Thought I would make a note.. we started the 300mg of Neurontin 3xday today... so far he has had two doses of it and his leg tone is fantastic. He was at school after doing an all day fundraiser for his chorus, The room is big with carpet and he dropped out of his wheel chair and decided to stretch. After a few tough pulls to get his legs up and stretched they just kept getting looser and easier to move. Then after about 20 minutes of stretching he flipped over and was crawling and was able to pull his legs forward in LONG strides it was so great to see.. before it was a struggle to pull a knee forward a few inches but he always did it.. but now that kid can cross a room fast on his knees. BUT we did learn NOT to do this in open toed antiembolism socks.. he got a tiny rug burn on his middle toe we will have to watch and baby till it heals. Live and Learn. skin is so fragile when your on blood thinners.
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Medications are working great
- By angelbrd67
- Posted June 27, 2009 at 7:09 pm · 10 replies
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- By Nina372
- Posted June 28, 2009 at 1:02 am
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HI angelbrd67,
Neurontin works wonders for me. I have been taking it for three years now.
As for the blood thinners I can't stand them myself, I used to have to take lovanox shots then moved to cumadin, now I am off them completely.
Hang in there :)
Nina
- By angelbrd67
- Posted June 28, 2009 at 8:41 am
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Matthew takes Lovanox too, we hate it, the brusing from time to time gets bad from the injections and he has so much more feeling it hurts more. They talked about cumadin, did you have any issues taking it? I worry about it as the clients I have had in the past their skin would break down so easy and they got horrible sores from rubbing or bumping into things. I guess his dose wouldn't be as high as theirs but wonder how others have reacted to it.
- By Learning1
- Posted June 28, 2009 at 5:17 pm
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One natural food alternative to the blood thinners, which apparently does the same job but without the side effects, is Nattokinase, an enzyme extract from Natto, a traditional Japannese soy food. There are a number of sites that talk about it, including:
http://www.angelfire.com/az/sthurston/Nattokinase.htm, http://altmedicine.about.com/od/nattokinase/p/nattokinase.htm, http://shop.mercola.com/Supplements-Cardio_Essentials__Nattokinase__NSK_SD- P304.aspx
It sounds like it is safe, provided the few cautions lised are obeserved, and the number of testimonies of its effectiveness is large. And there have been very few negative remarks about it. And it doesn't have most of the typical side effects of the normal drugs used as blood thinnners.
Like many natural products, there have not been a lot of studies run on it. It is not something that can be patented, and accordingly it is not something that the drug companies can make a lot of money on. One surgeon who commented on it in his blog thinks it is a waste of money since the claims of effectiveness doesn't fit with his understanding of how drugs work, and he feels that most of the effeciveness would be lost when it passes through the stomach, but there were a lot of posts after his comments by others, virtually all giving testimonies of being helped by it, even though it was something he couldn't explan. And one post mentioned that most of the companies actually sold it in a format that was coated and would only dissolve after it passed through the stomach, in the intestines where the PH is different.
So that may be a healthier alternative to the blood thinners. I suspect that, if you have a physician who is open to trying new things, and really wants to help, he can probably help you come up with an effective dosage and regime for using it.
- By angelbrd67
- Posted June 28, 2009 at 6:57 pm
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We can't take the risk of trying possibilities as my son has a small hole in between his heart chambers they accidentally found trying to figure out what caused his paralysis. They wanted to close this defect as there is a slight risk if a clot was to form it could pass between the chambers and end up causing a stroke. The surgery has been put off for now. Studies show that Lovanox is just as effective as closing the hole surgically so they want to let him get as much recovery as possible before we decide. Right now he doesn't want it. Reason being he would not be able to lift anything for 4 to 6 weeks. Well seeing that he has to lift himself for everything that would make him bedridden for many weeks and they don't feel at this time it would be good for him to lay around for that long nor does he. They told us that 1 out of 3 people have holes like his and some never even know it. It is so tiny that they almost missed it on his EEG.
Natural Products and their up's and down's
The few drug trials done on natural products have not shown consistent results to warrant further testing.
