tmm35
01-07-2003, 11:06 AM
i have a seven year old son who may have a form of md they are thinking duschenes is there any one out there whos child has md can tell me some of the symptoms .my son has weekness in the trunk and right side if his body he has bowel accidents and sometimes blader .he has a foot drop and has a hard time sitting up for long periods of time and complians of his legs hurting a lot.can any one please help me .tmm35
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Melissa_Shaw
01-25-2003, 05:53 PM
Hi,
I just read you post and thought I would try and help you out. As you read my other reply to a lady, you most probably have seen about the guy I'm with. I asked Mark what symptoms he had when he first got diagnosed with DMD, he walked pidgeon chested ( chest right out ), walked on his toes which is the main sign of MD, he crawled everywhere, he stumbled a lot, his calves went hard and bigger, does any of these signs sound familiar? Mark is the eldest male with Dechenne Muscular Dystrophy in Britain, he has a Nippy 1 which is a ventilator for which helps him to breathe while he sleeps, without this he would have died like all of his friends from being a child, if your son does have DMD, please, please make sure he has one of these machines because I'm sorry but he would surely not make it to the late teens, Mark was meant to die at 16 and now he'll be 32 in August, we even had a baby boy that nobody thought we could have together, we were in magsazines, on the news and in newspapers so if Mark can be a fighter so can your son and yourself, if there is anything you would like to ask Mark or me, feel free to post any questions, best of luck. xx
I just read you post and thought I would try and help you out. As you read my other reply to a lady, you most probably have seen about the guy I'm with. I asked Mark what symptoms he had when he first got diagnosed with DMD, he walked pidgeon chested ( chest right out ), walked on his toes which is the main sign of MD, he crawled everywhere, he stumbled a lot, his calves went hard and bigger, does any of these signs sound familiar? Mark is the eldest male with Dechenne Muscular Dystrophy in Britain, he has a Nippy 1 which is a ventilator for which helps him to breathe while he sleeps, without this he would have died like all of his friends from being a child, if your son does have DMD, please, please make sure he has one of these machines because I'm sorry but he would surely not make it to the late teens, Mark was meant to die at 16 and now he'll be 32 in August, we even had a baby boy that nobody thought we could have together, we were in magsazines, on the news and in newspapers so if Mark can be a fighter so can your son and yourself, if there is anything you would like to ask Mark or me, feel free to post any questions, best of luck. xx
tmm35
01-28-2003, 02:25 PM
hi melissa or mark.yes all those symptoms sound familar my son walks on his toes and yes his chest has started sticking out alot and he stumbles and falls alot and his calf muscles are very tight.yes you just about hit the nail on the head ask mark if his legs and stuff hurt to.my son goes back to the dr feb11 to have a muscle biopsy scheduled and some other test ask mark what kinds of test did he have.i know its all scary but we have accepted that its a 95 percent chance thats what he has .any additional info would be helpful.thank you so much tmm 35
Melissa_Shaw
01-28-2003, 03:29 PM
Hi,
I read your post, I've asked Mark your questions and here are the answers....
First of all, Mark's legs did hurt, especailly after walking, his hips hurt, he also got tired very quickly.
Mark's condition was confirmed at the age of five by having a muscle biopsy, I am talking 27 years ago so tests have progressed and they're a lot quicker and more accurate, Mark has a nasty scar from his biopsy on his leg, your son will not suffer the same way. This is the only test he had and lots of physio which didn't work.
Mark said check out all the DMD web sites, they have some really good information on there, Mark also said that when I mentioned about your son getting a Nippy ventilator, he said that your son is too young for one and will need that in the future, if you let us know what happens on the 11th, we might be able to help you further. I can't give you our e-mail address or it will be edited by the moderators on here but Mark said that everything you have said points to Muscular Dystrophy. I'm so sorry if that's the case and so is Mark. Best Of Luck
xx
I read your post, I've asked Mark your questions and here are the answers....
First of all, Mark's legs did hurt, especailly after walking, his hips hurt, he also got tired very quickly.
Mark's condition was confirmed at the age of five by having a muscle biopsy, I am talking 27 years ago so tests have progressed and they're a lot quicker and more accurate, Mark has a nasty scar from his biopsy on his leg, your son will not suffer the same way. This is the only test he had and lots of physio which didn't work.
