Harry's Sleep Study (my 6-year-old) Do I Need to Follow Up?

[socknitster]

I have to make a decision and I need some help making an informed decision.

As some of you may remember, I was diagnosed with severe sleep apnea in 2007. Shortly after that, we discovered
that my son, then 4 years old, who has always, since birth, had sleep issues, had sleep apnea as well. We took him to an ENT because his tonsils and adenoids were extremely large and had them removed. I no longer heard him having apnea and after a year, when we were sure he was completely healed, but still having some sleep issues (though the worste was over) we had a sleep study done at Riley Hospital in Indianapolis, Indiana.

I was in the room for the study. He was not afraid or even very disturbed by all the wires. I had prepared him for what to expect very well and he seemed very comfortable. He fell asleep right away and slept very peacefully. No tossing and turning or grinding of teeth (like I had seen him do in the past when sharing a room with him in a hotel or something). He only woke once to go to the bathroom and was reluctant to wake up when they woke us at 5:30 am to leave the facility.

The sleep study showed that he no longer had any apnea. His oxygenation was normal. So, the ent said--done. He is cured.

I'm still worried. There was one thing the sleep study mentioned that was odd--he had zero REM sleep during the study. Now I'm worried that he has abnormal sleep architecture. I made an appointment with a child neurologist at the same hospital which is an hour away. I will have to take him out of school for the morning and getting there by 8:30 will be a challenge. I'm up for it, but my husband thinks I should cancel it and that I'm overreacting.

Some things to note:

He goes to bed at 8 pm and gets up at 6-7 am. Usually closer to 7. We work very hard to protect his sleep and we make zero exceptions to this rule. He very, very rarely sleeps past 7, even on weekends, unless he is sick.

They did wake us very early--and I know most REM occurs just before we get up at our normal time.

The report noted that the lack of REM was probably due to sleeping in an unfamiliar place. If he hadn't been sleeping so peacefully, I would maybe agree. I'm just not sure. I think if he had been awake I would know it. I was "sleeping" in a chair next to his bed, so I would have been very aware of what was going on and even I had dreams.

He had a very strange episode early in the summer where he claimed to see a figure dressed in black that wasn't there. He seemed to know it wasn't there, wasn't alarmed by it, yet kept seeing it out of the corner of his eye. This person looked like Darth Vader, a character he is obsessed with despite the fact that he has never seen the movie because I know its too violent and emotional for him yet. Once we were leaving the house on a day when it was about to rain and very dark outside and I happened to be wearing a black shirt and noticed I could see my reflection in a window as we were about to leave for the day when Harry shouted--I just saw him and pointed at the same window. So, I think it may have been a matter of his brain not knowing what it was seeing sometimes and misinterpretting what he was seeing. My fear (I'm a big worrier) is that it has something to do with his lack of REM and that there could be some mild hallucinations going on. This issue resolved itself as the summer went on. He hasn't mentioned it in a long time.

He just turned 6 and started wetting the bed for the first time ever recently. It has happened about 5-6 times in the last 2-3 months. This never happened before--even when he was potty training at age 3.

By all accounts he is a bright boy. He is excelling in Kindergarten. He is one of the most proficient readers and writers according to his teacher. His attention span, which has been a significant issue in the past, now seems to be normal for his age.

So, what do you guys think? Am I overreacting? Should I take him to the appointment I made 3 months ago when I was more concerned? Or take a wait and see approach? He is having an easier time falling asleep and is sleeping through the night without getting up multiple times like he used to. I'm wondering if the wetting the bed isn't a sign that he is sleeping better and more deeply than ever before and is actually a good thing!

Any input is welcome!

[Uncle_Bob]

The sleep study showed that he no longer had any apnea. His oxygenation was normal. So, the ent said--done. He is cured.


By all accounts he is a bright boy. He is excelling in Kindergarten. He is one of the most proficient readers and writers according to his teacher. His attention span, which has been a significant issue in the past, now seems to be normal for his age.

Sounds like clever happy little chappy to me I'd vote on the wait and see approach for now.

Isn't it normal for young boys to see ghosts and wet the bed?

[twokatmew]

Bed-wetting and teeth-grinding are symptoms of OSA, Bob.

Sock, even though the appointment isn't exactly convenient, I say, go. If nothing else, it may be reassuring that your son's OK. If not, they'll start checking now before a more severe problem develops.

My mom spent years dragging me from doc to doc, only to be told I was a picky eater and she was over-protective. I nearly died when I was 13 and down to ~40lbs., when they finally diagnosed Crohn's Disease. Chances are your son is fine. But why take the chance, especially when you already have the appointment?

[Hawthorne]

It's very hard to decide what to do I know.

