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in desperate need of help for 16 year old daughter

myheartkayla
0 Recommendations

Hello my daughter in february 07 was paralized with in 30 minutes from waist down we have been through three diagnosis and treatments for two of them the most recent is spinal cord stroke she is not receiving any physical therapy and has no one following her neurologist have written her off. My biggest problem is I lost my job having to stay home with her do to house is not handicapp no ramps and she can not get in bathroom without removing her wheels. And now she wants a job like any normal teenager but she seems to be getting turned down everywhere she applies. This is causing the self esteem she has built back up to fall right back down. I live her in Jacksonville florida and all the resources are out of funding or they are down sizing. Is there anything out there that can help us I am totally lost.

Thank you for any information

Explore topics in this discussion:

Surgery Amyotrophic lateral sclerosis (ALS) Spinal cord injuries Occupational therapy Stroke Riluzole Seizures Physical therapy ALS Movement disorders

10 replies

Tburnett1105

Hi,

I am not sure in which area you are wanting help. Answers about funding, helping get a job, another hospital...so I will tell you my experience in all these areas.

Since you are in Florida, I would contact the Miami project (www.miamiproject.org) and get her there ASAP! There is no excuse for any hospital to 'wash their hands' of a spinal injured patient! They are all such individual cases and you can never tell what may happen. Sounds like you need to deal with the experts in this field.

I live in Georgia and my son was a patient at Shepherds in Atlanta GA (4 years post now, he's a C4 Quad). Shepherds and the Miami Project will take out of state people but I just thought it might be closer for you.

The Shriners are great as well. We have been to Philadelphia several times. They take care of everything and have great doctors, nurses and general staff.

If you would like more information on any of this stuff please feel free to email me. My son was injured 4 years ago today and even though I may not know everything I can help you out in alot of different areas.

As far as work for her, my son got his job through an apprenticeship in school. He does drafting with a quadjoy for TVA. It sounds like your daughter as full function from the waist up so I don't understand why they wouldn't hire her as a phone operator, clerk or any other job in that area. Shepherds has a department strictly for helping people get jobs, if you were to go there for anything, I know that the Bridge program would help her.

audreys

Hi! If you are thinking of taking your daughter to Shriner's SCI hospital in Philadelphia, I believe the Shriners can help with transportation, if you need help. Check it out - I know that was the case for some people when we were there two years ago. They also take care of all medical costs at the hospital, and may have some pointers on getting help for your daughter in your community. The only thing we paid for was food for the grownups. Audrey

writerlass

Hi!
I, too, think that Shriners is a good option for your daughter, as is Shepherd Center.
There are organizations that may be able to help you out with home modifications, such as Habitat for Humanity and Rebuilding Together.
As for employment, has your daughter contacted the Florida Department of Rehabilitation?
For additional information, there is the Florida Spinal Cord Injury Resource Center at Tampa General Hospital. Their website:
http://www.flspinalcord.us/

I hope this helps!

grisglass

Florida Vocational Rehab Commission
www.rehabworks.org
You need to get her registered with your VR they are your key. You can enroll her yourself if need be.

Job Accommodation Network
just type in the above in a Google Search, great folks out of West Virginia University, They help Nationwide.

Also do a Google Search, Americans With Disibilities Act. I'm sure you will be amazed at the info there.

bucklestwins

My daughter also had a spinal cord stroke (T3-T7). At first we were told that she would not have any recovery below the level of injury, but then we went to Kennedy Krieger Institute. That is a fantastic facility with amazing therapists and doctors, and like all of the other places mentioned, they gave us great hope. We have seen some recovery in our daughter, and she works very hard to recover as much as possible. Your daughter should definitely be receiving physical and occupational therapy, and don't let anyone tell you differently. Check out all of the places mentioned, and hopefully one of them will work out for you. If you have any questions, please feel free to contact me.

