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#1 Tutter

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Posted 01 June 2010 - 05:00 AM

Hi all,

I'm the mother of a very sweet little girl 4 yo. Unfortuntely she has had neuro- and behavior problems since 7 mo.

All truble began shortly after a fall from the nursing table, where she hit her head. First symptom was some long episodes of very low tone often accompanyed by intence streaming. Thise episodes continued anywhere from 5 to 20 min. She then had a real epileptic tonic/clonic seizure when she was 11 mo and later one at 13 mo so she was started on antiseizure meds. Her long episodes of low tone slowly changes to very short drops, that we beliwed was atonic drop seizure. Even though ictal EEG was neg. for epileptic charge.

After a long evaluation she was cleard for epilepsy and for a year now, she has been off medicin except meletonin at night. So we beliwe she has grown out of her epilepsy.

But she still has lots of behaviol problems and several "seizures" were she looses tone. Sometimes she just nood with her head, buckels her knee's but she also looses all tone in her body, even though that is not as often, luckely. As she has grown older is has become more clear that most times there are triggers to thise episodes. She seldom laugh loud when she stands up, but if she do she will fall. When she's really excitet she will very often fall. Also anger and stress can provoke more episodes.

I have some films on youtube:



She also seam very tierd most of the day, but she can only sleep if there is quiet enough. Then she can sleep for two-tree hours for a nap. She never sleep at strange places, she just becomes hyper active or she snuggles down on the sofa whit her favorite teddy.

Othervice she is a bright child and her development is normal. Btw we live in europe small north contry, Denmark.;)

Any good advice for the sleep tests?

#2 amazingracie28

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Posted 02 June 2010 - 09:59 AM

Hi all,

I'm the mother of a very sweet little girl 4 yo. Unfortuntely she has had neuro- and behavior problems since 7 mo.

All truble began shortly after a fall from the nursing table, where she hit her head. First symptom was some long episodes of very low tone often accompanyed by intence streaming. Thise episodes continued anywhere from 5 to 20 min. She then had a real epileptic tonic/clonic seizure when she was 11 mo and later one at 13 mo so she was started on antiseizure meds. Her long episodes of low tone slowly changes to very short drops, that we beliwed was atonic drop seizure. Even though ictal EEG was neg. for epileptic charge.

After a long evaluation she was cleard for epilepsy and for a year now, she has been off medicin except meletonin at night. So we beliwe she has grown out of her epilepsy.

But she still has lots of behaviol problems and several "seizures" were she looses tone. Sometimes she just nood with her head, buckels her knee's but she also looses all tone in her body, even though that is not as often, luckely. As she has grown older is has become more clear that most times there are triggers to thise episodes. She seldom laugh loud when she stands up, but if she do she will fall. When she's really excitet she will very often fall. Also anger and stress can provoke more episodes.

I have some films on youtube:

http://www.youtube.c...h?v=K1x2rXj2CCI

She also seam very tierd most of the day, but she can only sleep if there is quiet enough. Then she can sleep for two-tree hours for a nap. She never sleep at strange places, she just becomes hyper active or she snuggles down on the sofa whit her favorite teddy.

Othervice she is a bright child and her development is normal. Btw we live in europe small north contry, Denmark.Posted Image

Any good advice for the sleep tests?



Hello,

I'm really sorry your daughter is having such problems Posted Image . I'm not sure what standard procedures are overseas, but have you scheduled a sleep study for her yet? Have you brought this up with her doc? What does he say? I haven't been able to watch the video, but what you describe does sound a lot like cataplexy-but of course I'm not a doctor and she does have a whole lot going on.

I would definitely talk to her doc and see if you can have her tested-not sure what the age cutoff is for sleep studies, I want to say a 4yo can have one, but not 100% sure.....even then it might not be the easiest test for a little one to comply with......

Amazingracie28

#3 Tutter

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Posted 02 June 2010 - 10:54 AM

Hello amazingracie
We have been refured to a sleepcenter from her ped. neuro. I think they will do a PGE and a MSLT.

I fell somhow nervous for the MSLT caus' she fights off the sleep so much. I sometimes have dobts if she might infact have microsleeps. Would they be able to se a microsleep on a MSLT?

Tutter

#4 amazingracie28

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Posted 02 June 2010 - 11:05 AM

Hello amazingracie
We have been refured to a sleepcenter from her ped. neuro. I think they will do a PGE and a MSLT.

I fell somhow nervous for the MSLT caus' she fights off the sleep so much. I sometimes have dobts if she might infact have microsleeps. Would they be able to se a microsleep on a MSLT?

Tutter




Honestly I'm not sure.....I know they track sleep stages but not sure about microsleeps. I think you may have a valid concern about the MSLT if she fights sleep. You may want to talk to her doc about this to see what he suggests since she's too young to fully understand that she shouldn't fight it for that test. Hopefully he will have some good suggestions for you.....Good luck!!!!!

#5 Tutter

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Posted 03 June 2010 - 12:52 PM

Thanks;)

We have been to the sleepcenter today and I feel very confident right now. They seamed very professional and if the PGE and MSLT, that she will have over tre days dose not give a conclusive answer there is the possiblety to do messure for cratin in the spinal fluid. But I hope that will not be neccasary.

Now we only have to wait, hopefully soon after summerbreak we will be called in.

#6 amazingracie28

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Posted 03 June 2010 - 01:06 PM

Thanks;)

We have been to the sleepcenter today and I feel very confident right now. They seamed very professional and if the PGE and MSLT, that she will have over tre days dose not give a conclusive answer there is the possiblety to do messure for cratin in the spinal fluid. But I hope that will not be neccasary.

Now we only have to wait, hopefully soon after summerbreak we will be called in.



Fantastic-I'm glad things went well. Good luck and please make sure to come back and report how things went!!!

#7 Tutter

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Posted 04 June 2010 - 01:07 AM

Fantastic-I'm glad things went well. Good luck and please make sure to come back and report how things went!!!


Sure will.:rolleyes: