13 replies to this topic

[melissa29]

My 6 year old daughter has narcolepsy, she was just dignosed with it about a month ago and it was very hard to deal with at first.
She has to go take a sleep test still and be put on medicine.
How do you deal with it with a kid that has narcolespy?

[merrymom1013]

It's not easy. Check out the recent NN newsletter- there is a story about a boy about your daughter's age. My daughter is almost 15- she started showing symptoms almost 5 years ago. In our case the cataplexy & other symptoms were so severe that we didn't think twice about trying medications. You need to educate yourself- I ordered several papers, tapes, cd's from NN and spent hours searching the net. You need to figure out what will help her in terms of school accommodations & educate the school. She has a legal right to accommodations and special education if necessary, but your school won't know what your daughter needs- they won't have had a lot of other 6 yo narcoleptics. You need a great doctor who can work with you. In our case, that wasn't at the area childrens hospitals with the great reputations, but a neurologist/sleep specialist who sees quite a few people with narcolepsy and only a few kids. Feel free to contact me and the other parents you will find. I have 20 years in special education as well as being a mom of a teen with narcolepsy .

[KFoster]

I would be happy to talk to you Melissa! I am the one that wrote the NN newsletter article on my 9 year old son. We have tried many of the stimulant medications. Give me a shout and we can discuss.

take care, Kim

[susan hamilton]

I have an 11 year old son with N and cataplexy. He has been correctly diagnosed for 3 years after being misdiagnosed for 1 year with epilepsy. It has taken a while to find the right medications but he is doing well currently. We keep him very busy but allow times to rest. I will be at the NN conference in San Diego (if the fires don't keep us away) and would love to meet any of you if you are going. We live in Charlotte, NC and know of no one else with N. Susan Hamilton

[KFoster]

Susan,

Nice to hear that you are going to the conference. We cant make it this year unfortunately but if you ever need to talk we are here. We havent been to a conference yet but hopefully we can go next year.

Keep in touch. - Kim Foster

[susan hamilton]

We went to the convention two years ago in Boston and that is where we met the great folks at Stanford (Dr. Mignot). He is the keynote speaker in San Diego. Our family of 6 flew out to participate in a research study. My son is now on Xyrem (which has changed his life) and Provigil and Effexor.

[KFoster]

Someday, we will get to meet Dr. Mignot. I wish we could be there for that speech. Xyrem has made a huge difference for my son too. Our local hero is the pediatric sleep specialist that we were fortunate enough to find: Dr. Robert Meny. He has believed in us and listened to us and done all the right things to help us.

[Marinaki]

I am 26 and from lately the more I think about it the earlier I remember showing symptoms. My heart breaks for these children that are too young too fully comprehend what is going on within them and that it is not their fault, which is difficult enough to get another adult to understand.

I am glad to see that there are parents out there who are proactive about getting their children the medicinces and drs. that they need to help them lead a happy functional life. My advice would be to stay positive when speaking to your children about their conditions and try your best to empathize with what they are feeling. There are going to be days that they feel their symptoms more so than others, and days that even medication they are not going to be able to fight those symptoms either.

And I know that there are days when you as a parent will get frustrated with your childs symptoms as well... just please try your best to explain to your child that it is ok to be frustrated as well, but it is ok to keep your smile as well. My mother made the mistake for years of calling me lazy and stolid and that killed me cause so many years and a diagnosis later my mother thinks it's all still imaginary... and her favorite thing to tell me is that I am Lazy and with out a memory... which kills... to this day.

Your child will forget things he/she didn't mean to forget, please do not tell them they are forgetfull but rather ask them kindly to return it to it's place.
your child will fall asleep at a concert in the park or in a crowded ampitheater, or on the ride home in the middle of the day; please don't tell them that they should try harder to stay alert on and that they are being rude.
your child will miss play time some days because they are in the nurses office sleeping, nauseous from fighting their sleep attack, please do not tell them that they are faking symptoms for sympathy.

There are days when it's easy and you wonder why the hell you are so awake... until you sit down.. .then it all hits you. There are days when you are exhausted and you cant sleep at night cause you slept too much that day. There are days when you have nightmares night after night and their intensity gets worse. There are days when you feel you cannot wake up at all. There are day when really all you need is a hug and for someone to understand that no matter how much you are interested in what is going on your eyes will have to shut and your body will force you to rest... somewhere all we need is a place to rest our weary head.

so please the best gift you can give your child aside from medications, is empathy and understanding, because it is ok to be so tired.... because after all we are not lazy we are just tired.

we can play sports and we can have fun we can smile and we can laugh even though our knees might give... lol. we can work and some of us can still drive. we can be functional members of society. remember it's the passive situations that make it worse... stimulation keeps you motivated to come around this 'disability' and embrace it as part of your entity.

[merrymom1013]

Thanks. I'm so sorry that your story doesn't have more of that support.

[melissa29]

Thanks Im sorry that your mom said that stuff to you. If you want to talk we can.

[janetj]

We have a 5 year old daughter has IH. we have been told that by the age of 7 she will either have grown out of it , or be diagnosed with narcolepsy.
We are in the UK, and are struggling at the moment. Feel rather alone as she is so young.
She has hallucinations and eds , she is not on medication at the moment. Ritalin has been suggested.
She is expected to have another mslt soon.
She also has been diagnosed with underactive thyroid (AI), and is on thyroxine.
We find that with regular sleeps and coke to drink at school she gets by. She tends to 'fall off the wheel ' at home, tired etc.
Trying to 'live with it', rahter than let it control what she does.
Please contact if you relate to any of this!

[Protectionlady]

wow. this is sad, but AWESOME. I hope yall understand. Im 36 and living in Ga, it took me four and a half years of sever cataplexy attacks to get a correct diagnosis, and after putting a report of my medical together and educating south Ga doctors, i also realize, Im in a bubble. I totally relate to the posts on here, and I feel like Im not alone anymore. It became something no one heard of to learning about it, and hopefully one day understanding it's effects on us, and knowing we're not LAZY.Getting a correct diagnosis made me unerstand my past more with over 20 years of EDS and occassional blackouts. The doctor says my 8 yr old has symptoms and probably has it, but wait until it effects her life. She's an A student. What should I wait for? the cataplexy to hit? Just wondering what you guys think. I know the meds have alot of side effects. Her body is growing, I just don't want her to miss alot of opportunities I walked away from.

[merrymom1013]

As parents who are already aware of the problem & watching closely, you will know when to try medication. Maybe when cataplexy hits, maybe when the EDS gets in the way of school, friends, whatever. With narcolepsy, you are likely looking at a lifetime of medication, so the longer you can wait the better in many ways. My daughter was 11 when we figured things out. The decision to try medication was a no brainer- the side effects were nothing compared to the symptoms.

[paulie]

I would be happy to talk to you Melissa! I am the one that wrote the NN newsletter article on my 9 year old son. We have tried many of the stimulant medications. Give me a shout and we can discuss.

take care, Kim

I dont remember that article . how do i get a copy to read... my on is 10 now and we are trying effexor 75mg and provigal 100 mg, takes xyrem at night .... what do you think gina