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9 Year Old Son Without Cataplexy Given Concerta


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#1 myriah224

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Posted 29 October 2012 - 07:11 PM

Hello!



I am new to this. My son is almost 10 and I beleive has had symptoms of narcoplepsy all his life. As a baby I thought he was just a great sleeper. It was not until he started school that a problem was noticed. In second grade the naps and rest time at school stopped and that is when the complaints started. The teachers would send notes home almost every day saying my son was alseep in their class AGAIN. After many talks and conferences and test the doctor said he needed his tonsils and adenoids removed. No change in his sleeping during the day. I finally asked for a sleep study and he was diagnosed with Narcolepsy without Cataplexy. The neurologist prescribed Concerta 18mg extended release tabs.

My concern is that I have no idea what time to give it to him. I have read where people take short naps during the day and other things to help. I do not want to just give him this medicine without trying some other options. Of course you read the side affects and it just makes you not want to give him the medicine. But he needs help. Maybe I am in denial that he needs medicine and this may be something that MOMMY can not fix! I would like some input from other people that can remember how this was in the beginning.

#2 DeathRabbit

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Posted 30 October 2012 - 10:10 AM

More important than naps, IMHO, is to standardize his sleep times. Try to figure out what time he needs to rest and for how long, in order to feel his best, then keep him to that pretty religiously. He's probably going to need the stimulants, though. Behavioral modification can only do so much.

#3 tjunderw

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Posted 30 October 2012 - 08:37 PM

Hi Myriah,

It's understandable to have reservations as a mom about medicating your child, but you also want to consider what will benefit him most. I would certainly try your best to regulate his night time sleep and try naps as time permits, and if things are not improving you can try medication...and there are many medications, dosages, etc to choose from if you are not satisfied. Does your son have an IEP or are you aware of the educational options for a student with a disability- though I use disability lightly. I am a speech therapist (and narcoleptic!) in the school systems and there are many educational accomodations he would probably qualify for depending on your school's services/procedures. Getting the school on board with his treatment is really important I think, as they (almost positive) should be able accomodate his needs with daily scheduled naps, breaks in the day to avoid becoming drowsy, or access to an aid for note help or keeping focused on core classes. As hard as it can be to consider the need for help, medicinal or educational, the fact of the matter is that the demands placed on students will only increase each year and the sooner you find a schedule that works, the easier things will be in all aspects of your son's life. I think it shows great responsibility to explore your choices rather than just giving him medicine with no second thought to a better suited option. I only wish that I would have gotten my diagnosis earlier, and I believe that early intervention will keep your son right on track to reach his full potential moving through school.

A little tangent, sorry...but start small. Try a consistent bed and wake time, daytime naps if time is available, and be your own advicate! With narcolepsy still being an under-represented disorder, doctors often give you one option only so make sure to speak up if medication is not working or causing side effects. I'd also suggest getting in touch with your school administration if you feel he has needs that could be addressed during school hours. I hope any of this is helpful!