I am a busy mom who keeps on the move. As a family we love to go to Viking Football games, Iowa Cubs Baseball, St. Louis Cardinals, and Iowa Energy Basketball games. The kids love to spend time at the library, swimming pool, and messing around with their ponies. Nick's therapy pony is blind in one eye and LOVES to have Nick come and ride him. We give Tuffy as much therapy as he gives Nick! I work at Pella Corporation as a planning manager. I rely on my relationship with God to lead us all through this journey and have faith that a cure will be found soon.
About my family:
- My husband is Steve and my best friend for the past 18 years. Steve is an automation engineer at John Deere and loves fixing things. Steve spends his free time fishing or hunting for pheasant, deer, or turkey. Nick can't wait until he gets old enough to go with dad.
- Maggie is 14 years old and a freshman in high school. She enjoys playing volleyball, riding her horse Chip, swimming, watching movies, and hanging out with her friends.
- Nick is 10 years old and in the fifth grade. He is very imaginative. Nick is much like his dad where he loves to create things. He enjoys riding his theraputic pony Tuffy. He loves ESPN in fact he has a future career as a sports announcer. He loves watching anything sports and shooting hoops in the driveway. In January 2010 Nick had the wonderful experience through the Make A Wish Foundation to meet Brett Favre, hang out with the Vikings at practice and then attend the Viking/Giants game. It was AMAZING! Nick had such a blast!
Name(s) of child(ren)/individual(s) with Duchenne:
The co-q is not in the Juven. It is a separate liquid supplement. The cryo-noni, fish oil, and Protandim were not recommended by her, but she's not against them. All were supplements I heard about from other parents and decided to give it a try. None create any noticeable benefit, but since they are all something that really work more at a cellular level, it's not something we'll see until long term. Sam's D3 dosage is so high because his D levels are always on the low side and he's also been treated for osteoporosis. We've gotten his bone density back up in an acceptable range through a year of Fosamax. He's now on a break from that, and we're hoping he's maintained for the last 6 months. We have our next DEXA and appt with Dr. Wong next week.
I'd love to share our experience with various supplements. Sam started deflazacort in Sept 2005. After about 3 months we started him on co-enzyme Q10 and L-Arginine. Our co-Q10 is the liquid form from Epic 4 Health. This is the brand recommended to us by Dr. Wong. The first L-Arginine we used was from Twin Labs and was recommended to us by Kirana Rao, who was a previous nutritionist that worked with Dr. Wong. It was discontinued, so after discussing it with Dr. Wong, we decided to give Juven a try. Sam's previous L-Arginine dosage was 3000mg/day, broken up into a morning and afternoon dose (1500 each). With Juven, we've been giving him 1/2 packet per day, again breaking up into two doses. This gives him 3500mg of l-arginine per day. Sam is also on Protandim, vit D3, Cryo-Noni juice, and Barlean's Kids DHA fish oil. In a conversation I had a while back with Dr. Wong, she told me that they were seeing good things with l-arginine in conjunction with steroids, but that there were no formal studies at the time, just anecdotal evidence. I don't think we'll ever really know if all the supplements or even just one of them has made the difference with Sam, but I'm not ready to start pulling them to find out. Sam has a deletion of exon 50. For all we know there could be something else going on with him to be keeping him so active and mobile. He does have days where he tires out, but they seem to be fewer now than in the past.
Hi Veronica - The Viking organization is amazing! Brett was somewhat pleasantly surprised when Nick was asking him questions about his pets and what he likes to do with his kids for fun. I imagine Brett gets all sorts of football related questions from kids, but not Nick. He wanted to know what kind of dog he had. By the way, the dog in all his wrangler commercials is his female chocolate lab named Sam. Nick thought that was cool. Also, he likes to play Wii with his kids when they let him have a turn :). Before Brett would leave he wanted to make sure ALL the questions were answered. He was so amazing. Nick had some time with Brad Childress as well. Nick told Brad Childress that he cries when the Vikings lose. Brad told Nick, "Don't worry son, I cry to, the only difference is I cry in my beer". Yes, tears were shed on Sunday. We are hoping for another year, but Nick told a news reporter in Iowa that ran his story that he thought Brett was old when compared to the other players. After the beating he took the other night, I am sure he is feeling old. Just wish people would stop saying he lost that game. It takes a team to win and a team to lose any game. Take care.
I just came across your page. Seems like you have a very neat family and a wonderful outlook. I love Bret Favre, by the way, and was so disappointed about the Vikings' loss. :( How neat that your family got to meet him and the rest of the team!!
I go through Masters UK in London. Their # is 1-800-696-1152. You have to call before 11:30 am. I order 50, 30 mg tablets. They charge $110. This is with shipping. I am not sure if that is a good price or not?? I have to pay the $15 for shipping. It is usually here in 7-10 days.
I had my Dr write a letter to the board of trustees to pleed Alec's case to the insurance company and have them review it in their monthly meeting. Then they came back saying I had to write them a letter also and then they would review it at their next monthly meeting. So it took a while but in the end they did agree to it. They had a lawyer review the case also. I think in the end they discovered that they would be paying out more in med bills if Alec were to go on the Prednizone because of it's side effects. I was totally shocked when I recieved the letter of approval in the mail!!!
I am not sure how all of the insurance stuff is going to work out. The person who owns the place is actually a therapist and I think her daughter has CP. Maybe she will have some pointers for me. Our health insurance providers are so fair. I actually got them to pay for his deflazacort, which I thought would never go through because it is not FDA approved. Maybe I will get lucky with the hipo therapy also.
I just came across your site and noticed your son rides horses. I am planning on getting Alec who just turned 4, into hipo therapy this spring/summer. I found a place where he and his brother Joe (who does not have dmd), will be able to join the club together. I am wondering how it has helped your son. We have such a hectic schedule, but I am hoping it will be a great experience for both boys, and be worth going out of town for once a week.
No, we have no Iowa roots, but the family we visited in Oskaloosa has a senior at Iowa State. She works for the Athletic Director and the sweetie got us tickets for a special Cyclone game. Do you go to Iowa City, Dr. Mathews? We've been going for 12 years. If the Hawkeyes would ever treat us as special at one of their games, we might have to switch to black and gold! Enjoy the fall weekend-we're off to get pumpkins tomorrow at the pumpkin patch!!!