I am a mom to a wonderful little boy who was just diagnosed with DMD. I know of no one who has the condition or anyone who is dealing with this devistating disease. Please contact me and let me know how everyone deals with this and what step I should take next.
Name(s) of child(ren)/individual(s) with Duchenne:
Geez, that is terrible that Cade has the flu. Especially after spending time in line getting the shot Saturday. How is he doing? Guess he won't need to go back and get a second shot. Poor guy, I hope he gets better quickly.
Sorry, I forgot to say, that the GNC product is probably the same stuff, but less potency possibly, as Noni from TruNoni is one of only a few companies with pure Noni juice, most have water, juices, etc. mixed with the Noni to hide the taste, but I go for TruNoni, as it is 100% Noni. A store in Columbus, OHio, the Raisen Rack carries it and does have 100% Noni, it is cheaper than I pay, but when you get it from TruNoni, it is very, very fresh, sometimes from the current week. The make it as they ship it and have ran out in recent months because their sales have gone up a lot. Michelle
Yes, I have ordered from TruNoni.com for 1 year. I am going with the new product now, as it doesn't taste as bad (and well, Noni doesn't taste good). I don't know how Kelvin can take it as a child, but he does. He takes 1/2 once of the regular Noni, but I am switching him to 1 teaspoon of the new type, the Cryo, which is equal to 1 ounce of the regular Noni, and well, 1 teaspoon is much easier than 1 tablespoon (1/2 ounce). I don't give 1 ounce, right now as it would probably be hard to get him to take it. Kelvin weighs around 44 pounds or a bit more right now. One ounce may be too much, but I'll keep an eye on any bad changes. Also, I have some left of the regular Noni, so I will use all of it before starting the new Cryo kind, which I just ordered. If you need anything more, let me know. Let me know how your son does if he tries it. Michelle
thanks for your post. I mix the sugar free kool aid as normal and then just add the Juven to an 4 oz glass of sugar free kool aid. we mix it in either a sippy cup or water bottle so we can continue to shake every couple of sips. we then have him drink down a 4 oz glass of water. so far so good. good luck
Hi Amanda, I never thought I could talk about their diadnosis never mind the loss of one. Tyler was7-1/2and was doing great,started prednilsone?? for a year then deflazacortfor ~2-3yrs. He was gettinng his adnoids out due to a sleep study in Cincinatti that said he wasn'nt exhaling efficiently in his 'rem' sleep phase maybe due to enlarged adnoids /I think dmd boys lung/muscles are weaker(just my opinion).This was to avoid wearing the bipap machine at such an early age.We knew that dmd boys and there are acouple females w/symptoms (i know one )are to not be given certain types of anesthesia,Tyler wasnn't'Buttttt! they gave him one that was not forbidden to the knowledge of5 0% of anesthesiologist.The one he was given -we now know had a similar molecular structure-compound as one or some of the ones that are Absolutely Forbidden-hence it stopped his heart after the procedure.We,actually my wife Nicole did our homework w/regards to it and gave the anesth..... tons of documentation on the risks/etc. But....... this aneash...... ass**** apparenently thought he was a know it all ...anyway sorry for the rant but we want to let others know that it is not the documented standard of care in the medical world /books-schools as to which meds. can't be given to our boys My %'s are probably off but it should be that 100% of anesthesiologist know and are up to date on current pratices/ this should have had only happened if a boy/patient w/ a undiagnosed neuromuscular disorder.Our son Spencer now 7-1/2 himself has it and is doing great on deflazacort.You are in the Best place w/PPMD they are the greatest group out there and we've been to all of them.PAT FURLONG is the biggest Angel on our side w/wings borrowed from her two sons!I Its an unfortunate group to be included in but I will attest to the fact that I'm proud to be part of this extended family. ps we did ivf w/our 2-1/2 yr old Delaney she is great. Rich & co.
I had IVF done in Seattle, and it was completely expensive, especially since we had to do it twice. It was around 20K both times. My parents helped out - Aidan was their only grandchild, and his diagnosis broke their hearts as much as ours.
The process sucks - it's really difficult. But we have Graham now, so it's worth it.
Absolutely DO NOT listen to the percentage quotes - they have absolutely no way of predicting how many of your eggs are affected. It could only be 1 (your son), or it could be 90% of them. There is no way of predicting your level of risk until you do IVF.
It's so hard - I don't know what to tell you. If you would like to speak with me more about it, you can feel free to email me at firstname.lastname@example.org
I hope your appt. tomorrow goes well. I am working most of the day. I work in retail and Wed is a busy day this time of year. I am also not feeling well so getting together wouldn't work out. I am interested to hear what the doc has to say about the idebenone.
I found your page as I was going on in all this. I have two sons with DMD. Mathieu is 7 and still very active, and Malaky is 18 months old. I am also a carrier.
To say the least, we have had a pretty bad year.
Through all of it though, I still find myself pretty lucky to have two wonderful kids, a great husband, a great sister and really great friends. We are hopefull for a cure.
We have a bone density for Matt on Wed., and I am really looking forward to getting him on Deflazacourt. I am also looking at giving him energy supplements like CoQ10 and a good multivitamin with lots of Vit. D. I have herd some great things about great tea.
Anyway, I could go on, and on... I am glad you found this website and that we can be here for one another.
Take care, and God bless that beautigul family of yours!!!!