Sincerely,
Melissa
http://www.freewebs.com/bucklesfamily

jslegal

As for physical therapy, check to see if there is a local physical therapy school to see what time they maybe able to donate. Check with the local gyms and see if they can provide some weight training to help strengthen her arms and core muscles. The time is now to work, work and work the muscles and stimulate the nerves so not to loose precious muscles. My friend's daughter's (C-6-7) community golf club has had several fund raisers which assisted in getting funds for home modifications, travel and payment to go to Project Walk in California, Push to Walk in New Jersey and is going to Shriners in Philadelphia for tendon transfer surgery. Shriner's is providing the surgery and her mother only has to provide lodging and food. Get your community involved, there are great and wonderful resources available.

Check to see of there are any clinical trials in your area which may help... a lot of the medical colleges in every state do research along with the model hospitals. I did a quick search and these are some that I found but maybe you can take some time each week to look for trials to help out! http://www.cureparalysisnow.org
http://www.pvamagazines.com/pnnews/
https://www.clinicalresearchnetworks.org/default.asp
http://www.paralysis.org/site/c.erJMJUOxFmH/b.1337933/k.9B0F/Clinical_Trial s.htm
http://www.sciresearch.org/
http://www.sci-info-pages.com/clinical.html
http://www.nature.com/sc/index.html
http://www.centerwatch.com/patient/studies/cat238.html
http://search.centerwatch.com/default.aspx?SearchQuery=spinal%20cord

http://news.yahoo.com/s/hsn/20080501/hl_hsn/clinicaltrialsupdateapril302008

http://stemblog.net/?p=125

http://www.google.com/notebook/public/12807577635681740529/BDSfCQwoQ-daupfc i

http://www.neure.com/Index.cfm?file=researchstudies.htm#researchtrials

http://www.sciencedaily.com/search/?keyword=spinal+cord+injury
Web address:
http://www.sciencedaily.com/releases/2007/07/
071106122525.htm

New Clinical Trials Could Open 'Golden Era' In Spinal Cord Injury And ALS Research ScienceDaily (Nov. 9, 2007) — New experimental therapies are being -- or soon may be -- tested in clinical trials that could open the doors to a "golden era" for research to improve the treatments of people with spinal cord injuries, brain injuries, stroke, and other severe movement disorders, scientists say. "The studies highlighted here reflect decades of basic science research that have led to some measure of understanding the events taking place in traumatic neural injury and disease, and how these events can be modulated to improve function," says Aileen Anderson, PhD, of the University of California, Irvine. "As a result of this work, we have the exciting opportunity to begin testing these pathways in the clinical setting in an attempt to minimize the progression of damage and, in some cases, perhaps repair it," says Anderson.

The new therapies include an experimental, custom-made antibody to NOGO-A, one of several inhibitory proteins for nerve fiber growth that are produced naturally in the human spinal cord and brain. It soon will be evaluated as a therapy for patients who are newly paralyzed from spinal cord injury.

This Phase I clinical trial, conducted by the European Network of Spinal Cord Injury Centers, follows extensive laboratory research on NOGO-A, as well as animal tests of the experimental monoclonal antibody's effectiveness in neutralizing the inhibitory protein.

NOGO-A is one of several proteins whose existence in the adult body helps to explain our limited ability to grow new brain and spinal cord tissue in response to injury or disease, says Martin Schwab, PhD, of the Brain Research Institute at the University of Zurich in Switzerland. These inhibitory proteins, which are silent during embryonic and fetal development and even during the first few months of an infant's life, vigorously limit the inherent ability of adult brain and spinal cord neurons to regrow fibers that have been cut by injury.

"As a result, neurons as well as their axons retain a low growth potential following brain trauma or spinal cord injury," Schwab says. Axons transmit from neurons the electrical impulses that underlie our ability to move our arms and legs.

To restore fiber-growing ability to the brain and spinal cord, Schwab first prevented NOGO-A from fulfilling its function as an inhibitor of fiber growth and regeneration in laboratory animals. He showed that the anti-NOGO-A antibody allowed fiber tracts of the rats' damaged spinal cords to regenerate partially, thereby restoring some motor function.

"Animals treated with such reagents showed molecular changes which strongly suggest that the growth machinery of the nerve cells is turned on, similar to the situation during development," Schwab says. Anatomical studies showed that the antibody treatment induced long-distance regeneration and the formation of new circuits.