Mark said check out all the DMD web sites, they have some really good information on there, Mark also said that when I mentioned about your son getting a Nippy ventilator, he said that your son is too young for one and will need that in the future, if you let us know what happens on the 11th, we might be able to help you further. I can't give you our e-mail address or it will be edited by the moderators on here but Mark said that everything you have said points to Muscular Dystrophy. I'm so sorry if that's the case and so is Mark. Best Of Luck
xx
tmm35
02-10-2003, 05:28 PM
hi guys tim goes back to the dr tommorrow and i had a talk with his dr and he feels the same way tims orthepedic dr does tims posture has also weekened alot and that scares me also wish us luck and pray for him and yes i have checked out every md website and read all about duschenes and yes tim has all the symptoms.is loss of bowel control one of the symptoms to .tims calfs are getting very hard and he complains so much .and i wish you 2 the best of luck. thank you tmm 35
Melissa_Shaw
02-10-2003, 05:59 PM
Hi Again,
Mark said that as far as he knows you don't normally lose bowel control, however in later life you can gain constipation, MD weakens the muscles in the bowels and you just can't do your toilet business as before, that's what my fiance has found with himself and the condition of other people. Not every muscle is effected with DMD, only one heart muscle is effected not the other two, Mark said he'll check out some info if he can (he practially knows everything about the condition but has forgotten most of it) . We're hoping your son will be fine, if not we wish you all the very best and let us know how the appointment goes, good luck.
Mark said that as far as he knows you don't normally lose bowel control, however in later life you can gain constipation, MD weakens the muscles in the bowels and you just can't do your toilet business as before, that's what my fiance has found with himself and the condition of other people. Not every muscle is effected with DMD, only one heart muscle is effected not the other two, Mark said he'll check out some info if he can (he practially knows everything about the condition but has forgotten most of it) . We're hoping your son will be fine, if not we wish you all the very best and let us know how the appointment goes, good luck.
lizmar
05-03-2003, 12:40 AM
I am a little concerned about my partner who is having difficulty using his nippy ventilator, he has a full face mask, he does not have scoliosis but breathing problems, please advise.
Many thanks
Many thanks
Melissa_Shaw
05-05-2003, 07:13 PM
Hi, my partner is on the Nippy ventilator too so if you need any help, just let us know
Melissa
Melissa
tmm35
05-06-2003, 01:39 PM
hi.timmy has 3 doctors well 2 of them totally disagree with timmys nuerologist.the ortho drs and his primary care dr all think timothy does have muscular dystrophy..he is going to go see another group of drs in charlottesville his right arm is getting worse and he is still walking on his tip toes and does have problems with constipation.he is actually getting worse and its like his ortho doctor says tims condition is progressive which isa number one sighn of md.i havent posted in a while because i have been real sick.i will keep you all up dated.thank you all for your support. tmm35
otis_15
05-21-2004, 06:46 PM
My son was diagnosed about 12 years ago the doctor used a needle bioscopy. I don’t’ know if this was any better than having the regular bioscopy done.
My son is 17years old and has DMD. He had to go into a wheelchair about 3 years ago because of his falling and being tired of getting hurt.
If you put your son on steroids they will weaken his bones. My son was on steroids from about the age of 7 to just entering his wheelchair. These drugs will also make your son gain a lot of weight. These are very good drugs, but I don’t know if the ends justify the means. One more thing about these drugs they will stunt your son’s growth.
My son is doing extremely well for 17 years of age.
I had a nephew who also had DMD, he was not as healthy as my son. We lost him going onto 3 years now. He was 17 when he passed away. His DMD was a lot worse that my son. If you had to do a scale my son was a 8 and my nephew was a 3.
Have you gone to the MD site to get more info. You can also sign and receive a Quest magazine, which has a lot of info about not only DMD with all of the other neuromuscular diseases.
I have found out that the MD.
If you have not got your son diagnosed yet do yourself and your son a real big favor, get health insurance. I did not do this so I am hoping and praying for my son to make it to his 18 birthday. He needs back surgery for scoliosis but with not insurance I can’t afford this.
Keep an eye on his back and make him set up as straight as possible.
For the leg start doing stretching with his legs. If you are with the MDA they will pay for physical therapy once a year have the therapist teach you how to stretch the legs.
If you need anymore info let me know. I have been dealing with this for quite some time.
Otis_15
My son is 17years old and has DMD. He had to go into a wheelchair about 3 years ago because of his falling and being tired of getting hurt.
If you put your son on steroids they will weaken his bones. My son was on steroids from about the age of 7 to just entering his wheelchair. These drugs will also make your son gain a lot of weight. These are very good drugs, but I don’t know if the ends justify the means. One more thing about these drugs they will stunt your son’s growth.
My son is doing extremely well for 17 years of age.
I had a nephew who also had DMD, he was not as healthy as my son. We lost him going onto 3 years now. He was 17 when he passed away. His DMD was a lot worse that my son. If you had to do a scale my son was a 8 and my nephew was a 3.
Have you gone to the MD site to get more info. You can also sign and receive a Quest magazine, which has a lot of info about not only DMD with all of the other neuromuscular diseases.
I have found out that the MD.
If you have not got your son diagnosed yet do yourself and your son a real big favor, get health insurance. I did not do this so I am hoping and praying for my son to make it to his 18 birthday. He needs back surgery for scoliosis but with not insurance I can’t afford this.
Keep an eye on his back and make him set up as straight as possible.
