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Sleeping PAtterns in Visually Impaired Babies


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  #1  
November 3rd, 2007, 09:44 AM
Member
Join Date: Jul 2007
Location: California
Posts: 28
Hi there -
Been a while since I posted anything. It took us a while to come back down to earth after Brooke's diagnosis. Well, now here we are. She is doing really well. We have occupational and physical therapy that are helping her gain trunk strength, head control, and a vast array of other goals we are working towards. She has been formally diagnosed with Cortical Visual Impairment, which just means that her visual impairment is neurologically based. She sees just fine and her eyes are structurally normal. She is having trouble perceiving what she sees though. I figure that every time she sees another human being she things, "don't know what that is, but I'm pretty sure I've got two at home." She is focusing on me more. She'll look at me when I feed her - look towards my husband and me when we talk. She will track some objects, but sees better out of her peripheral vision. Anyhow, I could go on and on with what I have learned about Cortical Visual Impairment - but I won't. I have a question to throw out there in the hopes that I may get some good feedback and suggestions....

Brooke is having trouble sleeping at night. I just seems generally difficult for her to fall into a sleep pattern. I have to be so careful about when I get her up in the morning, when I get her down for her first nap, when I feed her, ect. in order to get her through the night without multiple wake-ups. She's not waking to eat. She wakes up and is disoriented and can't seem to soothe herself back to sleep. She's getting up close to 5-6, often more, times per night. The only way we can get her to fall back asleep is by getting the binky in her mouth fast enough so she doesn't wake up entirely. One thing that has gotten her to nap better (nap at all, I should say) during the day, is a weighted blanket. I know these can be controversial, but it works for her and gives me time to get something done during the day. I truly think that her waking at night and inabilty to self soothe has more to do with her visual impairment than anything....

So my question...Does anyone have any suggestions? Coming from mom's of visually impaired kids, do you think I am on the right track? I keep thinking, maybe this is just a baby phase thing, but we're almost to 8 months now and this has been going on for quite some time.

All suggestions are welcome...Thanks!!
BrookesMom
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  #2  
November 3rd, 2007, 11:00 AM
Platinum Supermommy
Join Date: Mar 2006
Location: Offutt AFB, Nebraska
Posts: 6,739
Wish I could give some advice but I'm here for HUGS!!!!
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  #3  
November 3rd, 2007, 07:29 PM
samylaine's Avatar Super Mommy
Join Date: Jul 2006
Posts: 534
Nathan was always a good sleeper, even before he had surgery for his ROP... of course he was very young then also. Does she sleep in a room by herself or in with you guys? Nathan was in a bedside sleeper until he was 2.... he sleep sin the room with us now... his toddler bed is in there.. I know its a bad habit but it works for us... it sounds like you have a routine and stick to it so I don't know what to offer you. My friend has a little boy with Autism and he always liked the weighted blankets? I think it makes them feel like they are being touched by someone and gives them security...
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  #4  
November 5th, 2007, 10:11 AM
fiefer87's Avatar Mega Super Mommy
Join Date: Aug 2007
Location: Near Buffalo, NY
Posts: 4,336
I'm sorry. That has got to be rough. I know with us, we have difficulties, but not quite in the same way. Alexis will go to bed usually around the same time each night (between 8-9). Then randomly, she will wake up at 2,3,4 oclock in the morning and not go back to sleep. Then she'll conk at like 6 oclock that evening and do the same thing, wake up early because she's gotten almost 8-9 hours of sleep, and this will repeat for a few nights, then she'll regulate. But it'll start all over like a week to 2 weeks later. It drives me nuts.

If the weighted blanket works, I would say keep using it. Also, do you know if she has nightmares? I know sometimes, my dd gets them and then has trouble sleeping the rest of the night. Have you tried a nightlight? She might be afraid of the dark. Also, have you tried a white noise maker (ocean sounds, or something else soothing) or possibly classical music set low for her? My dd is extremely musically oriented and cannot fall asleep without music on. These things may also help sooth her when she wakes up in the night. If the house is usually very noisy, or just kind of buzzing throughout the day, she may be having difficulties with the silence.

I am glad she is doing well otherwise, and I hope she contunies to make great progress. Let us know how she does.
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<div align="center">Thanks Alison's Mommy, SillyMama, Katarina and samylaine for my blinkies.</div>
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  #5  
November 6th, 2007, 04:07 PM
Albinismmum's Avatar Regular
Join Date: Aug 2007
Location: Ontario Canada
Posts: 51
Bryn has had horrid sleep issues. This is what they told me.

Kids with VI often have trouble sleeping due to the lack of ability of the eye to detect the suble changes from day to night. For us, when the light begins to fade our brains release a chemical (melatonin I think). For Bryn, due to her transillumination of the iridies she is always overwhelmed with light and she has a pale optic nerve and uneven pathways so her eyes do not detect these changes and her brain does not release those chemicals efficency.

Bryn has been on Melatonin from early on to help replace the chemical she is missing.
So basically, VI kids do have a sig'difficulty with sleep. There have been several studies on it, I will see what I can find.