"Nerve fiber tracts that were not directly affected by the injury also sprouted after treatment," Schwab says. These physical changes restored some of the animals' leg movement, a "remarkable behavioral recovery," he adds. "Many animals showed almost full recovery in sensory as well as motor tests." The untreated, or control, animals in the study remained severely impaired.

"The coming few years will show whether the step from bench to bedside can be successfully achieved in spinal cord injury and central nervous system trauma without the danger of serious side effects or complications," Schwab says.

In another presentation, Michael Fehlings, MD, PhD, of the Toronto Western Hospital and University of Toronto described several current or planned clinical trials for treating spinal cord injury. Immediate treatment may not only reverse the initial damage to the spinal cord but also may minimize secondary injury, potentially sparing the patient additional neurological problems, Fehlings says.

The prospective clinical study, titled STASCIS, which is evaluating the role and timing of early decompressive surgery in patients with cervical spinal cord injury, has to date enrolled more than 240 patients. The study, he says, is based on the premise that within hours of a spinal cord injury, a patient should be undergoing surgery that will reduce pressure on the cord in order to limit damage to it and surrounding tissues. Initial evaluations of the clinical trial data have indicated that immediate surgery is safe and feasible and, by reducing the pressure on a compressed spinal cord, may encourage the recovery of function.

In another clinical trial, scientists soon will determine whether the Food and Drug Administration-approved medication riluzole protects nerve cells and promotes functional recovery when it is administered after spinal cord injury. Riluzole, now used to treat people with amyotrophic lateral sclerosis (ALS), prevents neurons from releasing too much sodium. In lab animal studies, the drug was neuroprotective.

In other animal model studies, the drug Cethrin® has been found to lessen post-traumatic neural cell death. To evaluate the safety of this recombinant protein drug and obtain preliminary efficacy data in human patients, Fehlings and colleagues at nine centers in the United States and Canada administered the agent topically to 37 patients with complete cervical and thoracic spinal cord injury. "The drug shows a high degree of safety and promising clinical neurological improvements after one year of follow-up," he says.

"While the results of a single arm, uncontrolled study need to be interpreted cautiously, this level of improvement exceeds rates of spontaneous neurological recovery," Fehlings says. A prospective, randomized placebo-controlled efficacy trial is planned for early 2008.

The Fehlings team has completed studies in lab rodents in which neural stem cells were transplanted following spinal cord injury. The stem cells, programmed to restore the myelin layer around spinal cord nerve fibers, promoted significant neurological recovery. This strategy shows considerable promise for translation into the clinic, Fehlings says.

If it continues beyond a critical time point, the medical practice of treating spinal cord-injured patients with immune suppressive drugs as soon after the injury as possible may hinder rather than promote recovery, according to studies by Michal Schwartz, PhD, of the Weizmann Institute of Science in Rehovot, Israel.

"For many decades, the detection of immune cells in the injured brain or spinal cord was interpreted to represent part of the pathological process that occurs following injury and prevents healing," Schwartz says. "This dogma was so well ingrained that the common practice in Western countries has been to treat patients who experienced spinal cord injury with immune suppressive drugs as early as possible following the injury."

However, Schwartz's laboratory showed that the immune system is required for protection, repair, and renewal of the brain and spinal cord following acute or chronic damage. But, she says, "to achieve beneficial results, immune-cell involvement in repair must be critically controlled in terms of the timing, nature, intensity, and duration of activation."

A beneficial immune response involves not only the activity of immune cells residing in the damaged tissue, but also the timely recruitment of immune cells from the blood. These blood-borne immune cells home to a precise location around the injured site, where they sense the tissue damage and secrete factors needed to induce repair.

"This timely recruitment of immune cells to the site of injury, and their well-controlled activation, is an essential stage in the multistep process of brain and spinal cord repair," Schwartz says. "Curtailing this process by suppressing, rather than modulating, the immune response deprives the tissue of its most powerful physiological repair mechanism."

Schwartz designed and tested several immune-based therapeutic approaches for promoting spinal cord repair. One was a vaccine containing a peptide derived from a protein that resides in the injured tissue and that can boost immune response by activating a particular population of immune cells, the T lymphocytes. T lymphocytes specifically recognize proteins that are associated with the injury.

