Results of Sleep Study

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Joined: 11/28/06
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Results of Sleep Study

Madi had her sleep study on the 21st and I was told by the tech that the hospital would forward the results to the doctor in approximately 10 days. After 2 weeks I decided to give the doc a call and spoke with the nurse. She assured me that everything was within normal limits, no need to worry. I said, "That's great! Could you send me a copy of the report please?" She seemed very confused by my request and said, "But I told you everything was fine." I told her that I appreciated her relaying that information to me but I like to have a copy of reports for my self. She made a kinda big deal about it, told me she'd have to charge me, to which I said, "go for it."

Anyway, I got a copy of the report yesterday and I'm confused and frustrated. I'm no expert, but I can say her results don't look terrible. However, in conjunction with her symptoms (which are terrible) I think I should have been notified of the exact findings so the situation can be monitored.

Her sleep efficiency was 93% (good) but she does have mild prolongation of REM latency from sleep onset. She had 4 episodes of mixed apnea, 3 episodes of central apnea, and 3 episodes of hypopnea. Her lowest saturation was 90%. Her longest apneic event was 20.9 seconds. She had 37 arousals throughout the night. Her results were considered "borderline" and she was diagnosed with "mild sleep disordered breathing marked by a nature of mixed apnea and hypopnea." She also has mild snoring.

I'm just frustrated that the Pulmo didn't think this info was important enough to disclose, especially considering my concerns for her behavior. I plan on taking the report to our Pedi so she can advise us what our next course of action should be. At the very least I want another study done in the next 6 months-1 year. And, I don't plan on returning to the Pulmo because I feel he can't be trusted. I've let him know before that as a parent I have the right to know the full details about my children's reports, even if they aren't in the severe range (which is all he seems to care about). I like details and I deserve details. I was so mad that I could hardly sleep last night! lol

gardenbug's picture
Joined: 03/12/07
Posts: 2025

I understand your point of view!

Joined: 11/28/06
Posts: 848

I think I'm going to call Nemours Children's Clinic in Orlando tomorrow and try to get an appointment with a doctor there. I found one that specializes in asthma and apnea. Nemours seems pretty advanced compared to the care we've been getting. You can access your child's medical records online and communicate with doctors/staff via e-mail for non-emergencies. I just think it is so important to have a team that I can trust and communicate with. If this clinic really is as wonderful as it sounds we will probably take Alana there for a second opinion about her GI issues.

Joined: 05/05/04
Posts: 435

I'd be frustrated too. "Fine" doesn't describe her results. I hope you like the team in Orlando. We drive an hour for Tom's cleft team and 1:25 to go to the pediatric dentist associated with it. It's worth it to be sure your kid is getting the care they deserve!

Joined: 11/28/06
Posts: 848

I'm so excited I'm on cloud nine! I called the clinic today and I was able to get Madi in to the doctor I was hoping for. Her appointment is in January (about the time she's due for her next check-up and when my funds renew on my FLEX card). The receptionist was very helpful and friendly and didn't act as if she were rushed or would rather be doing something else (what I got at our last office).

In the meantime, we are putting Madi to bed without her radio (she's had one on at night since she was born) to see if it helps her sleep better. Last night was a fail with her getting up at 1 AM, screaming and throwing a fit for a drink of water. Typically I'd give her water if she woke up and asked for it because she doesn't usually complain of being thirsty when she wakes. But we are also going to try sending her back to bed and denying all requests to see if that cuts down on her waking and getting out of bed. We are desperate! Any suggestions/tips would be greatly appreciated!

wishing4agirl's picture
Joined: 09/11/03
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"Alana*sMommy" wrote:

Any suggestions/tips would be greatly appreciated!

I'm no help since Eli still comes into our room. Especially when he's having issues even if they are on the milder side (clearing throat like last night). Glad you were able to get in with the new clinic. Sometimes changing drs is the only way to get things resolved. It's how we finally got answers for Eli. I don't know a ton about sleep study results, but I do know that what we (as parents) would consider bad the doctors don't and it's very frustrating because it doesn't help us help our kiddos. Dakota actually had abnormal results, but they didn't consider it bad enough to do anything about. That was a long time ago now though and he's ourgrown the issues he was having back then.

