It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Cerebral Palsy Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 12-09-2002, 08:26 PM   #1
Newbie
 
Join Date: Dec 2002
Location: Celebration, FL USA
Posts: 2
DavysDad HB User
Question Where should we move for Adult CP care? (long post)

Our 34 year old son, Davy, a h.s. grad has severe athetoid CP, he is brilliant and beloved, and totally dependent on us. We live in Celebration, Florida. Until sixteen months ago Davy just had CP, and my wife and I fed him, bathed him, did everything for him, all quite happily. But then Davy had a crisis, an impacted colon that led to toxic shock and a resection. The doctors gave him a colostomy, a tracheostomy and a feeding tube and told us he was "in the final stages of CP." He was in the hospital in South Carolina, where the crisis occurred, for 5 months, mostly in the ICU, and his weight went from 98 pounds (normal for him) to 71 pounds.

While in the ICU Davy had about a dozen bouts with pneumonia and every other imaginable infection, and he developed bed sores, one in the small of his back was so big that I could put my fist into it. After trying every antibiotic known to man, he left the hospital in December 2001 with hospital induced MRSA and the immediate goal, as the doctor said, to "go home to Florida and die from an opportunistic infection."

Well needless to say because he is out of the hospital and at home Davy is alive and has gained back most of the lost weight, and we have cured his awful bedsores (thanks to aloe vera), and in the clean environment of home we have even chased away the MRSA.

If all he ate was the prescribed liquid food that drips through his J-Tube he would still be 71 pounds, or dead, but we give him unprescribed nutritional supplements through the tube including Oasis products - meta berry, meta greens and aloe gold, also liquid protein, supplemental mega vitamins, Olivir, Immunocal, and acidophilous.

It took getting his State Representative involved to get him the Medicaid Waiver, but once he got on the waiver, he started getting supplemental nursing services which is a good thing, as his Mom and I had been burning ourselves out taking care of Davy 24 hours a day for 34 years. Only downside of this is that one of the nurses inadvertently popped his upper arm out of the socket, and it won't go back in, so he will be dealing with that issue for life, with the ball of his humerus wedged in his pectoral muscle. The MDs agree that putting it back in place would be unsuccessful because of his extreme extensor spasticity that would pull out any stitches. Also Davy refuses to let them operate on his shoulder. To him is is merely another minor disruption in his life. There is no pain involved, and he wasn't planning to pitch for the Marlins anyway (although they could use him.)

The BIG problem is that we live in Florida, the most underfunded state for medical care, because we have a humongous elder population, a very high immigrant population, and a very high birth rate, all of which drain funds away from care of the disabled. Oh yes, we have no reliable tax base, and a Bush for a Governor. To get any medical attention requires a trip to the emergency room. His doctors book appointments one month in advance and a blocked feeding tube needs to be attended to immediately, not in a month. None of the specialists who see Davy really knows a thing about him except that he is beating the odds, and they do not speak with one another about him at all.

Davy will always be at home and will never be institutionalized. http://www.healthboards.com/ubb/t_up.gif After my wife and I are gone his sister and brother will take care of him. If they are gone my sister and her kids will take him in. Yes they all want to do that. We are of Asian descent and it is part of our culture, so don't flame us about laying a trip on our other family members. Davy wants to be at home and would die, as many of his friends have in the past, if he were in a nursing home.

We are thinking of moving. Our medical "team" is a joke, just underpaid and overworked medicaid doctors, a revolving door of foreign trained http://www.healthboards.com/ubb/alien.gif specialists who have never seen severe CP and don't ever communicate with one another. We want to talk about getting the colostomy reversed, closing off the tracheostomy and maybe eventually getting him back on solid food, in spite of a deteriorating swallow and some degree of aspiration. None of them will talk to us about these radical ideas. They just want to see the status quo for Davy because to imagine him back in his former condition is beyond them. None of them ever met him when he just had CP so they can't visualize him without the colostomy, tracheostomy and feeding tube.

Here is the question -- Is there anywhere in the US where there is a major facility that takes care of adults with severe CP on an outpatient basis and actually has a medical team approach that works? Is there a place where Davy and his doctors could come up with a plan for rehabilitation? If so, we could move there and I could set up my very mobile business there. If not, we will stay in central Florida and "bloom where we have been planted." We are a very squeaky bunch of wheels and can attract lots of oil, but it is such a struggle just to get the machine up and moving, much less keeping it chugging smoothly along. As Roseanna Roseanna Dana used to say, "There is always something!"

Any thoughts on the subject? Is there such a place, or should we just keep pushing the system here? Just today an orthopedist told us that no such place exists, and that there is no facility in the US that is renowned for helping adults with CP. "Every town is Mayberry and no doctor is any better than another, because nobody focuses on this rare but difficult condition," was his response, along with, "You are the case manager, and nobody in the medical community is going to take on coordination of such a complex set of conditions, only a parent could do it."

Anybody else ready to scream?



------------------
DavysDad
__________________
DavysDad

 
Sponsors Lightbulb
   
Old 12-11-2002, 11:40 PM   #2
Junior Member
 
Join Date: Nov 2002
Posts: 14
lanettecj HB User
Post

davysdad, I'm scanning the health board - just could not close this page out without responding to such great people with such "heart", going for them, as well as that great upbeat sense of humor. You are something else, kiddos. Lots of love to you all. For immediate needs, all I know about south Florida is there are some great churches - maybe they could set up some respite volunteers. Making "time for yourselves" daily or weekly a top priority would be so important. You will be doing it for davy - you will have new strength to return to caring for him. Professionals have a term - "professional detatchment." They have to protect that beautiful caring part of themselves that led many of them into their line of work -- protect it from "burn out." Burn out is a serious condition, also. Nobody wants to have to deal with that as well. "Take good care of yourself . . ." as the song says. Love to all. "Underneath are the everlasting arms."

 
Old 12-13-2002, 11:19 AM   #3
Newbie
 
Join Date: Dec 2002
Location: Celebration, FL USA
Posts: 2
DavysDad HB User
Post

lanettecj - Thanks for the good thoughts. Respite is not needed for us, we are happy to do the work and have always done it. With Medicaid nurses we already have more help than we've ever had. What we need to find out is where we get a caring and compassionate MD who accepts United Health Care Medicaid and will head up an effort to help us with a treatment plan, not just palliatives and solving immediate problems, but someone able to envision Davy without a colostomy or tracheostomy. Our current assigned primary care physician doesn't have a view of Davy getting better. We need a new team with a new leader.
DavysDad

------------------
DavysDad
__________________
DavysDad

 
Old 12-19-2002, 01:57 AM   #4
Junior Member
 
Join Date: Nov 2002
Posts: 14
lanettecj HB User
Talking

Hi, davy'sdad;

Haven't been on-line for a while; just saw your response. Sorry, didn't mean to give what you did not need. Know that can be un-helpful at best. Wish I knew more about Florida help or help other places. We were just talking here today about how important it was for us, at least, to be able to communicate in our first language with our MD. I've studied other languages also & worked with others - maybe 5 different first languages in one setting. The stress was increased, like the stress one sees with someone with cp trying to communicate, to use speech. Using sign language seems to bring in the good feelings and sense of humor. Not sure where I'm going with this; but hope any input is helpful. Love to all & hope you find what you are looking for. ( For myself, I hope you don't mind if I say, the Great Physician has handled some really tough stuff for me when I put them in His care. ) I know a friend from work asked if anyone knew an MD of her first language & culture.