Pairing the vaccine with an injection of neural stem cells resulted in a synergistic effect on recovery. "Surprisingly, however, the injected stem cells did not themselves give rise to new neurons but rather promoted the formation of new neurons from the tissue's resident stem cells," Schwartz says.

Scientists also have found in work with laboratory animals that when human stem cells are transplanted into the body, they form active synapses with the animal's own neurons for limb movement. After they were implanted, the human stem cells developed into neurons and made local connections with spinal cord motor neurons but they did not project to the animals' peripheral nerve and hind limb muscles, says Vassilis Koliatsos, MD, of Johns Hopkins University.

Koliatsos conducted this study with rodents affected by a genetic form of ALS, which is characterized by the progressive degeneration and death of motor neurons. "These findings demonstrate that grafted human neural stem cells become synaptically incorporated into the motor circuitry of ALS rats," Koliatsos says.

The exact role of these new synapses, which are specialized junctions through which neurons signal each other, is not yet defined. Koliatsos says that they may serve to communicate physiological signals pertaining to limb movement or, more likely, to transfer nourishing chemicals from neural stem cells to the degenerating or vulnerable motor neurons of the host ALS animal.

The transplanted human stem cells produced an abundance of two key nourishing chemicals for motor neurons: glial cell-derived neurotrophic factor and brain-derived neurotrophic factor (BDNF), which, Koliatsos says, "may be the main factor behind the therapeutic effect of neural stem cell grafts."

In the latest study, the implanted human neural stem cells, obtained from a 2-month-old human fetal spinal cord, were transplanted into the spinal cord of ALS rats when they were 9 weeks old.

Adapted from materials provided by Society For Neuroscience.
APA MLA
Society For Neuroscience (2007, November 9). New Clinical Trials Could Open 'Golden Era' In Spinal Cord Injury And ALS Research. ScienceDaily. Retrieved May 13, 2008, from http://www.sciencedaily.com­/releases/2007/07/071106122525.htm

http://www.pvamagazines.com/pnnews/

http://www.nyln.org/index.html
The National Youth Leadership Network (NYLN) is a non-profit organization run by young people with disabilities. We empower all young people to reach their maximum potential.


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http://www.dol.gov/odep/pubs/brochures/wrp1.html

Blondeyvonne

We too are in need of additional help. My son is paralyzed from a car wreck 12-8-07 t8 down. His medical bills exceed his medical needs. He has had alot of setbacks, two seizures on May 23rd, you name it. Mississippi Medicaid does not even cover all of the medications he takes. Try this site someone told me about yesterday. www.spinalcord.org and in the menu to the left you may see A-Z and go under F for financial assistance, just browse and there are resources you can apply for to get help, I'm in the process of going to that site and printing some applications to apply for help. By the way how old is your daughter? My son just turned 22 on June 27th of 2008 so he has been paralyzed about 7 months. He is considered an adult at 21 and they greatly reduce their office visits, number of medications and you name it. I have also had to quit work due to taking him to rehab three times a week and other appointments he has to keep.
I will keep you all in my prayers, let us know how your daughter does and what help you get.
Monica-Bradley's mom

myheartkayla

Thank you so much for everyone's advise being a single mother and trying to make ends meet as been very difficult. I am looking into everyone's suggestion and hopefully we can climb the hill. Thank you once again for the support and ecouragement and God Bless every single one of ya.

Lots of Thanks
Kristy and Kayla

Friend4Life

First thing you need to do is get in touch with the Florida Spinal Resource Center. If you daughter was in the hospital for this then there will be a Florida Case worker. The people at FSRC will gladly take your call and give you the advice you need.

ResourceCenterStaff

Florida Spinal Resource Center as well as the FL SCI trust fund are designated for traumatic injuries which is not what occurred with your daughter. The good folks at the Florida Resource Center will still provide information but unfortunately not to likely the case manager.

You have been given some excellend resources. Call the Resource Center at 800-539-7309 and ask for an information specialist, they can provide you with information, resources and printed materials.

The Resource Center as part of the Christopher and Dana Reeve Foundation maintain this forum. You can click directly to the website from the sign in page here.

Hope you give us a call.

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