¤ i need everyone's help please ¤

[melliska]

hi everybody, the reason for my post is to ask all of you for some help and advice.

last night a 16 year old buy from my small town in iowa was in a car accident and broke his neck. it was a pretty bad accident and one of the other 16 year old guys in the car died.

the first boy broke his neck at c5 and can't feel anything from the chest down and can only shrug his shoulders so far. he was taken to another small-ish town around here because of the accident's location and i'm not sure if he received methylprednisolone. (ever since my accident it is standard to give sci's methylprednisolone here, but i'm not sure how many injuries the other town has seen)

now he's in mason city in critical care (i was transferred there too) and is hopefully being taken care of by my awesome neurosurgeon. i called to speak with his family, but he's not in a regular room yet and i couldn't reach his family because they haven't been in the waiting room when i've called.

my question to all of you is...what in regards to treatment, rehab, clinical trials, etc. should i pass on to his family? my family was pretty lost when i got hurt so i'd like to help his family out if i can. since my injury i've tried to get in touch with everyone else around here that has been hurt, but i haven't been able to talk to anyone's family this soon after injury so i'd like to have all the information i can for them.

thanks everybody, melissa

Life is a lesson you learn when you're through.

[Wise Young]

Melliska,

• Early care. I am pretty sure that he would have received methylprednisolone. The key thing in the beginning is to make sure that he has been stabilized and all his medical problems are being taken care of.

• Experimental therapies. While there are a number of experimental therapies that are being offered during the first two weeks after injury, it is important to remember that none of the treatments have proven efficacy and the family must balance the risk and benefits of moving him to another hospital.

• He needs a good orthopedic and neurosurgeon. I know that Mason City has a lot of top-ranked emergency and surgical facilities and apparently has the second largest number of surgeons after Iowa City in the state of Iowa. Mercy Medical Center, for example, has a neurosurgery group.

• There is plenty of time to choose a good rehabilitation center. There are two superb places that are within driving distance of Mason City. These of course include Iowa City, the University of Washington at St. Louis and St. Louis University. There is also Chicago Rehabilitation Center and Rush Prebyterian.

Wise.

Wise Young PhD MD, Professor II & Director
W M Keck Center for Collaborative Neuroscience
Rutgers, State University of New Jersey
604 Allison Rd, Piscataway, NJ 08854-8082
tel: 732/445-2061, fax: 732/445-2063
email: wisey@pipeline.com, young@biology.rutgers.edu
web: http://carecure.rutgers.edu, http://sciwire.com

[Chris Chappell]

Sorry to hear this news. I hate admitting new members to this club.

Not knowing enough detail about the family I'm going to guess that you're looking to provide them with information relating to what they can do as far as cure / rehab?

1. Regardless of the hospital that they are currently in I would recommend that they talk to a reputable, national center of excellence. Not knowing what's available in Iowa I think they should call Craig hospital in Colorado. #303-789-8000. Ask for the medical director Dr. Daniel Lammertse. (If he's not there ask for someone in his office to help).

2. If they are interested in the most current acute related "cure" therapies I would explore the Proneuron (macrophage clinical trials) being offered in Tel Aviv, which is covered cost-wise by Proneuron. Have them check the website at www.proneuron.com They could also check out the Purdue University study, The Neotherapeutics trial, Russia, Taiwan, Ecuador etc. Have them check the trials forum of this site so that they can judge for themselves what may be applicable.

Given his level of injury, getting him into a hospital / facility that specializes in SCI can't be emphasized enough.

Good luck,

Chris

[glomae]

please go to the proneron site thats mentioned in the other reply, the last i yet they were recuriting patients one of the criterias is the injury has to have happened within 14days. GOD bless the family and i hope you can be of assistanace to them

[Jeff]

is selecting acute injury patients for their Neotrofin Phase II trial, I believe. It's closer to home than Israel and holds just as much promise, IMO. Either way, an experimental therapy is what I'd want someone to do for me.

[kngtreeman]

this is just on example of the tecknowledgy we have.with all the available treatment out their this poor kid is ganna be a member of this club.we still dont have anything to choos from.no matter what his and his families choise is, its a huge gamble.their was a girl in my town not so long ago that was inured in a car wreck.i did the same thing and Asked spinewire what she should do.a 22 year old mother of 2.in the end she was treated exactly as i was and now is exactly AS I AM.IT WOULD BE ONE THING IF WE HAD LIVED OUR LIVES AND THIS HAPPENED.BUT ITS A AWFUL SHAME TO HAVE IT HAPPEN SO YOUNG.

scott r

[pecla]

This was the latest press release from NeoTherapeutics about their Neotrofin trial and it mentions the 4 hospitals involved.