 
Old 12-19-2002, 02:26 AM   #5
Junior Member
 
Join Date: Nov 2002
Posts: 14
lanettecj HB User
Post

Hi, again,
Maybe just sharing something I do know something about will ring a bell somewhere. There is a lot of talk & new research about celiac's & wheat-free diet helping a lot of friends with a developmental history. If a patient's respiratory & colon problems started in the first year after infant inoculations & continued into developmental problems & other things, there is a 1986 law of help for families; I think it may have been expaned this year. Try a search under mecury poisoning or autism. It seems that innoculations were infursed with high amounts for some dumb reason & many children were seriously affected. There are a lot of reasons for disabilities & most have nothing to do with the family or parenting or care. Anyway, colon problems if established by a simple blood test to be celiac related, can be improved (i.e. better absorption of essential nutrients & resulting improvement). There should be some celiac web sites that can give where & when blood screening is done. They try to test first before going on an all wheat-free diet because it can be very difficult. (reading labels, learning all the terms that mean some wheat has been added in processing). Results can be dramatic. Children with autism have been cured. Developmental problems can be mangaged better. Less need for medications.
This all may have nothing to do for your needs; just some of the info I've been gleaning out on the Web. CU Love to y'all.

 
Old 05-26-2006, 06:13 AM   #6
Junior Member
(female)
 
Join Date: Jun 2005
Posts: 41
WMCR2001 HB User
Re: Where should we move for Adult CP care? (long post)

Hi Davysdad!

I wish I knew some advice that I could give you, but I am new to CP myself. My soon-to-be fiance has spastic quadriplegia CP. Like your son, he is very intelligent and has finished high school. My boyfriend is incredibly driven and smart--very much like your son, I'm sure.

The experience Davy had sounds very unpleasant, and I would be heartbroken if a so-called "professional" told me that my loved one was suffering from "final stages" of CP. Cerebral Palsy is NOT a disease, but that it how that doctor made it sound. And clearly, with your family's love and support, Davy has recovered quite well. I really hope and pray that you will be able to help reverse some of the effects. It might take him some time to retrain his muscles to chew and swallow, though, if he hasn't used them for a while.

My boyfriend is on Medical, the Californian version of Medicaid. When he moves here to Virginia, he is going to reapply. The whole ordeal is not easy.

Some of the situations you described about Florida (high immigration, lots of aging people, etc.) would definitely indicate a high difficulty level in getting proper care for Davy, too. Maybe a good way to evaluate whether or not to move is to look at other states to see what can be provided.

My boyfriend almost had to live in a nursing home, and believe me, I think he would have suffered immensely. I am with you... the best care for a person with CP is one's own friends or family, not in a hospital setting or a nursing home setting.

About the only suggestion I have is to find other families with loved ones who have CP and ask them how medical coverage works in their state. California is supposedly very strong in its health care. I don't know how Virginia is going to compare, but we shall see....

Good luck!


Christina

 
Old 05-26-2006, 03:15 PM   #7
Junior Member
(female)
 
Join Date: Jan 2006
Posts: 27
Teryn HB User
Re: Where should we move for Adult CP care? (long post)

Dear Davy's Dad,

Do you have United Cerebral Palsy in Florida? Here in Oregon they have a support specialist through them that helps families find out what services are available to them as well as helping you advocate for your son. They would also be able to get you in contact with other parents who might be able to offer advice on a MD.

Also, I agree with Christina that Ca. is awesome for people with disabilities. My husband and I have seriously considered moving there and our daughter with CP is only one. My friends mom who has a son who is 22 and disabled actually gets free medical care, social security, respite, an adult-day program at the local college, and she gets paid to care for her own son.

The other thing that I know about is that in Oregon when your child is over 18 if you become a certified foster parent and then you can get paid to watch your son as well as receiving social security. You could use the extra money for in-home nursing or maybe even to see a DR. that doesn't take your insurance.

If what you're really interested in is a good doctor I would strongly suggest you find other parents of adults with disabilities and pick at their brains. That's how I've found the doctors I've wanted for my baby here in Oregon.


