Jump to content


Photo

5 Yr Old With Narcolepsy/cataplexy


  • Please log in to reply
2 replies to this topic

#1 Taylenne

Taylenne

    Member

  • Members
  • 10 posts

Posted 07 June 2011 - 01:02 PM

My 5 yr old daughter was diagnosed with Narcolepsy and Cataplexy about a month ago. She had a severe pneumonia in late February. In mid-March the daytime sleepiness started. Early April the cataplexy started and progressed over the month from a head drop/shoulder slump to a full body collapse within 3 weeks. The doctors we saw were amazing! Everyone took our story very seriously and she got an immediate CT scan, MRI, EEG, nighttime sleep study followed by MSLT nap study. We refused the lumbar puncture. The neurologist diagnosed her in mid May based on her symptoms and her MSLT, which was consistent with narcolepsy. We also have a strong family history - my uncle has narcolepsy with cataplexy, and it's very likely that my mother and myself both have a mild case of narcolepsy (without cataplexy), though we've never been tested or diagnosed.

When we realized there was something seriously wrong (early May), we stopped sending her to school. Since then, the school has been in constant contact with us and has been very supportive, both emotionally, academically and from a safety standpoint. After receiving a letter from our neurologist about the safety concerns of a 5 yr old with narcolepsy and daily cataplexy attacks, the schoolboard approved an educational assistant for her. She is now back in class and everyone is happy about that! She only ended up missing about a month of school. We've been told that for next year, they are placing her classroom on the main level (rather than on the 2nd level) to minimize her need to climb stairs. They are taking her safety extremely seriously. I am very grateful for that.

Currently she is in half day kindergarten, but in a few months when she starts grade 1, she will attend all day. I worry about how that will affect her. She is on a great nap/sleep routine at the moment - wakes at 7am, naps for 2 hrs from 12-2pm, goes to bed at 7pm. When she's awake, she's alert and lively and full of energy... when it's time to sleep, she drops like a rock and falls asleep within 2 minutes. She claims that she sleeps well at night - she rarely calls out for me at night.

To address her cataplexy, we started her on prozac. We are still on the "test dose" of 2 mg daily. We are scheduled to increase to 4 mg at the end of this week. Our goal is to get to 8 mg and wait to see if it helps the cataplexy.

It's nice to finally find some other parents who have young children with narcolepsy and cataplexy. I have been feeling very alone in this.

Taylenne

#2 merrymom1013

merrymom1013

    Member

  • Members
  • 150 posts

Posted 07 June 2011 - 10:21 PM

Sounds like you have been lucky in getting a diagnosis & treatment plan so quickly & in having the school on board. The school plan sounds good. Having a good doctor & good school team on your side will make the changes ahead easier. The best you can do for now is to plan what accommodations will be needed for the next few months or year.
Can she take a short acting stimulant at school around lunch time? Can she have a place to nap at school or a shorter day if needed?

#3 Taylenne

Taylenne

    Member

  • Members
  • 10 posts

Posted 08 June 2011 - 07:17 AM

Merrymom said:
"Can she take a short acting stimulant at school around lunch time? Can she have a place to nap at school or a shorter day if needed?"

The school has already discussed the options around giving her a chance to nap between 11-12 noon, or possibly from 12-1pm, depending on what will be best for her. Alternatively, I could bring her home at lunchtime to feed and nap her though this would be after trying the naps at school. I think disrupting her school day by coming home might not be the best option. At home she would want to sleep much longer, whereas at school, she would probably want to get up and get going sooner.

We want to avoid giving a stimulant for the timebeing, unless it becomes necessary for her academic needs. I recognize that there will be social needs for more alertness down the road but I'm not expecting that to be a big problem in the next year. I also don't think we've seen the worst of the sleepiness yet. I've heard it can get much worse during adolesence.

It sounds like we've been very lucky with our school/schoolboard. All my requests to keep her safe were honoured without delay. I asked for an adult to hold her hand on the stairs. I asked that she not be allowed to play on the outdoor play climber. I asked that she have supervision while she eats. And I asked that she have additional supervision during gym class. The neurologist recommended that she have additional supervision when walking, standing or play with/around other children, especially at recess. All this resulted in the schoolboard providing an EA to "shadow" her throughout her school day.

Here's another question: Do other parents of younger children (under 8) with cataplexy provide head protection against cataplexy falls? Our neurologist recommended a soft helmet for her to wear at all times. We ordered a custom made soft helmet which is so cute that the girls in her kindergarden class all want one too! It gets passed around and all the girls gets a few minutes to wear the "princess hat" as they all call it. Too cute! I do worry though, what kind of stigma wearing a soft helmet will create for her. She's a bright, intelligent, popular kid. The kids in the class look up to her. I hope this doesn't change just because she now looks a bit different. Any thoughts on that?

Taylenne