look down, see how many posts and years i have here. look around the LL medical community, see how many people of high stature and standing have tried to help and advocate for him. if they haven't helped directly, i've called them all to ask for ideas.
particular to his issues being BRAIN oriented, and his age, he has swiftly become a victim to the public school system, the legal system, the medical system, the insurance system, and the simple fact that there are less than half a dozen in-patient neurorehabilitation facilities in the country appropriate to his needs.
the psychiatric facility he is in .. because of financial concerns, now claims his brian is no longer a problem. it's just who he is. their plan is to send him back into the streets.
so, as most institutions do, despite advocacy under the law (ie: you must have a safe and reasonable discharge plan), they are now psychologically torturing him into thinking he has no brain problem (despite proof on SPECT).
hey hospital, if you know how to clear up a brain scan like this, i have about 1000 people ready to come for your therapy. but what's fact, what's right, what's morally correct, basic humanity turns out to matter little
they say it's perhaps a "home problem" and we need home support. OK, ya.. give me 24 hr medical supervision for him at home, and we'll try it. and the medical person had better be 6'5 with a tranquilizer gun for when my kid falls out of lucidity and into all of his brain symptoms, and tries to run.
we can't get him qualified for an appropriate placement anywhere else fast enough before they a. discharge him into the abiss, or b. they break us.
in speaking with the national brain injury association, my question is "so what happens to these kids?" (particularly age group 16-21), he ssaid, and i quote:
"most end up innappropriately placed in psychiatric facitlities, in jail, or dead."
all of them, including my son, have strengths and potential well-worth rehabilitating, not to mention basic human rights to care.
after working for two years the first go around to get him to relative wellness, i've been working for a year since a bad relapse occurred, day after day, been working for two months since the latest severe brain scan. with this injury, access to the community is deadly to him.
we have insurance, we know what's wrong, it's treatable.
so, we're talking completely exhausted resources and ideas. forgive me, but he is only safe in inpatient, so i don't want to hear about alternative treatments we can't get, i don't want to hear about concern, i know you all have it. i don't want to hear about supplements, i already know it. i don't want to hear about another outpatient doctor, i already talked to them.. i need real help and it's gotta come from somewhere.
someone give me a media outlet. maybe that will save his life. i could care less about privacy. we don't get help fast, and you'll most likely be reading about one of the last two sinarios mentioned above in about a week or two after his discharge.
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Mo, World Net Daily is a news organization that has dared publish knowledgeable articles about Morgellons disease and Crohns disease.
WND quoted Ginger Savely in their articles about Morgellons disease. One quote said more than half the people with Morgellons also have been diagnosed with Lyme disease.
WND carried the link to the investigation of the IDSA by the CT Attorney General.
They've never done a Lyme article, but a couple of their writers have had Lyme or their pets have been treated for Lyme.
Maybe Ms. Savely could convince them to do an article about your son and the injustice he's faced for years.
World Net Daily is not afraid of publishing controversial medical stories that contradict and expose the fallacies of current beliefs.
minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
Mo, I'm so very sorry.
All I can think of is perhaps that the "Under our skin" people may have an excellent list of media contacts who are already Lyme literate and who might like to follow up on the story. http://underourskin.com/index.html
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Shosty
Unregistered
posted
Mo, I remember you and your son from a few years ago. My memory tells me the issue back then was headache-? I have a teen who has had similar issues to your son's. We've had similar experience over the last few years, I would guess...
I know you are in crisis, but it is hard to understand the situation described in your post. Any chance you could write about it again?
Is your son over 18? (Making you safe from unwanted child protective services interventions, triggered by the hospital, for "home support")
Is he still on antibiotics? Other meds? Psych. meds? Neuro meds?
Has he had a full neuro work-up from a LL neuro, or has it been handled entirely by non-LL psych.'s?
Is there another place where he could be an in-patient where his situation is better understood? Is that your goal and question here?
Is the brain injury you refer to from Lyme? Was Dr. J. involved at one point?
I know it is tough to summarize, but if you could specifically describe what it is that you would hope the media could accomplish, what your desired goal is, it would help. I have been away from the board for a couple of years and am not caught up on your story.
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
The Acquired Brain Injury Program at the Shepherd Center Catastrophic Care Hospital provides a full continuum of services to meet the complex needs of people who have traumatic and non-traumatic brain injuries...
Phone 404-603-1400
I spoke with a representative who recommended you call the nurse evaluator for more details.
Call Marilyn Feeman at 404-603-1423. She is the admission liason for Shepherd Pathways, the post-acute medical facility for TBI/ABIs.
The facility is in Decatur, Georgia, a suburb of Atlanta. They have acute in-patient residential treatment program and also a longer term in-patient facility.
