Medicaid Denies Baby CPM Exam

[WhataBreeze]

BrainTalk Community Members and Viewers


Those of you who have followed my postings for the last few years have only seen me not show my professionalism that God blessed me to keep when I acquired Central Pontine Myelinolysis. CPM, which is an immediate toxic destruction of the Myelin protection of your twelve nerves in your brainstem just prior to entering your brain. Officially its noted as a Neuromuscular Disease/Disorder of the Central Nervous System.

Presently there are ONLY a hand full of specialist in the WORLD who really know an acceptable amount of knowledge of what continues to be called a "Rare Orphan Disease." The fact is as CPM Survivor Layman Advocate and Founder of the "Central Pontine Myelinolysis Awareness Foundation," this new issue I'm currently involved in I believe will force me to pull out all stops on my way back to Bethesda, Md. and Washington, D.C. Please don't get me wrong as until now, both the National Institutes of Health along with the private meetings I had two years ago in three Senate Offices have been very encouraging in regard to establishing "CPM Awareness, Advance Training and Post Rehabilitation."

What has happened to now a two year old baby boy is Unexcusable and Unacceptable. First I want to state that this information continues to be given to me first hand by the mother of the baby. If most of you don't know, I have been assisting CPM victims and/or their families since 2004. This time now that this baby has been denied needed care by a noted specialist and a world renown Neuroscience Physician because Medicaid will not approve his having to go from Indiana to Maryland for an inital evaluation. With the immediate help of the NIH/ORD we are ready to arrange transportation from "Angel Flight."

Some of you may remember just recently CPM has been both recognized and validated by the NIH/NINDS decision to immediately add a Central Pontine Myelinolysis Information Page to the present Internet Neurologic Disorder Database List which you can view by the link in my signature.

I truly feel God has given this baby's mother the blessing of communication needed to make a difference in regard to awareness and his needed care for what is now known to be a chronic illness. Anyone is more than welcome to add your thoughts to what is probably a situation that many of you run into whether the disease is considered rare or not.

My current plan in regard to this new Thread is to continue with any important updates. You know my thought about there being "No such thing as to much prayer." Thanks for your attention and G-d Bless...


Mother Franky and Breeze

[dahlek]

those dreaded cost./benefit ratio nasty issues? We can't do the right things to support life, yet.. options are tooo costly?
Would Hawking be the exception? I do not know.
Life, and the pursuit of any good treatment for a quality life seems too far for most normal humans in this world...That a conglomorate makes any decision is far worse....that is remote, impersonal and more often inhumane.

I will marshall what little resources in my heart and mind left to send good 'vibes' in this direction. Frail but real. - j

[Buttons2]

Breeze, this poor mother would be floating in la-la land if it weren't for you & all the work on awareness & advocacy.

Have to wonder how many more babies & adults out there slip through the cracks.

God bless you for all you do & will pray this mother gets some positive input soon. There's always hope,and you are living proof that survival is possible. As for the government's denial to help.....just what we would expect in this day & age. I suspect the mother will have alot more to contend with in the future,she's fortunate to have found you!

I can't help wondering what role lawyers are gonna play in this? Seems to me that prevention is the key? Who will hold the hospitals accountable? Who can we trust anymore......

OT, but how is your knee situation now?
Take care,Buttons

[WhataBreeze]

I am terribly sorry for a delay in the continuance of this Thread as it has become a serious issue. Buttons, I do appreciate all your support. Hope to report more soon.

Franky and Breeze

[Buttons2]

Breeze, this is weird to hear from you cause yesterday I was gonna send you a PM to see if you were still with us! Cyber thoughts do get through I believe!

I'm saying prayers for this wee one & the mother. Please don't put your own health at further risk stressing over this, I know you are doing everything possible to help!

Is the court symstem involved I wonder? Time counts I know.....

Gentle HUG to you & Franky!
Buttons

[WhataBreeze]

Buttons, when it comes to support you always seem to be in the right place at the right time. The truth of the matter is if I did not have many counting on me, I'd stop all my advocating to strictly take care of me. The problem is thats not me.

Getting back to the baby, Medicaid will not work with this family so I made a decision that I personally will be sponsoring this darling baby through my newly established "CPM Awareness Foundation." This baby can't wait to be evaluated and started on a program that will give him the best care possible.Kennedy Krieger Institute/Johns Hopkins Medical School is a Medical Mecca.

