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Carrier Moms

For moms who are carriers of Duchenne

Members: 132
Latest Activity: Mar 16, 2016

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Carrier Who Decided to Get Pregnant Anyway

Started by Jessica Argueta Tucker. Last reply by Sif Hauksdóttir Jan 4, 2013. 16 Replies

3 sons with DMD

Started by Betty Vertin. Last reply by Laurie Barton Mar 14, 2012. 3 Replies

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Comment by Lynne Taylor on February 2, 2009 at 5:55pm
Hi Everyone
My son Ross is 14 years old and we have known he had Duchennes since he was 9 weeks old so have had a long time to get used to the idea. I found out I was a carrier within a few months, I have 2 sisters and they were not carriers but my mum was. I would like to share a conversation I had with my daughter Megan who is 10 years old. We have not had her tested yet as I would prefer it to be her decison to be tested. Anyway Megan, Ross and I were chatting about how Ross got DMD and she asked me if she could be a carrier like me and have a boy with DMD. I said yes there could be a chance and do you know what my wonderful girl said "That would be great if I had a boy like Ross, it would not matter to me". I realise that she might not have the same view if she knew the full extent of his condition. But I was so pleased that she saw Ross's disablilty as the norm and would be very happy to have a boy just like Ross.
Best wishes Lynne
Comment by Holly Now on January 8, 2009 at 10:01pm
My oldest son was diagnosed when he was 3 1/2(2002) and my other son was 6 months at the time and we had no signs of DMD anywhere in my family. My youngest son is fine,so we just fiqured it was a freck thing that happened and I was not going to have anymore children anyhow so I didn't get tested. My sister had 2 girls with her first marriage and she wanted to have baby with second husband and I told her she better get tested just to make sure and it turns out she was a carrier,we were not excepting that! She had the same mutation as my son so I guess that means I'm a carrier. So know her daughters will have to be tested to see if they are carriers. My sister and I want our mother to get tested just to see where it started.
Comment by Barb Rush on December 12, 2008 at 12:42pm
Hi all, I found out in Jan of 2006 the my oldest son had DMD he was 2 1/2 at the time we had just had our second son in September so CHOP test both of them. Surpirse that my little guy is fine no DMD or nothing. I found out a few months later that I was a carrier, so they tested my mom nope. it started with me. We have no history of this that we know of in our family. So it can just pop-up unexpectedly.
Comment by Gisel Rivero on November 9, 2008 at 9:08pm
I never knew or even thought I could be a carrier. Between my sisters I have 3 nephews and 3 nieces and all which are just fine. My son David is 3 years old and thank god he has always been very healthy. Am only 5"1 and the most I have ever wieghed has been 130lb 9 months pregnant, and David weighed 8lb. So when I got the news that I was pregnant with Dylan I was so excited. All that ened as soon as Dyaln was born because we or OB saw this coming with no family history of DMD we had no special genetic testing done. And Dylan was perfect in utero. But from the day he was born he had to be intubated and that feeling of not knowing what going on what happen for such a long time was the hardest. We didn't find out it was duchenne until after he passed away. I found out I was a carrier the same day we found out about his test. I had gotten tested at the children hospital after one of his test showed it could have been X-linked. We had our son David test and it was the longest 8 weeks just thinking that we could also lose him just after having lost Dylan, but thank god he got my "good" gene. For that I thank god everyday, but I still can't help feeling guilty although it's not my fault.
Comment by Tammy Gregory on October 31, 2008 at 9:03pm
My name is Tammy and I found out in January 2006 that I am a carrier for DMD. My 2 sons were diagnosed in November 2005 with DMD. My mother found out when I did that she's a carrier also. There is no family history of this. My sons are 12 and 8.
Comment by Connor's Mom - Deanna on October 6, 2008 at 7:25pm
My son Connor was diagnosed last May with DMD. I found out today that I am a carrier. I never knew what DMD was until Connor was diagnosed. No one in my family has DMD. I have always been athletic and continue to exercise. I was even nominated most athletic in high school, kinda ironic knowing what I know now. Looking back there were some signs but nobody would have guessed DMD. Every time I have my blood taken, I have high liver enzymes and the doctor thinks that I have hepatitis. I always test negative for hepatitis. I even had to see a liver specialist who could not find anything wrong with my liver. Once a nurse asked if I excercised a lot and said that the enzymes could be coming from my muscles. Connor has high liver enzymes and they initially thought he had hepatitis too. Now I know the high enzyme count is from the muscle not from the liver. Connor had a muscular body and legs as a baby and people joked that he must work out. My mom said that I had the same body as a baby. I also get growing pains if I do too much excercising or cleaning. I thought this was normal. I had to call my 3 sisters and explain to them that they will have to be tested now. I am the oldest and the only sister to have kids.
Take care everyone.
Comment by Ivy Scherbarth on October 1, 2008 at 11:56pm
A lot of us have found it frustrating that we've been told we can't "ethically" test our daughters until they reach an "age of consent". But of course, we can't wait until they are 18 or 21 ... even 16 could be too late in this day and age if we want them to make an informed decision on whether to have a baby themselves. It seems to me a lot less ethical to have a 12 year old get the test because her parents told her to tell her doctor that they didn't tell her to tell him that....

