my child with cmt introduction LONG

[Guest guest]

Hello

Thank you very much for inviting me to join the group.

I am originally from england/wales. I am 32 years old. I had my son

wayne in 1991. When i was pregnant with him everything seemed to be

ok, except for the usual aches and pains and gestational diabetes

in me that never went away, so i am now diet controlled. Anyway,

Wayne was rather a small child he weighed in at 5lb 11 oz, and there

didnt seem to be anything wrong except a little low blood sugar. They

told me when i was pregant there wasnt any way that they could test

for CMT as his father had it and was diagnosed years ago by a

Professor Dubowitz (sp?). With my ex husband they did muscle biopsies

etc and lumber puncture and god knows what else, but in the end it

showed that he had cmt.

Now my son who is now living here with me in the states, through re-

marriage, was diagnosed at a very young age. What happened there was,

i took wayne for his 6 week check up and they did the bending of the

hips back process thing (sorry not sure what the medical term is)

anyway the dr said he was worried. Off we went to the hospital and we

ended up with a dr who was a very sweet man and also my husbands

pediatrician He recognised the signs almost immediately, and that

is when the stress started for me. Wayne didnt learn to crawl until

he was at least 2 1/2 years old, maybe later than that i am not sure.

He had problems sitting up by himself. We were then introduced to a

family support team which are great people, helped me to get free

diapers and milk tokens and a host of other benefits at that time all

the way up until wayne was 7. My ex husband was a little skeptical at

all this and used to get extremely rude in front of doctors, who i

thought that were perfectly fine, but he thought that wayne was being

used a guinea pig, unfortunately. Anyway we had the genetic nurse

visit us from Prince Hospital in Swansea, to take blood from

me and mark and a sample from wayne for dna testing. From what i

understand it did show that the genetic line was my ex husbands side

of the family. Many more dr's visits and frustration of me feeling

that i was a bad mother and being paid by the dss to look after my

own son followed, but i hung in there.

They then introduced us to an orthoptist and had made some ped boots

for Wayne, cool looking CAT boots He used to love those. Then

School started. Wayne went to kindergarten , he started fairly early

as they wanted to see what he was capable of. He had the supervison

of a special teacher and we also had the help of the education

authority who sent us a special needs education person who tested

waynes mobility and motor skills etc, which i found useful. This went

on until he went to Elementary. In Elementary he was assigned a one

to one teacher and a pysiotherapist and an occupation therapist who

would visit him at regular intervals. We also had a bus pick him up

and take him to school even though the school was close it was hard

for me to get him there (those welsh hills ya know:)) He also had a

taxi before that. The pysiotherapist would get wayne to go to

trampoline classes as even though it wouldnt help a lot it would help

a little with his balance. After that, i divorced and moved to

america to re-marry.

Wayne is in school here in Kirbyville in a special needs class. He

does take a lot of different classes and i get met with Grade Cards

with A's and B's. I couldnt be more proud. Wayne has unforunately

developed diabetes sort of. The reason i say sort of, is that he

doesnt display the normal characteristics of diabetes (not to a dr

although i can see them ) I will describe here what has happened

in case anyone here has or developes a similar problem with their

child. About a year ago, Wayne as usual was tucking into candy that

his grandmother had sent from wales. He also drank a spite soda. Then

he had the stomach ache and then he threw up and then we had an

almighty temper tantrum!. Anyway at this point i didnt think much of

it, but after seeing this periodically i did start to worry. I

started to take his blood sugars on a meter and they started to climb

and then they would drop. We started to have high fevers of 301,

times where he would feel perfectly fine and others when he felt

drained, but still wanted to play. I took him to a Dr. The Dr told me

to give him motrin and tylenol to get the fevers down. I voiced my

concern about diabetes (his fathers family and mine all have a

history)and they ordered the H1bc? test. This came back a little out

of range but nothing major. I was then told to take him to Childrens

Mercy in Kansas City. Our first appointment didnt produce many

extraodinary results for a while and they wern't sure what to do

except for us to keep monitoring him and to keep a chart of blood

sugars and meals for the dietician. They were still a little baffled

on our next visit too. I had explained to them that i had spent

christmas eve in the ER and christmas day with my exhausted high

temperatured child in the bedroom, lol that was not fun. So the

hospital then ordered a glucose tolerance test with explicit

instructions on fasting from midnight until the test was over. I

complied, everyone complied. They put in the IV, took a finger test

and low and behold *im sorry mrs patton but can you try your meter on

wayne in case ours is incorrect?* Of course i did that too and the

same result within a couple of numbers came back 182. *oh dear, we

think your son is now showing diabetes*, so anyway after many

discussions with the dr it has now been decided that wayne is to have

an insulin injection every day just to help him out. This, even

though i may sound sarcastic, i am certainly not meaning to, is great

but worrying news to us and my husband as we want wayne back to the

way he was without the moods and the *i cant eat what i want *

speeches, but we are also concerned whether or not insulin will have

a not so positive effect on his cmt.

My ex husband is in a poor state of health, unfortunately. He is an

insulin diabetic, tried to not take his insulin like he was supposed

to, had a violent temper and did for the most part of our marriage

was not grateful for what he could do, but focused on what he couldnt

do with the cmt, which made him even more nastier and miserable at

times, sadly. I have heard though during my marriage his father is

exactly the same way.

I get very down at times too and so does my son. We got a bike for

him (as this does strengthen his legs although a little ). I have

also read somewhere not to go to mad at him when he wants to play

video games on end as this does help the motor sensory and co-

ordination.

I didnt mean for this to be a depressive tale, i was trying to

explain a little of what has happened living with a child with CMT

and for those who are just starting out on the path with the child

with CMT that we can and we do get through this and talking with

others does help.

Thanks for reading