids because she was taking so little in at home—but we squeaked by. our local ent would have sent her home the same day as her surgery.

i can’t remember what she gained in the first 3 weeks after surgery, but it was a significant amount—and that was even after losing weight from being dehydrated.

[Anonymous]

Thanks Marsha. She was never on an apnea monitor, but sleeps in our room so I’ve been able to hear all the sounds she makes up close and personal.

[Anonymous]

Thanks Christine. Glad to hear that other kids do this as well. I think I’ll still look into an ENT consult.

[Anonymous]

FYI: Logan is turning 3yrs old the week after his tonsils are out and they are recommending he spend the night for risk of dehydration also.

[Anonymous]

i sure hope you see the same positive results in logan that we have seen in sylvia after her tonsils and adenoids were removed.

[Anonymous]

Update: Logan is doing SOOOOOOOOOOOOO great after having his tonsils and adenoids out (and ear tubes put in) – the “blue plate special” the ENT called it. His waking hours are WAY less cranky and he stays up until 8 or 9pm now and takes only one 2.5 hour nap during the day! (before he needed to go to bed around 6pm and nap 3-4 hours during the day!). He’s talking WAY more, the speach teacher is very impressed! Anyway just wanted to pass on that there may be a link in other children between REFLUX: LARGE TONSILS/ADENOIDS: SLEEP ISSUES. Check out the new info (new to me) on marci-kids:

Enlarged tonsils
Enlarged adenoids, which can block the nasal airway, may also be attributable to EER in very young children. In a study of children less than 2 years old who underwent surgery for removal of enlarged adenoids, 42% also had a GERD diagnosis. By contrast, GERD was diagnosed in only 7% of a control group of children getting surgery for insertion of ear tubes but whose adenoids were normal. The association between reflux and adenoid enlargement was even stronger in children age 1 or less. In this age group, 88% of those requiring adenoidectomy had a GERD diagnosis, whereas only 14% of the control group getting ear tubes had a GERD diagnosis (21).

http://www.marci-kids.com/eerpharynx.html

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