NeoTherapeutics Expands Neotrofin(TM) Trials in Spinal Cord Injury -- Two "Centers of Excellence" in the treatment of spinal cord injury added

IRVINE, Calif., Aug 22, 2001 /PRNewswire via COMTEX/ -- NeoTherapeutics, Inc. (Nasdaq: NEOT; NEOTW) announced today that it has expanded its Neotrofin(TM) spinal cord injury trial to include Thomas Jefferson University Hospital (Pennsylvania) and Craig Rehabilitation Center (Denver). Seven patients are currently receiving Neotrofin: five at Rancho Los Amigos Hospital in Los Angeles and one each at Craig Rehabilitation Hospital and Thomas Jefferson University Hospital. The four currently active centers are expected to enroll a total of 30 to 40 patients for 12 weeks of dosing.

Craig Hospital in Denver has long been recognized as a premier national 'Center of Excellence' in the specialty of rehabilitation and research for patients with spinal cord injury and acquired brain injury. Craig Hospital has treated more than 23,000 patients since 1956 -- more than any other single facility in the world. The principal investigator at this site is Daniel Lammertse, M.D.

Thomas Jefferson University Hospital, in affiliation with the Magee Rehabilitation Hospital, is designated as one of the nation's 18 regional Research Spinal Cord Injury Centers and a Center of Excellence in the treatment of spinal cord injury. Located just outside Philadelphia, the center has treated more than 2,500 patients. The principal investigator at this site is Anthony Burns, M.D.

"We are pleased to have four of the leading centers for spinal cord injury participating in this clinical study," said F. Jacob Huff, M.D., Vice President, Medical Affairs at NeoTherapeutics. "Craig Rehabilitation Hospital, Rancho Los Amigos and Thomas Jefferson University are three of the eighteen regional Centers of Excellence for treatment of spinal cord injury in the United States, and Gaylord Hospital in Wallingford, Connecticut, has a long tradition of providing high quality patient rehabilitation."

"The expansion of our Neotrofin clinical trials into spinal cord injury and Parkinson's disease reflects the broad range of activity the drug has demonstrated in pre-clinical neuro-degenerative models," stated Rajesh C. Shrotriya, M.D., President and Chief Operating Officer of NeoTherapeutics. "We have compelling pre-clinical data showing neuro-protection and nerve regeneration potential in the brain, the spine and the peripheral nervous system. Our clinical trial program for Neotrofin continues to expand to reflect the growing number of potential applications for our lead drug."

In this 12-week open-label study, patients with sub-acute, complete spinal cord injury will receive Neotrofin for 12 weeks, and will be evaluated at regular intervals. In addition to extensive assessments for tolerance and safety, the Standard Neurological Classification of Spinal Cord Injury (SNCSCI) - manual motor exam score will be used as the primary evidence of preliminary efficacy. Secondary efficacy measures include the American Spinal Injury Association (ASIA) impairment scale (ASIA-IS), Functional Independence Measure (FIM) and SNCSCI-sensory exam.

[BirdeR]

"Experimental therapies. While there are a number of experimental therapies that are being offered during the first two weeks after injury, it is important to remember that none of the treatments have proven efficacy and the family must balance the risk and benefits of moving him to another hospital." POSTED BY WISE YOUNG. While I totaly agree with Dr. Young and his advice on the risks VS. benefits of experimental therapies and moving a newly injured SCI patient, I also agree with contacting Proneuron. Of coarse I would also contact Dr. Kao and Dr. Cheng as well. It does not hurt to contact them or any person that is making strides in the SCI field. Dr. Kao can operate in the U.S. on untethering and decompression, and I would think that if this is the case w/ this boy - that he needs one of these procedures, Dr. Kao would be the man many would choose. Perhaps direct the family to this site or give them all the info. available and let them call/contact these people and here from them and choose their route. God Bless this boy!!!

[giambjj]

Send him to Philly, everything is free there for he and his family and they have excellent facilities. He will feel better being among kids his own age. I know that from experience with my son, Jake.

JJG

[Sci Mom]

Melissa,

I think you've received some great suggestions, but let me add one other thing. When my daughter was injured, all our friends did research, handed us information that made my head swim, and kept trying to help in various ways. My daughter was at a model SCI facility [Univ. of Michigan, Ann Arbor] so there was tons of stuff in place for both her recovery and our coping. But...having said all that, the biggest comfort and help was to have a visit from a young man who graduated the year before her. He was injured his senior year of high school, just like Bri, and is now a med student at U of M. He's a C level quad, incomplete, I believe; but it was such a comfort to see him come rolling in, talking about dorm life and classes, and LIVING. It was the best boost any of us had. So...can you go visit this boy? Seeing that life will not be ICU and IV and feeding tubes forever could be just the "medicine" they need right now.
Godspeed~
Sci Mo