The NIH/ORD has been very kind to line me up with Angel Flight to take care the mother and baby to Baltimore. More later....

[dahlek]

concerns me greatly - please tell me you are doing well, and just going thru some adjustment periods - j

[WhataBreeze]

BrainTalk Community Members and Viewers


Those of you who have followed my postings for the last few years have only seen me not show my professionalism that God blessed me to keep when I acquired Central Pontine Myelinolysis. CPM, which is an immediate toxic destruction of the Myelin protection of your twelve nerves in your brainstem just prior to entering your brain. Officially its noted as a Neuromuscular Disease/Disorder of the Central Nervous System.

Presently there are ONLY a hand full of specialist in the WORLD who really know an acceptable amount of knowledge of what continues to be called a "Rare Orphan Disease." The fact is as CPM Survivor Layman Advocate and Founder of the "Central Pontine Myelinolysis Awareness Foundation," this new issue I'm currently involved in I believe will force me to pull out all stops on my way back to Bethesda, Md. and Washington, D.C. Please don't get me wrong as until now, both the National Institutes of Health along with the private meetings I had two years ago in three Senate Offices have been very encouraging in regard to establishing "CPM Awareness, Advance Training and Post Rehabilitation."

What has happened to now a two year old baby boy is Unexcusable and Unacceptable. First I want to state that this information continues to be given to me first hand by the mother of the baby. If most of you don't know, I have been assisting CPM victims and/or their families since 2004. This time now that this baby has been denied needed care by a noted specialist and a world renown Neuroscience Physician because Medicaid will not approve his having to go from Indiana to Maryland for an inital evaluation. With the immediate help of the NIH/ORD we are ready to arrange transportation from "Angel Flight."

Some of you may remember just recently CPM has been both recognized and validated by the NIH/NINDS decision to immediately add a Central Pontine Myelinolysis Information Page to the present Internet Neurologic Disorder Database List which you can view by the link in my signature.

I truly feel God has given this baby's mother the blessing of communication needed to make a difference in regard to awareness and his needed care for what is now known to be a chronic illness. Anyone is more than welcome to add your thoughts to what is probably a situation that many of you run into whether the disease is considered rare or not.

My current plan in regard to this new Thread is to continue with any important updates. You know my thought about there being "No such thing as to much prayer." Thanks for your attention and G-d Bless...


Mother Franky and Breeze


June 20, 2007: Sorry, having current difficulties posting. Administration has been notified. Thank you...

[Buttons2]

Breeze, how has the baby survived this long without proper care? It's been what? Two months now? Will there be permanent damage?

I'm glad you decided to just take matters into your own hands,Medi-Aid would have just let this poor baby die before they had the decency to forget the rules & red tape & take action! Sad but that's the way this world runs....

This gives you a purpose,all your hard work has lead to this. A chance to truly make a difference. Hopefully other people will join in your efforts. What kind of media coverage have you gotten? We all need to believe there are still good,caring people in this world we live in today!

I see this as an opportunity for your awareness campaign. Nothing like a sweet baby to grab everyone's attention eh? And this could happen to anyone! Have to figure it's happened before & nobody recognized the problem,people just die without knowing why. Sad.....and soooooo unfair!

Give Franky a hug, and hope your knee situation has improved. Did you decide against the surgery? How is your mom these days?

Gentle hug to you,Buttons

P.S. Thanks for the update,I worry when can't get in touch with you.....and you have a true friend on another brain site ya know? There's far more to cyber friendships than mere technology.....

[WhataBreeze]

Good Morning BrainTalk Community Members and Viewers

It has been some time since my last posting. They say that no news is good news. I feel that was meant for the newspaper, tv news and my mail box. This time I have WONDERFUL NEWS as with quite some work along with the kind caring people at Kennedy Krieger Institute & Johns Hopkins Medical School in Baltimore, the NIH Office of Rare Diseases & National Institute of Neurological Disorders and Stroke, Angel Flight and very proud to say the Central Pontine Myelinolysis Awareness Foundation, the two year old little boy with CPM will receive the CPM Evaluation that is so badly needed that can possibly give him the needed direction to rehabilitation needed to make the very most of another CPM survivor.

