9 replies to this topic

[susan hamilton]

My son, almost 12, is having a hard time controlling his emotions. He has talked to a professional but I think as he matures he is going to have to learn strategies to get himself to calm down. He rarely loses his composure at school, mainly it is at home when he is asked to do something he doesn't want to do. Do any of you have this problem with your children and how do you handle it? Susan in Charlotte

[merrymom1013]

Is he crashing as his medication wears off? Not to excuse his behavior,but could he just be too sleepy? My daughter tends to use up all of her energy being "just fine" in front of others, then will crash at home. If he is keeping up with school & friends, he may have nothing left for the one more thing you ask of him. The other thing to consider is his age- how different is his behavior compared to other middle schoolers? Puberty is not always pretty.
If you see a continuing problem, continuing counseling to help him deal with growing up with a chronic health issue could be helpful.

[ammey]

Hi, I am new to this site. I have an 11 yr old son with Narcolepsy. We think w/out Cataplexy. (He falls to the ground but seems on purpose to me?)

I know many adults whos moods are affected by fatigue, or lack of sleep, for my son it is the same. He tends to be more volatile, moody, anxious and impaient when he is sleepy. Although I understand it, it does not make it easier to deal with on a daily basis.

He holds it together at school now, but before the diagnosis and Provigil, he just could not keep it together at school. The new school he is at is clueless about the Drs orders and flatly refuses to give him a quiet place to nap.

Don't forget the hormones at this age too! I have a 14 yr old as well, and he got pretty emotional at this age too. He also has medical issues. It is a lot to deal with at this age.

ANyway, I am so glad to have found this forum. I cannot tell you what a relief it was to find the words children + narcolepsy together!

[KFoster]

Yes, my son who is 9 years old has all of these same struggles. I do get impatient with it sometimes and I have to constantly remind myself that he is always groggy and unalert. I just think that he is grumpy because of how his body feels. I try to tell him that I know he is feels bad but he still has to be respectful and use good words, even if he doesnt feel good. It also helps me a lot when he can tell me "Im so tired" because it reminds me what he is dealing with. That in turn takes me off the defensive. I would be happy to hear how other parents handle it. I could use some ideas.

[Cryopathic]

Hi Kim Its me Tony.
How are you and alex doing?
I'll see you at the next NN meeting ok?

[Toph4er]

My guess is that about 80-90% of the outbursts come from the hormones, but narcolepsy is a factor. It is harder to control your emotions when you are tired, and as stated, if he is using up all his energy at school to stay calm you may just be dealing with the crash. I know I am typically a calm passive person...but when I get really tired I can snap (especially at my younger brother) over near nothing. I regain composure after a few seconds, luckily, and shortly thereafter realize how stupid I was, though it is sometimes hard to admit that part . Oh yea, and I'm 19 so it won't go away overnight, but the next 3 yeas should contain the worst of it and it'll level out. Even if you feel bad for him though, you are right, it is no excuse to be disrespectful and even we angels () need some discipline to help us we still need to be responsible people every once in a while. I think the best thing you can do when he gets angry is keep quiet, don't snap back at him. He should begin to realize on his own how stupid his complaints are, but it won't be overnight unfortunately. And if/when you punish, wait for him to calm down before you deliver the sentence or he will likely remain belligerent. Now, this is all from experience with my brother...he may respond differently so don't even think about taking my word as law!

Heck, try to humor him and have fun as much as possible. Don't just be a friend, but you don't want to be a block wall either!

Chris"Toph4er"

[caligirl]

hi susan im not a parent but I am a teenager that is also dealing with narcolepsy.I have only know for about a year now and i probably can relate to your son i believe it is?there has been many instances where i have had outbursts at my mom especially and in all honesty we dont choose to lash out on you its just at home is the only place you can let that shield down.at school many times i feel anxious like whenever i get a little drowsey or when my head falls over during a boring day in class i immediately feel like wow i wonder who secretly saw that happen and is wondering why is this girl sleepy so much.i have learned to open up more to my friends but it is truly to educate someone who may not want to be educated.many people do not understand let alone know what narcolepsy is and i have accepted that being in high and trying to hide a part of me that i have not yet fully accepted.the more your child learns to cope with narcolepsy the he will probably mature and maybe be more open towards it,but as far as the emotions it is hard and it is not an excuse to get out of every chore but it is something that many times sitting down and tackling it head first and discussing it can help.

[chellez]

I hope that I can help.
It's my husband with N, we do have a daughter diagnosed with Bipolar Disorder. But now we think it may be N instead (taking her for testing to see).
Over the years we noticed that it was very hard for her to keep her emotions in check while she was at school and then would have to decompress when she got home. All of us, including her 2 sisters and 1 brother needed to be able to walk on eggshells incase she had a "bad day".
We have been fortunate enough to have teachers and programs that are willing to offer "time out" spaces and allow her to nap if she needed to after an emotional outburst in the classroom.
My advice is to try to keep a pleasant routine at home that is consistant.
I tend to let her come home and have a snack and unwind while watching tv.
She's 18 now and still has to have the same after school routine, but it does get easier.
I've also learned that if they want space, it's best to give it to them until they are calm.
My thoughts are with you all dealing with kids with outbursts.
Michelle

[Mitzi]

Michelle- Did you ever find out if your child has N or BP or both? We have a 15 year old dx'd with BP, but we are now wondering if it hasn't been N all along? We have had the outbursts for years and the psychiatrist thought it was mania. But, maybe it was just extreme irritability from being so tired all the time???? I'm curious as to what you found out. Thanks. Mitzi

[paulie]

My son, almost 12, is having a hard time controlling his emotions. He has talked to a professional but I think as he matures he is going to have to learn strategies to get himself to calm down. He rarely loses his composure at school, mainly it is at home when he is asked to do something he doesn't want to do. Do any of you have this problem with your children and how do you handle it? Susan in Charlotte

I understand what you are saying. With narcolespy everything is so depleted, brain hormones, adrenals etc. it is a constinant thing balancing hormones and trying to keep them up... one of the many facets of treatment that we used was to teach out son how to cope with the dx, and how to cope with being so tired. i search for someone int his area of expertise... she was great , she gave him tools of everyday living to help him express himself , and things he could do to know what he needed at a given time. We now are having issues with proper meds... and diet. this is definitly a team effort... I too had to go to therepy to come to terms witht his dx. I compare my sons outbursts to that of a baby that is over tired and needs a nap, but wont sleep... he is just bigger and so are the tantrums lol