For the leg start doing stretching with his legs. If you are with the MDA they will pay for physical therapy once a year have the therapist teach you how to stretch the legs.
If you need anymore info let me know. I have been dealing with this for quite some time.
Otis_15
HASTI
06-03-2004, 01:04 PM
Hello All, My Name Is Lynne, Could You Tell Me Please If You Have Abnormal Reflexes In Your Ankles With This Disease ??? Many Thanx
Alicia Muller
06-16-2004, 04:10 PM
Dear Melissa,
Hello my name is Alicia. I have Congenital MD and am 29 years old. I use a Bipap St ventilatory Support machine since I was 16. I use it 24 hours a day. I am looking for a different vent. How does your husband fair with his breathing support? Thanks for sharing your story.
Hello my name is Alicia. I have Congenital MD and am 29 years old. I use a Bipap St ventilatory Support machine since I was 16. I use it 24 hours a day. I am looking for a different vent. How does your husband fair with his breathing support? Thanks for sharing your story.
Mark&MelissShaw
06-17-2004, 07:54 PM
Dear Melissa,
Hello my name is Alicia. I have Congenital MD and am 29 years old. I use a Bipap St ventilatory Support machine since I was 16. I use it 24 hours a day. I am looking for a different vent. How does your husband fair with his breathing support? Thanks for sharing your story.
Hi,
Mark is using a Nippy 1 at the moment ( B&D Electromedical ) and have just started to upgrade to a Nippy 3 which is mobile and it can be fitted on to a wheelchair to use out of the house. He uses a Sleep Gear with Nasal Pillows breathing connection. Mark does so well on a Nippy 1 but is still getting used to the Nippy 3, hope this has helped, any more questions don't hesitate to contact me again.
Mel
Hello my name is Alicia. I have Congenital MD and am 29 years old. I use a Bipap St ventilatory Support machine since I was 16. I use it 24 hours a day. I am looking for a different vent. How does your husband fair with his breathing support? Thanks for sharing your story.
Hi,
Mark is using a Nippy 1 at the moment ( B&D Electromedical ) and have just started to upgrade to a Nippy 3 which is mobile and it can be fitted on to a wheelchair to use out of the house. He uses a Sleep Gear with Nasal Pillows breathing connection. Mark does so well on a Nippy 1 but is still getting used to the Nippy 3, hope this has helped, any more questions don't hesitate to contact me again.
Mel
Abigail
07-25-2004, 11:14 AM
Hi,
Mark is using a Nippy 1 at the moment ( B&D Electromedical ) and have just started to upgrade to a Nippy 3 which is mobile and it can be fitted on to a wheelchair to use out of the house. He uses a Sleep Gear with Nasal Pillows breathing connection. Mark does so well on a Nippy 1 but is still getting used to the Nippy 3, hope this has helped, any more questions don't hesitate to contact me again.
Mel
Mark is using a Nippy 1 at the moment ( B&D Electromedical ) and have just started to upgrade to a Nippy 3 which is mobile and it can be fitted on to a wheelchair to use out of the house. He uses a Sleep Gear with Nasal Pillows breathing connection. Mark does so well on a Nippy 1 but is still getting used to the Nippy 3, hope this has helped, any more questions don't hesitate to contact me again.
Mel
Abigail
07-25-2004, 11:21 AM
Hi Mark and Melissa,
My son is nearlly 5 and has MDM I am new to the boards and read all about you. It has given me so much hope which I never thought I would have again. I have been looking at several different site lately and found one about a treatment called the nectar project and at the moment they are doing some trials with Royal jelly. The only thing is after filling all the form in to try and get my son Jordan into the trials they are now asking for money and a lot at that. Have you ever heard of it and how do I find out if it's real or not. I really want to beleive it is real because it looks amazing. I hope you can help. thankyou from Abigail
My son is nearlly 5 and has MDM I am new to the boards and read all about you. It has given me so much hope which I never thought I would have again. I have been looking at several different site lately and found one about a treatment called the nectar project and at the moment they are doing some trials with Royal jelly. The only thing is after filling all the form in to try and get my son Jordan into the trials they are now asking for money and a lot at that. Have you ever heard of it and how do I find out if it's real or not. I really want to beleive it is real because it looks amazing. I hope you can help. thankyou from Abigail
Mark&MelissShaw
07-25-2004, 04:12 PM
Hi Mark and Melissa,
My son is nearlly 5 and has MDM I am new to the boards and read all about you. It has given me so much hope which I never thought I would have again. I have been looking at several different site lately and found one about a treatment called the nectar project and at the moment they are doing some trials with Royal jelly. The only thing is after filling all the form in to try and get my son Jordan into the trials they are now asking for money and a lot at that. Have you ever heard of it and how do I find out if it's real or not. I really want to beleive it is real because it looks amazing. I hope you can help. thankyou from Abigail
H Abigail,
The Nectar Project has not proven to work, nobody should be asking you for money as it still at the trial stage. You however can get Royal Jelly capusles from some Herbalists, green tea also can be useful. If you would like anymore information, let me know and I will pass it on to my husband. How are you coping with your five year old? How's your partner coping as well because Mark's Dad wouldn't help out Mark at all and just wondered if all fathers were like this? Take care sweetie.
My son is nearlly 5 and has MDM I am new to the boards and read all about you. It has given me so much hope which I never thought I would have again. I have been looking at several different site lately and found one about a treatment called the nectar project and at the moment they are doing some trials with Royal jelly. The only thing is after filling all the form in to try and get my son Jordan into the trials they are now asking for money and a lot at that. Have you ever heard of it and how do I find out if it's real or not. I really want to beleive it is real because it looks amazing. I hope you can help. thankyou from Abigail
H Abigail,
The Nectar Project has not proven to work, nobody should be asking you for money as it still at the trial stage. You however can get Royal Jelly capusles from some Herbalists, green tea also can be useful. If you would like anymore information, let me know and I will pass it on to my husband. How are you coping with your five year old? How's your partner coping as well because Mark's Dad wouldn't help out Mark at all and just wondered if all fathers were like this? Take care sweetie.
Abigail
07-25-2004, 05:59 PM
Hi mellisa,
Thankyou for the advice. I still find it really hard to cope with Jordan. He's quite a big lad and struggles at times and wants me to carry him. He's often withdrawn and sad thats the worse thing as you don't always know what he's thinking.
Jordans natural father isn't interested he knows whats happening but hasn't even seen him since before he knew. I have a new partner who is completely different. He cope's really well with it all and is a great support to me and to Jordan.There was one other thing When Jordan last see his doctor 2 weeks ago he had an ECG and an x-ray and they said he has an enlarged heart is it normal for his age or is it something to worry about as I'm now waiting for a scan of his heart to be done. Thankyou for taking the time to answer me as not many peolple want to talk about all this.
Abigail
Thankyou for the advice. I still find it really hard to cope with Jordan. He's quite a big lad and struggles at times and wants me to carry him. He's often withdrawn and sad thats the worse thing as you don't always know what he's thinking.
Jordans natural father isn't interested he knows whats happening but hasn't even seen him since before he knew. I have a new partner who is completely different. He cope's really well with it all and is a great support to me and to Jordan.There was one other thing When Jordan last see his doctor 2 weeks ago he had an ECG and an x-ray and they said he has an enlarged heart is it normal for his age or is it something to worry about as I'm now waiting for a scan of his heart to be done. Thankyou for taking the time to answer me as not many peolple want to talk about all this.
Abigail
Mark&MelissShaw
07-26-2004, 12:47 PM
Hi Abigail,
Here is some answers from my husband.
1. Mark said the enlarged heart sounds like Cardiomyiophty ( can't spell it, sorry ) which is quite usual in DMD boys and is usually treated with drugs.
2. The echo scan is just like having a scan when a woman is pregnant, Mark has one once a year and is ok.
3. Have u been to see a genetic counsellor? If not ask your GP.
4. Have your son had a biopsy to confirm his condition?
When Mark's Mum found out about him having DMD, she was told he would not live beyond 16, he is about to celebrate his 33rd birthday next month, with the help of modern medicine and such, your son could just be the same, when he gets older ( your son ) ask about a Nippy Ventilator, this is such a brilliant help. Any more info you'd like just ask. We've got a 2 year boy which Mark was told he could never have and we're planning on number two and we got married one year ago last Friday. By the way is Jordan's condition due to you being a carrier or is he a mutation like my husband?
Love Melissa
xxx
Here is some answers from my husband.
1. Mark said the enlarged heart sounds like Cardiomyiophty ( can't spell it, sorry ) which is quite usual in DMD boys and is usually treated with drugs.
2. The echo scan is just like having a scan when a woman is pregnant, Mark has one once a year and is ok.
3. Have u been to see a genetic counsellor? If not ask your GP.
4. Have your son had a biopsy to confirm his condition?
When Mark's Mum found out about him having DMD, she was told he would not live beyond 16, he is about to celebrate his 33rd birthday next month, with the help of modern medicine and such, your son could just be the same, when he gets older ( your son ) ask about a Nippy Ventilator, this is such a brilliant help. Any more info you'd like just ask. We've got a 2 year boy which Mark was told he could never have and we're planning on number two and we got married one year ago last Friday. By the way is Jordan's condition due to you being a carrier or is he a mutation like my husband?