My heart goes out to your family and I hope you find what you need!

love,
teryn

 
Old 07-24-2006, 03:47 AM   #8
Newbie
(female)
 
Join Date: Jul 2006
Location: missouri
Posts: 2
clark2002 HB User
Re: Where should we move for Adult CP care? (long post)

Dear daveysdad..
1st i must say i admire you and your wife.. like you i have a 26 year old son with end stage cp. chris had the colostmy as a baby though and they undid it at 5. he probably never should have had it reversed though because he has never had correct bowel function. last month he was in the hospital for impaction and they placed a feeding tube in him. he pulled it out on his own saturday and now the dr's refuse to put it back in.
as for a really good dr to help try st louis mo barnes jewish hospital, or the university of missouri medical center in columbia. they both have some top notch dr's that take all of the medicare madicare programs.and i am sure if you dont want to move they could refere you to drs closer to you. hope this helps you some.. love your angel and feel so special that he has been sent to live with you....

 
Old 10-13-2006, 01:49 AM   #9
Member
(female)
 
Join Date: Oct 2006
Posts: 59
nikelboi HB User
Re: Where should we move for Adult CP care? (long post)

check out university of michigan & national rehabilitation center in washington, dc.

hope this helps, your family is really inspiring. i grew up in Fl and now am moving back to birthplace of Philly for the same reasons. I heard UPenn has specialists there too...

cerebral palsy network might give you an opportunity to chat with parents of CPers as well.

Best wishes in your research,

nikelboi

 
Old 11-08-2006, 11:46 AM   #10
Newbie
(female)
 
Join Date: Nov 2006
Location: SAN DIEGO
Posts: 2
Dreamer111 HB User
Re: Where should we move for Adult CP care? (long post)

HI!

I am a 57 year old woman with cerebral palsy. I have very little faith in doctors and their knowledge of CP since I have spent a lifetime proving most of them wrong.

First of all, there is no such thing as "the last stages of CP." CP is a condition, NOT A DISEASE! Thank God, you got your son out of that hospital.

Second, I live in the San Diego area. California probablly ranks as one of the states serving the developmentally disabled population. Regional Centers provide funding for day programs, independent living programs, and respite care. There are other living options for your son other than nursing homes and institutions.

There is an adult CP clinic through Children's Hospital in San Diego. It is run by Dr. Hank Chambers, who has a son with CP. He is the only doctor I trust.

Good luck in your pursuit of a better quality of life for your son.~~~SUNSHYNERAE

 
Old 11-08-2006, 10:31 PM   #11
Newbie
(female)
 
Join Date: Nov 2006
Posts: 1
Professor W HB User
Lightbulb Re: Where should we move for Adult CP care? (long post)

Dear Davysdad,

I am a 41 yr. old woman with Athetoid CP. I've been fortunate enough to be able to take care of myself for several years. As I age, my symptoms are increasing and abilities are decreasing. I also have developed other heath issues.

I live in CT and have been searching forever for a doctor for adults with CP. I found a great program in NJ at Englewood Hospital. It is run by Dr. Richard Bruno. I never saw anyone as severe as you son there, but one never knows.

Also, I'm a widow. I married a ventilator dependent,quadrapeligic 3 years ago. He had everything but the colostomy bag. He was living in Seattle (Everett) WA. when we met. The medical care he was receiving was outstanding. 24 hr RNs, doctors who were on the ball and a caring team of professionals. If you'd like, I can get the name of his doctor out there.

It's a long way from Fl. But, if we could meet, fall in love & get married, it's worth the proper medical care for your son.

I wish your son and all of you hope and help!

Professor W

 
Old 11-13-2006, 02:07 PM   #12
Junior Member
(female)
 
Join Date: Nov 2006
Posts: 14
NeiceOfRuth HB User
Re: Where should we move for Adult CP care? (long post)

Just want to say that I appeciated your post.

I was JUSt telling my husband it seems like there really isn't a lot of info or knowledge on aging with CP. And thanks for saying what you did abt the "late stages of CP." I wanted to scream when I read that b/c like you said, there's no such thing.

I wonder what the stats really are. It seems to me that older CPs are in the minority, and I wonder if that could be due to the likelihood that not many much older than me survived (given the lack of medical intervention available "back then").

I'm 38 btw. I have spastic quad (w/athetoid tendencies just in the last 8 yrs. or so). I use a power w/c full time, am married to an AB and have 2 AB children by birth.

