DownSyn Forum

[Courtney]

Hello everyone!

For the past few weeks, Lucy has been waking up in the middle of the night and coming into our room. It's usually around 4-4:30 am, though sometimes it's earlier (2:30ish), sometimes later (5-5:30am). At times, she will come into our room and lay down on the floor and seemingly go back to sleep until we take her back to her bed. Other times, she comes in talking and "awake". We put her back to bed and she usually goes back to sleep, unless it's closer to 5am, in which case she usually stays in her bed but is awake. Her regular bedtime is 8 and we are very consistent with the post-dinner/bedtime routine. When she wakes up, she does not seem to have any complaints. She isn't hungry, scared, wet or soiled. She only recently began to be able to open the door knob to her room, so while this has been noticeable to us for the past few weeks, there is a chance it's been happening for a long time and we've just never known it.

I called her pediatrician about two weeks ago and he recommended liquid melatonin, which we tried. I had a few people warn me that it shouldn't be mixed with thyroid medication, so I called Lucy's endo and she ok'd the melatonin. However, around that time her face broke out terribly, and her original endo warned that acne was a sign of thyroid trouble. Mark wigged out that the two were related and stopped giving her the melatonin. It wasn't really effective, regardless. She was going to sleep faster, but she was still waking up with the same frequency.

Last night, when Lucy came in our room, we laid her down with us because I wanted to hear her breathe. I'm always vigilant about apnea because it is so prevalent in our kids. She's always been a "loud" sleeper--we actually kicked her out of our room at 5 weeks because she was so "snorty" she was keeping me awake! She has been known to snore a bit, though she isn't what I would describe as "restless". Last night her breath sounded slightly congested, but not alarming. She was with us about 15-20 minutes and then we put her back to bed. (As an aside, I didn't notice it, but Mark complained that he put her back to bed because she was "shifty". So maybe she's more restless than I think she is.)

I want to take her to the doctor, but I am not sure if I should skip the pediatrician and just go to the ENT. I try not to be alarmist, but I really want a sleep study. Just given her statistical likelihood of sleep apnea, I want to cut right to the chase. I hate to waste time eliminating possibilities and experimenting with different solutions when there is a diagnostic test that will tell us immediately if there is a medical reason for her waking up. I am exhausted by this...it's like having a baby in the house again...and I can only imagine how tired she is, constantly living with interrupted sleep.

I was also curious about her adenoids and tonsils. Lucy has (knock wood) been extremely healthy this year, so I haven't pursued taking her to an ENT for that reason. But I am wondering if that is something I should be looking in to. Particularly if there is a suspicion of apnea. I'm considering making an appointment, but not sure if I should take her to our pediatrician first. He has been very vocally anti-ENT since I've known him, though, so I am not sure what to expect if I bring up these concerns.

Any insight that the group can share is greatly appreciated. I'm not sure how to proceed and am looking for your experiences. Thanks!

_________________
~Courtney
{Lucy, 5, Ds, AVSD repaired 1/08; Brodie, 3}

Friendship is born at that moment when one person says to another, "What! You too? I thought I was the only one!" -CS Lewis

[lespring]

I don't know about the liquid form, but there are two forms of tablet melatonin: 1 is quick release and is for people who have trouble falling asleep. The other is slow release and is for people who have trouble staying asleep. Also, you should ask what the max dose is for a child of her size.

As for the sleep study and or a T&A, you should talk to your pediatrician. I just was in to listen to a talk given by one of the doctors who helps write the healthcare guidelines for our kids, who feels that all kids with DS should have sleep studies at various times throughout life because the prevalence of apnea is so high.

If her tonsils aren't large (and your pediatrician I'm guessing would have commented on them if they were) then removing them shouldn't have any effect on her sleep.

_________________
~Leah~

My mom's blog
http://gardenofeagan.blogspot.com/

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Rob 26, Noah 25, Tyler 23, Bryon 23, Angela 16 (DS), Axel 12 (DS, adopted from Serbia 12/2012, AAI w/fusion) Asher 7 (DS adopted from Serbia 12/2011, AAI non-fusion)

[mary c]

Well, we have had the "fun" of a sleep study and discovered that Anna has sleep apnea. The doc at the sleep center said ordinarily that they would send a child to the ENT to have the adenoids/tonsils taken out as a result of the sleep study, but Anna had that done when she was 4. We are supposed to have her sleep with a cpap but she just won't fall asleep with it on. We are headed back to the ENT to see if her adenoids have grown back. Our sleep doc recommends against melatonin for children. I know a lot of people give it kids, but he thinks that it is a sex hormone it may affect development--I am not trying to sway you one way or the other, just reporting what he tells me.

I would start with the ENT for an evaluation regardless of what your ped thinks.

(and by the way, Anna gets up multiple times in the night--we have a gate on her door which if she is wide awake she can open, but in the night she can't seem to work the mechanism.) She goes to bed at 715, is up by 630 and frequently gets up at least two times a night. She actually takes a nap for a few minutes in school every day.

_________________
Mary
Mom to Libby 6/92, Alex 9/93, Anna (DS)12/12/03

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[lespring]

Angela started taking Melatonin when she was 3, and took it off and on for several years. (it has a tendency to stop working after a couple of months) She stopped waking up at night when she was about 9. That's when we started her on clonidine. Occasionally, usually when she's pms'ing, she'll have trouble with waking at night, but it's very rare.

But your daughter is far too young for "hard" sleeping drugs.

_________________
~Leah~

My mom's blog
http://gardenofeagan.blogspot.com/

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Rob 26, Noah 25, Tyler 23, Bryon 23, Angela 16 (DS), Axel 12 (DS, adopted from Serbia 12/2012, AAI w/fusion) Asher 7 (DS adopted from Serbia 12/2011, AAI non-fusion)

[TracyR]

Haha, my typical 4 year old son does this! I know how annoying it can get. Hope you find some answers soon.

_________________
Married, mother to 7: Girl (1994) / Boy (ADHD, 1997) / Boy (LD, 2001) / Girl (ADD, 2002) / Girl (2006) / Boy (2007) / Ezra (DS, 12/27/2009)

[TheBradyBunch]

Noah always snored, and woke up frequently, until his tonsils & adenoids were removed. At first glance his tonsils didn't look that big, but when he made his weird noise with his mouth open the ENT got to see just how big they were, they were so big they touched at the back of his throat.

Anyway, if she has just learned to open the door, then I suppose you wouldn't have known how bad her sleep has been for the past few years because she wasn't waking you up.

Melatonin didn't work for Noah, he is also on thyroid meds, but it was completely useless. After his tonsils were removed, his sleep improved 10 fold, and his eating did too.

It was frustrating to get there though, it took several ENT visists...OR time here is so in demand that you pretty much have to convince your dr it's needed.

The "sleep" specialist we saw determined that Noah wasn't waking up for any behavioural reason so there was nothing she could do. I was a little pissed with her wasting my time, because if it were behavioural, I WOULDN'T HAVE BROUGHT HIM TO HER. Unfortunately though, sometimes we need to entertain the medical system, so they can feel better and rule things out.

_________________
Mom to: Nicholas (May/02), Nathan (April/04), Charlene (June/06), Noah (DS, ASD) (May/07), Jesse Lynn (July/08 ), Tessa (Apr/10), Kaitlyn (Jun/12)

"Sometimes the things we can't change end up changing us"