25 replies to this topic

[pray4help]

Hello Everyone,

My name is Shonda and my 11 years old son was diagnose with Nacrolepsy about an year ago and it been very hard to deal with, we have tried so many different medications and he been kick out of school over six times this past school year, I took him to this doctor because of his anger issues she put him on Prozac,Abilfy, Tradazone, and Adderall they took him off the Provigil 200mg because it didn't work and I tell you when she but him on all this medication and I start receiving call every day, and suspend him every other week, so when school ended I took it upon myself to take him off of all the medication that they we prescribing, exept the Adderall he start doing real good but still was getting mad and a little moody and I took him to his doctor appointment on July 15th (meanwhile I didn't tell her that I took him off the medication she was still writing me prescrisptions out and I throw them away, She decide to tell me that the adderall cause mood swings, So she tried this new medication call Vyvanse 70 mg to keep him awake and focus he's doing real good no mood swings and he haven't been getting in trouble he do what I tell him, It's like I have my son back and playing sports help a lot.(all this started when I let the dentist put him to sleep they gave him to shots and it took about eight hours before he became fully awake.
And my son blames me for taking him to the Dentist, that's why he has nacrolepsy.

Any suggestions please let me know.

Thanks, Shonda

[pray4help]

Shonda, does your doctor think going to the dentist has anything to do with narcolepsy? my son had a tooth pulled 2 months prior to developing narcolepsy. the dentist gave him laughing gas - he did not have problem with it. my son has also blamed the dentist, his doctor for the flu shot and of course me for everything.
thanks for you information.

[Mike M]

I would doubt that a trip to the dentist could trigger narcolepsy, but recent studies have shown the PWN have a much tougher time recovering from anesthesia than people with normal hypocretin/orexin levels. I have also head good things about Vyvance from another PWN. She has found it to be a tremendously beneficial stimulant. The chemical configuration seems to allow it to provide a steady stream of amphetamine rather than timed releases by extended release versions, or natural absorption with basic amphetamine.

[N2tigger]

Hi my name is Amy and my Daughter has been recently diagnosed with N. She is 11 and in middle school. We are starting the process to write a 504 for her. Does anyone have any examples of what they asked for? I know an earlier post said it was very rare for N to run in families but we must be that rare family as on my husbands side of the family every generation has had it back to my husbands Great Grandmother.
Also my daughter's dr has started her drinking energy drinks / caffeine instead of starting her on drugs. Anyone have any advice for that? Also my Daughter still wets the bed and will be 12 in July is there a connection because of the deep sleep? She is also small for her age.
Thanks for all your help
Amy

[DeathRabbit]

The caffeine/energy drinks are definitely a bad idea. But I suppose it's the only option, given that a therepeutic level of Rx stimulants could be very harmful to her developing brain. Really, more and more research is showing that stuff like Ritalin and Adderall shouldn't be used before age 17, as it has a lot higher chance of permanently crossing some wires at those younger ages. I think, ideally, at her age, planned naps would really be the most effective treatment. I'm not sure what the previous poster is talking about as far as N not running in families; N is usually an autoimmune disease, and most of those have strong familial correlation. The genetic defect that causes N can actually also cause MS, and ALS I believe as well. As for bed wetting maybe there is a correlation between N and bed wetting. Although I didn't have N symptoms at her age, I wet the bed until about 12-13 and even once when I was 20. It was entirely due to the vivid dreaming, which would trick me into believing I was using the restroom in my dream.

[2Tired4This]

Hey N2tigger. I completely agree with DeathRabbit about the energy drinks. I just turned 17 last month, and prior to that I was downing Monsters, 20oz Coffees, Rockstars, Redbulls, anything that would help me stay awake. Eventually I realized that while it provided no increase in alertness it definitely caused me to crash after. CAFFEINE AND SUGAR just make things worse for Narcoleptics. Some people do see a result from their coffee drinking, but it just made things worse for me. 

 

Death Rabbit, it's funny you mention the wetting the bed thing. While I don't like to admit it, it happens once in a blue moon still. Up until I was 14 it was almost weekly. Every time it happened I would be peeing in a dream too. Things were just so natural and vivid that it seemed wrong not to pee in my dreams.  I still pee in my dreams but somehow i've trained myself not to actually pee. I didn't think this was anyhow related to N but I guess it is haha.