11 replies to this topic

[greatbig47]

qanobi,

I can imagine how scared you must be.

Is this report for YOUR child, or another report you ran into? The answer might be obvious, but your post was a little unclear, and I wanted to be sure.

In ANY treatment, know that you have the power to say "No". It's okay to not start any medicinal therapy until you feel 100% okay with that. As a parent, you have that right. Another minute-day-year of narcolepsy/cataplexy isn't going to endange your child. It's okay to relax and investigate the best medications.

3 is young. I've had narcolepsy w/ cataplexy since I can remember. I never had any medication until I was diagnosed...at age 36!

If there is any urgency, it seems like it would be to find out if it could possibly be something else (as indicated in this report mentioning scabies...but even with that, remember it's okay to say, "explain that to me" as many times as you have to, and ultimately you are the decision maker.

Love and Prayers,

-Stu

[merrymom1013]

Qanobi,
It does take awhile to find the right medicines & dosage. Everyone is different. You need to keep letting the doctors know what is or isn't helping and what side effects concern you. Your child can't let them know, it is up to you. Three is very young, so finding the right treatment will be harder. Yes, the medicines are powerful and scary. My child was not so young when diagnosed (11), but I was able to deal with the worry about giving her powerful medication by thinking that the alternative was her not being able to function. The mention of speech delay and possible autism symptoms also make it tougher. But I would ask another question of the doctors: How could a child sleeping 18+ hours a day be awake and alert long enough to develop speech and social skills? If help is needed with those areas, he needs to be alert enough to benefit. Be patient and keep asking questions.

[Toph4er]

Even WITH narcolepsy, I would not medicate at 3 years old. Not unless it is very severe, this report is a little unclear about exactly how critical alertness is...or maybe I'm just not awake enough to read it right! However, I do not think those doses are all that high, even for a child. I just wouldn't want "chronic" medications entering the body at such a critical growing age, it's not like Tylenol you take a few times and then stop...but that is JUST ME. Talk with your doctor first!!! I'm just a random nobody behind a computer screen who knows nothing about you!

It never hurts to check for other causes either
Chris"Toph4er"

[gurlzylla]

I certainly hope that you have had some resolution to your child's condition by now. If not, I would suggest that you contact a neurologist IMMEDIATELY for a second opinion. It may also be beneficial to see if there is a way to continuously monitor him with an EEG for a couple of days. I know this type of test exists for seizure studies, maybe it could shed some light on whether or not these are seizures or seizure-like atacks. You may also want to ask for an MSLT to confirm the diagnosis of narcolepsy... from what I have been told you need both sleep tests to confirm a dx.

By all means, consult a second doctor. We know oodles about living with Narcolepsy... but far less about diagnosis, especially in light of your son's presentation!

Best of luck, please let us know how everything turns out!

[Bobbie]

My child had narcolepsy as this medical reporet said but I am afraid from tha medacine that had given becouse I think it is very strong for my child . Please give my your advise about good medacine for the age of my child.


MEDICAL REPORT :( :(
"Three years old boy presented with excessive sleep, about 18 hours a day for more than a month. The patient slept during sitting and could not resist it. It was difficult to arouse by mother. There was also history of inability to sit erect and get repeated attacks of posture loss. In addition some abnormal movement of hands during sleep for a few minutes. After waking the patient is alert but soon after become lethargic and goes to sleep withen 2-3 hours. He sleeps during the night. There was no history of fall, trauma and seizure like behavior during wake.

The examination was normal. Several investigations were done including Video EEG and Polysomnography. CBC, Glucose, Bone Profile, UE, LFT, Ammonia, Lactate, Blood Gas were all normal. TFT was normal. Routine EEG was normal. MRI Brain was normal 24 hour video. No epileptic waves seen during the study.
Polysomnography suggestive of narcolepsy.

The child was started on Methylphenidate and Imipramine, as Sodium Oxybate was not available. There was remarkable improvement. Excessive sleep and cataplexy stopped. However, new findings were noted. The child became in between withdrawn and speech output was decreased. He would play and react with other children. On history it was found that the boy had from beginning the delayed speech and poor interactions with the children.

At present the child was on Imipramine 10 mg a day and Methylphenidate 5 mg twice a day. It was planned to sent the report outside Oman for a consultation. Meantime parents approached for a medical report. In last outpatient visit Dermatologist opinion was sought for possible scabies. Emovate Plus Eurax was advised on the Dermatologist advice."

