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Discussion Starter #1
A brief background reminder: dd is six years old, totally blind, and has multiple medical issues for which she takes a long list of medications. She also has low-tone, sensory issues and some motor delays.<br><br>
Ok, so here's the current problem that I have no idea what to do about. Dd has started to have spells of what she calls the "spinnies". When she lays down at night, she cries and says she feels like the bed/room are spinning. Last night she was crying that she hates her bed because it was moving. This only happens at night when she is laying down to go to sleep. When we pick her up and sit with her, she says it feels better and is generally able to go to sleep after a while. I know it isn't behavioral because she's just so obviously upset. But while it's happening, she's very restless and agitated, too.<br><br>
So, I'm thinking it could be a couple of things, but have no idea where to start. Here's my thoughts, in no particular order:<br><br>
1. It's a sensory thing. Too much time spinning/rocking/etc. during the day gives her that sensation even after she lays down, and it's disturbing to her. Without vision, she obviously can't logically figure out that the room is not in fact spinning.<br><br>
2. Fluid in her ears causing the sensation. She had ear tubes put in, but a recent visit to the ENT he said that one is out and the other is clogged with fluid behind it.<br><br>
3. Med reaction. She's on a lot of medications and will be for life. Most of her meds have significant long term side effects, maybe this is one of them?<br><br>
I'm not sure how to tackle this problem, and the lack of sleep is really a problem. She didn't fall asleep until after midnight last night, and so we had to let her go to school late. Plus, when she gets tired, she's more likely to get sick. Any ideas?
 

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I feel like I'm spinning when I hold my head too far back, like when I arch my neck while I'm laying on my back. It might be totally postural - so if you elevate the head of her bed a bit it could go away completely. It certainly would do that for me.<br><br>
Poor baby. I know how disconcerting that is.
 

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I used to have that exact same reaction as a child when I was really sick and was given a med, maybe combined with other meds. I can't remember what med but I think it was for asthma or allergies. I remember experiencing that until I was jr high school and probably was switched to something else. It was a very strange sensation and very disturbing.
 

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Could it be environmental?<br><br>
I used to experience something similar to what your daughter is describing when I lived with my mom. It slowly went away over time after I moved out, finally going away completely shortly after I bought my house. Mom later found out she had severe toxic mold growth throughout her house. I've always thought it's possible I was reacting to the mold. Or it could have been some of the stuff my mom used to clean the house - I've moved to all natural cleaning products (mostly hot water and vinegar) in the last few years in my own home.<br><br>
Are you using any new cleaning products, or has the house been recently painted/new carpet/etc.?<br><br>
If not environmental, my guess would be her ears.
 

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Either 1 or 2 happened to me a lot as a child. Anytime I spun during the day I'd have the spins at night and I'd have to put a leg or foot on the ground to help my find my body in space. I have a very sensitive vestibular system.<br><br>
I also had problems with fluid on my ears and that would send me off into dizzy spells.<br><br>
To this day if there is a low pressure system in the area I get dizzy - the changes in the pressure give me the spins and I spend the day in bed.<br><br>
I hope she feels better!
 

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I would look into the fluid issue also, my son has tubes and although he is only 20 months we see alot of vestibular problems, he will tip and list to one side while walking and he sits with one side of his head down, especially when he has alot of fluid. A very good friend who has had ear problems all of her life was the one to point out that alot of Finn's problems were vestibular because she has very vivid memeories of these problems as a child.<br>
Our new ENT tells us that it is very common for fluid to interfere with balance and other sensory functions in children. Perhaps you could either discuss it with her ENT or talk to a developmental ped if they do not help... Our last ENT told us that the drops were not painful and that Finn was overreacting when we would administer the drops....Yeah right...new ENT and it is a different story.<br>
hth<br>
Laura
 

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I would call and speak to your GP. With all of her meds, and other issues, it could be a med reaction or a blood pressure problem or a new problem. (There is a condition where your blood pressure drops when you lay down. And given that I would have her seen right away.)<br><br>
I think it's wise to always rule out medical problems before and sometimes concurrently with OT. Our OT always wants us to rule out medical issues first. As do our other therapists. With some things they can work concurrently; other issues, not so much.
 

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Discussion Starter #8
Thank you all so much for your replies. It really helps to know that other people have experienced this, which makes me a little less freaked out. I am going to make an appt. with her pediatrician, and also call both her ENT and transplant teams just to make them aware of the issue in case it has some medical component.<br><br>
We also asked the school to eliminate any spinning or upside-down type activities from her therapies (PT/OT), in case that is sensitizing her system.<br><br>
She slept well last night, which was a relief!
 
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