Results of Sleep Study
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Thread: Results of Sleep Study

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    Default 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

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    I understand your point of view!
    Leo (3 1/2) with Malcolm the cat

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    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.

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    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!
    wishing4agirl likes this.
    Natalie & Dan - June 2, 2001
    Samma - Nov. 5, 2004
    Tommy - Oct. 19, 2007




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    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!

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    Quote Originally Posted by Alana*sMommy View Post
    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.

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    Quote Originally Posted by wishing4agirl View Post
    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!

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    Quote Originally Posted by Alana*sMommy View Post
    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.

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    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
    Natalie & Dan - June 2, 2001
    Samma - Nov. 5, 2004
    Tommy - Oct. 19, 2007




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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.
    Leo (3 1/2) with Malcolm the cat

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