Besides which, as we all know, carriers can have symptoms. Sometimes they are subtle, like the development of cardiomyopathies. And there seems to be a thyroid connection for us too.

Our muscle clinic folks, who I otherwise like very much, wouldn't test our 3 1/2 year old daughter. Luckily, we have a sympathetic young pediatrician who was willing to order the test for her. She did the blood draw two weeks ago and we'll get the results near the end of this month. It seems to me that getting a second opinion is a good idea in just about every aspect of MedicalLand. Good luck.
Comment by Veronica E. on October 1, 2008 at 4:18pm
Hi, all. I'm the mom to Holly, 3 1/2 and Max, 5 months, who has DMD. I had three uncles who had Duchenne, but my mom has three girls and was never tested. I knew since I was 12 that having a son with DMD was a possibility, but I didn't really think it would happen to me. I knew my grandma would have had to pass on the gene to my mom, she'd have to pass the gene on to me, I'd have to have a boy, and he would have had to get the "bad" gene. I felt the odds were against my son having it, so we had two kids. (I found out when I was pregnant with Max that I was a carrier.)

I may feel differently as Max gets older, but I really don't feel guilty or irresponsible for bringing a kid with DMD into the world. I can't help but think if my mom used that line of thinking and didn't have kids, my beautiful sisters, myself, my niece and my wonderful children wouldn't be here. And I grew up with awesome, funny stories about my uncles and what great people they were. They always said that they hated when people felt sorry for them, and they loved their lives and were glad to be here.

I actually didn't know before recently that in 35% of boys with DMD, it's just a random mutation and not inherited. I have to think the diagnosis is even more difficult for people with absolutely no preparation of knowledge about the disease.

My husband still might want one more kiddo, but I think we're done. Besides worrying about another son having it, I personally feel that we're going to have our hands full providing a great life for my two kids, and I'm already worried about making sure my little girl gets enough attention in the future. I know it's a very personal decision, though, and I respect whatever decision other moms make.

Looking forward to getting to know everyone better!
Comment by Lisa Jones on September 25, 2008 at 8:03am
Jessica,
I am sorry to hear that you are a carrier. I think for many of us, it is the last thing we expected to find out about ourselves. A few years ago, my dad's cousin's grandson (5th cousin to me) was diagnosed with DMD but my son has a duplication of exon 2 and he has a deletion, so I believe the two cases are just coincidental. This goes to show how the disease can strike anyone and how often it does. It would be interesting to know what mutation your relative has.
Comment by Jessica Florkowski on September 24, 2008 at 10:20pm
Hello, I am Jessica. I am 31 yrs. old and have a 6yr. old son Kyle without DMD and a 5yr. old son Patrick with DMD. Patrick was Diagnosed at age 2. I recently got tested to see if I am a carrier because we were thinking of having another child. Now that I know I am a carrier we are done having children. I thought there was no family history of any genetic illnesses in my family but last evening I discovered that my Dad's step-cousin's son has MD. I have alway been very athletic and strong for being a girl. Some days are better than other. Some days I feel so quilty, but I never would have thought I was a carrier for DMD. I have the same deletion of axons 8-29. We are dealing with some behavior issues presently with Patrick, but overall he is happy and brings joy to our lives everyday. I feel truely blessed to have my family. Take care everyone.
 

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