Quote:
Hi there -
Been a while since I posted anything. It took us a while to come back down to earth after Brooke's diagnosis. Well, now here we are. She is doing really well. We have occupational and physical therapy that are helping her gain trunk strength, head control, and a vast array of other goals we are working towards. She has been formally diagnosed with Cortical Visual Impairment, which just means that her visual impairment is neurologically based. She sees just fine and her eyes are structurally normal. She is having trouble perceiving what she sees though. I figure that every time she sees another human being she things, "don't know what that is, but I'm pretty sure I've got two at home." She is focusing on me more. She'll look at me when I feed her - look towards my husband and me when we talk. She will track some objects, but sees better out of her peripheral vision. Anyhow, I could go on and on with what I have learned about Cortical Visual Impairment - but I won't. I have a question to throw out there in the hopes that I may get some good feedback and suggestions....

Brooke is having trouble sleeping at night. I just seems generally difficult for her to fall into a sleep pattern. I have to be so careful about when I get her up in the morning, when I get her down for her first nap, when I feed her, ect. in order to get her through the night without multiple wake-ups. She's not waking to eat. She wakes up and is disoriented and can't seem to soothe herself back to sleep. She's getting up close to 5-6, often more, times per night. The only way we can get her to fall back asleep is by getting the binky in her mouth fast enough so she doesn't wake up entirely. One thing that has gotten her to nap better (nap at all, I should say) during the day, is a weighted blanket. I know these can be controversial, but it works for her and gives me time to get something done during the day. I truly think that her waking at night and inabilty to self soothe has more to do with her visual impairment than anything....

So my question...Does anyone have any suggestions? Coming from mom's of visually impaired kids, do you think I am on the right track? I keep thinking, maybe this is just a baby phase thing, but we're almost to 8 months now and this has been going on for quite some time.

All suggestions are welcome...Thanks!!
BrookesMom[/b]
__________________
dam.[/b]
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  #6  
November 18th, 2007, 07:50 PM
Member
Join Date: Jul 2007
Location: California
Posts: 28
Thank you everyone for your hugs, replies, advice, ect. We are FINALLY back to the two to three weeks of good sleep she gets (and thus we get) before things go haywire again. I have learned, in the mean time, that kids with VI have a 25 hour clock. We all do actually. Visual ques and behavioral cues tie us into a 24 hour cycle. Thus, with VI comes a cycle that gets off every so many days. The trick is, how to get it back on again. I'm learning about the importance of routine and sound cues, things like that in order to keep her to a schedule. Meaning, not sleeping all day and awake all night! My husband and I are finally caught up on our sleep. I am always interested in hearing good advice on this topic though, as I see it being an ongoing issue for us! For quite a while at least! Thank you - Thank You - Thank You for all of your advice, thoughts, and well wishes!
Kadie

So, the melatonin...
Do you have to give that into Bryn's daily? I'm wondering if we can give it to Brooke when her cycle get turned around. I've read about it and understand the role it plays in mediating the sleep-wake activity of the brain, but don't know anything about dosing it for particular sleep dysfunction...
Thanks!
Kadie

Quote:
Bryn has had horrid sleep issues. This is what they told me.

Kids with VI often have trouble sleeping due to the lack of ability of the eye to detect the suble changes from day to night. For us, when the light begins to fade our brains release a chemical (melatonin I think). For Bryn, due to her transillumination of the iridies she is always overwhelmed with light and she has a pale optic nerve and uneven pathways so her eyes do not detect these changes and her brain does not release those chemicals efficency.

Bryn has been on Melatonin from early on to help replace the chemical she is missing.
So basically, VI kids do have a sig'difficulty with sleep. There have been several studies on it, I will see what I can find.

Quote:
Hi there -
Been a while since I posted anything. It took us a while to come back down to earth after Brooke's diagnosis. Well, now here we are. She is doing really well. We have occupational and physical therapy that are helping her gain trunk strength, head control, and a vast array of other goals we are working towards. She has been formally diagnosed with Cortical Visual Impairment, which just means that her visual impairment is neurologically based. She sees just fine and her eyes are structurally normal. She is having trouble perceiving what she sees though. I figure that every time she sees another human being she things, "don't know what that is, but I'm pretty sure I've got two at home." She is focusing on me more. She'll look at me when I feed her - look towards my husband and me when we talk. She will track some objects, but sees better out of her peripheral vision. Anyhow, I could go on and on with what I have learned about Cortical Visual Impairment - but I won't. I have a question to throw out there in the hopes that I may get some good feedback and suggestions....

Brooke is having trouble sleeping at night. I just seems generally difficult for her to fall into a sleep pattern. I have to be so careful about when I get her up in the morning, when I get her down for her first nap, when I feed her, ect. in order to get her through the night without multiple wake-ups. She's not waking to eat. She wakes up and is disoriented and can't seem to soothe herself back to sleep. She's getting up close to 5-6, often more, times per night. The only way we can get her to fall back asleep is by getting the binky in her mouth fast enough so she doesn't wake up entirely. One thing that has gotten her to nap better (nap at all, I should say) during the day, is a weighted blanket. I know these can be controversial, but it works for her and gives me time to get something done during the day. I truly think that her waking at night and inabilty to self soothe has more to do with her visual impairment than anything....

So my question...Does anyone have any suggestions? Coming from mom's of visually impaired kids, do you think I am on the right track? I keep thinking, maybe this is just a baby phase thing, but we're almost to 8 months now and this has been going on for quite some time.

All suggestions are welcome...Thanks!!
BrookesMom[/b]
[/b]
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