Bed wetting starting up at 6 years of age could be emotionally based. Is there anything else that disturbs him, even off and on? This obviously began before school started for this year since you say for 2-3 months. It may, of course be school related, since it began as the school year approached or the last school year ended. Can you recall anything at the end of the last school year, that may have happened that would indicate that it may be school related?

I also wonder too, about diabetes, although this may not be consistent enough to indicate diabetes. Is there diabetes in your family anywhere?

I am not an expert but taught Primary grades in Elementary school for 30 years. I was a Primary Specialist and a Special Education Specialist (children with learning disabilities - although from what you say a learning disability is probably not the case). These 2 things I mentioned, I would suggest bare looking into from my experience in these areas.

I think I would keep that appointment and, perhaps see my GP before that appointment.

I don't know if you are overreacting or not, since I don't know you and have not observed Harry or ineracted with him but, if you are concerned you should look into it.

It may be nothing but a brief passing thing but I would look into it, at least with my GP.

[Hawthorne]

It's very hard to decide what to do I know.

Bed wetting starting up at 6 years of age could be emotionally based. Is there anything else that disturbs him, even off and on? This obviously began before school started for this year since you say for 2-3 months. It may, of course be school related, since it began as the school year approached or the last school year ended. Can you recall anything at the end of the last school year, that may have happened that would indicate that it may be school related?

I also wonder too, about diabetes, although this may not be consistent enough to indicate diabetes. Is there diabetes in your family anywhere?

I am not an expert but taught Primary grades in Elementary school for 30 years. I was a Primary Specialist and a Special Education Specialist (children with learning disabilities - although from what you say a learning disability is probably not the case). These 2 things I mentioned, I would suggest bare looking into from my experience in these areas.

I think I would keep that appointment and, perhaps see my GP before that appointment.

I don't know if you are overreacting or not, since I don't know you and have not observed Harry or ineracted with him but, if you are concerned you should look into it.

It may be nothing but a brief passing thing but I would look into it, at least with my GP.

[Hawthorne]

It's very hard to decide what to do I know.

Bed wetting starting up at 6 years of age could be emotionally based. Is there anything else that disturbs him, even off and on? This obviously began before school started for this year since you say for 2-3 months. It may, of course be school related, since it began as the school year approached or the last school year ended. Can you recall anything at the end of the last school year, that may have happened that would indicate that it may be school related?

I also wonder too, about diabetes, although this may not be consistent enough to indicate diabetes. Is there diabetes in your family anywhere?

I am not an expert but taught Primary grades in Elementary school for 30 years. I was a Primary Specialist and a Special Education Specialist (children with learning disabilities - although from what you say a learning disability is probably not the case). These 2 things I mentioned, I would suggest bare looking into from my experience in these areas.

I think I would keep that appointment and, perhaps see my GP before that appointment.

I don't know if you are overreacting or not, since I don't know you and have not observed Harry or ineracted with him but, if you are concerned you should look into it.

It may be nothing but a brief passing thing but I would look into it, at least with my GP.

[Hawthorne]

I have no idea why that posted 3 times!!!!!!

[ozij]

He just turned 6 and started wetting the bed for the first time ever recently. It has happened about 5-6 times in the last 2-3 months. This never happened before--even when he was potty training at age 3.

Isn't Harry little brother just moving from babyhood to toddlerhood? Moving about more independently, beginning to communicate verbally? He's more of a competitor now.

5-6 time in two or 3 months is not so much.

I also wonder whether Harry may be picking up your worry about him:

Should I take him to the appointment I made 3 months ago when I was more concerned?

It could be a coincidence, but that's 3 months too. If he senses you concern, and possibly the disagreement about this between you husband and yourself, that could also cause bed wetting.

Children do have imaginary friends -- that's normal - and not clearly distinguishing dreams and non dreams, fantasy and reality also sounds age appropriate at this point.

None of which answers your "should I keep the appointment" question --I'm really thinking out loud. I wonder if you could discuss things with the neurologist first without bringing Harry along - ask her what to watch out for, whether she need to see him, etc. Because, you will have to tell him why you're taking him -- and none of the things you've described at this are easily explained to a sensitive happy child. So he may be rather worried by being taken to a doctor at this point -- and remain worried even if everything turns out to be fine.

O.

[BlackSpinner]

Keep the appointment. My daughter at 3 had a very high fever with seizures, we followed up for over a year with tests before every one was satisfied. That is what you are looking for - peace of mind, you won't get it skipping appointments. So what if people think you are "over reacting" ! It is your mind, your emotions and your child.
I would have it checked out.

[Babette]

Hey buddy, good to hear from you!

I agree with some other posters - keep the appointment. Do try to have a conversation witht the doc privately without Harry, as well.

