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Lori Sames's Page
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- About Me
- Parent of GAN Child
- About Me:
- 39 Years young, mother of 3 beautiful daughters, happily married. Love spending time with my family and vacationing with them. Fully dedicated, with every fiber of my being, to find a treatment and cure for GAN!
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I'll talk to my sister- and brother-in-law and ask them if they can get in touch with you directly. I only know the most basic details of Rosie's medical history, but they will be able to give you much more in-depth information. I'll try to speak to them as soon as I can.
This is Azwhayn's dad here.
Az has asked me to write to you with regard to your last "Comment". I don't tend to write too much any more on the topic of Azzie due to the years of battling the establishment. It took us 7 years before we had GAN as a diagnosis (Az age about 11). Lots of other square pegs in round holes with assurances that we were paranoid that they had the wrong diagnosis...until one day they got it right. Sadly. However, we have been refused a sequencing, so the battle continues. Sorry if I sound a little jaded, I am. That's why I don't talk much about it any more.
As you will know by now GAN has many different looks. I can give you advice for Az, I hope it will be of use to you. I know all too well the pain you are going through.
It sounds as if Hannah is having similar toe curling, at a similar age to Az. We found that it was too hard to expect Az to do his own exercises/stretches so it was down to us, and the myriad of practitioners we took Azzie to each week. Feldenkrais seemed to help his ability to localise his joints and to keep on being able to move them. Also lots and lots (daily) of gentle but deep and complete (the full muscle) massage (via osteopathy, massage therapist and parent inflicted.
This along with various AFO's splints...etc. helped the muscles to remain under his control as long as possible.
What we found out later on , something that would have helped earlier (I hope it helps you) was that his muscle strength and usage was very dependent on three things: 1) The food he ate was a huge influence on him. (Huge to him meant the difference between walking and staggering/falling). 2) The exercises/hydrotherapy he did on a daily basis (up to 1 1/2 hrs a day of specific exercises [I am an Osteopath so designed them for his weaknesses]) kept the muscle groups balanced, otherwise a spacticity fight occurs in the various muscle groups. 3) A solid, daily, nutritional supplement to augment the nutrition program.
I will expand a little on this last point.
I can direct you to a great dvd to watch "Food Matters". Go to www.foodmatters.tv It will give you an insight. I caution you not to look at it and thinking it is good (if that is what you think) go at it by yourself. Contact me again if you want more advice/information on this.
As for a supplement we have Azzie on USANA vitamins, minerals, fish oils and anti-inflammatories.
I researched A LOT, months in all, into all the various ones on the market and found these to be quite simply the best. A useful book called "The comparative guide to nutritional supplements" by Lyle MacWilliam looks at all those supplements in North America/Canada. To make it brief he scores them out of 100 (for a variety of factors). Most, if not all, of the ones you buy in shops score below 20/100 (useless in my book). Only 5 companies attain a gold medal standard, the highest and cheapest of them being USANA "Essentials" scoring 98/100 (here in NZ). These would not be the ones for Hannah at her age she would take the ones for younger people, but this may be altered due to her condition. What I also found, and this may be of no interest to you, was that they sold them via direct sales, multi level marketing. When I looked into it it was a great way for Az to be able to earn money as an income or to fund research. As it involved only talking, and could be done from the comfort of his home on the phone if necessary, it also meant that should his condition deteriorate he will still have a continued income independent of us.
I can give you more information on this should you wish to look into it.
The vitamins have made a change in two main areas: 1) his recovery after exercise is much faster. 2) He was able to hand cycle 30kms in 2 hours without any training or major after affects (he did ache a little in his arms). If you knew Az this was a big thing to achieve.
Well I think that is most of the big things that I wish I had known earlier. As I remember more I can let you know.
Should you wish to try the vitamins let me know and I will tell you how to get them over the internet.
If you want to contact me for more information about anything my email is the best way. osteo@xtra.co.nz
I wish you all the very best and send much love to Hannah. I will keep her in my prayers.
Kind regards,
Vaughan
Please call me.... We need your help with this mission. I can bring you up to date on where we stand saving our children's lives.
home: 518-383-9053
cell: 518-275-5359 thank you, Lori Sames (Hannah's Mom)
When my son and I looked at your lovely pictures, he said : "hey mom, it's just me !".
My son is 7 and recently diagnosted with GAN.