Today was a bad day for Masan! Our morning started by doing PT with his rice and beans tub to stimulate his nerves, but that just didn't ease the pain in his hands. He has been on vitamins with iron for a few weeks thinking that they may help, but unfortunately that isn't helping either. This child that used to be so happy and bubbly just doesn't have the energy to do the things that he once enjoyed. He loves playing video games but when his hands are hurting this bad he can't even enjoy that. I just wish I could take his pain from him, I would in a heart beat. If he is feeling better tomorrow we are going to go shopping for special school supplies cause he will be attending public school again come Thursday, hopefully this time it will be different than before. Wish us luck, talk to you again soon.

Masan's hands and feet

The CMT has really taken a toll on Masan's body. Pictured here are his hands and feet taken in Jan. 2008.

Masan and his buddy

The Unknown Road

It is hard as a parent to watch your children in any kind of pain, but to be a parent and know there is something wrong with your child but have everyone around you dismiss your thoughts well that is unbearable... I know because that is what happened to me. This is the story about our son Masan Robert Payne and the disease Charcot~ Marie Tooth that he was born with. To sum it up CMT patients slowly lose normal use of their feet/legs and hands/arms as nerves to the extremities degenerate and the muscles in the extremities become weakened because of the loss of stimulation by the affected nerves.
Here is how this long road began....
I think the first sign was the fact that he threw up a lot when he was a baby. The told us it was acid reflux and put him on medicine for it but, the medicine didn't help. Then when he was first learning to walk he was always on his toes and often complained that his calves hurt. His doctor said it was no big deal and he would grow out of it by the time he was 2. Age 2 came and went still walked on his toes, again the doctor said nothing to worry about but, this time sent him to PT.
In September of 2006 Masan started preschool and his teachers noticed he was falling a lot in a 4 hour period not as if he had tripped over something but, one minute he was up and the next he would drop. They also noticed his hands shaking while he was writing or cutting, Mrs. Myers expressed to me she was concerned. Finally after telling the doctor about what the teachers had observed he stepped up to the plate and scheduled us for an appointment with the Orthopedic surgeon. Again I was told he was fine and PT should cure things. PT didn't do anything actually it just seemed to make him hurt more, and to top it all off the Physical Therapist suggested that Masan be checked for Cerebral Palsy. At this point I felt helpless, why wouldn't the doctors just listen to me? I am his mother and I know him better then ANYONE! So I asked for a second opinion.....They sent us to a Neurologist at Children's Mercy Hospital in Kansas City, MO. Upon examination the neurologist noticed Masan had no reflexes in lower extremities. He requested more test to be ran. They did an EMG and noticed something very strange, so they sent him for a blood test to see if he had a disease the doctor called CMT. In October of 2007 we finally got the answers we had waited four years to hear. It was confirmed Masan suffered from an inherited disease called Charcot-Marie-Tooth. We were so happy to finally get answers, but then the doctors told us that Masan is loosing the use of his muscles very quickly and they don't understand why, so yet again we are left with no answers. We have always lived life one day at time, but once we were given Masan's diagnosis we were forced to face our fears and look them straight in the eye.
There are many people that got us where we are now, but there is one special lady that believed in me as a mother and helped me open the doctor's eyes. She was the only one who trusted me when I felt in my heart that something just wasn't right. This lady I am speaking of is Susan Myers, Masan’s preschool teacher. Not only did she keep me informed of any changes in Masan while he was at school, she let me know it was okay to fight for my child.
Since being diagnosed Masan has been put in 3 sets of Afo's, and is currently going through OT and PT. Although it is very rare Masan's vision has been affected, he has had his prescription changed twice over the last two years. Currently he uses a wheelchair for distance purposes. Masan attends school half days (due to fatigue) at Pickett Elementary an all level school that has fit Masan's needs perfectly. This child that at one time wouldn't unclench his arms from around my neck, has really blossomed into an amazing little man.

Will You for Give Me? Written by: April Payne for Masan Robert Payne

I only wanted my child to grow,
but there was something we didn't know
toe walking at four years old
not telling the difference between hot and cold
tripping and falling or passing out
did they know what they were talking about
everyone told me it couldn't be
no one would listen, no one could see
doctor after doctor, tests after tests
I knew my son deserved the best
they told us CP and then something new
I got on my knees and asked GOD what to do
finally they confirmed it is CMT
an inherited disease the naked eye don't see
It hides inside way down deep
attacks your nerves and never sleeps
there is no cure up to this date
for now our life is all up to fate
One day I hope you will understand why
I hold you close at night and cry
Will you ever forgive me for what I've done
I love you my angel, my heart, my son!