[queencarr]

Isaac is a very poor sleeper--wakens on average every 45m-1 1/2h through out the night, sometime sleeping one 2-3 hour stretch. When he wakes he cries, and gets increasingly agitated and upset. Sometimes he takes part of a bottle and sometimes he can be patted back to sleep. Sometimes, I give up after 20-30 minutes of the above and drape him across me tummy to tummy in the recliner and we doze. Although he will go back to sleep this way, he will continue to waken about the same. Sometime the cry is that pitiful baby cry mixed with Mama, sometimes it is angry and sharp. He appears aware of who I am and where he is.

Background: Isaac is just shy of 18m, and was adopted 6m ago. At that time, we were told that he wakes 2x per night for a bottle. The first 2-3 nights in Korea, he did this. He is still on the same Korean formula now, but mixed with whole milk. He got over jet lag quickly and shifted his days and nights pretty easily; but began to waken frequently with what appeared to be adoption grieving. After about 3-4m, in between rough nights we randomly have nights where he only wakens 3-4 times very briefly. He now takes sips rather than a whole bottle at a time, often finishing 1 or less than one bottle per night. He was not taking any substantial amount of solids when he came home, and is still only taking small amounts but fairly regularly; mainly fruits, veggies, and cereals.

Medical stuff: Since being home, we have had a rash of dx. He has Binder's syndrome (maxillonasal hypoplasia) so he has no nasal spine or cartilage in the tip of his nose (making the nasal passages extremely soft and narrowed), so he mouthbreathes almost 100% of the time. Any nasal breathing is extremely noisy, and he will eventually not be able to breathe through his nose at all. Repair surgery is not until 17-18y. There is also the possibility of c-spine abnormlities, but our appt for that is not until Feb. He snores often. He also has a swallowing disorder, and is on thickened liquids for the past month. Initially, this seemed to help his sleep for about a week (3-4 wakings), then back to the same. We have a sleep study scheduled next week because dh and I have observed some small pauses in his breathing very rarely, and there may be a corrolation between the Binder's and apnea. It is too rare of a condition to be certain, but similar conditions seem to be associated. He also has a severe egg allergy, a well as allergies to tomatoes and sesame. He appears to have outgrown a wheat allergy, as we have recently food trialed with no reaction

: Ears, tonsils, etc. are all good.

So, my question, after that very longwinded explanation, is what else can we look at if the the sleep study doesn't show anything? He doesn't appear to be refluxing, and has no known hx of such, but that is the only other thing I can think to look at. But we would have to treat symptomatically, as he cannot have anesthesia until the spine dr evaluates him. Wisdom, insight, suggestions? Thanks!

 

[sbgrace]

It sounds to me like he's waking up after nearly every sleep cycle. Admittedly I'm not exactly sure what the length of sleep cycle is at 18 months but 45 min and 1.5 hours are typical in sleep cycle lengths. So my first thought is are you putting him to bed awake or asleep. Because it's probably too "simple" given his other issues but when a child goes to sleep in certain conditions (say being held or drinking a bottle) and then wakes at the end of a sleep cycle under different circumstances he'll often wake himself up completely. And then it sounds as if he's trying to recreate the circumstances. Everyone wakes to a degree at the end of a sleep cycle but then we put ourselves back to sleep. This is particularly true of young kids. So the key is that they recognize the surroundings and circumstances and know how to put themselves back to sleep.

However, I have certainly heard of kids who put themselves to sleep for the first sleep of the night (important) and still wake frequently like you describe. My nephew is one. But there are probably many more kids who simply need to be helped to learn how to fall asleep initially on their own.

The other thought for me when I hear of frequent night waking is reflux. So that is definitely something to think about. My son sleeps with the head of his bed elevated 6 inches to help with night reflux. He still needed to be medicated at the 18 month age (and beyond). But for him reflux caused night wakings. It's interesting that the thickened liquids temporarily improved his night sleep to me. Seems that might be important.

Apnea was my other thought so I'm glad you're having a sleep study! If you have questions about what to expect with the sleep study let me know. I made up songs for my son about wires all over the place, found pictures online, and tried my best to prepare him for it. He did well (he is on the autism spectrum and I was concerned he wouldn't) and the Children's hospital staff were really good with him. The yuckiest part aside from the usual when you try to sleep with your kid at a hospital was getting all the glue out of his hair afterward.

 

[queencarr]

At this point, I am laying him down asleep, mainly out of desperation to get my own sleep

Usually, he does not fall asleep taking a bottle, but snuggles in and nods off 10-20 minutes after. Sometimes, he will fall asleep in his high chair, usually at naps, not bedtime, but it doesn't seem to make a difference in how well he sleeps (he ofen wakes and has to be resettled even at naptime, although this is getting better). Even on nights where I am holding him nonstop because he is so restless, so he wakes in arms, he still wakes frequently and has a hard time settling again. I was told that he fell asleep on his on with a little fussing in Korea, but was never successful in that. Putting him down any version of awake results in inconsolable screaming and crying that takes at least another hour or two to calm; he is instantly fully awake and then overtired, so basically we have to start over. Do you have any suggestions for how to put him down somewhat awake without waking him further?

