I know how you feel. I was so nervous. After we ordered it, it took us a while to actually start it. Colin has always been at the top of the charts (he was almost 9 lbs. at birth, 2 weeks early), so I was very concerned about the weight gain. We have changed our diet- he already ate pretty healthy, but we are basically just limiting juice and eliminating processed foods as much as possible, watching his sodium. He just had an appointment last week, and his BMI had actually decreased since last time. He is able to do more, so I think he's burning more calories. So nothing yet, and it has been about 31/2 months. He is pretty mild-mannered, and we did notice a slight change in his emotions. A little more agressive and cries a bit more. But that is actually going back to normal now. He is hungrier now, so we just offer fruits and veggies when he says he's hungry. Good luck. I think you will be happy you made the decision to start it.
Let's keep in touch- our sons are the same age, and we have daughters the same age, too. I'm a teacher, too! Let me know how it goes.
I have a four-year old son with DMD as well. Your kids are beautiful!
Colin was diagnosed this past summer. We started him on Vitamin D, CoQ10, and Omega-3 right away. I think the Vitamin D or something started helping right away. That along with daily stretching, and the night splints to keep his heel chords stretched. Is Gus doing those? They really helped Colin. Looking at your pics, your little Gus reminds me a lot of Colin.
We did finally start Colin on deflazacort about 3 months ago. The difference in his strength, stamina, and energy is huge. I know it is scary, but Colin can do so much more, and he is so much more confident. We have family in Charlestown, NH, so we do come east from Washington State every few years. Hang in there. We are pretty new to all this, too. It's hard, but it helps to know you're not alone.
Tonya, I know I can't believe it either. Sometimes I "forget". It just doesn't seem possible that I had 3 healthy boys before Wyatt. (Which I thank God for everyday) Initially I was sure that it was a random event and I couldn't be a carrier. Unfortunately, it turns out that not only I am a carrier, but so is my Mom and 15 year old daughter.
Wyatt takes 3000IU of Vitamin D, 50mg of CoQ10, and 15ml daily of an antioxident drink, Also he takes like every other day a liquid baby laxative (he has horrible constipation).
We are slowly starting him on other stuff too, he's just so small for some of the stuff (protandium, Haelen 951, etc.) So he will start those things sometime this year.
Hi Tonya, Your kids are just gorgous. My nanme is Melissa and my son Wyatt was diagnosed on Jan 9, 2009. He's 22 months old and our 5th child. We had never even heard of DMD prior to Wyatt's diagnosis. I hope you find comfort and support here, I did. My cyber friends got me through alot of dark times. God Bless your family.
I'd be glad to let you know everything that we do. I'm so sorry to hear about your son. We are all here for support. This ist he greatest place to be for help and support. I've got a very, very busy 3 weeks ahead, but let me know anytime. It may be after that until I can respond. Kelvin has improved a lot over the last few years, through everything we do, steroids, supplements, braces, etc. He is doing great for 7 years old. Thanks, Michelle
Oh My God. I hope you are feeling better, physically anyway. That's horrible. Keelan's diagnosis came right on the heels of my Mothes losing her battle with lung cancer. Someone said that it's a 'compliment from God' when everything happens at once like that b/c He thinks you are strong enough to handle it. At some point last year I figure God thought I was awesome! :)
I am not a carrier. Keelan skips exon 42-46. If Gus has what's called the Stop Codon or
Yes to MGH (love it!) and we still take him to Children's too, but less often. Not sure how long insurance will cover both. Look into Jett Foundation as well. Christine McSherry pulled together the clinic at MGH with Dr. Brian. They are both wonderful sources of help and information. How long ago did you guys get Gus's diagnosis? Keelan was 15 mos. when we found out by accident. He was tested for Celiac by a gastroentonologist who noticed he's stopped growing (for awhile). He found his high CK by accident. We were referred to Childrens and the rest is history.
Hi Tonya. We are in Haverhill, MA and my 2 year old son was diagnosed last year as well. Let me know if you need anything. You have definitly gotten some good info! Keelan was diagnosed in December '08 and I just remember the Holidays being a blurrr last year. It does get easier, somewhat.
I went beyond the word limit meaning the answer to too much information was yes it was!
I apologize if this is too much information. I just feel strongly that Dr. Brian Tseng is by far the best choice in this area.
I have also looked at Dr. Wong and Cincinati quite a bit. I talked to people there and I felt as though JB was getting the same care here, with more personal attention and focus on the future research.
Again, Call tomorrow if you would like Tonya. I will be in the car from 11-6 and I am sure I will welcome the distraction from my husband and 2 kids.
Tonya, It is so hard to get a grip on your son's medical care when you are an emotional wreck (at least I was). Our son was quite young at the time of his diagnosis. We had been referred to Children's for a neurology consult. Growing up in this area I always assumed that Children's was the best. I do believe that Children's has wonderful treatment to offer many children. In the case of Duchenne I do not believe that is the case. When we met with the neurologist at Childrens to receive the diagnosis we were give the cold hard facts. I do not dispute any of those facts. I dispute that we were not told about all the change that can and will take place in our sons' lifetime. We were not encouraged to see the DMD specialist quickly as there was not much they could do at this time.
I understand there is no cure at this time but going to MGH and being around brilliant, positive specialists is amazing.
Dr. Tseng is young, enthusiastic and dedicated. He sees patients one day a week in the clinic (which is wonderful) and the rest of the week he is in his lab figuring out how to make these boys' lives better. He is, I believe, the only DMD specialist who is a PhD as well as an MD.
Did I mention he is so nice. We had an appt. last spring which was very hard for me and he called me on the phone the next day to see how I was doing.
Anyway, I think if I got this email right after I had received JB's diagnosis I would have been a mess. I am still a mess most of the time. You are doing the best thing by reaching out to people who know this world. I still have a long way to go but if you want to talk to experts: Tracy Seckler from Charley's Fund, Cure Duchenne in CA (Her name is alluding me), Christine McSherry from the Jett Foundation. I also know a wonderful family in the North Shore of MA who I am sure would be happy to talk to you. Her son Jack is 5 and was diagnosed at 1.
Tonya, I too am somewhat new to the DMD world. I have been lucky enough to reach out to many educated members if this community. I honestly do not usually
say anything on PPMD community as it is not really my style if you will, but when I saw your poat I needed to respond.
Please go see Dr Tseng at MGH. I would be more than happy to talk with you at any time about our different experiences at MGH vs. Childrens and also give you more people to talk to.
My son JB is 2 and was diagnosed about a year ago. It has been so hard but honestly what I am thankful for this week is that Dr Tseng is here in Boston. (we are in norwood, ma)
my cell is 617 365 6060
I am driving to Buffalo so will be available most of the day.