Has anyone on here with cmt had children?

[Shannah34]

[John1945]

Hello Shannah34 ....

What a strange question ? ? ?

>The answer is YES, I would guess/estimate thousands, of Cmt sufferers have conceived children, or 'offsprings' as the medical professionals prefer to call them :

Many-many Cmt parents have undertaken 'genetic-councelling' before deciding to have children :

>However, there is no 100% certain scientific forecast available at present : The current advice is, "if one parent has the defective gene", then there is a 50/50% possibility exist's that their 'offspring' may have "INHERITED", the defective Cmt gene :

Example !

>CMT1A is an autosomal dominant disease that results from a duplication of the gene on chromosome 17 that carries the instructions (motor/command nerves) from the brain producing the peripheral myelin protein-22 (PMP-22). >The PMP-22 protein :

Myelin is the fatty-like wax substance which wraps around your peripheral nerves, to contain/insulate the strength of your signals/messages, outgoing motor nerves >>>(brain to muscles) + strength of your signals/messages incoming>>> sensory nerves(touch/feelings back to brain):

>In Cmt sufferers, your long peripheral 'motor', are called command nerves>>>(sited just below your skins surface):

>The insulation/covering/sheath, which is called myelin, 'LEAKS', therefore, over a very long period of time (lifespan), your receiving 'lower-limb's muscles, will start to waste, due to them not receiving a sufficently 'STRONG' enough electrical, and stimulating signal/wave pulse from your brain:

>Likewise, your 'sensory' nerves which convey your feelings/touch/sensations from your hands/feet back etc, to your brain are also equally damaged, thus your brain responds much more slowly to correct your balance/walking/gait difficulties, as the nerve signal are very weak !

Best of luck .....

John ..... (Glasgow)

[Shannah34 in reply to John1945]

Hello John,

I asked because I have CMT1A and have a three year old daughter and a 9 month old son. I'm fairly certain my symptoms are getting worse since having them. We are waiting to see a geneticist to decide how to approach the possibility of them also having it. I was diagnosed when I was expecting my daughter but I wouldn't have had genetic counselling to decide whether or not to have children if I'd known beforehand. I was (am) interested to know if other women have also experienced worsening symptoms after having children. Thanks for your information though.

[Nickybroome in reply to Shannah34]

Hi shannah34,

I have 3 children, nearly 5, just 3 and nearly 1. It is very hard to think they could have CMT, as parents we hope for active healthy lives for our children with no hurdles to jump but even if you don't have a genetic condition, no one knows what life brings.

I wouldn't change anything about my children and after discussions with my husband we have chosen not to test, why? What will be will be, I lived a normal clumsy childhood and CMT didn't get in the way until I was diagnosed at 26.

Since having my children my symptoms have progressed lots, I don't go anywhere with wearing orthotics, after my 1st child I only wore them if going for longs walks. I do believe pregnancy puts a huge strain not only on your body in general but maybe the stress can progress CMT. It would be interesting to know of any research.

All the best for you and your family. X

[Shazza65 in reply to Shannah34]

I have two children, 26 and 24, after each pregnancy and birth my symptoms became much worse resulting in the need for immediate physiotherapy to recover my strength and ability to walk and carry my baby. My condition did improve over time and remained stable, however I wasn't able to run around after them. I also had my daughter tested with neve conduction studies when she was 3 months. Carried out by Prof Dubovitz at Hammersmith hospital. These were negative and I am pleased to say they have both grown up without symptoms. At the time the medics did not know what type I had but 2 weeks ago I was diagnosed as type 4. As a child with cmt it was always best to know as you can access physios and other services to help you along the way. It most certainly does not have to be a label.

[John1945]

Hello to Shannah34 .....

