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10 months ago
Sunday, April 19, 2009
Sleep disorders
Quinn is up again, wide awake and jumping, for no discernible reason. Sarah and I are having a very difficult time. We're going to have to take another crack at this. 2.5mL of liquid melatonin isn't working. The sleep deprivation makes so many other things miserably difficult. And it makes it emotionally very difficult for me.
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7 comments:
Maybe your pediatrician can contact a Fragile X Clinic and ask them for advice. Then you could get their knowledge without the cost! I feel for you. That year and a half Punkin didn't sleep was awful. I never was able to find melatonin in liquid form. I always put a 1mg pill on a spoon with water and then gave him candy as a reward for suffering through the yucky taste.
We've suffered from the same thing....awful! Do you guys see a neurologist? If not, another option is finding one (preferably that has had FX patients). We started out trying melatonin. Then we did neurontin (however you spell it)...didn't seem to do a whole lot of good. Then we did clonodine...it was great. But then we needed something to help keep him calmer during the daytime. The clonodine was pretty strong for the daytime. So currently he takes Tenex. It's still considered mild on the charts compared to other meds, but it's working good for Ian. We're due for another neurologist appt. soon and we're going to check into raising the dose since he's bigger now. Please keep us updated.
We've been going through the same thing with Evan recently. He can go through periods of a few days of sleeping through the night, and then for whatever reason, he goes through the periods where he is up. We going through that now! A lot of the times, I can hear him in his room just being awake, sometimes (often) he ends up crying for us and juice (water with just a hint of flavor), and last night, he was in there jumping and going through books for quite a while (an hour maybe?). He did end up crying, and I went in and changed his soaked diaper, and then he went to sleep.
There seems to be a pattern to his good nights and bad nights, but I haven't figured out what, if anything, is causing these patterns.
Kyle and Matt didn't go through this.
Not sure if you read this blog.. but she just posted about the same issue... http://2under2whoknew.blogspot.com/2009/04/sleep-issues-they-are-sucksville.html
Thanks for that link, Holly's Mom.
Oh yes, sleep deprivation is no one's friend. We use Mellatonin and it works ok, most of the time. It gets Jake to sleep but doesn't keep him asleep. It usually works for about four hours. I give it at 7pm and I am lucky if he is asleep until 1am. We tried Tenex which worked for his older brother Josh who eventually outgrew his sleep problems but with Jake the Tenex kept him awake for three days! I tried Benadryl, this also kept him awake and very hyper. I have heard of folks using Clonidine with good results. Sometimes Jake gets up in the middle of the night and just wants to play and play. Frequently he is more verbal in the middle of the night during his sleeplessness so I have to wonder what neurological process ocurrs in his little brain is like a light bulb suddenly turned on at the wrong time of day. Good luck, naps are a Fraxa Moms best friend.
Do you have Quinn on a sensory diet? My son Landon is three with Fragile X. In between 18 months and almost three he would do the same thing Quinn is doing. We finally figured a sensory diet that helps with that. We also do lots of joint compressions, brushing, and weighed vest. He still wakes but not as often. The melatonin didn't work for us either. I have heard it doesn't for a lot of Fragile X kiddo's. I totally understand how you are feeling. Hope this helps.
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