MOVEMENT

I havn't posted to many updates lately as things here have gone from bad to nightmare. We went to the Shrinner's hospital in Philidelphia. My son was making great strides forward. But with in a few week's things got much worse. Let me start from the beginning.

At Shrinners they did a full work up on my son and went over the medications that my son was put on and made adustments. The Dr there told me that we should go ahead and remove one of the drugs called Neurontin. She said the dose was minimal and didn't think it was doing much. This is a drug you have to ween off of so we started the process and over a few week's totally removed the drug.

During the time we were weaning him off the drug we noticed his tone getting worse. They explained it away as spinal shock wearing off. So we just increased his baclofen up and up until he was maxed out and they started talking baclofen pump and gave him Zaniflex.. nothing worked

For the past two week's we have had trouble with Matt getting sick at Therapy in Orlando bouts of disreflexia that we couldn't figure out why.,
Matt was going down hill fast and no one had the answer's we needed. On Monday afternoon I was asking the Dr's to put Matt back in the hospital I was worried about him. His leg's were stiff you couldn't straighten them or bend them and he just wasn't Matt. His eye's looked gone and his attitude was horrible.. He started to lash out at me out of fear.. not knowing what was going on with his body. After breaking down in the Dr's office exhausted trying to care for him they did blood work and still left us with out answer's. So I sat down and went over his paperwork and medications and thought Lord why now...what are we missing what is different he was getting so much better then he crashed. Well it dawned on me the only thing different we have done (at the Shrinner's Dr's request) is took him off Neurontin.. it is used for Neuropathic pain. I gave him one right away..There was suttle change with in an hour... the next day we went to the Neurologist and told him and he looked over Matt and said yes this is what was crippling him more. His body has pain from his accident that he can't feel like we do but his body can feel it. Nerve compression from the swelling in his spine. In 24 hours Matt has made a drastic change and today when we went to his Physiatrist he grabbed Matt behind the knee and lifted his leg up and said Matt kick out. Matt could do it.. HE IS GETTING Movement from the knee down!!!!! Matt lit up and started to grin from ear to ear and kept trying it himself to believe it was really him doing it. So I think we are back on the right track they are increasing his dose of the Neurontin over a three week period to get it to where it need's to be. Today has been such a relief I can't tell you how scared I have been.

By Echairsitter
Posted June 18, 2009 at 4:51 am
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Very interesting, saw on the web that it does wonder for the mood also. Thank you for your post. I need to talk to my doctor about this.

By hatixhe
Posted June 19, 2009 at 8:20 am
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I am glad to see that he making some progress and that you really did save your own son! Since spasticity will be an issue always, you may want to think about a Baclofen Pump. It works wonders with the spasms, and does help to return some quality of life to some extent. Since he will be rehab long term, it will help him keep a balance and allow him to be able to have a return of tone, which will in return assist with the rehab process and healing. You really should look in to the possibilities of this pump. If you need any info, please let me know. I will be more then happy to do so. Gook luck and hang in there.

Hatixhe

By DianaJ
Posted June 20, 2009 at 5:12 am
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Angelbrd,

You are AMAZING!!! Your son is so very fortunate to have you on his side! I, too, take Neurontin, for pain I can definitely feel, but to know Matt's body responds to pain he doesn't recognize is a huge step in helping him. He would definitely be more spastic with pain, as with infection or other stimuli he cannot feel. Our bodies are amazing in so many ways and equally so when injured. Keep learning as you go and please continue to share along your journey--- you and Matt may just have saved another from the same fate! I sincerely hope you have shared Matt's story with the doctor who took him off his "incidental and not helpful" dose of Neurontin!
Once again, you and Matt are lucky to have each other on this journey--- so different than each of you had planned, but you make the best of each hurdle and together, you succeed!

