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Can we stop / slow down progression of CMT at the age of 5?

 
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vijujoshi



Joined: 01 Jun 2006
Posts: 3

PostPosted: Wed Jul 05, 2006 11:22 am    Post subject: Can we stop / slow down progression of CMT at the age of 5? Reply with quote

Hi,

My name is Mrs.Leena Hemant Devasthali. I am 36 years old residing in Mumbai, India. I'm suffering from CMT for last 31 years. My father, who is 67 years old, is also a CMT patient.

Recently, we have observed muscle weakness and slight footdrop in lower limbs of our 5 year-old son, Harsh. So we consulted one reputed neurologist. He also conducted "Nerve Conduction Test". Its report shows Motor Neuropathy and axonal + demylinating in the lower limbs.

We searched for information regarding CMT on the internet. According to our information first remedy to control the footdrop is bracing (AFO). For maintaining muscle activity swimming may be helpful. Please let us know your opinions on our understandings.

In addition, we have few more queries. We will be very grateful if you can provide us necessary information/guidance on the same.

1.Can we stop/slow down the changes and deformities due to CMT? Which necessary actions should we take immediately?

2.Can we stop the progression of CMT? Is there any medication available which we should start immediately for this purpose?

3.As our son is very active child, can he do activities like cycling, climbing, running? Will these activities create adverse effects on his limbs?

4.In his growing age, what diet modifications should be done to help his muscle activities?

5.What type of exercises should be done daily to avoid further deterioration of the muscles? His hands are not affected yet but weakness is observed only in the fingers of his lower limbs. He is unable to walk on his heels.

6.What is "Strength Training" which is given to slow down nerve deterioration & muscle weakness process?

Kindly guide us on above mentioned queries.

Thanking you in advance.

Regards,

- Leena Devasthali
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Autumn33



Joined: 29 May 2005
Posts: 3811

PostPosted: Wed Jul 05, 2006 1:05 pm    Post subject: Reply with quote

In answer to questions 2 and 3 - no you cannot "stop" CMT. CMT is slowly progressive no matter what you do. Symptoms can differ greatly within the same family. There is no medication that will stop it at the present time. Your son can do pretty much any activity within limits. His body will tell him when he has overdone. Eat a healthy well balanced diet just like anyone should. Others will help answer your questions as well. Post often.
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Retlaw



Joined: 30 Jun 2006
Posts: 954

PostPosted: Wed Jul 05, 2006 8:16 pm    Post subject: can we stop the progression of CMT? Reply with quote

CMT will progress on it's own, depending on each individual's unique genetic code. Before you try AFOs on a 5 year old, maybe try in-shoe custom orthotics, or corrective shoes. If the child has ankle muscles, it is possible to do ankle exercises - ideally in the water, like a pool, on a 'rocker board'. A physical therapist can help set up specific exercises like this. Walking in sand will also strengthen ankles and an aquatics program might be worth looking into as in water, one is buyouant and there is no stress on the joints. If the footdrop gets very bad, even with AFOs, and the child's ankles are weak, you might want to consider surgery.

As for diet, one that follows the American Heart Association guidelines was recommended to me -- do not allow the child to overeat or eat many sugars. You might also try Vitamin C and E supplementation. While no research is completed now on those supplements, early trials proved that CMT 1A can be stopped. This used 30 generations of mice. There is a current trial going on on young people with CMT and Vitamin C in The Netherlands (by young I mean ages 18-25)

Low stress, good quality of sleep, and keeping positive emotions will help too.
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Eva



Joined: 15 Nov 2005
Posts: 39
Location: United Kingdom

PostPosted: Fri Jul 07, 2006 11:04 am    Post subject: Reply with quote

Hi vijujoshi,

I have a five year old son with CMT, but with no previous family history of this disease.
I know how you feel, I was (and still am) very worried about my baby boy, and confused.
CMT can not be stopped or cured just yet, but in about 10 years time it will change!
Check the news from time to time about gene therapy, go on the net and do a lot of research about the disease and the possible treatments, trials etc.
I really think that our children will have an effective treatment or even a cure by their twenties!!!!!!!!

Keep us posted, and have faith in medical science!
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