Amanda Rudd's Comments

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At 8:41am on November 5, 2009, Janine said…
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.

Janine
At 7:34pm on April 1, 2009, Janine said…
Just wondered if you were making any headway with SSI or Medicaid?

Janine
At 6:54pm on March 11, 2009, Kelvinsmom - Michelle said…
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
At 6:50pm on March 11, 2009, Kelvinsmom - Michelle said…
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
At 7:22pm on January 13, 2009, Jenny Garofalo said…
Hi Amanda,
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
At 11:16am on January 11, 2009, Richard Kelly Poole said…
go see dr Wong at Cincy childrens /they are the best
At 11:13am on January 11, 2009, Richard Kelly Poole said…
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.
At 10:46pm on January 8, 2009, Mindy said…
Hi Amanda,
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 mindy_lef@hotmail.com

Mindy
At 5:15pm on November 18, 2008, Janine said…
Amanda,

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.

Janine
At 9:48pm on November 17, 2008, Marian Lamberson said…
Hi There,
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!!!!
At 6:53pm on November 17, 2008, Amanda Trosper said…
I just found out about the Osteoporosis today. My other son is very active can run can count to 10 and everything and he will be 3 next month So it's just my one son and the MDA is not worried about him at all. Just Damien who is 6 who will be 7 next month. I think his deletion 58 I think I'm really not sure at all though so that's just a guess.
At 3:34pm on November 17, 2008, Amanda Trosper said…
Hi my name is Amanda and I have a son with DMD we found out in June of 2008 when did you find out about your son. Everyone deals with this in there own way I guess. You have the grieving process and I'm still at that point I hope they find a cure soon. I pray everyday that they find a cure. He also has Osteoporosis I just wish it would just go away. I hope your family is there to support you because that's the only way you can cope with this and God that's what I've found that helps me out.
At 6:45pm on October 19, 2008, Janine said…
What time is your appt in Nov? Are you going to be staying over night or come down just the day of the appt? I am usually off on Tues. I thought maybe I can change my day off that week to Wed. so we can meet. Let me know.

Janine
At 10:06pm on October 16, 2008, Char Burke said…
Hi Amanda - I have picked this up from a variety of sources.....
1 - Baylor Uni. genetic counselor said that Will should have a muscle biopsy b/c he was "in the region of BMD." I called the hospital but he would not talk directly to me. Will's duplication is 54-57.
2 - I know of another boy who is 22 or so and he is doing very well and his is a deletion 43.
3 - That area of gene - in the 40's is not near the beginning or end so there is less areas that are critical....
4 - another mom on this site has a son who MDA said duplications are less severe....Her name is Julie Garcia in CA. Email her.
So, I hope that fulls you up with hope and faith which we all need sometimes...
To your boy - that he may live long and well....
Char Burke - mom of Will age 6
At 7:37pm on October 16, 2008, Janine said…
Derek is at the clinic two weeks later. He will see the cardio doc as well. He has to have a re-check. He went last week and his heart rate was slightly elevated so he wore a holter monitor for 24 hours. If his average heart rate if over 100 he wants to add a beta blocker.

Where did you get the idebenone that you ordered? Did you figure out the dosage?

Janine
At 3:43pm on October 6, 2008, Janine said…
Amanda,

Have you ordered the Idebenone yet? I have been considering that as well. Do you already have your appt. in Nov? Let me know and we'll try to get together.

Janine
At 9:17pm on September 1, 2008, Brian Wolf said…
Hi Amanda! We just got home from telethon - it's along exhausting day! It's interesting - I met another family today that just recently found out they have a duplication as well - I'm not sure, I know PTC 124 is for a premature stop codon, it might be exons skipping you're looking for (not for sure though) I'd look if there was a PPMD dupliation discussion group to ask or ask your nuerologist.

Telethon is a blast, I'mvery excited that Cleveland FD was over 100,000 this year, last year they were around 72,000 - we visited almost all the stations this year and talked to them.

It's not all hard work if you have faith that you are eventually helping your kid and others like him to not have to know those letters "MD".....

See ya!!
Brian
At 5:47pm on August 31, 2008, Brian Wolf said…
I posted Jack's MDA movie from last year - it came out pretty good! Jack's going to be in the MDA Camp video for the local telethon, do you get channel 55? I'll be there all day helping out.
See ya!
Brian
At 10:49pm on August 24, 2008, Brian Wolf said…
hi Amanda- we live up closer to Cleveland, we are active with the MDA up here. We have a support group at Metro hospital the last Thursday of every month through MDA if you are interested. Call 440 816 0916 and ask for Jackie Becker.

Brian
At 12:46am on August 4, 2008, Janine said…
Amanda,

Just hit reply on the last e-mail I sent you. I want to see if I get it.

Thanks

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