 
Old 12-06-2006, 04:27 PM   #13
Junior Member
(female)
 
Join Date: Dec 2006
Posts: 11
carmenah HB User
Re: Where should we move for Adult CP care? (long post)

Hi my name is Carmen. I am 35 years old and I have CP. I live in Chicago and I recently had a baby girl. The reason I have told you is because; the hospital that I went to has one of the best resources in dealing with CP. It is based out of Chicago. I think your son would benefit going there. They will talk to your son as a person. The name of the hospital is the Rehabilitation Institute of Chicago. Here is the web page [url]http://www.ric.org/search/kuiken.php[/url]

If you have questions please reply.

Carmen



------------------
DavysDad[/QUOTE]

Last edited by carmenah; 12-07-2006 at 06:13 PM.

 
Old 12-07-2006, 08:57 PM   #14
Junior Member
(female)
 
Join Date: Dec 2006
Posts: 11
carmenah HB User
Re: Where should we move for Adult CP care? (long post)

Hi Christina,

Congratulations on your engagement. My name is Carmen and I am 35 with spastic athetoid quadriplegia CP. I was living with my parents for 32 years; believe me I wished I could have left when I was eighteen. My parents brought me up to be as independent as possible. I worked two jobs and volunteered I was very busy. Plus I have had lot of operations in-between everything else. I finally got the break I was looking for in 2003 I moved out on my own. They did not want me to leave because they were afraid, I had help from Personal Care Attendants and my boyfriend at the time. It was the best thing for me because my father was sick.

To make a long story short, I was married July 3rd 2004. My husband is (AB). We met about ten years ago. We were friends first and the best part of our friendship was that he did not see the CP. He new all of my limitations but he did not care. When we decided to tell our parents well you know how parents are. His side of the family asked a bunch of questions, like why would you want all that responsibility. My parents were glad. They still want me home.

Great news On June 13th 2006 I had a baby girl. Her name is Danielle and she was a month early. All in all we are so blessed with her. It is not easy because now my husband Chris has to do everything for us. I stay home with our daughter with help from the PAís. It was not easy to let other people take care of her but it has gotten easier.

It is not going to be easy. But God has a plan for you guys. He did for us. I am so glad that there are people out there that realize CP is not a disease.

Have a wonderful marriage

From the Huertas

 
Old 04-06-2007, 09:23 PM   #15
Newbie
(male)
 
Join Date: Apr 2007
Location: Nashville, TN, USA
Posts: 1
dwgarrett1963 HB User
Re: Where should we move for Adult CP care? (long post)

Davy's Dad,

Not sure if you ever got any information or not regarding your search for a medical community that could give you some real assistance with Davy, with physicians who talk to one another and stay informed on what the others are doing, etc., but I after reading your initial post, I wanted to let you know about Vanderbilt University Medical Center in Nashville, Tennessee.

Vanderbilt is one of the highest rated medical facilities in the country, if not the world. The physicians are world class, and they do communicate with one another and they don't treat patients in order to maintain the "status quo", they treat them so that they live their lives more abundantly.

My housemate has CP and he sees the clinic at Vanderbilt, when he actually is forced to see the Doctor (he's in denial at this stage of his condition).

I hope this helps, and I'll definitely be praying for your family.

God Bless and Keep You.

DW Garrett
Nashville, TN

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
why does my voice box move around in my throat nstark Ear, Nose & Throat 1 12-09-2010 09:04 AM
Where can you go when all the doctors have no clue? Robin71 Digestive Disorders 3 10-29-2009 10:08 AM
New Here .... Where do you start? ssdizzy Alzheimer's Disease & Dementia 9 11-15-2008 06:50 PM
Pain~Sadness~Waiting~Isolating!~Where and what Now?? skych Chronic Pain 40 08-05-2008 08:07 AM
Adult Tonsillectomy Saraw08 Ear, Nose & Throat 4 12-21-2007 05:20 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 07:52 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!