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This page or section will be devoted exclusively to children and HNPP. Parents and children are encouraged to share their stories, their issues with school, friends, siblings etc.

 


A letter from a child with HNPP

by William and AFL Vander Klok

Hello! My name is William. I am 9 years old. I live with my parents and younger brother in Northern Alberta, Canada. I am home schooled and will be doing grade 5 through cyberschool in September. I have a paper route and two ferrets. I have HNPP.

On December 22, 1999, I bumped my right elbow while climbing into bed. My right hand was numb for two whole days. My hand felt like it wasn’t there; everything I touched felt funny and it didn’t want to do anything I wanted it to do. I was unable to write or tie my shoes or play video games. It was annoying and a little scary. I knew I had the same thing my dad has – HNPP.

HNPP is a rare nerve disorder. It means the nerves are easily damaged by pressure, stretching or repetitive use. It is like when your limbs go to sleep but it takes longer to regain normal feelings. It could take days or months or years for the nerve to recover. HNPP is not contagious – it is genetic. I inherited it from my daddy.

I have to be careful, now. I need to try not to bump my elbows, or lie on my arms. I have to watch what I am doing with my hands – I don’t always feel like I am holding or touching something when there is something in my hands. Sometimes hot things don’t feel hot to me, either. I have to be careful about how I sit so I don’t put my legs to sleep. It is hard walking on uneven ground. I fall off my bike more often. I get tired out easily.

I am unable to type or write for very long. After a little bit of schoolwork, my thumb and fingers go numb – Mom says it is carpal tunnel type problems. So, I have a special program on my computer for school. It is a voice recognition program. I can talk to the computer, and it types what I am saying. It takes a long time to train. My mom helps me write down the answers for math.

I still do everything I’ve always done. Some days my hands bother me; other days I feel fine. Some things I have to do differently or take longer or ask for help to do them. If I play video games or building with K’Nex for too long, my wrists hurt. But I do them anyway because I like to do these things. Some days I have problems doing up buttons and using the can opener, but Mom helps me. I don’t mind not being able to write much because I hate to write. Sometimes I get frustrated, but Mom is always around when I need her. Mom makes me do my chores even with numb hands.

I go to see the OT (occupational therapist) at the hospital. Loraine is fun. We play games and stuff. She gave me some TheroPuddy to play with – it is supposed to help strengthen my hands. She also made me a wrist splint that I wear at night.

Once I went to the dentist and my face was numb for a very long time. My appointment was in the morning, and it still felt funny at bedtime. Now I don’t like going to the dentist.

When my hands aren’t working properly or I am tired, I like to spend the day with my ferrets. Nikka likes to sleep in my lap and Crystal is hyper and entertaining to watch. They make me happy just by being with them.

HNPP isn’t so bad – there are a lot worse things to have. I hope my HNPP never gets as bad as my dad’s – he has lots of problems with his hands and feet.

Sincerely

William

P.S.: I am Arlene – William’s mother. I helped Wil write this article. I have a few things I would like to add:

I think it was harder on Rick (my husband and Wil's father) and I when we discovered William has HNPP. Rick was upset because he "gave" this to his son. I was overwhelmed, to say the least. We both have concerns regarding Wil's’ future. It has only been six months since his first episode. No one can predict the progression HNPP will take for any one individual. I feel that the future will be easier for William than for many persons with HNPP because he is young and will grow up not remembering life without this disorder.

To date, William’s symptoms have been mild but constant. He is always telling me something is numb. I usually tell him, "Oh well – go play," then keep an eye on him. I am constantly reminding him not to sit cross-legged when playing on the floor. He asks for help with little things that he has been doing on his own for years already. He needs help pouring milk and juice (especially if the containers are full). I tie his shoes if we are going to do a lot of walking. I fin myself unloading the dishwasher- this is Wil's job.

The fatigue Will experiences upsets me. It is hard to see m once very active son come in to lie on the couch after one half hour of bike riding. Recently, we had to cut a walk short because it was too much for him. William loves outdoor activities. as a school picnic, I had to tell him that he could not go for a hike with his teacher and some other boys- the hike would have both worn him out and caused pressure palsies in his legs. I hate being the 'bad guy'.

William has been having problems getting to sleep at night. I turn a blind eye to his being awake late- he stays in his bed for the most part. Then he wants to sleep in the morning instead of getting up at 6 a.m., which has always been his habit. It is hard on my other son who wants to go wake up is brother.

Wil starts Grade 5 in September. I am sure this is going to bring on a whole new set of problems to be solved. (Wil was basically finished his Grade 4 when HNPP started affecting his daily life.) I think it will take the first month to get used to using the voice recognition program. Home school grants us the freedom to work at a comfortable pace or even take time off as needed. It also illuminates the dangers of pressure palsies caused by gym glass and the playground.

We haven't started working towards William's future. The present alone is a struggle to keep life as normal as possible and Wil feeling normal too. OT has been more help to me than to Wil. Loraine is an understanding ear when I need her. Wil's schoolwork is the only thing we have modified because of the HNPP.

All in all, William is a great kid!

Reprinted with permission from CMT International, CMT Newsletter Volume 17, Number 4, August/September, 2000


Last updated 11/01

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