Helping my 4 year old

Something just struck me - he's falling asleep mostly when driving home from wherever - I wonder if he's extra sensitive †o car emissions, CO (not CO2), and is reacting the way someone else might if exposed to e.g. a car running in a closed garage? He's so young and may just not be toughened enough yet to things we take for granted. It doesn't explain the overnight mask-offs, but then maybe he's just a person who sleeps in batches of 2 or 3, etc. (as people did long, long ago and some - adults - still do now). Maybe there isn't a lot wrong with him except being 4, and while I know you feel he must keep the mask on all night, maybe he needs a couple of breaks overnight - he's small and the mask isn't, but not to be thought of as necessarily having anything else (e.g. PLMs) 'wrong' with him. Tho' how you can arrange for him to incorporate actual breaks overnight, have someone get his mask back on after a short break and still get enough sleep yourself - I'm not sure!

sleeplessmommy wrote:Got a full 8 hours before he ripped it off tonight, but that was with 2 wake ups. Wish I knew why this kid is still waking up so much?

Two wake ups seems pretty normal to me...

Forgive me, but this information contains jargon I am unfamiliar with.

Muffy, can't give the tired mothers a break and actually type out the words instead of using acronyms that aren't commonly known? I'm sure you're a fast typist.

Julie wrote:Something just struck me - he's falling asleep mostly when driving home from wherever

Tired kids fall asleep in the car. Actually, tired adult passengers probably do, too. But kids definitely do.

He is so restless, though. Yelling out, kicking me In his sleep...he is hot. He is cold. He needs a drink. This is all in one night. And it is usually every night.
I got a message from the sleep doc that they received the compliance report and I should call them or I can wait until follow up. I think I am going to call and ask about PLMS and see if we can get blood work before the visit so we would have that information in advance. I hope they don't take the machine back. He is young and maybe he will do better as he matures with it.

Googled all the acronyms so I'm up to speed now.
This kid is very complicated. Wish he came with a manual. He goes for an OT eval today to look at sensory. Just trying to look at all angles especially since the hyperactivity and behavior piece may be with us even if he was compliant with CPAP.

sleeplessmommy wrote:Wish he came with a manual.

In re: sleep, try this one:

http://www.aafp.org/afp/2001/0115/p277.html

sleeplessmommy wrote:He is so restless, though. Yelling out, kicking me In his sleep...he is hot. He is cold. He needs a drink. This is all in one night. And it is usually every night.

That's a lot of sleep interruptions.

I think I am going to call and ask about PLMS and see if we can get blood work before the visit so we would have that information in advance.

Make sure they order a FULL iron panel, not just ferritin, as well as folate, magnesium, and B12.

He goes for an OT eval today to look at sensory. Just trying to look at all angles especially since the hyperactivity and behavior piece may be with us even if he was compliant with CPAP.

For what my story is worth... When my son was diagnosed with ADHD, we went through all these various tests to see if it was caused by something else (e.g., sleep, neurologic, sensory, etc.). His teachers even suggested a sensory disorder based on his behavior (crawling into small spaces, touching everything/everyone, he used to push the top of his head into the side of my body, etc.). I was a bit reluctant to go to the OT eval because I knew deep down that no matter what, they will find a sensory disorder (that's just the biased impression I have of that field--I think it's ill-defined and not well studied). But desperate, went to the OT eval and he presented as needing deep stimulation. They piled heavy pillows on top of him to where I nearly was having a panic attack watching, and he loved it. He would crawl through their weird set ups (making ME feel trapped), and he loved it. At least I had a sensible OT evaluating him and neither of us were sure it couldn't all be ADHD, and we could not delay the ADHD meds any longer because behavior therapy was not working well enough and he was tanking at school (it was a nightmare). So we decided to put him on medication and see what "sensory" issues were left over. Put him on stimulants and immediately all his "sensory issues" disappeared.

Is this to say that other kids don't have "real" sensory issues? No. I think kids with other issues (e.g., ADHD, Asperger's, etc.) may have more sensory issues. And I'd be more inclined to trust a sensory diagnosis in the presence of hypersensitivity (e.g., doesn't like shirts with tags, won't take a bath, won't fingerpaint, etc.) than the way my son's manifested. But that field is not well established, and I would treat the known more than the unknown, especially if he isn't doing well. If he's doing relatively OK with other kids, etc., sure you can spend 12 months seeing what OT can do for him.

Hope my anecdotes help.

The anecdotes are very helpful! He came up typical for sensory and fine motor today anyway. So, wrong tree to bark up. Spoke to the sleep doc's fellow who was calling about a bad compliance report. Asked him about PLMS and said the movents were minimal but if we wanted to get blood work, we could. Forgive me if I missed it, does your son also have sleep apnea in addition to ADHD?

sleeplessmommy wrote:Forgive me if I missed it, does your son also have sleep apnea in addition to ADHD?

See PM

I was a bit reluctant to go to the OT eval because I knew deep down that no matter what, they will find a sensory disorder (that's just the biased impression I have of that field--I think it's ill-defined and not well studied). But desperate, went to the OT eval and he presented as needing deep stimulation.

As a retired OT with sensory issues myself (I never worked as a pediatric OT dealing with sensory issues, however ) you have some valid concerns. Much of the OT approach to sensory issues was guided by observation, intuition, and guesswork, and the theories about what, why, and how didn't necessarily get confirmed when subjected to rigorous study (it has been the subject of enormous controversy in the field!). But at the same time, literally THOUSANDS of kids HAVE been helped by the sensory approach. I believe that sensory issues are real, and that OT's have some of the most effective and best approaches to treating them--the results are real and make a huge difference in these kids' lives.

I'm going to risk sounding like a CRAZY broken record again--I have no personal experience with this in kids with these issues. But there are too many parents and professionals finding that kids with symptoms like ADHD, sleep issues, etc. make marked improvements when gluten and excess sugar and starch is eliminated from the diet, gut health is addressed, and children are given the saturated fats they so desperately need for healthy brain development. It costs little, it's not dangerous, has no bad side effects, so it seems to me it's worth a try.

He does get daily omega 3s, no red dye, but is not gluten free. But I agree and will likely investigate this piece more.
I feel comfortable that he is not in need of OT at this point.
I definitely need to neutralize the major effect the sleep issues are having on him. He definitely is affected by the disruptions in his sleep and he behaves markedly better when he has a decent night.