Joined: 11/28/06
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"wishing4agirl" wrote:

I'm no help since Eli still comes into our room. Especially when he's having issues even if they are on the milder side (clearing throat like last night). Glad you were able to get in with the new clinic. Sometimes changing drs is the only way to get things resolved. It's how we finally got answers for Eli. I don't know a ton about sleep study results, but I do know that what we (as parents) would consider bad the doctors don't and it's very frustrating because it doesn't help us help our kiddos. Dakota actually had abnormal results, but they didn't consider it bad enough to do anything about. That was a long time ago now though and he's ourgrown the issues he was having back then.

If you don't mind sharing, what were Dakota's results like? Were they causing behavioral problems during the day? I'm at my wits end....she is crying (for the second time since we got home 15 minutes ago) as I'm typing this post. Last night she had a tantrum on the way to dance, then fell asleep - all in a 10 minute car ride! She stayed asleep through Alana's 2 dance classes (1 1/2 hr), the ride home, and then I put her to bed without her waking up. She slept through the night as far as I know - thank goodness!

I just want this new doctor to listen to me and offer some suggestions. There has to be something we can try before we all go insane. I just want to be able to enjoy my child again!

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

"Alana*sMommy" wrote:

If you don't mind sharing, what were Dakota's results like? Were they causing behavioral problems during the day?

Well it's really hard to say if the behavioral problems were from the sleeping issues or if they were from the autism because he still has the behavioral, but they are less frequent. But he doesn't have the sleeping issues. Having said that, they did an excellent job of helping him back then so........? Anyway, he had a lot of what you are talking about, but they usually surrounded his OCD tendancies. If that makes sense. Like he would line up the cars and go crazy if Eli even looked in the direction of the cars, or if you asked him to go into a different room than the one he was in. And the behavior you are talking about now with Madi is how Dakota is now only he doesn't fall asleep. I really can never fully explain how bad it really was. People thought I was overreacting until they actually saw it and then realized I could never really fully do justice to how very bad he was. So I'm not really sure if any of it was the sleeping issues. Of course now the kids sleeps like a log. LOL I'm not sure if any of that helped. I definitely don't mind sharing, but I'm not very good about putting how he was into words because it was really really really bad.

Oh and the fits would last for hours and hours. There was really no calming him down.

Joined: 05/05/04
Posts: 435

My kids have only ever woken up yelling/scared/anxious a couple of times. Are you sure it's not some sort of night terror? Honestly, if my kid woke up screaming I'd be right there snuggling. It just sounds like something is going on, not a manipulation thing. Tom normally wakes up to pee (we're not always that lucky but NORMALLY he wakes up to pee) and then he stumbles into our room and climbs in my bed. If it's early in the night I send him back to his bed but if it's 6:20 or something then I keep him in there because I know he won't go back to sleep and he shares a room with Sam. She's pretty grumpy when she doesn't get enough sleep so we try to make sure she gets what she needs Smile

gardenbug's picture
Joined: 03/12/07
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DD's daughter often wakes up in a very grumpy mood, especially when she doesn't wake on her own. It takes a long long time for her to shape up too. Oddly enough, I suggested a radio alarm to wake her up gently. We'll see if that works or not.

wishing4agirl's picture
Joined: 09/11/03
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Remind me how old Madi is again?

Joined: 11/28/06
Posts: 848

Madi turned 5 in May and is in Kindergarten now. I'm pretty sure she isn't having night terrors of any kind and she definitely isn't fearful. She's pretty good at manipulating during the day so we're trying to be sure she isn't doing the same at night. The last few nights she hasn't gotten out of bed or called out to us so maybe the lack of music is helping her to sleep a little better. Can't really be sure because her behavior is just as awful and she's still falling asleep in random places.

MJDttc's picture
Joined: 08/12/12
Posts: 1118

:lurk:

Ok I may totally be coming from left field here but was she sitting up when she fell asleep through the drive/dance lesson? Maybe it is a headache/pressure type issue? I notice sometimes that I get quite a large headache while laying flat (and lasts for quite sometime after I sit up), it sometimes takes a while to kick in when I am laying down. Is that something they would measure in a sleep study?

I am sorry for butting in, and I am not even sure what made me think of it, but the laying down headaches often make me a grump the entire day long...It also makes me more prone to falling asleep the next day.

