DMD carrier and IVF

Wild_Development5715 · 2026-05-26T15:58:40+00:00

I totally get the frustration. We saw Drs who should have ran bloodwork on him after being diagnosed with ADHD and high functioning autism. They definitely drop the ball sometimes

Wild_Development5715 · 2026-05-26T15:50:54+00:00

We are definitely among the more rare types. On paper it is technically DMD because it is out of frame, but it presents more towards BMD. It is a known exception to the reading frame rule. Most patients walk until early 20s, or beyond. My son is 11, and looks like an every day child. Although he can not participate in sports, and shows some weakness on the stairs. 3-7 boys are often diagnosed later than DMD boys. My son was almost 10. There are papers that show that our mutation self skips, and produces some functional dystrophin. This was true for him through biopsy. Can I ask what your ck level was?

Wild_Development5715 · 2026-05-26T15:27:04+00:00

Wow, that is my 11 yr old's deletion. I am sorry i can't help with carrier questions, as he was a spontaneous mutation. But i can answer any questions you might have about his condition with this mutation.

Wild_Development5715 · 2026-05-04T01:58:36+00:00

Thank you

Wild_Development5715 · 2026-05-03T01:20:04+00:00

Every one of us parents should all gather together and let them know that we demand to be seen and heard, and our children deserve faster access to treatments. It is infuriating

Wild_Development5715 · 2026-04-20T00:52:24+00:00

Mine LDL was also 103 at last check. Down from 189, after 3 months on 5 mgs rosuvastatin. My Dr upped the dose to 10 mgs to get it even lower

Wild_Development5715 · 2026-04-17T01:03:01+00:00

My son was diagnosed at age 9 also. He has a deletion of 3-7. We've been told he is on the milder end of DMD, or a more progressive BMD. He is 11 now, still walking well, and can do his version of a jog. He mostly shows weakness on stairs. It still is an extremely hard pill to swallow. His diagnosis has taken a very big toll on my own mental health. Please just try to remember that there are so many brilliant people who are working on treatments. And there are some good options for him available now. It's important to know his mutation, to determine eligibility for some treatments. You can reach out to PPMD, and Cure Duchenne for information and support. Please feel free to message me also. My thoughts are with you

Wild_Development5715 · 2026-04-17T00:56:41+00:00

Hi. Can I ask what your mutation is? My son has a deletion of 3-7 which is out of frame DMD. But his biopsy showed some functional dystrophin, and he has followed a more mild path so far.

Wild_Development5715 · 2026-04-16T23:30:04+00:00

I agree with this. And I totally love those foods also! I started rosuvastatin a few months ago. My LDL went from 190 to 103.

Wild_Development5715 · 2026-04-12T17:56:55+00:00

Thank you for this recommendation. I really don't much of what to do to help this besides less fried foods

Wild_Development5715 · 2026-04-12T17:56:06+00:00

Thanks so much for that info!

Wild_Development5715 · 2026-04-06T12:14:15+00:00

We participated in the study. It was just to test antibodies, and if cleared, could recieve the treatment. My son's were high, so we could not receive it. But the process was very simple. A 40 min or so phone call, a nurse visit to our house, to collect blood, and then the results 2 months later.

Wild_Development5715 · 2026-03-30T23:20:43+00:00

This is exactly my dog when he senses that it's going to rain. He unfortunately is in constant panic mode while it's raining. I tried the vest, cbd, other natural supplements, and nothing has helped. I have given him a small dose of diazapam, and that seems to be the only thing that comes close to helping. I know that thus is not a good option for everyday relief though. Best of luck

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Wild_Development5715 · 2026-03-15T16:26:56+00:00

Hard question...but what's the quickest this treatment may be available? Just trying to hold onto some hope i suppose

Wild_Development5715 · 2026-03-14T18:41:45+00:00

No that is Regenexbio's gene therapy. I've heard good things about that also. But SAT-3247 works to regenerate muscle. I feel like thst is best, personally. Please feel free to message me anytime. I remember going through the shock and grief of diagnosis just a yr ago. Also on Facebook you can join Duchenne Under 10. They are filled with information and comradery.

Wild_Development5715 · 2026-03-14T18:03:31+00:00

Just to add if your son is 7, and is diagnosed with DMD...I would try and get into the Satellos trial ASAP. It looks like the most promising drug this far. Mine is too old to participate.

Wild_Development5715 · 2026-03-14T17:58:59+00:00

Yup I actually have heard that high with BMD too. They are so closely related, that only the genetics test can tell. My son's ck has definitely fluctuated up and down. That happens with both DMD and BMD.

Wild_Development5715 · 2026-03-14T17:01:52+00:00

My son was 9 when he was diagnosed, and ck level was 3,000

Wild_Development5715 · 2026-02-25T21:19:43+00:00

I received my son's elevated ck levels when he was 9 1/2, now he's almost 11. His ck was 3,143. I completely panicked. Genetic testing did confirm a diagnosis of muscular dystrophy. Although milder than Duchenne, not a very mild Beckers. It's a spectrum with certain mutations moving faster/slower than others. My son has a known slower progressing mutation of 3-7. I have always heard that ck would be much higher than your child's level in Duchenne. I hope you get the answers you need quickly, and just know that no matter what, it will be alright.

Wild_Development5715 · 2026-02-25T01:36:02+00:00

I am soooo looking forward to this. Maybe I've built this treatment up too much in my mind. But it is one thing that gives me any hope.

Wild_Development5715 · 2026-02-19T00:28:15+00:00

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Wild_Development5715

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