No one know's why it could be how it was harvested or stored ect..but for some it is a miracle cure and for others another let down. My mother had cancer that took her life in 1999. We did a lot of research on natural alternatives and came up with some great discoveries and some that just tasted like "YUCK"..
One major thing we learned is that an herb or vitamin you might think is helping you could very well be doing you much harm. These things are not regulated and can contain toxins that slowly or quickly harm you. Many don't mix with prescribed and over the counter medications and because they are not regulated many Dr's don't know how to safely mix them into a drug program for a patient. So with my mother we played the game of "Is it worth the risk"... She chose what she wanted to risk and what not to risk. At her onset they gave her 6 months with stage IV adenocarcinoma. She lived almost 5 years working her program but it came with some cost. Some of the stuff she chose to take made her pretty sick.
Thank You for the info it does warrent further looking into as it could be better than ruining the stomach lining with the one asprin a day.
- By Learning1
- Posted June 29, 2009 at 12:27 am
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Under the circumstances it makes a lot of sense staying with something that is known.
And as you mention, natural products also have their ups and downs. Any time you have an isolated item you take your chances with not maintaing optimum balance. And although there are a number of individual reports, you don't have in depth research (primarily because there is nobody to pay for the research). And the whole food sources that these come from, while being a pure balanced natural food, are sometimes like the original product here. The whole food source is natto, and while it is healthy, according to my sister who has been Japan for over a year now, it is a real "adquired" taste (it is one of the foods you would say "YUCK" to - to us it would seem like sort of a disgusting slime). It is not part of what we in North America would "appreciate".
There is only one nutritional product I've seen which has massive research behind it (i.e. 20,000 man years), and which is a totally balanced whole food product, yet gets remarkable results. That item is a custom grown, custom blended, bio-algae, which was developed in Russia, and even helped some of the Chernobyl survivors. The Russian scientist behind the complete project, who now lives in Montreal, calls it "awakening the genius within". If nutrition, or getting the brain or organs to operate properly could help improve health (like with MS, etc), it would clearly be an option worth trying, since it is not clearly not harmful, and apparently has helped a number of people. But most SCI situations have physical causes, rather than brain chemical or how the organs operate as contributing factors, so it isn't worth going into here.
- By angelbrd67
- Posted June 29, 2009 at 5:57 am
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LOL.... I lived in Yokosuka,Japan for 3 years... there is LOTS over there I would say is YUCK!!!
- By Learning1
- Posted June 30, 2009 at 2:58 am
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The bio-algae (the one nutritional product I'm sold on) is not that way (not one of those "Yuck" products) - but it is a Russian product, not a Japanese one. It sounds like your son's issues are not nutriotional ones, or brain or organ related, other than the need to avoid blood clots, and with your other expenses, that is not something worth considering at this time. If they discover that his problems are caused by a brain or organ related issue, it may be something to eventually look at, but now is not the time to add a different train of thought.
Some of the ideas on the LLLT discussion might be worth reading, to see another option available to help encourage further improvement, but for now it looks like things are moving in the right direction, and moving well.
- By angelbrd67
- Posted June 30, 2009 at 2:00 pm
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What is LLLT discussion? Little slow here..lol
- By Nina372
- Posted June 30, 2009 at 5:16 pm
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HI angelbrd67,
I liked taking the cumadin better then the lovanox because it comes in pill form. The only thing I would say watch out for if he wants to switch to cumadin to be careful and watch for breakdown of the skin and stay away from food with vitamin k in it, like salad and dark green veggies because vitamin k thickens the blood and if you eat to much it throws the med's off balance.
I think the cumadin worked just as good as the lovanox and it had less side effects.
Nina
- By Learning1
- Posted July 1, 2009 at 12:21 am
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It is another one of the discussions on the Inspire site (the same site that this discussion is posted on).
To find it, go to the top of the page and you'll find a box that says "Search Inspire". Type in "LLLT" then press the "Find It" button.
The discussion is actually called "LLLT(LOW LEVEL LASER THERAPY) FOR SPINAL CORD REGENERATION".
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