Love Melissa
xxx
Abigail
07-26-2004, 03:35 PM
Hi Mellisa,
It's such a releif to know that all these tests are usual if you know what I mean. I have seen a genetic counsellor but only once they went through all the genes. My son didn't need a biopsy they found the gene in his blood after his cpk test came back at just over 35000. I have another son who is 3 nearly 4 and he is clear but has his own problems due to meningitis which left him with brain damaged. Even though they both have their problems I still feel very lucky as I was told I was infertile before I had Jordan. Jordan is a mutation like Mark which in some ways was harder to understand as it would of made more sence for me to have been a carrier. Then at the begining I could of blamed myself but there was no real answers and even now I suppose there isn't. I think it's wonderful that you have a child. One of the things that went through my mind was that Jordan would'nt have any children of his own but you have both given me hope for the future. Has Mark still got the use of his arms as the dr's told me he would loose all movement and would die by the time he is 20. I can see now that that may not be the case. Thankyou and good luck with your second child.
Abigail
It's such a releif to know that all these tests are usual if you know what I mean. I have seen a genetic counsellor but only once they went through all the genes. My son didn't need a biopsy they found the gene in his blood after his cpk test came back at just over 35000. I have another son who is 3 nearly 4 and he is clear but has his own problems due to meningitis which left him with brain damaged. Even though they both have their problems I still feel very lucky as I was told I was infertile before I had Jordan. Jordan is a mutation like Mark which in some ways was harder to understand as it would of made more sence for me to have been a carrier. Then at the begining I could of blamed myself but there was no real answers and even now I suppose there isn't. I think it's wonderful that you have a child. One of the things that went through my mind was that Jordan would'nt have any children of his own but you have both given me hope for the future. Has Mark still got the use of his arms as the dr's told me he would loose all movement and would die by the time he is 20. I can see now that that may not be the case. Thankyou and good luck with your second child.
Abigail
Mark&MelissShaw
07-26-2004, 07:26 PM
Hi Mellisa,
It's such a releif to know that all these tests are usual if you know what I mean. I have seen a genetic counsellor but only once they went through all the genes. My son didn't need a biopsy they found the gene in his blood after his cpk test came back at just over 35000. I have another son who is 3 nearly 4 and he is clear but has his own problems due to meningitis which left him with brain damaged. Even though they both have their problems I still feel very lucky as I was told I was infertile before I had Jordan. Jordan is a mutation like Mark which in some ways was harder to understand as it would of made more sence for me to have been a carrier. Then at the begining I could of blamed myself but there was no real answers and even now I suppose there isn't. I think it's wonderful that you have a child. One of the things that went through my mind was that Jordan would'nt have any children of his own but you have both given me hope for the future. Has Mark still got the use of his arms as the dr's told me he would loose all movement and would die by the time he is 20. I can see now that that may not be the case. Thankyou and good luck with your second child.
Abigail
Hi Abigail,
I read your reply and I know things are hard but here is some good news, when a child is a mutation, sometimes their condition is easier than boys who have inherited it from their mothers. Mark had loads of friends who has died from DMD and they got it from the gene in their Mother's, all Mark's friends were stick thin and died basically when they were very young, now Mark is a large lad and thanks to his Nippy Ventilator he is still surviving and is Britain's oldest living male. Mark has to have everything done for him, he has carers but I look after him mostly myself, he has a hoist in his bedroom to get him in and out of bed, I bottle him when he wees, I toilet him, I dress him, I feed him and I wouldn't change that for anything, a disabled person needs love just like any of us do. Mark can use a computer by himself, he has movement in his hands but not much, he's been in a wheelchair since age nine and hasn't been able to walk since. Please do not listen to the doctors because children are proving them wrong all the time recently with DMD and I truly believe that your son will strive for a very long time and in all that time just love him, do whatever you can for him as you, your partner and your son will have many many brilliant years together, god bless you all.
It's such a releif to know that all these tests are usual if you know what I mean. I have seen a genetic counsellor but only once they went through all the genes. My son didn't need a biopsy they found the gene in his blood after his cpk test came back at just over 35000. I have another son who is 3 nearly 4 and he is clear but has his own problems due to meningitis which left him with brain damaged. Even though they both have their problems I still feel very lucky as I was told I was infertile before I had Jordan. Jordan is a mutation like Mark which in some ways was harder to understand as it would of made more sence for me to have been a carrier. Then at the begining I could of blamed myself but there was no real answers and even now I suppose there isn't. I think it's wonderful that you have a child. One of the things that went through my mind was that Jordan would'nt have any children of his own but you have both given me hope for the future. Has Mark still got the use of his arms as the dr's told me he would loose all movement and would die by the time he is 20. I can see now that that may not be the case. Thankyou and good luck with your second child.
