narcolepsy . . . cataplexy

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Permalink Reply by RockRpsgt on September 1, 2011 at 0:28

A PSG is not designed to assess narcolepsy. It will however help in accurately defining the problem. The proper way to go with this would be a PSG followed by a Multiple Sleep Latency Test(MSLT):

 

http://en.wikipedia.org/wiki/Multiple_Sleep_Latency_Test

 

The PSG would rule out other sleep disorders and ensure that nothing else is disrupting the childs sleep. The MSLT measures fatigue and the persons ability to fall asleep. These 2 test together will help in determining if narcolepsy is the problem. If you do go this route I would suggest talking to your doc about runninng the PSG as a Full Hook-Up or Seizure Study prior to the MSLT. This type of study would allow the tech and doc to monitor for seizure activity. If nothing is found on these studies I may suggest a daytime EEG to look into the possibility of seizures. My wife is an EEG tech please let me know if you need anymore info.

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Permalink Reply by Kath Hope on September 1, 2011 at 0:55

Sorry to hear this Carol.  Here's a very informative site about these conditions http://www.end-your-sleep-deprivation.com/

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Permalink Reply by carol murphy on September 5, 2011 at 22:58

Thanks for the information guys gives me some info before paediatric appointment next monday

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Permalink Reply by Kath Hope on September 6, 2011 at 1:06

Good luck Carol and keep us posted please :)

carol murphy said:

Thanks for the information guys gives me some info before paediatric appointment next monday

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Permalink Reply by Kath Hope on September 9, 2011 at 11:05

How did the appointment go Carol?

carol murphy said:

Thanks for the information guys gives me some info before paediatric appointment next monday

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Permalink Reply by carol murphy on September 9, 2011 at 11:13

Hi Kath

 

Its on Monday ..... So will post when I have been to update , I doubt we will get much further probably just organise some tests 

How are  you doing Kath ?

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Permalink Reply by Kath Hope on September 9, 2011 at 11:15

Oh, I thought it was the Monday just gone.  I'm good thanks - very busy, but thanks to CPAP have the energy to cope with it all ;)

carol murphy said:

Hi Kath

 

Its on Monday ..... So will post when I have been to update , I doubt we will get much further probably just organise some tests 

How are  you doing Kath ?

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Permalink Reply by carol murphy on September 14, 2011 at 9:43

Just an update looks more likely its absense seizures will have an EEG in the next 4 weeks .....Interestingly if hes more tired he will have more episodes ..... also I have read that they can be caused by hyperventolation .....My mind is now working 100mph ..... are his desats from seizures in sleep or his OSA ...... some of these answers will be revealed with the PSG which is in NOVEMBER !

 

 

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Permalink Reply by Kath Hope on September 14, 2011 at 10:41

Thanks for the update Carol.  Roll on the EEG + PSG to give a clearer picture.....

carol murphy said:

Just an update looks more likely its absense seizures will have an EEG in the next 4 weeks .....Interestingly if hes more tired he will have more episodes ..... also I have read that they can be caused by hyperventolation .....My mind is now working 100mph ..... are his desats from seizures in sleep or his OSA ...... some of these answers will be revealed with the PSG which is in NOVEMBER !

 

 

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Permalink Reply by RockRpsgt on September 18, 2011 at 5:29

Yay for the right test! I would suggest again that you request a Seizure-related-PSG. A normal PSG, which is a modified EEG, may miss the seizures as they don't monitor the right areas. Even if the doc can't be persuaded you can ask the tech to monitor the Temporal areas(T3, T4,T5,&T6). Most PSG software either has, or can be modified for this purpose.

 

Good luck!

carol murphy said:

Just an update looks more likely its absense seizures will have an EEG in the next 4 weeks .....Interestingly if hes more tired he will have more episodes ..... also I have read that they can be caused by hyperventolation .....My mind is now working 100mph ..... are his desats from seizures in sleep or his OSA ...... some of these answers will be revealed with the PSG which is in NOVEMBER !

 

 

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Permalink Reply by carol murphy on September 18, 2011 at 18:57

Kath I totally agree and we have the eeg on wednesday at 1pm 9 days after referral and its NHS :) 

 

Rock thank you so so much for your information I really appreciate it 

 

Today Jaydon woke from a nap around 15 minutes in screaming and then crying like in pain I took  videos of what followed I noted his left toes hyperextended and his left hand was cupped and he wasnt using it links below if anyone has any knowledge I would love feedback 

 

http://youtu.be/AOcRHtGoP5s
http://youtu.be/qsXXKgwckbc
http://youtu.be/2dDAFol9i4w
http://youtu.be/cSUP9UpqEMk

 

Will keep you posted oh the PSG is definately November sometime !

 

Carol 

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Permalink Reply by RockRpsgt on September 19, 2011 at 0:44

Now I could be wrong and every case is different. From what I know about absense seizure is that they are considered the quiet seizure. When they occur it will be very subtle. My wife explains it as you get locked onto an object or some thing. Almost like they are daydreaming or not paying attention.

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