Marissa Penrod
  • Female
  • United States
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  • Steve Dreher
  • alexandra grau quinteros
  • Tonya
  • Kelvinsmom - Michelle
  • Keith Van Houten
  • Jenny Garofalo

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Age(s) of child(ren)/individual(s) with Duchenne:
commerce twp, mi

Comment Wall (6 comments)

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At 10:51pm on December 7, 2009, Tonya said…
Hi Marissa,

Sorry, I got your friend request and noticed right before I accepted you had sent a comment. I only saw a few words I think about supplements, I'm happy to tell you our regimen. Let me know if this is what you were asking. What are you doing?

Morning: 15 ml's of Haelan 951 mixed with 2 or 3 drops of stevia, this he gets before he eats anything. Then after he eats his breakfast we give him 6mg of Deflazacort mixed with 1 teaspoon of "Miracle Fruits of the World" drink, we get this at Costco. Then he gets 1 packet of Juven, which we mix with 24 ounces of water. We really water it down for him and to also make sure he is drinking enough fluids. He has learned to drink tons of fluids.

Night: He gets a bath and we do all of his stretches and he has worn his night splints since he was 2, now he is 3.5.
He gets another 15ml's of Haelan 951
Takes a half of a protandim
1000mg of Vitamin D3
50mg of CoQ10
10ml's of Miracle Fruits of the World juice
Half of a chewable complete Flinstone vitamin
1/2 teaspoon of Creatine
2 Lil Critters Calcium and vitD gummy bears
At 6:13am on December 7, 2009, Steve Dreher said…
Hi Marissa -

We're in Southern NH - grew up and still have roots in Northern VT, though, a mile or so from the border. We have our first Dr.'s appt. in a couple of weeks...

Thanks for friending me!
At 9:03pm on June 4, 2008, Jenny Garofalo said…
Is he on any meds yet? if not then you want to start one new thing at a time. usually with 2 weeks in between (4 if you can stand to wait that long). this way you can see how he and his body react to each new addition.
At 9:01pm on June 4, 2008, Jenny Garofalo said…
Danny wears Dafo braces at night time. he really does not give us much grief outting them on. We stretch in am and after school and at bedtime or after he falls asleep. Dr Wong says for most boys 1-2 times a day of good stretching is sufficient but Danny also has CP so he also gets stretched a 4th time at school. it helps keep him loose and we know right away how tight he gets if we miss. He has private pt 2 times a week and pool pt 2 times a week. swimming in a heated pool is the best thing for them, for their muscles and lungs. Dr Wong is our life saver, I trust Danny's care to her completley and know she is only an email away.
At 8:56pm on June 4, 2008, Jenny Garofalo said…
Marissa, you are in the right spot. everyone is so helpful and willing to share. take the advice you need and do the best for your son, that is all any of us can do. the blue juice is called Naturally Co Q Blue, it is CO Q 10. some costco stores carry it but not in our state, so we order it from allegro meds on line ( will get you the link)
At 8:27pm on June 4, 2008, Jenny Garofalo said…
Hi Marissa,
how old is your son? Danny is going to be 6 next week. He takes deflasacort 15mg; vit d; co Q blue juice; calcium; protandium and juven( which has glutamanine and l arginine)
the MRI study is out of Gainsville Florida. they are studying images of the muscles to prove that once clinical trials start then MRI can be used as a measurable method of seeing how the drug is working, as opposed to muscle biopsies.

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