It is just so hard to tell what is or isn't related to something else. Is it emotioal? Is it medical? Is is just habit? And so I keep grasping at straws to find something that helps. So far, what has helped the most is going back to us on a floor bed with him on a palette next to me, like he slept in Korea. Sometime during the night, he will gradually move closer and closer until he is in bed with me proper. He didn't like being in our regular bed, probably too soft compared to the floor, and didn't like being in the middle of us. We haven't even tried his own room, as when he is on the floor before we have gone to bed, he wakes in a full panic if I am not within touching distance. Although not typical for Korean foster mothers, we suspect that he was allowed to CIO and self feed with a bottle in his bed at night, so basically unattended.

I really hope the sleep study sheds some light on what is going on, and I do plan to follow up the the GI dr if it doesn't. I may even try to feed him some smashed up some tums and see if that helps him. I just don't know what else to do--I am exhausted, and Isaac often won't let dh comfort him at night, so the majority of the night duty falls to me.

Any info you could give on the sleep study would be helpful. I have had one done, but don't how it is in comparison to kids. I do know that we will be in a room with a bed, not a crib, so I am assuming that cosleeping will not be an issue (it better not be, or I suspect he won't sleep at all

). The clinic where we are going usually does adults; I am actually surprised we could do one locally--normally we have to travel 3 hrs for specialists for a child so young. I also reserved the only room that has a rocker, as he tends to get wired in unfamiliar rooms (hotels, etc) and rocking is the one thing that seems to help.

Thanks for the support and advice

This has been a roller coaster of a few months--Isaac was supposed to have been a "healthy referral" and at a year old when he came home, normally any major health issues have already been discovered, so we have been completely blindsided!

 

[Alice27]

Dear Carrie,

Your letter reminds me a lot of my daughter's early years (and I reassure you that she does sleep the whole night through, now - I did survive

).

My daughter had some medical issues (eczema on most of her body and asthma) which certainly caused her some discomfort at night, but she was (and still is) also highly sensitive. She rarely slept if I wasn't in bed with her, either day or night.

Once I did an experiment where I gradually moved away from her in the bed until I got to the edge of the bed without her waking up, then I sat on the bed for a few minutes, moved to the doorway, stayed there for a few minutes.......as soon as I put a foot through the doorway, my daughter was awake calling me. I decided that her sleep problem was due to her antenna's being very sensitive

Once I decided to give up trying to solve the problem, things got a bit better - although it was very difficult to spend so many hours a day and night, in bed.

Some books that helped were 'Nighttime Parenting' (as far as co-sleeping was concerned - it didn't help with the 'extreme waking') and 'The no-cry sleep solution'.

Another book that helped was 'Raising your spirited child' - not for the sleeping as for the daytime. Kids who don't sleep well often tend to be spirited.

Alice

 

[momoftworedheads]

I would definitely get a sleep study. My youngest son was found to have Restless Leg Syndrome caused by a ferritin deficiency. It still wakes him up to this day.

He also has severe reflux and a milk allergy. I would look into all of thes possibilities.

My middle son has short REM cycles but we still do not have a plan for how to help him with that.

All the best!

Take care!
Jen

 

[queencarr]

Alice, thanks for the book suggestions. I will check the library over break and see if they have them. My oldest also woke frequently, but at that point he was an only child, and I had no other responsibilities. Now, I have 2 other kids and am in graduate school. As much as I would like to let it go, my other kids need a Mom who is not sleep desprived and crabby. And as far as school, let's just say it is a good thing that I am a good student that gets things first time through and that it is a distance program so I can do things on my own schedule, because study time has gone out the window

Right now, I am usually in bed within 20 minutes of Isaac, and get up when he does. I haven't been able to nap with him routinely, because an unattended 3yo (or at least my unattended 3yo) is not a good idea

I nap as often as I can when dh or anyone else is around. Your experiemnt reminded me of when my oldest was a baby, I could tell from another room when he was about to wake, and could walk in just in time to see his rowse. He also could tell when I left the room--it was uncanny. He ended up having severe reflux and once it was treated became a great sleep almost overnight.