I do want it known, until the CPM Awareness Foundation site is available, I started an email address on Yahoo. CPM_Awareness@yahoo.com As a Layman Advocate and Founder, if there are any questions I can assist with please contact me or Franky. G-d Bless...


Franky and Breeze

[Buttons2]

This is good news.....thanks for the update & keep us informed how the little guy is progressing.

HUGS,
Buttons

[WhataBreeze]

Hi Buttons and Caring Viewers,

To make a long story short, I personally have decided to sponsor the baby boy with the acquired Central Pontine Myelinolysis to get his needed evaluation at the Kennedy Krieger Institute for Children and Johns Hopkins Medical School. Dr's John McDonald, MD, PhD and Cristina Sadowsky, MD, will officiate.

This will be my first experience for the CPM Awareness Foundation sponsorship along with Angel Flight and more to be named at a later point. G-d Bless...

Franky and Breeze

[Buttons2]

Breeze, haven't heard from you in awhile. Just want you to know that you are always in my thoughts & prayers.

How's Franky? Rags is being a very bad dog & getting into a swamp on our daily walks!

What happened with the baby & the tests? How's the mother holding up?

And here's some good news to share! Remember javisi? She just got engaged to a wonderful man! See her thread on the emotional support forum. She keeps us going with finding several things everyday to be grateful for! Maybe we all can't have happiness but we all do have something to be grateful for!

Take care my friend,never give up HOPE.
Hugs to you & Franky,Buttons

[WhataBreeze]

Buttons My Dear Friend:

Thank you sooooooooooooooo much for asking. I continue to try posting but I first get a memo saying my posting must be seen by the moderators first. From that point they vanish. I have emailed several at B/T to ask why and what is happening to my needed info. NOW EVEN THOSE CPM VICTIMS AND FAMILIES WHO LOCATE ME FOR HELP KNOW OF NOWHERE ELSE TO FIND ME. IT'S SAD NOT KNOWING THE PROBLEM. I have all kinds of Great News in regard to my endless work for CPM as I feel sooooooooooooo bad I'm getting no chance to share it with the B/T members and viewers left who remember what I've gone through.

In regard to my health, I've had new issues start. As for Franky, I thank God so many times a day for Franky. He was in an issue of Johns Hopkins Magazine as he to is being studied.

Mother at 86 is inviting all to her 100th Birthday Party. She is either flying around with our care giver or flashes back to when I was a teen terror and has to lecture me.

As for the CPM Baby Boy, the NIH Office of Rare Diseases stepped up to assist getting Angel Flight to handle the transportation, the family will stay at Ronald McDonald House, and I ran out of strength looking for a sponsor to pay for the complete evaluation soooooooooooo I decided to make him the CPM Awareness Foundation's first one assisted as I will stand good for the complete cost. G-d Bless...

Franky and Breeze

[WhataBreeze]

Buttons,

I have been trying to post for over a month. I have all kind of news in regard to CPM, the baby, my woes again. If anyone gets this posting, try to email me at.

cpm_awareness@hotmail.com

Be sure to get this address to Button!!! G-d Bless...

Franky and Breeze

[WhataBreeze]

This is good news.....thanks for the update & keep us informed how the little guy is progressing.

HUGS,
Buttons



Buttons... I have all kinds of CPM news about the baby, me and cpm.



Pease email me at --------> cpm_awareness@hotmail.com

[WhataBreeze]

CPM Baby Update: After being declined by Medicaid twice, the "Central Pontine Myelinolysis Awareness Foundation," is going to sponsor the CPM Baby's evaluation at the Kennedy Krieger Institute for Children and Johns Hopkins University in Baltimore, Md. Angel Flight has agreed to handle the transportation and Ronald McDonald House will offer the lodging. This is all scheduled for the latter part of September.

I'm not expecting to see this wonderful posting but at least God knows the truth my friends....

Franky and Breeze

[Nana4&cntn]

Hi Breeze,

I may be naive but what about the govenor, congress, and senate folks. I was a Social Worker in Nebraska, and if a call went to the govenors office often enough things happen. God Bless you for the work you do. My prayers are with you , the mother and especially the child. If you need someone to make calls or anything I can do from here please let me know. Bless you

Kathy