So last night our toddler had his sleep study. I know I’ve posted a few times about his sleep concerns. Some of them are related to his Sensory Processing Disorder, but because he does snore we knew it was best to make sure something physical wasn’t going on. He also has a GI appointment coming up for a swallow test due to choking while he drinks and gagging often. So, in my mind, I was thinking perhaps there is a relationship between the two. Of course, when you have children with an ABC of diagnoses it can be hard telling what is related, what is separate, what is co-morbid, etc. So it’s best to always get everything checked out and not assume anything until you know for sure!
I have to admit, I was REALLY nervous about the sleep study. I had already expressed my concerns about his SPD and how that may make things a little more difficult. When they told me everything they were going to hook up to him I was extremely nervous! He generally doesn’t even let doctors listen to his heart without having a meltdown! They can rarely ever even get his vitals most of the time! He does a little better when our other two kids are with him because it helps him to feel more comfortable, but obviously for the sleep study that wasn’t an option! I had so many people offering encouragement and saying how well their kids did, etc. I tried to let it put my mind at ease, but at the back of my mind I couldn’t help but wonder – do they have SPD? Will that really play a big role? Like or not I was going to find out!
When we got there he had just taken a 15-20 minute nap in the car, so we were already set up for a difficult time! We got settled in and met his sleep tech, who was very sweet and understanding! I explained he has SPD and doesn’t do well with people touching him, etc., and she tried a few things to get him to respond, to which he just bulked at her. It was decided it would be best to wait until he was asleep! Surprisingly, he went to sleep quickly! So, she and another tech came in to start hooking him up. As soon as the other tech touched his legs, though, he jumped up screaming and ripped everything off. :/ I wasn’t surprised because he is VERY sensitive to touch in certain areas, and his legs are definitely a sensitive area! So, it was decided to wait longer. Because of the disturbance, though, he got his “second wind” and was just absolutely wired! He was playing and running and making silly noises. Around 10pm it was decided they were going to go ahead and start the video recording so they can at least see that he is bouncing around – and because if you don’t get 6 hours of recording time they bill you instead of your insurance! EEK!
Somewhere between 10:30pm and 11pm ANOTHER tech decided she was going to step in and “help” our tech by doing it her way. It was AWFUL. At first she was talking nicely to him and trying to coerce him into putting the stickers on, but he just wasn’t having it. I tried to explain SPD, but I’m not sure she even listened. It got to where I actually had to hold him down while they put the things on his head. They opted to do a modified version meaning less wires on his head, none on his legs. It was so, so awful! He screamed and fought. I was already in pain when we went in there, so that was just absolutely exhausting to me both physically and emotionally. I kept telling myself, though, it will be worth it to get answers, so I kept comforting him through it. It was SO hard for me as the tech that doesn’t understand SPD is telling him “it doesn’t hurt” and “he’ll fall asleep soon, he’s giving up” because it just wasn’t true! Things that don’t hurt sensory normal people can be absolute TORTURE for those with SPD! As far as falling asleep, though, yeah, the more stimulated he gets – no matter how tired he is – the longer he will stay awake. Sure enough he was up until midnight after that! I felt so bad for him because he kept telling me he hurt and just wanted everything off. 🙁
I was so glad that once he fell asleep he mostly stayed asleep. He would wake up often in a startle, which is normal for him, and I’d have to keep him from pulling on wires and particularly the tube in his nose. Needless to say, even though he did seem to sleep well, I got hardly any sleep AT ALL! Then somewhere around 4am he turned over and hard, which caused the box to fall on the floor, and it stopped working! I was so nervous! I was seriously thinking please let this not go to waste! Our tech was going to switch it out, but she was advised by the other one that had been “helping” to just leave it alone so they could watch him sleep through the video. I really felt bad about that answer, but I was hoping for the best! So then I couldn’t sleep because I was sick with worry that this would all be a waste! I was just having a really hard time with all of it.
Around 6am he finally got everything taken off. Again, our tech was gently removing everything, and the other one came in and pulled off everything quickly! I was still half asleep and I hear my poor little guy SCREAMING that he hurt! It was terrible!! Our tech apologized a million times when it was all said and done and said that is not how she likes to do things and she knew of my concerns and was very sorry for everything. I was just hugging our little guy and soothing him until he went back to sleep. I was heartbroken for him. As if it’s not hard enough for him as it is! He did go back to sleep, though, and slept until 9am, so he got a few hours of sleep without restrictions of wires and irritations of everything for which I was grateful!
We finally got to see the doctor around 11am after many attempts from the nurses to take his oxygen levels again. They finally got one! You can’t blame him, though! He doesn’t like being touched anyway, but after his experience that night and morning he REALLY didn’t want to be touched! He even flipped out about ME touching him sometimes, and that isn’t like him AT ALL. He was ALL out of sorts. After speaking with the doctor I was informed he had 4 breathing “concerns” during which his Oxygen did drop – 93 at the lowest. BUT she felt she did not have enough data to make any specific determinations. My heart sank. My worst fear was that there wasn’t going to be enough after the machine had stopped working and that was confirmed! She did ask if midnight was his “usual” sleep time to which I explained it’s not totally uncommon for him to stay up that late, but it’s when he experiences a lot of stimulation like that.
So the results – I guess you could say inconclusive. UGH! The follow up? A day time sleep study next week! Double UGH! We will be calling them tomorrow voicing all of our concerns about our experience and about our concerns of having him go through something like that again! If they truly think it’s his adenoids and/or tonsils (this was mentioned) then we could follow up with ENT or even talk to the GI about it for the swallow test. I just
don’t want to can’t put him through that again if we can get answers another way or even if there is enough data for a referral to a specialist that may be able to give us answers! So, I suppose I will have an update after we speak with them, but as of now we’re scheduled to have the sleep study during the day next week! Please keep our little guy in your prayers!
This sounds so similar to many of our experiences with doctors and hospitals that just don’t get children with SPD. Ugh so frustrating and I’m sorry you had to go through all that! Adam used to have problems with choking and gagging, but it’s go better over time.The endoscopy should help with that, my son had one a few months ago and although it was a huge ordeal it was worth it to get it down and find out what’s going on. prayers for you guys. Hope you can get this all figured out!
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janie vezina says
our son is autistic and has sleep problems i am glad that they havent needed to do a sleep study yet.