(((Hugs))) Diana

By angelbrd67
Posted June 20, 2009 at 9:20 am
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Thank You~

I have been taking care of people for many year's .. but let me tell you when it's your own child it is a whole different ball game. There is no time clock or day off .. and when Dr's don't have the answers your child trusts you have them all .. after all "Your Mom"..lol To be in a situation like this and feel so helpless is the most frightning feeling in the world.

I definately will be talking with the Dr from Shriners they need to know about the change and maybe this will help them with others they are working with. Some people don't respond to low doses of medications where others hyper respond to the smallest of doses.

I just went in to check on him... he is stretching and when he sleeps he taps his feet and wiggles his toes and it's like there is no injury there at all. So peaceful and carefree. If only he could channel this movement to work while he was awake.. there has gotta be a way!

(((hugs)))

By Learning1
Posted June 22, 2009 at 12:43 am
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It is amazing what one little thing, like the small quanties of the drug here, could do.

I ran across something recently that I'm amazed that there has not been any research into yet. I suspect that a lot has to do with how much the technology could do to reduce or elminate use of many of the drugs out there. And needed funding for research (required before doctors or other health professionals can use the technology even experimentally) just isn't there, because if it works like it seems to, it would reduce drug company profits.

The article deals with how fibroblast cells (scar tissue - what appears to be one of the key factors behind restricted SCI recovery) has been turned into embryonic type cells simply by using magnetic pulse therapy. The article giving some brief background, and proposing SCI research, is at: http://www.rifeenergymedicine.com/spinalrepair.html

The article is written by a physicist, Gary Wade. He suggets a proposal for future research is based on some initial research by Dr. Robert O. Becker, the physical structures of ion gates or ion channels on the human cell types, plus his own work converting fibroblast cells in scar tissue into the normal cells that they should be.

Wade says "In experiments carried out at the Center for Complex Infectious Diseases (CCID) in Rosemead, CA, I was able to get fibroblast cells and kidney epithelial cells to go embryonic-like or looking using a type of pulsed magnetic field configuration. Apparently the type of pulsed magnetic field configuration used has the ability to open various cell membrane ion gates and then force feed them with their own ion type."

He goes on to say " In field trials carried out with the same type of magnetic pulse equipment used at CCID, we have been able to repair all manor and kind of fibroblast cell based scar tissue and would be scar tissue damage in horses and humans. However, we have been unsuccessful with this equipment use on spinal cord scar tissue, which is not fibroblast cell based. This does not mean that there might not be some other pulsed magnetic field approach that would work to convert spinal cord scar tissue to the needed normal spinal cord tissue structure."

Basically what Wade seems to think is that if the right conditions can be identified, the scar tissue should be able to be made embryonic-like, without the death of the cell or cell damage.

Part of what makes Wade's comments and thoughts of interest is how he stumbled across the idea. That part of the story is set out at: http://www.horsemagneticpulser.com/HMPstory.pdf, and there is a video where he discusses the background behind his original study at: http://www.horsemagneticpulser.com/HMPvideointerview.html.

Another interesting thing from this material is that the initial shoulder recovery / healing which triggered the thought, and the research conducted with the fibroblast cells, was done with a very small, very simple, inexpensive magnetic pulser (about $300) put out by Sota Instruments. So the challenges with getting spinal cord fibroblast cells to change might be due to frequencies needed, or might simply be a time factor, since spinal cord cells seem very slow to change, to be replaced by the body, etc. and it appears the test time was around 20 minutes for results with other cells (around the edges).

By angelbrd67
Posted June 22, 2009 at 12:14 pm
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Very interesting reading,... I had a special friend who was a chemist who owned his own company in Canada and then sold out to Johnson and Johnson when they brought Tylenol into the US... He use to tell me stories about his drug trials in Canada and how they would smuggle sample drugs into the US for testing to avoid all the red tape that keeps many very promising drugs off the market.

It is sad to think about all that is out there and the red tape keeps it from us.

Welcome to Inspire!

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