Jump to content


Photo

Does She Ever Becom Stable?


  • Please log in to reply
4 replies to this topic

#1 Tutter

Tutter

    Member

  • Members
  • 19 posts
  • Gender:Female
  • Location:Denmark, North Europe
  • Interests:Mother to girl 4 year old, who probably have narcolepsy with cataplexia. Waiting for a 3 day sleeptest in nowember 2010.

Posted 03 July 2010 - 01:26 AM

We think that my dd 4yo might have narcolepsy with cataplexi and we believe she has experienced symptoms more than 3 years now. The problem is that she never seem to make any kind of routine despite our hard effort to make one. It's like this, she seems to change over weeks from insomnia to sleepiness and all the time she seems very tired. when she has insomnia it's hard to make her sleep neither for her nap nor at night and her behaviour is a lot of temper traums, she is hyperactive and she pesters to get candy or something else most of the day.

When she is in her sleepiness mode she can sleep up to 14 hours a day and can also have several short sleep attack a day lasting 1-2 min. a time her C also seams a little worse.

Anybody have a clue to weather she will be a little more stable?

#2 Saraiah

Saraiah

    Member

  • Members
  • 382 posts
  • Gender:Female
  • Location:U.S.

Posted 06 July 2010 - 12:20 AM

Hi Tutter,

I unfortunately don't have any knowledge of narcolepsy in little kids, but just wanted to encourage you in the terribly tough job you've got parenting a little one with this disorder. I wonder if it would be possible to find both a sleep specialist, and a child psychologist, who are knowledgeable about pediatric narcolepsy? The psychologist might be a tall order, but there's got to be a pediatric sleep specialist around here somewhere. Mali Einen, who's an administrative person at the Stanford Narcolepsy research center, might be a good person to ask, or maybe folks at Narcolepsy Network's office could point you in the right direction.

I'm thinking about a psychologist just because it can be so tough to figure out how to parent a little one appropriately when they're physically healthy. Figuring out what's reasonable when your daughter is coping with all the regular trials and tribulations of being four PLUS cycles of insomnia and hyperactivity and hypersomnia, etc., must be unbelievably complicated. I had a hard enough time figuring out how to parent my own two, who didn't develop any unusual health conditions till they hit adolescence.

I'll be thinking about you and your little one, and hoping that you find someone knowledgeable who can help you to find some clarity about your daughter's prognosis. Let us know how it goes.

Saraiah

#3 Tutter

Tutter

    Member

  • Members
  • 19 posts
  • Gender:Female
  • Location:Denmark, North Europe
  • Interests:Mother to girl 4 year old, who probably have narcolepsy with cataplexia. Waiting for a 3 day sleeptest in nowember 2010.

Posted 06 July 2010 - 06:58 AM

We are connected to the best sleepcenter in this contry, and I know they have also neuropsychologist there. They also specialize i epilepsy so we know them from when my daughter was younger and we all belived she had epilepsy.;)

It's so hard to find others with younger kids like mine, but I can learn a lot when I read your posts.

We also have a big sister, and yes even with a "normal" kid it's hard enough.:lol: I have ADD so half our familly is not quite normal.:rolleyes:

I will update you, have written a letter to her sleepdoc. asking about the test for hypocretin I read that the MSLT is not good in children younger than 6 years, so maybe it can be an option?

#4 paulie

paulie

    Member

  • Members
  • 5 posts

Posted 30 January 2011 - 11:12 PM

We are connected to the best sleepcenter in this contry, and I know they have also neuropsychologist there. They also specialize i epilepsy so we know them from when my daughter was younger and we all belived she had epilepsy.Posted Image

It's so hard to find others with younger kids like mine, but I can learn a lot when I read your posts.

We also have a big sister, and yes even with a "normal" kid it's hard enough.Posted Image I have ADD so half our familly is not quite normal.Posted Image

I will update you, have written a letter to her sleepdoc. asking about the test for hypocretin I read that the MSLT is not good in children younger than 6 years, so maybe it can be an option?



You are doing a great job!!!! This is a process. I say prayer is powerful... whatever higher power you believe in... it is nice that we can have each other

#5 Tutter

Tutter

    Member

  • Members
  • 19 posts
  • Gender:Female
  • Location:Denmark, North Europe
  • Interests:Mother to girl 4 year old, who probably have narcolepsy with cataplexia. Waiting for a 3 day sleeptest in nowember 2010.

Posted 03 February 2011 - 01:45 AM

You are doing a great job!!!! This is a process. I say prayer is powerful... whatever higher power you believe in... it is nice that we can have each other


Thank you paulie, but all my hard work has not paid off at all, I'm afraid. She had her PGE and MSLT in november and even if she have a short sleeptime at one minute, there was no SOREM on the MSLT, so no diagnosis... They can see she falls for no reason and that it's because of some sort of neurologic reason, but it aparently dose not look like typical cataplexy...:blink:

You can see for yourself on youtube:

Our local doctor can't make up her mind and find out if we should take a spinal tap on her or even test her blod, we have an appointment in june.:o

We try our best and make her sleep 1-2 hours at noon and most days she takes her nap and it helps a lot, but then she surdenlly hits a period where she has insomnia or she says that she can only fall asleep if she crys and screams at me for a long time first...:wacko: