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Post by Robinson on Sept 12, 2005 14:36:28 GMT
Please! anybody got any advice!!!!? My daughter, Emily has just turned 12 months old and for the past few months she has been taking Sodium Valproate and Vigabatrin. We have been slowly weening her off Vigabatrin but we have stuck with the Epilim(Sodium Valproate). The weening off of the Vigabatrin was because it was felt by the neurologist and ourselves that it wasn't working and also because she woke up at night, occasionally, screaming. We have since been into hospital and they have given us Chloral Hydrate to give to her at night to help settle her into a sleep pattern but this doesn't seem to be having much affect.The doctors want us to start her on Clobazam and then just use the rectal Diazepam or Chloral Hydrate as and when. At first they told us that she wasn't having any seizures and then they said that they were non-convulsive seizures. It appears that, as is the case with Lissencephaly, that there is little known so they're just clutching at straws, I can't blame them coz all they can do at the moment is try and control the seizures. Emily doesn't seem to be conscious throughout the episodes of screaming but it sounds terrible, as if someone is strangling her and she is in great pain. Has anybody experienced anything like this or know of anyone else who is going through something similar? Any advice would be good. Shes always so happy and smiling during the day, full of smiles and giggles and she has so much love to offer that is why it is so strange at night with all this crying, it's so out of character. P.S. The Lissencephaly Contact Group sent Emily a birthday card on her birthday at the end of last month. I'm sure she'd give everyone a big hug and a kiss if she could, Thank you very much. Stuart and Jane stuartprobinson@hotmail.com
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Post by Jon on Sept 12, 2005 20:08:17 GMT
Stuart & Jane I remember that this was raised at one of the Lissencephaly Network conferences in the US a few years ago. I seem to remember that there were at least two possible causes mentioned... One was Night Terrors. I can't remember what how they thought this was treatable in a liss child. Anyway, there is a link on Night Terrors here www.nightterrors.org/. Not sure if this is useful for a liss child, but might give some clues. The other possibility is reflux (or heartburn). This is caused by the stomach contents coming back into the oesophagus. As the stomach is so acidic this can 'burn' the oesophagus lining and can be very painful, especially if left untreated. You shoud suggest this to Emily's doctor as it can be tested for and readily treated with suitable drugs or in extreme cases with an operation. Reflux is very common in liss children and can be exacerbated when the child is lying down. Some simple things to try would be avoiding food or drink near to bedtime and/or propping Emily up so that it is less likely for the acid to get out of the stomach when she is in bed. I hope this helps regards Jon
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jo
New Member
Posts: 24
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Post by jo on Sept 17, 2005 21:00:22 GMT
Wow ! This sounds SO familiar ! My daughter Katie (now 4 and a half)was on Vigabatrin, but to try to avoid the long term side effects, she was taken off this and put on Lamotrogine. That is when her sleep problems started. She was also a changed person during the day . Not at all her usual smiling self. After 7 months we begged for her to go back on Vigabatrin. She did. 2 years on and Katie now takes Vigabatrin and Epilim. The sleep problems were just like you described. She would either just start screaming in the night, eyes seemingly open but she was not aware that we were with her, and nothing we did helped or calmed her. Sometimes she would start screaming as we tried to get her off to sleep in her cot. People kept telling me that "babies do cry at night sometimes" but i knew this was not "normal". My little girl seemed to be so terrified and in such pain. At her worst point Katie screamed for 13 hours a night. At this point we did get some help. Chloral Hydrate. 2 years later we still use Chloral, BUT things have got better! We have also been using Melatonin to establish a proper sleep pattern. It HAS been a long term plan, but it is working. Most of the time we only use Chloral once or twice a week. We give the Melatonin each night, and Katie can get herself back off to sleep if she wakes during the night. Katie doesn't nap during the day now, as she seems to understand that sleeping is for when she gets in her bed. Melatonin can take a couple of weeks or so to start working. I do know that the chance that things may get better in the future isn't much help to you now. Everything is harder to cope with when you can't get any sleep yourself. It might be worth asking your doctors more about the chloral you use. We normally give Katie a mix that is really REALLY awful tasting, but at one point were given a fruity flavoured version by our chemist. The fruity one was a lot easier for her to take but didn't appear to work.The screaming nights were back. We got her back on the yucky stuff and she was sleeping again. All kids can react to medication in different ways, but it might be worth asking.
I keep a supply of Chloral all the time now. If it looks like we may be in for a bad night, i give her some. I also have the bonus of knowing that i can give a second dose during the night if i need to. i think i have only done this twice.
Please ask more if you want to. I hope you can get things under control pretty soon.
Good Luck!
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Post by jacqui001 on Mar 15, 2008 12:22:24 GMT
hi stuart and jane, my son had the same episode's of screaming attacks at night a real fearfull scream....he is on clobazam... chloral hydrate... lamotrogine/ lamictal....keppra/levitracetam...and has been for the past 3/4 years with no dose change and fit's are relativley stable and no more screaming... my son is now 15yrs old and i think he is doing well due to his medication he has only been in hospital for his siezures 4 times...he had a gastrostomy and fundiplication nearly 2 yrs ago and has been well ....he is due to have a tracheostomy soon another hurdle but we keep getting over them ..... he used to crawl and play with toy's but now he just sits watches tv or listens to music ..he cant clap anymore but he does tap his right hand on his chair arm and laugh ...he is very laid back but watches every thing going on around him..he communicates mostly with eye contact now were he used to point and make noises, but he seems happy and him tapping his chair arm and laughing shows me that...
good luck to you all and i hope things settle down soon best wishes jacqui and my son jack
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Post by judithh on Mar 17, 2008 21:33:07 GMT
Hi our son Jonathan who is just over 2 he as Miller Dieker he also takes Sodium Valpourate and Vigabatrin. We went through exactly the same thing so I know how you feel.Again they couldn't give us an answer as to what was causing it, however we were prescribed melotonin to help him sleep and on the whole it does seem to work we perhaps get 1/2 nights at the most during the week were he is disturbed and he is an awful lot better during the day if he gets a good nights sleep. I hope this helps...... good luck
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bec
New Member
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Post by bec on Mar 23, 2008 2:06:14 GMT
hi guyz when alyssa was first diagnosed she was started on phenobarbitone, which wasnt wirking she continued to have many seizures during the day, she has been on vigabatrim since october 07 and since then hasnt had one seizure (touch wood) there is a possiblilty that she may be having silent seizures but she is booked in for a MRI scan to check it out. If all is well then we will start weaning her off and start a new medication probably epilem. We were told the only serious side effect of vigabatrim is "tunnel vision" over a prolonged use of time but since alyssa has been on it weve noticed the nystagmus in her eyes has decreased dramatically and she is fine. She is happy during the day, still laughs smiles and babbles and is still able to sit up on her own as well. During the night she would wake up we would give her a bottle and she would go back to sleep. She has had only a few episodes when she has woken up screaming we put it down to teething, tummy pain or she has woken up and scared herself. Now if she wakes up she will lie there and talk to herself and deift bacl of to sleep within ten minutes. Any way this is our story on vigabatrim hope it helps bec
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Post by afevemoyen on Apr 14, 2019 21:15:50 GMT
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