gemma
Junior Member
Registered: 08/03/08
Posts: 2
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| | 08/03/08 at 01:53 PM | Reply with quote | #1 |
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My usband was diagnosed about 6 years ago with mytonic dystrophie.
I have a 6 year old and a 2 year old that are showing no signs of having it.
does anyone having any ideas if iu should get them tested or not? and if so why?
thanks
Gemma
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dmchat
Super Member
Registered: 05/01/07
Posts: 71
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| | 08/03/08 at 07:19 PM | Reply with quote | #2 |
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This is the good old catch 22 question.... should I or shouldn't I get the children tested.
1, Do you decide or leave it up to them when they are old enough to make there own decision
2, What do you do if they are found to be possitive?
3, Medical insurance, Life insurance and Travel insurance can be refused (in the UK) on the grounds of DM1
4, But due to problems with anaesthetic's it can be wise to know if they have DM
All the medical staff I know all say if they show no symptoms then don't have them tested. I have a 9 yearold who hasn't been tested, as we feel it will be his decision when hes older. Also he shows no symptoms, so what difference would it make to his/our lives if we found out he was!
I don't think anyone can tell you, that you should or should not have them tested. It just one of those things as parents we make a decision and then live with the consequences.
Here is a link to something you may wanna read quickly http://www.dmchat.co.uk/e107_files/downloads/Relatives%20information.pdf
I tried to attach but it doesn't allow .pdf
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Sarah
Member
Registered: 08/05/08
Posts: 5
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| | 08/05/08 at 02:24 PM | Reply with quote | #3 |
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Hi I am new here
I have MMD1 and am glad I got tested because I was trying to become pregnant and knowing I had it meant I knew I should get my baby tested for it. Unfortunately the baby had inherited gene and would have been born severly mentally and physically disabled so I terminated the pregnancy not wanting to put another human being through the pain I have - especially my own child
But there are the problems with pensions and insurance being refused if you have this condition.
I think if they are showing no symptoms at this young age there is no need and they can make their mind up when they choose to have a family.
But it is probably wise when it comes to anaesthetics to mention that it is in the family but that they haven't been tested. At least then the Doctors know there is a possibility and are extra careful. Also may be an idea to have a yearly ECG to make sure heart rythum is normal as an abnormal heart rythum is a symptom that needs to be checked
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gemma
Junior Member
Registered: 08/03/08
Posts: 2
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| | 08/05/08 at 02:57 PM | Reply with quote | #4 |
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thank you for you comments. i was nearly 100% sure that i was not going to get them tested. I have and will never keep it from them that their dad has an illness.
so as they get older and want to get tested i willo not stop them.
Thanks again
GEmma
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RPittsley
Super Member
Registered: 07/03/08
Posts: 26
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| | 08/07/08 at 02:58 PM | Reply with quote | #5 |
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I say get them tested. I have four children and I was told that if they weren't showing any symptoms, not to get them tested. I felt the same as many others, that I didn't want them labeled or discriminated against because of the diagnosis. My sister, who is 37 and on disability, and who had two children with DM1! (One passed away a year ago at age 11) strongly encouraged me to have them tested. The earlier you know, the earlier treatment can be started is what she told me. There is a lot that can be done in the early stages that could keep someone from developing worse problems down the road.
I took all four of my children to the MDA clinic. The neurologist ran them through some physical tests, and said that he was very sure that none of them had it. I told him that I didn't show symptoms when I was a child. He ran me through the tests and admitted that if he didn't know that I had it due to a DNA test that he would have given me a negative diagnosis. (I have minor problems, but they still have an impact on my life.) He had blood tests done on the children. My two older children were negative. My twins had a CTG repeat of 350 each.
They already had diagnoses of ADHD and behavior problems. In retrospect these could be traced back to the DM1. The diagnosis has allowed us to monitor for the beginning of other problems. As soon as they get through puberty their doctor plans to put them on baclofen, an anti spasm medicine. Several of my siblings have severe muscle deterioration, atrophy and neuropathy from the DM1. I started baclofen before any of that started in my body. Because of that I have been told that I have a very good chance of leading a fairly normal life.
The diagnosis has actually helped us get more medical and government assistance. We are in the process of working with our county social services. The girls have a good chance of qualifying for PCA's and respite care, even though their physical health is not severely compromised at this point. This would be a much needed break for the rest of the family, as the neurological problems continue to get worse. It has helped my husband and I to work on maintaining rigid sleep and wake routines for our girls, and they are already being monitored by specialists for possible immunological and gastro intestinal problems. It has also given their behavioral therapist a place to work from in regards to behavior problems, as a certain set of neurological issues seem to go along with this disease.
My brother never had his older children tested. My niece has the physical characteristics of MMD. She made it through nursing school, but now is exhausted all the time. She also self medicates with alcohol for depression and pain. She is sure she has it, but doesn't want to confirm it with a test. What would be worse - how she is now, or working part-time accompanied by disability insurance and on appropriate medication? Ultimately, the decision is yours.
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Kathie
Junior Member
Registered: 07/29/10
Posts: 2
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| | 08/03/10 at 11:09 AM | Reply with quote | #6 |
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My two sons are the first family members I am aware of that have this diagnosis. My oldest son had 3 children before he was diagnosed. Two of the 3 do have the disease, per DNA testing.
My daughter-in-law was advised by a counsellor not to have them tested, but is glad that she did. My son went through a lot being called lazy, unmotivated, etc. before we realized how severe his GI, heart and muscle problems were. At least, we will understand problems in the children as they develop.
An additional issue is that it may be devastating for a teenager to hear that they should not have children, while a child pre-puberty probably won't take it as hard.
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