I fully understand your genuine concerns as parents of two children who may, at this VERY early stage, who POSSIBLY ?, could have the visual symtoms of Cmt:

My own personal feelings are, that you and your husband, will not receive any great benefit from consulting a geneticist, AFTER !, you have had two children:

A geneticist will only produce for you, a list of mathematical possibilities/probabilities for you both to consider: They do not make medical decisions, only advise you, on what may, or could happen: Usually it is a 50/50% chance that they will inherited the gene mutation:

If you wish to have both of your childen (offsprings), to be officially diagnosed as to whether they have the Cmt gene, then you must consult a NHS NEUROLOGIST,via your G.P. to obtain a diagnosis, and their prognosis, a (prediction of the course or outcome of a disease, or disorder):

This is done by blood test sampling, that are then usually are sent to a specialist lab, usually a 'University-Laboratory' (will take take 6/8 weeks to obtain results), or Nerve Speed Conduction Tests, (however, your children are far-far too young) for this most uncomfortable electrical probe testing, which measures the actual speed/velocity from brain to the receiving muscles, sensory nerves (touch/feelings) signals back to the brain :

My wife and I decided NOT to have any further testing done on our son, and daughter, at ages of 5-14yrs, until they reached their teenage years, when traditionally the Cmt symtoms began to show:

High Arches/Walking/'Foot-Drop'/Tripping/Balance/Lack of Reflexes/Muscle Wasting/Clumsiness etc:

OUR REASONS WERE, WHEN WE BOTH THEN REALISED THAT OUR CHILDREN, HAD INDEED, INHERITED THE EXACT SAME CMT SYMPTOMS AS ME, THEIR FATHER !

SO WHY SHOULD WE NOW CHOOSE TO THEN, TO HANG A, "I'VE GOT CMT" LABEL ON THEM BOTH, AT SUCH AN EARLY STAGE IN THEIR YOUNG LIVES" ?

What difference, does any diagnostic testing bring to your individual child ?

The answer is NONE whatsoever, it does not have any benefits for them, as such young children, as currently their is no cure for CMT Disease:

Remember also, that many fellow sufferers, have been sumarily discharged by their neurologist, after they receive the Cmt test results: "Ok ! you now have a confimed diagnosis of Cmt, so off you go, as there is no known cure, you will just have to accept it, and manage it" ! ! !

My best regards, and "good-health" to you, and to your family .....

John .....(Glasgow):

[loneranger in reply to John1945]

Hellow john ,

From what you have wrote here it seems that you got a point . However , what would you do in case your son / daughter have concluded schools and want to / or have to (by law) join army forces in their country in time they may have silent CMT in their body (visual or not) . Would not it be better if

they have a diagnosis (by blood test) earlier (in advance) in order to avoid putting them at a risky situation where they may have injuries etc. in the first place .

Please comment ....

Thanks

[John1945 in reply to loneranger]

Hello again to loneranger .....

Once again, I make my point WHY do you wish to test your children for Cmt at this very stage in their young lives ?

They will find out soon enough, as when they try to seek employment, many doors will be closed to them ?

Examplei: Armed Services / Airline Pilot / Emigration Abroad / Dentist (Cmt hands) / Surgeon ( Cmt tremor) /

possibly Train Driver (Cmt so/slow reflexes) etc - etc:

Best of luck to you and your family .....

John ..... (Glasgow)

[sally98 in reply to John1945]

Hi John,

As a teenager myself I have gained a lot from being diagnosed at the age of three with CMT. Although the Nerve Speed Conduction Tests (which I had when being diagnosed) hurt, the help I have received since then has been worth it. The diagnoses enabled me to access services such as physiotherapy and regular check ups with some of the worlds leading neurologists at Great Ormand Street Hospital who are extremely experienced in the handling of CMT. This year I had an operation (Robert Jones procedure) to improve the way I walk. My CMT is quite mild but without the diagnoses I feel I would not understand my condition as well or have as much support from doctors, teachers, family etc. I think that the help I have received from Great Ormand Street hospital has really improved my life.

You said that you did not want to 'Hang a "I'VE GOT CMT" LABEL' on your children but why would you view it in such a negative way? I have never thought of CMT as a bad thing or a label, yes I have CMT and maybe I can't run as fast as other people and I where splints but that is just the way God made me. My friends all know I have CMT but they don't treat me like I have something wrong with me instead they support me and when it comes to sports day the whole year cheers me on even if I always come last. Perhaps I think this way because my parents have always just embraced my CMT and carried on like normal. My family is always open to discuss and joke about it and it is never approached in a "oh you have CMT so you can't do anything" kind of way.

So when you say that no one benefits from early diagnoses I would disagree, because I was diagnosed early on doctors could track the progress of the disease and intervene to slow down any rapid deterioration.

