Hi Wendy Where in san diego do you live? We are in Rango san diego just past El Cajon. do you go to mda clinic? and how is your boy doing? I have had a diffcult week Caleb is now in afos and not wanting friends to know. school friends cause it makes him different.If I could have had someone to call it would been so helpful. hoping we can become friends only someone going on this journey understands. I talk to God everyday but sometimes it nice to talk to another Mom..I will give you my #if you want please let me know. Penny
Just joined deletions group, my Billy, age 9 as of January 6, has deletion of exon 52 and we are waiting for trial to clear and to start. But I was reading and old message by you regarding school and p.e. etc. We are in Pittsburgh, PA and I don't know what your state's laws are but should be the same according to ADA, your school must accommodate your son with an elevator. I've gone to battle with my school district since kindergarten, went to mediation, one step prior to suing. Billy is now in 3rd grade and things are much smoother now because I had to get loud in a tactful diplomatic voice but it worked and they are now very accommodating. Let me if you need info as you deal with your son's school. Good luck and stay positive, we are all in this together and will help.
I can relate about not bringing yourself to finding out...it is heart wrenching...I got to the point where I was like, okay, I need to know...I try not to let my fear get in the way of the reality at this point. When I was diagnosed as a carrier, after my oldest was diagnosed, we knew what that meant for the baby. When we got his results, it was the second worst day of my life...his CK were higher than his brother. Not sure how we made it through ...god, if it weren’t for my husband, I am not sure we could have made it through the "dark days".
The boys are good though, Malaky (2), you could never know he has DMD, and Matt, my oldest (8), well we just take it day by day. We try and stay super positive. He is totally ambulatory, no assistance at all, but wears night braces.
We live in a city, with about 15 parents with children with DMD, and we have a wonderful children’s hospital which helps a great deal.
I have come to terms with the diagnosis, I believe I will never accept it, but I know in my heart that my boys were sent to me for a reason, and without them, life would mean nothing.
I will keep you and the boys in my prayers, and know that if you need anything, I am here…take care my dear!!
Hi Wendy, i was just looking at your page and i noticed someone asking about Ethan's CK....I have two boys as well, both with DMD...I assume your a carrier? Did you get the results? (sorry, you can also tell me to mind my own business:))
Just want to make sure you know your not alone...I remember waiting for my youngests results...It was gut wrenching...
Yes, Dr. Wong recommended the CoQ10 and actually increased it after the last visit in July, she also increased the vit D; the only thing i did on my own was the fish oil; i have a friend who did a lot of research on the benefits of fish oil and had amazing results with it.
Hi, Wendy thanks for your response, I did find there is some info under discussions on supplements on here and also another place that has a chart on what some other have used and their side effects from them. I just realized our boy's do have the same deletions. I'm still researching on what brand and type vitamin D3 to get and of the Cq10, I also have seen some are using some thing called Noni juice. I will post again once I find a place to buy the stuff. I'm checking prices online and local stores.
Thanks for your note. Jordan is a very picky eater and does not eat much but here are the main foods in his diet:
-fish, grilled, mainly tilapia or salmon
-chicken, grilled or baked
-pasta with cheese
-fresh blueberries & blackberries
-eggs, milk, orange juice, kolaches
-Simply Lemonade-he LOVES this stuff, especially raspberry
-fruit snacks (Welch's & nuggets)
I push him to drink lots of water but he still doesn't get as much as he should. He takes the following pills & supplements every day:
-deflazacort, 22.5 mg, same dosage for 3 of 4 years (dropped from 30 mg)
-fiber con, 2 tablets (he gets very constipated)
-CoQ10, 300 mg
-CitraCal, 4 tablets (2000 mg Vitamin D & 1600 mg Calcium)
-Fish Oil, 4 capsules
-Centrum Complete multivitamin
He also takes fosamax weekly for osteoporosis and it has improved his bone density.
I found it very interesting that when we were on our 2-week vacation he had a BM every other day, which is a lot for him. He usually goes 5 or 6 days without one. I think it was the result of so much walking. He normally spends hours every day on his computer and doesn't get nearly as much exercise, except for swimming, which we try to do every day.
I hope this is helpful. Let me know if you have any more questions. Always happy to share what we have learned.
Thank you! The best to your sweet angels too. Enjoy the weekend. I know it's hard, but try not to think about Ethan;s CK all weekend. I love Jake's hair. A Bella what a beautiful little princess. I will be thinking about you guys on Monday. Best Wishes.
We would love to get together for a play date. I work during the week so it would be tuff to during the week, but maybe we could meet on a weekend.
I hope you had a good trip to see Dr. Wong. We saw her in Nov. and started the steriods on Jan. Tanner walked up and down stars for the first time by himself about two weeks after starting the steriods.
Give me a call and we can work out a time to get our boys together. (760) 822-3756 Talk soon, Traci
We never started steroids for the very reason that our son is mildly autistic. We still have issues everyday with him and the stubbornness that comes with autism cuz they just don't understand why they can't get what they want along with the inability to be able to rationalize. With that comes some explosive behavior and for that reason, steroids would most likely intensify his behavior. But, we just got a prescription for deflazacort and we may be ordering some within the next week or so to give it a try. Who knows, maybe Micah won't have increased anger from the steroids...we won't know until we try.
As for a monthly support group, I think it is a good idea. It is something that has been passed around in the past, but never came to fruition. You could always post the idea on the California Families group page to San Diego residence to see what others think. Of course, not all the families in SD are on this website, but it's a start.
Just got your message. Cathy did indeed give her contact information to Dr Cohen to pass on to you. Her cell phone # is: 917 226 5020. My # is: 917 714 5625. Cathy and I had mentioned in the past that we should get together as you live close by (Penasquitos, correct?), and our boys are close in age-Jimmy turned six end of last year. We live in High Valley in Poway, about 10-15 minutes away. We have a pool, great excercise as well as great fun for the kids, lets try to arrange a play date soon. I think it would be great for our boys to beome friends. Jimmy has schoolfriends but obviously has a hard time keeping up. He also has a brother (and sister-Jimmy is one of triplets) who happens to be very athletic. Anyway, please do call Cathy or myself and lets get together,
There have been a couple instances where families have gotten together. But, for the most part, it is difficult to get everyone to agree on a date. I see more often that families will keep closer in touch with each other depending on the age of their children and the location of San Diego that they reside. If close in age and close in residence, then there's an easy match for play dates or get togethers.
Where are you located?
Since you are in SD now, please go to the Kick for a Cure website and click on the link "Tell us who you are!". We want to help SD area families who are dealing with DMD, which you can find out how we help on the "Our Cause" page.
I am always sad to learn of another family having to go through all of this, but I am happy you found us. We are in the San Diego North County Coastal area, and would love to talk with you and hopeful met up. How does Jake do keeping up with others his age?
I am sorry to hear of your sons diagnosis of DMD. I admire you for reaching out so early in his diagnosis. PPMD is a great community of support and it brings us all together to encourage, help, and support one another during this tough time. It took me two years after Aidens diagnosis to get involved or talk to others going through the same thing. It really helps to know you are not alone. I wish you and your family all the best.
Is the lunch at Chevy's this Sat 9/13?