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Post by Lesley on Feb 28, 2005 20:36:04 GMT
I wonder if anyone can cast any light on our little boys crying episodes.
Patrick is just over two years old and has Miller-Deiker Syndrome. He is generally pretty healthy all things considered although like most of our children he has seizures (controlled with Vigabatrin), feeds orally (pureed foods) and has thickend fluids.
About 4-5 months ago Patrick became increasingly agitated and uncomfortable. He now has regular crying episodes that last for days at a time. He has been put on medicine for suspected reflux although the results of his Barium meal came back clear. We are now beginning to think that is a neurological problem but again a recent EEG showed nothing untoward. Does anyone know if children like Patrick suffer from Migraines? Inbetween his crying bouts Patrick returns to his normal self. In fact we have just had 2 weeks clear and were hoping that we had turned a corner. No such luck, since Saturday morning Patrick has been crying more or less continuously. It is difficult because he looks in pain, with real tears, and there is no pacifying him. Our consultant has given us Chloral Hydrate to sedate him but this only gives him (and us) some peace in the short term and doesnt deal with the actual problem.
If anyone has been or is in a similar situation I would like to hear from you.
Lesley
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Post by feelsalone on Mar 2, 2005 9:40:19 GMT
My daughter has Oral Facial Digital Syndrome Type IV, she does have a tendancy to contribute to my lack of sleep. Have you tried Tylenol or Motrin, acetominophen, ibourprofin, or some other kind of anti inflammatory OTC medicine. There could be stiffness in his joints and that can feel almost the same as having bad arthritis....good luck
Jennifer
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jo
New Member
Posts: 24
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Post by jo on Mar 13, 2005 21:20:38 GMT
My daughter Katie developed a similar problem, but she only screamed at night. Katie would go off to sleep ok, but then shortly afterwards would start screaming. Sometimes she was awake, but other times asleep. Nothing we did seemed to get through to her. It was just as though we were not there at all. At her worst point she screamed none stop for 13 hours a night. My home care nurse stepped in at this point, and got us some help. Like you we were prescribed Chloral Hydrate. 2 years later we are still using it. We only need one dose a night now, and if katie wakes during the night, most of the time she can get herself off to sleep again. We felt guilty at first giving it to her, it was like we were admitting defeat or something, but our Consultant pointed out that we needed sleep as well to look after katie. If we all get a good nights sleep, we are all happier next day.
Since using Chloral we have also started using Melatonin. This has been really helpful. Prior to Melatonin, Katie had no real natural sleeping pattern. The Melatonin has got her bodyclock working on the same time as us. You do need to to give it time to work as it can take a few weeks to start having the desired effect. Since we have been working on Katies problems at night time, we have noticed how much she has improved during the day.
Don't know if any of this will help. Good Luck.
JO.
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