Jen, we have had pretty extensive food allergy testing done, as he was having severe reactions and we couldn't ID all the triggers. Milk, thankfully, is ok. We haven't had a reaction, except for a couple of hives when someone who had eaten eggs kissed him, in over a month! I think I ahve decided that I will follow up with the GI unless the sleep study shows a definitive problem jst to rule anything else out. For good measure, I have been propping him up at night, with no improvement that I can see. I managed to get about half a crushed Tums in him tonight, but I don't think that made a difference, either. So with the restless leg and short REM, is there anything you can do, or is it just that you were able to ID the cause? I know it has only been 6m, and I survived 3y with ds1, but I am way more sleep deprived this time around. Part of it is my own sleep issues--I tend toward insomnia, and so when I get woke up, it takes me a while to get back to sleep, each time. Throughout the night, this adds up quickly! I even had a sleep study done a couple of years ago; everything normal except one part of the cycle was slightly short and one was slightly long, indicating chronic sleep deprivation

And that was when I was sleeping

Plus, withe the swallowing disorder, when he takes a bottle at night, he has to be held perfectly upright, and it has to be made right then because of the thickener (it continues to get thick as it sits so it comes out like pudding if it sits very long). As you can imagine, even with everything right there, this take a few minutes. It was much easier and less awakening when I could just roll over and nurse.

I guess I just want to make sure that I cover all my bases. With ds1, most people told me, over and over, that it was because I coslept/bf/way I parented that made him a poor sleeper. No, he had severe reflux that went untreated and severely damaged his esophagus. I knew something was wrong, I just couldn't figure out what. I really feel like that again--there are just so many more variables that could be affecting Isaac than my oldest.

Thanks again for the thoughts and suggestions--keep 'em coming

I'm headed to bed for the remainder of the 20 minutes or so before the next time he wakes up.

 

[queencarr]

Quick update--Isaac had the sleep study last night. Of course, it was a relatively good night for him--after getting his leads on good, which took 2 hours because he kept loosening them beofre the glue had set, he only woke once fully in the 6 hours or so that he was observed (and about 10x briefly). But, he had what appears to be a central sleep apnea episode that precipitated the full waking, and apparently the waking in fear type reaction that he has is pretty common for that

so there is a decent chance that all this panicky waking that he has been doing is related. His O2 sats dropped to 85% almost immediately, which is not good, even though it was only one episode. The tech also recorded a couple of "minor" obstructive apneas early in the night. He is not sure what the dr is going to recommend; Isaac is not their run-of-the-mill patient

He did have me record that this was a better than typical night for him and thought there was a good chance that we would end up repeating the study. So, not sure where we go from here, but more "excitement" it seems.

 

[mamafish9]

Both my kids did this - my daughter grew out of it by about 2.5, my son is in the midst of it. Hugs from another tired mama.

Two things really trigger the hard nights for my kids. The first is teething. Both my kids are really sensitive, and teething was pure, unadulterated hell. And not just the days right before a new tooth, but weeks and months of teething pain. Motrin helps (not a fix, but it helps). I'm so not a fan of drugs, but it really mattered for us. (Along with every homeopathic teething remedy out there).

The other big trigger for interrupted sleep was developmental milestones. Maybe your little guy is about to walk, or talk, or is just deeply processing some of the big stuff in his little life... Physical time (ideally outside) and then very quiet time before sleep helped some with my kids.

Good luck mama, I know hard it is to get your sleep in 30 minute chunks!

 

[Alice27]

Quote:

Originally Posted by queencarr With ds1, most people told me, over and over, that it was because I coslept/bf/way I parented that made him a poor sleeper. No, he had severe reflux that went untreated and severely damaged his esophagus. I knew something was wrong, I just couldn't figure out what.

I rolled my eyes when I read this. Why do we get blamed for absolutely everything!? You really deserve a medal not criticism!!!

Did your child test positive for eggs? Egg allergy can have a correlation with asthma.

Alice

 

[queencarr]

Thanks again for the support and commiseration

Things have, knock on wood, been better the past few nights (except for last night, but pretty sure he is fighting a cold ATM). Per the sleep tech's suggestion, we have been putting him to sleep on his tummy and rolling him over whenever he tries to get in another position. According to the tech, he had less apnea spells in this position compared to side or back sleeping. So I am still waiting on the final sleep study report, but feeling a little more hopeful that we can be proactive, and at least a little more rested

Alice, I guess a little old resentment bubbled up there. I usually don't let other peoples' opinions get to me, but it got old, yk?

 

[Alice27]

Carrie, I know what you mean. I went to a parent/teacher meeting at my daughter's school yesterday with the intention of not letting anything they said get to me (it was a group meeting - nothing directed at me personally) but I came out fuming. It sounds like you are doing a better job than me

My oldest daughter had eczema from head to foot and people told me I should let her cry herself to sleep! I still can't forget that.

Alice

 

[queencarr]

Alice, forgot to come back and say thanks again

Sorry 'bout that!

For anyone that is interested, here is the link to a post with the sleep study results and details of our aggravating ENT appt.