Abigail
Hi Abigail,
I read your reply and I know things are hard but here is some good news, when a child is a mutation, sometimes their condition is easier than boys who have inherited it from their mothers. Mark had loads of friends who has died from DMD and they got it from the gene in their Mother's, all Mark's friends were stick thin and died basically when they were very young, now Mark is a large lad and thanks to his Nippy Ventilator he is still surviving and is Britain's oldest living male. Mark has to have everything done for him, he has carers but I look after him mostly myself, he has a hoist in his bedroom to get him in and out of bed, I bottle him when he wees, I toilet him, I dress him, I feed him and I wouldn't change that for anything, a disabled person needs love just like any of us do. Mark can use a computer by himself, he has movement in his hands but not much, he's been in a wheelchair since age nine and hasn't been able to walk since. Please do not listen to the doctors because children are proving them wrong all the time recently with DMD and I truly believe that your son will strive for a very long time and in all that time just love him, do whatever you can for him as you, your partner and your son will have many many brilliant years together, god bless you all.
Mark&MelissShaw
07-26-2004, 07:31 PM
Hi Mellisa,
It's such a releif to know that all these tests are usual if you know what I mean. I have seen a genetic counsellor but only once they went through all the genes. My son didn't need a biopsy they found the gene in his blood after his cpk test came back at just over 35000. I have another son who is 3 nearly 4 and he is clear but has his own problems due to meningitis which left him with brain damaged. Even though they both have their problems I still feel very lucky as I was told I was infertile before I had Jordan. Jordan is a mutation like Mark which in some ways was harder to understand as it would of made more sence for me to have been a carrier. Then at the begining I could of blamed myself but there was no real answers and even now I suppose there isn't. I think it's wonderful that you have a child. One of the things that went through my mind was that Jordan would'nt have any children of his own but you have both given me hope for the future. Has Mark still got the use of his arms as the dr's told me he would loose all movement and would die by the time he is 20. I can see now that that may not be the case. Thankyou and good luck with your second child.
Abigail
Hi Abigail,
I read your reply and I know things are hard but here is some good news, when a child is a mutation, sometimes their condition is easier than boys who have inherited it from their mothers. Mark had loads of friends who has died from DMD and they got it from the gene in their Mother's, all Mark's friends were stick thin and died basically when they were very young, now Mark is a large lad and thanks to his Nippy Ventilator he is still surviving and is Britain's oldest living male. Mark has to have everything done for him, he has carers but I look after him mostly myself, he has a hoist in his bedroom to get him in and out of bed, I bottle him when he wees, I toilet him, I dress him, I feed him and I wouldn't change that for anything, a disabled person needs love just like any of us do. Mark can use a computer by himself, he has movement in his hands but not much, he's been in a wheelchair since age nine and hasn't been able to walk since. Please do not listen to the doctors because children are proving them wrong all the time recently with DMD and I truly believe that your son will strive for a very long time and in all that time just love him, do whatever you can for him as you, your partner and your son will have many many brilliant years together, god bless you all.
It's such a releif to know that all these tests are usual if you know what I mean. I have seen a genetic counsellor but only once they went through all the genes. My son didn't need a biopsy they found the gene in his blood after his cpk test came back at just over 35000. I have another son who is 3 nearly 4 and he is clear but has his own problems due to meningitis which left him with brain damaged. Even though they both have their problems I still feel very lucky as I was told I was infertile before I had Jordan. Jordan is a mutation like Mark which in some ways was harder to understand as it would of made more sence for me to have been a carrier. Then at the begining I could of blamed myself but there was no real answers and even now I suppose there isn't. I think it's wonderful that you have a child. One of the things that went through my mind was that Jordan would'nt have any children of his own but you have both given me hope for the future. Has Mark still got the use of his arms as the dr's told me he would loose all movement and would die by the time he is 20. I can see now that that may not be the case. Thankyou and good luck with your second child.
Abigail
Hi Abigail,
I read your reply and I know things are hard but here is some good news, when a child is a mutation, sometimes their condition is easier than boys who have inherited it from their mothers. Mark had loads of friends who has died from DMD and they got it from the gene in their Mother's, all Mark's friends were stick thin and died basically when they were very young, now Mark is a large lad and thanks to his Nippy Ventilator he is still surviving and is Britain's oldest living male. Mark has to have everything done for him, he has carers but I look after him mostly myself, he has a hoist in his bedroom to get him in and out of bed, I bottle him when he wees, I toilet him, I dress him, I feed him and I wouldn't change that for anything, a disabled person needs love just like any of us do. Mark can use a computer by himself, he has movement in his hands but not much, he's been in a wheelchair since age nine and hasn't been able to walk since. Please do not listen to the doctors because children are proving them wrong all the time recently with DMD and I truly believe that your son will strive for a very long time and in all that time just love him, do whatever you can for him as you, your partner and your son will have many many brilliant years together, god bless you all.
Abigail
07-27-2004, 09:18 AM
Hi Mellisa,
Thankyou for answering my questions it's helped alot. I have told my friends and family all about you and Mark and your little boy and they think it's amazing so thankyou for giving me back some hope.
Thankyou
Abigail
Thankyou for answering my questions it's helped alot. I have told my friends and family all about you and Mark and your little boy and they think it's amazing so thankyou for giving me back some hope.
