"does anyone have feedback on Neurogen ?
"
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Bains's Discussions
Help!...School is making up rules?
Started this discussion. Last reply by Kristin Linke Feb 22. 5 Replies 0 Favorites
Using gait belt
Started this discussion. Last reply by Bains Feb 10. 2 Replies 0 Favorites
Losartin Dosage
Started this discussion. Last reply by Bains Sep 5, 2011. 2 Replies 0 Favorites
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StaffSharon Hesterlee commented on Bains's group India
"Raktim: I think this is a great idea! I get so many emails from India about the best local resources and local research. I know some of the investigators in India, but it would be great if I could direct people here to…"
Bains replied to MarcosDad's discussion Used McLaren Masters Special Needs Stroller"Hi,
We have the same stroller and my son does not fit in that any longer. It is used, but in usable condition. If you are still interested, please email me your address and I will ship it to you. You do not need to pay for it as I was going to give…"
"I have my son on an amino complex type regimen. it has arginine in it. I will ask my doctor about this. What he might say is that it is beneficial on short term use and suggest taking it for one year and then go off for a period of…"
Chad Campbell replied to Bains's discussion L-Arginine"Not a doctor, but since our son's diagnosis I've spent a great deal of time poring over clinical evaluations of dietary supplements. L-arginine looked very promising, I read about the increase of utrophin and nnos and was cautiously…"
Debbie Schneider replied to Bains's discussion L-Arginine"We use l-carnitine not l-arginine so I need to check that one out. I am sort of answering your question, but not as use other things to help preventr muscle pain, and so far so good as he used to complain a lot, but doesnt any more. We give…"
Profile Information
- Age(s) of child(ren)/individual(s) with Duchenne:
- 7-12
- City and State:
- VA
Bains's Blog
Caught of guard - Questions by Strangers
Posted on December 5, 2008 at 10:11pm 6 Comments 0 Favorites
I guess I was not really ready for this. Today I had a stranger approach me and question why I parked in between 2 handicapped parking spaces during school dismissal. I told her that I can do it. (I am thankful to the school for their understanding and offering me that space to be used.) She did not stop there, she explained to me who can use those spaces and that I should not be using. I told her that I have permission from the school to use that space. That did not satisfy her; she continued… Continue
Comment Wall (5 comments)
- At 9:08pm on October 19, 2008, Bains said…
- They did not respond to my question on when they are goign to begin clinical trials. I hope they would do clinical trails with dr wong as well. A great team there!!!
Ms. Bain
- At 4:14pm on October 19, 2008,
Julie Garcia said… - At the PPMD conference in July Santhera was talking about a double blind study and trying to decided with or without steriods.
- At 4:13pm on October 19, 2008, Julie Garcia said…
- Thanks so much. I will let you know if I find out any more on this with Catena...I wish they would do a clinical trial with Brenda Wong that is controlled to use the information and work with her...that is my thought....
- At 11:31am on October 19, 2008, Julie Garcia said…
- Hello,
Sorry your positng about CATENA(Idebenone). What is the website for the one Santhera sells?
I appreciate your information. I actually shared a cab ride with Thomas Meier after he presented at the PPMD conference about 6 years ago and this is one that I have been following. Santhera was at this last conference but did not present. They met privately with a group to gather information to help them determine the best way to do their clinical trial.
Take care,
Julie
- At 3:53pm on August 13, 2008,
Jessica said… - Hi,
You said your son has a deletion of exon 12? How is he doing today? My son is 18months and has an inframe deletion of exon 13. Is your sons' in frame or out.
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