The God of Sleep once again has left us. For months now. It's wearing on us all. Why? Reflux, Ellie's brain learning how to sleep without Depakote, head aches, insomnia....
I swear the sleep deprivation is the hardest part of this whole experience. It makes me divide my life into to parts: before Ellie and after Ellie. Before sleep deprivation and after sleep deprivation. This is not a good head set to be in.
I am hoping that in time her brain will rewire, relax, etc. I may try some Skullcap. Ellie's not happy about it either. She wakes up screaming and rather upset. I hold her. She tries to sleep and just as she falls asleep again, she screams. She does this from about midnight till 4am...most nights. I am tweaking with her diet and water intake late in the day. I give her antacids before sleep. We gave her a bath last night before bed to help relax her. We are creative in our trouble shooting. It's hard though. I am feeling grumpy yet grateful that my little one is more alert and seems not to need a nap in the day. She is making huge gains in school. On Friday her new teacher started using letter sequences to teach her pattern matching in preparation for algebra. Ellie got it right away. She no longer slumps forward in her chair due to fatique. She no longer constantly rubs her eyes in tiredness. She also has more control of her eye movements so I am assuming her ability to focus is better.
She is also very interested in food and trying my food in particular. See all the gains and all the joy! This damn sleep deprivation is getting in the way of my truly being ecstatic about all of this. My bright eyed inquisitive girl is back in force and I am too tired to really enjoy it. Sometimes I think it's all in my head. And I take this approach - change my attitude and life will appear better. It works sometimes. At others it does not.
One day at a time....but if anyone knows Morfeo, tell her from me that we really need her to stop by and hang out for awhile.
13 comments:
Have you ever tried Melatonin with Ellie? Your comment about "her brain needing to learn how to sleep again" made me think of it. I've taken Melatonin and the thing I like about it was if I took it at the same time every night for two weeks I didn't need to take it anymore as my brain learned how to sleep again from getting the correct amount of sleep hormone (I have a few dx that seem to be associated with not enough melatonin or melatonin not working right... can't remember the exact science off the top of my head).
How are Ellie's legs? I was just wondering if they are particularly tight because I have trouble sleeping when mine get like that and a pillow under my legs works wonders for comfort at those times. Emma (p.s. I have a new blog)
I have been thinking about Melatonin...
And Emma - you are so right - her legs are very very tight. It's concerning on many levels and why I will try Motrin tonight and maybe a role underneath her knees....
OK - EMMA anti up on the new blog url! ;-)
I thought about Melatonin too.
Someone recently sent me a link about Neurofeedback which I found very interesting. Insomnia was one of the conditions that are treated by it. It seems to be like a live-action EEG with encouragements for restful brain waves. I considered giving it a shot for myself since me and the rest of my family have serious insomnia problems.
Those gain sound amazing, though.
I was going to suggest the melatonin as well. It helps many folks I know. So does sam-e. Do check with her doctor before adding anything to her intake. Good luck.
K, when Morfeo is finished at your place, can you send her down under? Thinking of you. J
BTW - wow - great news about Ellie and algebra. Moo counted to 100 today only he missed out numbers from 30 through to 89. Almost.
Will have to find a naturopath to talk to me about Melatonin though, I brought that up years ago to both Ellie's pedi and GI doc and both said they didn't know about it...grrrr because, you know, everything outside the realm of pharma -medical understanding is not worth knowing about...that is a rant for a post...
Jacqui, any influence I have, which appears to be very little I will use to send to you! ;-) And that is cool about Moo counting. So what if he missed a few inbetween. I am sure when he needs those missing numbers he will be able to find them. ;-)
Hope Ellie's/your sleep has improved! Because since I commented here I've had insomnia, big style. GRRR
We use Melatonin all the time in both kids and adults with brain injuries. Not all doctors are anti-everything and not all natural remedies are looked down on.
Kathryn,
I haven't slept either since my daughter stop taking depakote (actually, since the dosage stop beeing therapeutic). It sucks, but it's a transition. Their brains were off and know they neen to learn again.
We've tried melatonin, melissa, passiflora, epsom salts, melissa baths, lavander... I dont remember what else. Nothing has worked. We are about to try with 5-htp, any experience???
BTW, my daughter just wakes up at 3 in the morning fresh and ready to start a new day. She sings and laughs until 7am, when she falls sleep again. At least she is happy :D
Emma, sorry to hear that!
Danielle, good to know. I have inquired about Melatonin to no less than 5 of Ellie's doctors here and none of them will talk to me about it. See why we need you in Boson? And I hope you see why I need to seek other sources of reference about it. I have no idea why they don't know about it.
Mama, What is 5-htp? i have not heard of it but want to know. We are running on empty at this point.
See this post:
http://scatteringbright.blogspot.com/2009/09/exhaustion.html
Barbara
Duh, I just got the picture. Gods of no sleep, I should be so lucky.
D ;-)
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