The pain facility associated with this hospital was very highly recommended by our first pain physician. The pain doctor couldn't say enough good things about their pain treatment facility. I assume their brain injury program is just as highly regarded.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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Have you heard of Dr. Frank Lawlis? He's at the Psycho-Neuro-Plasticity (PNP) Clinic in Texas.
He is on the Dr. Phil show and was helped a lot of people with different brain issues. I would love to take my kids to his clinic.
Peggy
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Mo,
You have been on for a long time, entrusting us with your private life and teaching others and sharing solutions.
I wonder if Make A Wish Foundation could tap you into some celebrity status which always seems to help HIV and famished victims.
I remember one of Doc J's kids got to come to Indy and ride with maybe Jeff Gordon (don't remember who) around the 500 race track. Maybe you could see Hall-n-Oats (?sp). Someone who has Lyme and let them realise your hell. Maybe you call that family and see how they got into that fortune....I assume it was Make a wish.
Maybe then they can connect you to someone else to do more.
I know it sounds lame.......he is sick. He has a horrific brain scan. Run with the doctors bull crap of dying and plea to make a wish.
Still thinking,
2roads
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Mo,
You have been on for a long time, entrusting us with your private life and teaching others and sharing solutions.
I wonder if Make A Wish Foundation could tap you into some celebrity status which always seems to help HIV and famished victims.
I remember one of Doc J's kids got to come to Indy and ride with maybe Jeff Gordon (don't remember who) around the 500 race track. Maybe you could see Hall-n-Oats (?sp). Someone who has Lyme and let them realise your hell. Maybe you could call that family and see how they got into that fortune....I assume it was Make a wish.
Maybe then they can connect you to someone else to do more.
I know it sounds lame.......he is sick. He has a horrific brain scan. Run with the doctors bull crap of dying and plea to make a wish.
Still thinking,
2roads
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
| IP: Logged |
minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
Up for any media savvy people
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
NOTE: We also have specialized programs for adolescents recovering from brain injury.
Closed-circuit cameras, bed alarms and specialized beds ensure safety.
****************************************
Inpatient Rehabilitation
Inpatient rehabilitation involves both the patient and his or her family in a treatment program that takes into account all of the physical and cognitive changes that have taken place, as well as the information the patient and family need to prepare for the future.
Our 30-bed, secured care unit is home to a program that treats not only brain injury but also patients with stroke (under age 65) and diagnoses including encephalitis and anoxia. We also have specialized programs for adolescents recovering from brain injury.
Closed-circuit cameras, bed alarms and specialized beds ensure safety. The unit includes a large therapy gym, a transitional living apartment with full kitchen, a recreation/classroom for adolescents, accessible bathrooms, private treatment rooms and a computer lab.
The family's role in rehabilitation is critical, and Shepherd works to find low or no-cost temporary lodging for family members who live outside driving distance of the Center. As recovery progresses, a patient enters the post-acute phase and may make the transition to Shepherd Center's day or residential programs.
Residential Program
Shepherd Center's post-acute, residential brain injury program is located at the Shepherd Pathways facility in nearby Decatur, Georgia.
The residential program has 12 designated beds that are supported by 24-hour supervision from life skills trainers, who support individual treatment goals.
Shepherd Pathway's comprehensive services emphasize the restoration of functional, cognitive, social and vocational skills.
A physiatrist assists in directing each patient's care with the support of nurses, therapists and rehab assistants. Specially trained life-skills coaches work with transitional residential patients to implement behavior and personal-management plans. Patients also receive assistance with activities of daily living (ADLs), medications and management of behaviors.
djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
hey mo-
it grieves me to read the details of your son's current situation.
i wish i had a solution.
the above suggestions are good, i am not connected to any media so i am unsure what i can offer.
the only thing i can think of (and i know its a long shot) is maybe to approach oprah or some other celebrity who has a soft heart. i know it sounds lame but they have the money and resources they just need to be contacted properly.
do you have any video footage of your son as well as a written story to submit?
another idea is creating a non profit in your son's name to accept donations.
i am not sure i fully understand what it is you need, if its money then we will raise it. if its home care than we will raise the money to pay for it...
i can spare a few bucks and im sure with the help on everyone on here we could scrounge enough to get your son in the right direction.
i will not waste your time with medication/dr ect ect suggestions as i am sure you have heard it all being on here for so long.
The Center for Comprehensive Services (CCS) in Carbondale, Illinois was established in 1977 as the first dedicated after-hospital rehabilitation program in the country for persons with acquired brain injury.
Neurobehavioral Houses Neurorehabilitation Houses Adolescent Program
There is a CCS program in New England; see the link from the CCS site.
CCS-New England, 639 Granite Street, Suite 215, Braintree, MA 02184
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