Thankyou
Abigail
Mark&MelissShaw
07-28-2004, 12:32 PM
Thanks for saying we've given u hope, we know how hard it is for people when this horrible disability strikes. As long as you believe in all the best things that can happen, life will be easier for you. Never blame yourself as Mark says it is simply a freak accident that this can happen so once again the best of luck. Let us know how Jordan gets on in life. I'm not allowed to give you my e-mail address as it is in the rules of these boards.
Love Melissa
xx
Love Melissa
xx
soonerpgh
09-08-2004, 10:24 PM
:nono: Hi, My husband just turned 33 yesterday. He was diagnosed with LGMD when he was a teenager. We have been married 5 years and have a 2 year old son together. I asked the MDA neurologist what the chances of my little boy having MD and she said, "unlikely". I don't like that answer. How did you all find out if the MD in your families was genetically passed or a mutation? I wonder if the reason they haven't checked Philip (my husband) or his family is because they haven't identified the affected gene for his MD yet??
Also, after many years of braces, stumbling and needing constant assistance to walk, he has resigned himself to a wheelchair. The MDA is providing him with a nice new automatic (his arms are very weak as well) wheelchair. The only problem is the outrageous price of the vans modified to accomodate him. Do any of you know of an organization that helps handicapped people get these vehicles? (We live in Oklahoma, USA) The thought of loosing his independence is devestating to him.
Also, after many years of braces, stumbling and needing constant assistance to walk, he has resigned himself to a wheelchair. The MDA is providing him with a nice new automatic (his arms are very weak as well) wheelchair. The only problem is the outrageous price of the vans modified to accomodate him. Do any of you know of an organization that helps handicapped people get these vehicles? (We live in Oklahoma, USA) The thought of loosing his independence is devestating to him.
marley
09-10-2004, 02:42 PM
Hello,
I don't know any info on the van but as far as your son is concerned I have a little info. I am 27 years old and I have fshd. I also have two kids. i had them before I knew about my new found friend. my doctor told me that the kids both have a 50/50 chance of getting it. They may or may not. I will not know if I have passed this on until either my children are showing symptoms or they are age of concent. With fshd you can get a variety of symptoms. I have all of them but my kids may not be able to whistle and that would be the worst of it. So the doctor said their have been cases of kids sueing there parents because they did not want to know. it will drive me nuts that I do not know but what are you gonna do. If there is anything else I can help with just ask. I live in canada so the van thing I'm not sure. good luck
Marley
I don't know any info on the van but as far as your son is concerned I have a little info. I am 27 years old and I have fshd. I also have two kids. i had them before I knew about my new found friend. my doctor told me that the kids both have a 50/50 chance of getting it. They may or may not. I will not know if I have passed this on until either my children are showing symptoms or they are age of concent. With fshd you can get a variety of symptoms. I have all of them but my kids may not be able to whistle and that would be the worst of it. So the doctor said their have been cases of kids sueing there parents because they did not want to know. it will drive me nuts that I do not know but what are you gonna do. If there is anything else I can help with just ask. I live in canada so the van thing I'm not sure. good luck
Marley
Sooner_Magic_14
09-13-2004, 11:15 AM
:nono: Hi, My husband just turned 33 yesterday. He was diagnosed with LGMD when he was a teenager. We have been married 5 years and have a 2 year old son together. I asked the MDA neurologist what the chances of my little boy having MD and she said, "unlikely". I don't like that answer. How did you all find out if the MD in your families was genetically passed or a mutation? I wonder if the reason they haven't checked Philip (my husband) or his family is because they haven't identified the affected gene for his MD yet??
Also, after many years of braces, stumbling and needing constant assistance to walk, he has resigned himself to a wheelchair. The MDA is providing him with a nice new automatic (his arms are very weak as well) wheelchair. The only problem is the outrageous price of the vans modified to accomodate him. Do any of you know of an organization that helps handicapped people get these vehicles? (We live in Oklahoma, USA) The thought of loosing his independence is devestating to him.
NO WAY! I'm in OK too!! I got my van at a place in Guthrie, Newby-Vance Mobility. From where I am, I get on I-40 West, hit I-35 North, take the first Guthrie exit, and it's on the right side of the road right after you exit. They sell vans with the ramps or lifts already installed. Are you on Voc-Rehab? My parents had to buy the van, but VR paid for the ramp and the lowered floor
Also, after many years of braces, stumbling and needing constant assistance to walk, he has resigned himself to a wheelchair. The MDA is providing him with a nice new automatic (his arms are very weak as well) wheelchair. The only problem is the outrageous price of the vans modified to accomodate him. Do any of you know of an organization that helps handicapped people get these vehicles? (We live in Oklahoma, USA) The thought of loosing his independence is devestating to him.