[Bobbie]

I just can't imagine a child of 3 who has to deal with Narcolepsy & Cataplexy. That is the youngest age I have ever heard of. I have had severe Narcolepsy & Cataplexy almost all of my life (65 yrs old) but it didn't start when I was that young. Most cases start after puberty. The drugs mentioned sounded logical to me but being that he is so young, perhaps the doctor treating him hasn't made enough adjustments about the dosage prescribed. If you feel he is getting too much medication, then lower it & watch closely what happens. Keeping a journal regarding his progress is a must. I would also watch closely what he eats. The additives allowed to be in prepared foods these days is shameful and causing havoc in the bodies of almost every American. I would not allow him to eat anything prepared, unless you yourself make it from scratch. No products from Cows or Beef. No storebought eggs. Fresh fruits & veggies, nuts, natural peanut butter, homemade bread are good sources of protein and I would research to find alternate sources of calcium. Only 100% juice beverages with no sugar added.
None of that "cocktail" (15% juice) stuff. At this point, what he ingests is just as important as the drugs he is being given. I have a friend who sniffs essential Cardamon oil when he starts to feel sleepy and it seems to stimulate him to stay awake. I have no idea if it works for everyone, but it helps him.
You have a mighty tall mountain to climb. My heart goes out to you.

Blessed Be,
Bobbie

[Toph4er]

Oh, yeah, journals! I always forget about how important those are...you'd think I'd use some. They are especially valuable to doctors for providing better treatment. Someone here should make some good sleep/daily journal print-ups for doctor ed-ju-cay-shon usage.

Chris"Toph4er"

[sleepyavon]

Wow, only three years old! I really empathize for you, as a narcoleptic with bad cataplexy, I can imagine how impossible it would be to raise a child with the same problems at only three years old, a time when they should be jumping around and exploring, learing. I was 20 when my narcolepsy began onsetting, 21 when it got really severe, right after 9-11-2001, when all the axilliary symptoms exploded.

I would really want to make certain that your child's doc is a board certified sleep specialist, and is very aware it is a child he/she is dosing for. Explore all possible diagnostics, to ensure, his sleepiness isn't due to anything else. The best thing you can provide him is loving support and understanding. I am 27, but still need my parent's and husband's help and caregiving everyday. Thank God for them. They make all the difference between being homeless and alone or having shelter and being loved.

[sleepymom]

Qanobi,

As a mom, you know what is best for your child. If you feel the medication is not working, then most likely it isn't. I have both narcolepsy and sleep apnea. We will get the results in 2 days from my 6 year old son's sleep and nap study. I think he is probably narcoleptic, too.

However, what I really wanted to talk to you about is getting help for your son's speech delays. I live in Texas, so I can only speak about the educational laws here. I was an elementary teacher for 9 years. In the state of Texas, any child has the right and ability to receive FREE testing and services. I imagine that many states have the same law. Even if a child is not school age, they are eligible from the day they are born. In Texas, you would contact the neighborhood elementary school and make an appointment with the speech teacher, and possibly special education team leader and principal, too. You would take any outside speech testing that has been done, plus other medical reports. You would request, in writing, that your son be evaluated for possible speech delays. Once the school has all the necessary paperwork from you, they have a set number of calendar days to complete the testing, write the report, and go over it with you. It is up to each school district to determine the qualifications for speech services. However, if your son qualifies, then you would have another meeting to set up a schedule. He would then go to the elementary school to receive FREE speech therapy each week. Also, you can request emotional testing, as well. This could possibly help with any need for play therapy. I would think that only being awake 6 hours a day from narcolepsy would be a good qualification for play therapy....he simply has not had the opportunity to develop those social skills on his own. This could also fall under the "Other Health Impairments" label for special education. That means he has some medical condition that is not allowing him to learn/function properly and needs help from the school If your son is having trouble sitting up on his own, he might possibly qualify for physical therapy. Again, all of this is free...IF he qualifies. There is no shame in trying to get your son all the help he deserves. The more help you get him now, the less he will need later. It is extremely important to try and catch him up with his speech delays. These next few years are vital for speech development in children.

I hope this helps a little bit.

Take care!

[caligirl]

i couldnt help but read your post and despite the fact that i am 14 years old i might be of help.i was diagnosed about a year ago and have had sleep studies as well the medication I was put on provigil for my daytime sleepiness.my mom and I took a trip down to stanford medical center and i actually met and conversed with the founder of N. I was wondering if this child was ever diagnosed with N?

best of luck,
caligirl