I'm tempted to think all of this sounds very normal. But with a genetic history of sleep apnea, your fear about lack of REM sleep is justifiable. I just don't know what to do about it. Thus, I do think you should see the neuro-doc.

Best of luck!!!!!!

Hugs,
Barbara

[roster]

....... There was one thing the sleep study mentioned that was odd--he had zero REM sleep during the study. Now I'm worried that he has abnormal sleep architecture. .......

I think this will go in my signature someday, "Internet patient forums can be great for patients sharing with patients about their therapy and how to improve it. Internet patient forums are not good for seeking diagnoses." You go into a forum worried that you might have a health problem and two hours later you are worrying about having six health problems.

About the bedwetting, there are two pediatricians who figured out that most cases of child bedwetting are caused by sleeping in one position, without moving at all, for too long. They designed a wearable device that times how long the child stays still. At a certain maximum limit the device will issue a very mild shock to interrupt the child's sleep. They are having great success. I can't find the links now but if anyone else does please post them.

On the other hand, I agree with O, the frequency of your child's bedwetting is low.

[virgo RT]

I think you should have the follow up and definately, share your concerns. in the 5-9 year old range normal amount of rem sleep should be about 20% in a normal sleep event. You must take into consideration a sleep study is a very minute glimpse of our sleep patterns, and many factors affect sleep... being in a different place, stress, and fears.

good luck
yvette

[socknitster]

Ozij (and everyone),

Good point, but Harry doesn't know about the appointment. And when my husband and I talk about his sleep issues, it is when he is in bed. I am very, very careful to never talk about anything like this in front of him. He is very sensitive and you know how little kids are--they think that they understand something when they really don't and get themselves all upset until a parent figures it out. I think its just better for them not to accidentally overhear anything that might make waves.

I actually wasn't worried about the sleep study at all until he started seeing the guy dressed in black and my brain somehow made the connection to the lack of REM and the next thing I knew I was very worried.

I am actually thinking that it maybe has taken this long for his sleep to BECOME normal after an entire lifetime of poor quality sleep (despite my best efforts.) He was a reflux/colic baby who never wanted to sleep and then the night terrors started as a toddler. Even after the tonsilectomy his sleep was still not great. 3-4 months ago, when the last school year was ending, he was still waking up multiple times a night--more than the baby at that point! He would inexplicably get up to have a bowel movement at 5 in the morning sometimes. But lately he doesn't get up at night hardly at all.

Another thing that changed about 3-4 months ago which--now that you say that has me thinking--we discovered he is allergic to milk (just like me). When we realized that all the headaches, belly aches, gassiness, constant colds and coughs went away when we did a milk-free trial--he was initially happy because he felt so much better. But then he started feeling envious about what others are eating outside our home and resented that he couldn't have cheese etc. That alone might have something to do with all of it. Perhaps the milk allergy was disrupting his sleep as well. Now that there is zero milk protein in his diet and his tonsils are gone, there is nothing holding him back from sleeping well. He had been off of milk about 6 weeks at the time of the sleep study. Maybe he just needed more time to normalize.

I really appreciate everyone's input. I'm going to share this thread with my husband before I make a final decision. I hate to take him out of school for any reason. But the reassurance might be worth it.

[jennmary]

Ok....this is going to sound really really creepy.

Before I was diagnosed I used to see a man in black off to my side quite often on waking, or when I would get really sick and run a high enough fever. A friend jokingly calls him my guardian angel. I had shivers run up my spine when I read this.

The dr who did my sleep study told me morning hallucinations were a sign of a sleep problem, as is waking up anable to move. I havent seen my man in black since starting CPAP. (ok...once, but it was right after my car accident when I was in the ambulance, and I had a concussion).

Maybe Harry and I both have a thing for darth vadar. I dont know.

Either way....as a mother it is natural to worry. I always take the better safe than sorry approach. You should take him. Better to do it now and find nothing, than to not do it and find out a year down the line (or 10) that there was something wrong. I think anything that helps put your mind at ease is worth doing. And men always think we overeact....lol. Nothing new about that. Your husband may think you are jumping at nothing, but I am sure he realizes it comes from a place of love and motherly concern.

As a mother you know when something is not quite right with your child.

On another note....good to see you again. I have been gone a while, and looks like you have had your hands full as well.

Jennifer

[tattooyu]

You know, I remember seeing a man in black when I was little, too. I have very large tonsils (still do), and could have had apnea since then. It's possible, but no one really talked about that in the mid-to-late 70s, especially with kids, as far as I know. I would have some night terrors and sleep paralysis myself and went through a bed-wetting phase, but it resolved itself on its own as I grew older.