Regards,

Sally

[Pooky]

I have 2 kids 13 &10.

The problem with kids is they take time, so less time for you to stay fit. You need to try and stay fit or you will loose it.

Schools are HELL for kids with cmt, lots of "your a spactic / you run like a granny" which the schools don't do anything about. The schools will force them to run sports day /cross country etc. (school policy is that every child runs)

You will need to be very familiar with the Equalities 2010 ACT . A letter from the doctor saying the kids got CMT is not good enough you need to get letters banning forced

running/activities. You will need to influence school governors to consider equality and reasonable adjustment. You need to think about becoming a parent governor if you are thinking of sending your kid to a state school. With out the help of the medical profession

(physio , nerologist ect) kids with cmt cannot get through state schools.

Small country primary schools are the worst. The larger secondary school at least tries.

[Amanita in reply to Pooky]

I agree about the pure misery of enforced sport/gym for kids with CMT. After all those years, the mental scars are still deep, even though my school was single-sex and well mannered (it was a LONG time ago). As there was no diagnosis then, I was treated by the teachers as though there was nothing wrong with me, and was just regarded as clumsy and incompetent, and an unwanted liability in any team. (Being very shortsighted didn't help either)

[John1945 in reply to Amanita]

Hello to Amanita....

So sorry to hear about your horrible school days, and the total lack of understanding of your schools teachers : Always remember that the majority of health professionals can complete their medical career's without ever seeing one single case of Cmt disease:

I have two children in their forties, and two male grandsons, who currently are at High School: They both trained, and played football for 4 years, which built-up their lower limb's muscles up, and reasonably toned them:

Their schools P.E. Teachers were most considerate, and made aware of their lessend physical abilities, all due to the information pack sent direct to them by the most helpful Cmt United Kingdom website: (well worth joining as a member)

As a member of Cmt United Kingdom, I alway contacted them to send out their Information Pack for health professional(s), which is designed to explain in detail Cmt, and it's symtoms, and drawbacks;

At present there around 30,000 registered cases, out of a UK population of 63 million, and there is certainly many more citizens who have the Cmt disease symptoms, but do not realise what they mean ?

[CMTUnitedKindom Partner in reply to Pooky]

I think your reply is a bit extreme - but probably bases on your experiences!

Both my kids have CMT - and all you need is a good community paediatrician and a SENCO who is prepared to listen to you. I've certainly never considered becoming a governor just to ensure my kids have what they need!

It does take time to get through to the school, I know - but once done, it's done. Both kids have (had) extra time for exams, my daughter was excused PE without too much hassle, and she had nothing but help and support from all concerned. My son gets less consideration because his cmt is so mild he's never seen a medical professional of any kind, and still does PE - reluctantly, yes, but because he's a lazy boy, rather than because he can't! But he's never pushed, because the staff remember the issues his sister had (she's now at uni).

Karen

[loneranger]

Hi there , I have 2 children 12.5 & 9 .

Keeping up with their energies can be hard .Indeed .

Ond day your children as well as mine would have to know and accept their parent's has cmt and not just disabled

(Hopefully that they do not have cmt of course) .

[MSMM]

No 'official' diagnosis yet. Appointment with neurologist in near future. I have six children. One son with pes cavus. Also children with mild scoliosis. i also have same.

[Cooper01]

I was diagnosed at 22, and it devastated me, but then putting things in to perspective it did not prevent me from leading a good life (apart from wearing high heels!) and now i am the proud mother of beautiful twin girls and it has always been my intention not to have them tested/ labelled until they can make the decision themselves, and i will explain how it has not prevented me from doing anything ..... Although i question whether this is the right decision on a daily basis and am constantly looking at their feet .... but they are 7 at the moment not presenting with any symptoms .... I do not tell many people that i suffer from CMT but I was aware that there was a 50/50 chance of me passing it on ... but if they do get it i hope they have the positivity not to let it effect their lives, hence why i do not want them to be labelled now, but when they are older (if then) and i will assist them as much as possible, but i do suffer from guilt as i want them to have the best life possible and definitely do not want them to look after me.

[Cerabecker]

Hi. My mom, aunt, and four of my uncles have CMT. All of my cousins do not have it.