WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Thursday, January 19, 2012

WANTED: Mitochondrial Disease Drs. in Houston!!!

We need Mito Drs- we need volunteers and families willing to WORK TOGETHER to help Mito Patients.

There are thousands of specialists in this city and so few have a clue about what is even safe for the IV for hydrating a Mito Patient - Memorial Hermann is the name most families recommend for ER care- the stories I have heard from parents about bad experiences not because they went to a bad Dr. or a bad hospital but simply because the 4th largest city, Houston has NO CLUE about how to care for a Mito patient-

Again and again I am told to "hush" and not express my displeasure at the fact that Houston SUCKS for Mitochondrial care. Fact is, it does- The Houston Med Center may be a center of Excellence for a lot of diseases, but hear me loud and clear Houston- If you suspect that your child may have mitochondrial disease, go somewhere else for care, or be prepared to go through a lot of new patient visits until you find a Doctor that can handle you or your child- it is slim pickings out there!

It is absolutely mind blowing and galling that we are 4th biggest city in the United States and if you visit either the UMDF or MitoAction website they only have 1 name listed- and that 1 name is in Pediatrics and for many of us it was not a good fit for a lot of reasons. So, we have had to travel hundreds and sometimes thousands of miles to get the care we need. We have no choice. Our suburban Drs. have no idea what Mito is and can only ask if we contacted the MDA for recommendations- We actually went to the MDA clinic years and years ago, and it was not a helpful experience, maybe they have changed? Our Peds and family Drs. are struggling to find care for us, and they don't know where to send us! The Houston Mito Community deserves better! What are those medical schools teaching? Can they not spare a few minutes to teach our Drs. that our children and adults are dying of a disease and are left isolated and alienated from care and also have ZERO support?

I am not impressed thus far compared to the other places we have lived. I have felt tremendous pressure to just appreciate the tiny bit of available care and quit complaining- I will NOT quit vocalizing my displeasure until I know that no other child goes as many years as Abby went, that every parent is given EQUAL care and EQUAL support- I will quit when people quit trying to put one face on Mito and quit trying to define "the Mito Landscape". There is no landscape, there is no support and we have less then a handful of folks that advertise that they care for our population.

Do you know that I actually talked with an adult Mito patient who worked as a Nurse, and she would not tell me who she saw? Who had diagnosed her, or where I could possibly take our child- and this was a Nurse with this hideous disease! What is wrong with you people!?!?!?

After 16 years I have learned more about Mito from being online and talking to a few Moms and taking one trip to Atlanta to see a specialist there than I learned in the zillion appointments here in Houston. Shame Shame Houston Specialist!

Are there specialists out there that are familiar with Mito and want to help all of our patients? If you are out there, and truly feel the calling to care for Mito Patients- write me- I will go out of my way to send you more patients then you could ever dream of, that is if you are willing to even point these families in the right direction. From what I have heard there are a lot of turf wars in the Medical world here in Houston and sometimes the good Drs. don't get the advertising they deserve.

I have read of three cases(I don't network, so if I found that many there must be dozens more!) now of parents who have been investigated by CPS because Texas Children's is or was so far behind on the medical advancements of this century that they did not believe that Mito has more then one presentation(I am just a dumb Mom and can download THOUSANDS of articles online about Mitochondrial disease and the massive research going on everywhere EXCEPT IN HOUSTON!)

Over the past few years I have received emails from parents asking me where to take their children for care, because in HOUSTON with the big medical community that we have, they cannot find a Dr. or a even community of parents to turn to to ask for help! So not only am I angry that our Great Medical Center doesn't give a hoot about Mito and my child, I am also now ticked for the dozens of other parents who have sick kids yet are either terrified to go see a specialist and ask about Mito because someone may call CPS on them or some who simply cannot get the diagnostics or answers.

What is wrong with this picture?

Is there some sort of turf war between the two hospital systems? Is this a social climbing exercise for Drs? Is this a social climbing exercise for parents who care more about being "someone" in their little world than in getting awareness and care out to the children literally dying to get it???

What the hell is wrong with you Houston? Houstonians are better then that. I don't know what the problems is, or when it started but it MUST end.

Do you know, I have had parents fuss me for sharing my various and numerous bad Dr. experiences- they dont want me to bring any bad "press' or publicity, they want me to be a cheerleader - no one is supposed to talk about being upset or dissatisfied at a support meeting or chat online- So tell me this Batman- if we don't vocalize what the problem is, how are we to solve it????? Parents also who live in fear that if they express their dissatisfaction with the care here or a Dr. in particular that the Dr. would sue them? That they fear the Drs. being so petty that they would actually deny or disrupt the care for their children??? Are you serious? Are there really Mito folks out there that see this as social experience? As a "Mito Club"? Do you have be on one side or the other?

Do you also know that I have already heard rumbles that some folks who are involved in the Mito Community are very unhappy that a few parents who are terrified and not getting answers want to get together and help each other? Mind you we are looking for the help that we are not being given by them- support they are NOT willing to give us- do they want us to just move? Or just keep spending our 401K's to travel to other states to get the care we should get here? What is wrong with you people!

The Moms I have spoken with just want care for their children. They just want to chat and feel safe with other families- We aren't looking to make the social pages, we have no interest in what your salary is, we don't care about whether your name is a on a research paper- we want the Mito community to support one another, to help encourage more specialists to care and offer us a choice depending on our needs. Houston is big enough for all of us, and certainly big enough to get better care and support then what we are getting.

As I end this rant, I do want to thank the Drs. we have that do care. The Drs. who listen to us. We do have some good Drs. here in Houston and they are our life lines. Thank you to all the Pediatricians who "see" what we see and try to find our children help, all the family Drs. and internal medicine folks who "see" us and try to find us help. But for anyone else who continues to think more about themselves and trying to use this hideous disease to climb the Houston social ladder or to covet the little bit of care all to themselves- SHAME ON YOU!


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