NO WAY! I'm in OK too!! I got my van at a place in Guthrie, Newby-Vance Mobility. From where I am, I get on I-40 West, hit I-35 North, take the first Guthrie exit, and it's on the right side of the road right after you exit. They sell vans with the ramps or lifts already installed. Are you on Voc-Rehab? My parents had to buy the van, but VR paid for the ramp and the lowered floor
soonerpgh
09-14-2004, 09:27 PM
NO WAY! I'm in OK too!! I got my van at a place in Guthrie, Newby-Vance Mobility. From where I am, I get on I-40 West, hit I-35 North, take the first Guthrie exit, and it's on the right side of the road right after you exit. They sell vans with the ramps or lifts already installed. Are you on Voc-Rehab? My parents had to buy the van, but VR paid for the ramp and the lowered floor
Talk about coincidence...he is at school right now, being paid for by (you'll never guess) voc rehab! I had no idea they would pay for that stuff! I think he asked before and they told him no?? We actually have a van right now (with a hand brake, installed by... Newby-Vance). We live in Oklahoma City and I take it from your directions that you must be east of us... Shawnee? I wonder if we bought one of the new modified vans, if voc-rehab would pay the difference between the regular purchase price and the price after modifications. Let me know what the process was for your van! Nice to meet you fellow Sooner fan!
Talk about coincidence...he is at school right now, being paid for by (you'll never guess) voc rehab! I had no idea they would pay for that stuff! I think he asked before and they told him no?? We actually have a van right now (with a hand brake, installed by... Newby-Vance). We live in Oklahoma City and I take it from your directions that you must be east of us... Shawnee? I wonder if we bought one of the new modified vans, if voc-rehab would pay the difference between the regular purchase price and the price after modifications. Let me know what the process was for your van! Nice to meet you fellow Sooner fan!
Sooner_Magic_14
09-15-2004, 03:04 PM
Talk about coincidence...he is at school right now, being paid for by (you'll never guess) voc rehab! I had no idea they would pay for that stuff! I think he asked before and they told him no?? We actually have a van right now (with a hand brake, installed by... Newby-Vance). We live in Oklahoma City and I take it from your directions that you must be east of us... Shawnee? I wonder if we bought one of the new modified vans, if voc-rehab would pay the difference between the regular purchase price and the price after modifications. Let me know what the process was for your van! Nice to meet you fellow Sooner fan!
They told me no too. They told me no to that and lots of other thing that guess what, they ended up paying for! lol You just have to get the right counselor. The one I finally got was one that was really in it to help people. They paid for my college tuition, books, fees, someone to walk me to class to carry my books and help with the elevator, a calculator I needed for my Algebra class, my laptop (after a LOT of begging and a LOT of letters from the school saying it was a requirement), the ramp/lowered floor on the van, the conversion so I could drive it, my driver's training, a couple of van repairs... I lived in Shawnee for a while (went to St. Greg's!), now I'm in the Tulsa area.
These are some cool coincidences! I don't meet very many people online from OK and I come here twice and meet you and look at what all we have in common!
My mom did most of the process/red tape crap on the van, so I'll talk to her about it tonight and get back to you. I'll tell you now though to not just go buy one of the new modified ones, and hope VR will re-imburse you. You just never know. I do know that their funds are tighter now than they were a few years ago.
The gang at Newby-Vance work with Voc Rehab a lot, so that helps.
They told me no too. They told me no to that and lots of other thing that guess what, they ended up paying for! lol You just have to get the right counselor. The one I finally got was one that was really in it to help people. They paid for my college tuition, books, fees, someone to walk me to class to carry my books and help with the elevator, a calculator I needed for my Algebra class, my laptop (after a LOT of begging and a LOT of letters from the school saying it was a requirement), the ramp/lowered floor on the van, the conversion so I could drive it, my driver's training, a couple of van repairs... I lived in Shawnee for a while (went to St. Greg's!), now I'm in the Tulsa area.
These are some cool coincidences! I don't meet very many people online from OK and I come here twice and meet you and look at what all we have in common!
My mom did most of the process/red tape crap on the van, so I'll talk to her about it tonight and get back to you. I'll tell you now though to not just go buy one of the new modified ones, and hope VR will re-imburse you. You just never know. I do know that their funds are tighter now than they were a few years ago.
The gang at Newby-Vance work with Voc Rehab a lot, so that helps.
soonerpgh
09-15-2004, 10:48 PM
Thanks for the info! He has an appointment with his voc-rehab counseler on Friday, so hopefully we can get the ball rolling. He also went to the MDA clinic today and they are thinking maybe he has Beckers Dystrophy instead of Limb-Girdle. We just have to wait on the DNA test about that.
Delightful
12-10-2004, 05:20 PM
I wonder what Canada has for me then....... i have not done any research yet, as of now i do not need assistance for anything, but finding work is limited....I would love to go back to school but with only working part time i cant afford it....... where do i start to look? I found out i had LGMD when i was 16 and am now 23.... any info would be great...
Jenna
Jenna