Joined: 11/28/06
Posts: 848

She was sitting up when she fell asleep in the car and at dance. And at dance she was sitting in a metal chair! She never complains of headaches, but then again she doesn't complain of much even when she's really sick.

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

Okay she is past the age for what I was thinking so it's not that. Oh I do know of people saying their kids had night terrors that they didn't realize were night terrors, but those were actually picked up on a sleep study so that's probably not it either. And this is NOT the same thing (because Eli's are not just headaches, but ministrokes), but sometimes when Eli's headaches come on, he actually doesn't complain it's his head. And his teacher last year had a relative (a child) who would get migraines but not complain. I know there are different types. Sorry I can't be of more help.

Joined: 11/28/06
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"wishing4agirl" wrote:

Okay she is past the age for what I was thinking so it's not that. Oh I do know of people saying their kids had night terrors that they didn't realize were night terrors, but those were actually picked up on a sleep study so that's probably not it either. And this is NOT the same thing (because Eli's are not just headaches, but ministrokes), but sometimes when Eli's headaches come on, he actually doesn't complain it's his head. And his teacher last year had a relative (a child) who would get migraines but not complain. I know there are different types. Sorry I can't be of more help.

Yes, my cousin has a TBI from a car accident and he now gets migraines without pain (he's 12). When one comes on he has short term memory loss (repeats the same things over and over) and just wants to sleep.

I really feel like Madi just isn't getting good, uninterrupted sleep. I think she's a kid who needs a lot of sleep to function, and though her results are borderline on paper they affect her tremendously. I wish there was a way she could still take a nap every day but it just isn't happening (a scheduled nap anyway, lol).

And now she's coming down with a cold so her sleep will surely be affected. Her colds usually turn into sinus infections, which apparently aren't painful in little ones like they are in adults but no one sleeps well with a stuffy nose. Lucky for me she's staying the night with my inlaws tonight! lol

Joined: 12/01/05
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I am assuming they ruled out seizures/narcolepsy. I can't recall if you've said that. Have you tried melatonin for sleep? Isaiah takes it every night, and it does help. Also making sure there is no exposure to light, because even a small exposure can deplete your natural melatonin in your body. The only exception is red light, so we actually have a red lamp in Isaiah's room for when the nurses go in and give him meds. I know what you mean about sleep being really important. Cherish needs more sleep than any of the other kids, and if she isn't in bed by 7:30 pm, her behavior the next day is horrible.

Joined: 11/28/06
Posts: 848

I'll try to make a long update short, lol. My husband threw away our copy of the sleep study report by accident. He called the pediatrician's office to see if they were sent a copy and they weren't. So he called the Pulmo's office and told them we need a full report, not a summary like we were originally given. Within a few days we had a copy of the summary (again) and some medical records from the study. The records were mostly charts/graphs and notes made by the tech. I spent some time going over the records (which I still found to be incomplete) and noticed that the # of apnea events didn't even add up! 4 plus 2 does not equal 4! That one math error had me questioning things. Then, I look over the tech notes and she recorded that there were desats with every occurrence of apnea. The doctor's reports stated there were no desats. So things just don't add up. I would really like another study done, this time at a place that specializes in pediatrics.

Madi's sleep and behavior continue to be terrible but we are dealing with it the best we can. We give her naps on weekends and even weekdays if we don't have plans after school (which isn't very often unfortunately). She has another cold though and isn't sleeping very well at night right now. In fact, she was up at 4 AM fussing about her nose and never slept for more than 5 minutes at a time after that (trust me....I know....because neither did I! lol).

Oh, and I have heard about melatonin but I know next to nothing about it. Is it safe to give without consulting a doctor first? How do you know how much to give? I am definitely open to trying it! She has always slept in a very dark room, no night light. We tried turning her radio off but it didn't seem to make a difference so it is back on now.

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

Well a friends son (he was about 4-5 at the time) took melatonin (told by the dr to give it) so I think it's safe, but I'd consult a doctor first. Having said that if the doctor is not into alternative medicine they may tell you no. I do think a study done by a pediatrics office would be beneficial since pediatrics and adults stuff can differ greatly. And the discrepancies would make me run somewhere else too. It's actually why we left our former cardiology office.