On being forged into a warrior mom

If I could summarize our journey from Hell to HOPEISM, it would be in my faith, which I call HOPEISM. It has been my weapon of choice to get me through each battle I have had to fight in my mission to win our war called life with autism and seizures. Vaccine injury to be more specific. It would also be in committing to heart, soul, & mind the words and motto's from Forged, NDCQ, the Lone Survivor, and Levi Lusko in his book, "Through the Eyes of a Lion." I will be forever grateful to the inspiration, encouragement, and mental fortitude found through all of them collectively. Because of that, I am not allowing this tragedy of vaccine injury that has come into our lives to be an obstacle to being used by God. I am instead turning it into an opportunity to be used like never before!

This blog is dedicated to Brandon. His life has been forged by difficulty, obstacles, & all too often because of seizures - pain, blood, broken teeth, & broken bones. Yet through all that he has shown such fortitude. The bravery, strength, & resilience of a true warrior. He taught me that having strength through adversity means that even if you lose every battle, like the Lone Survivor, you never quit fighting until you win the war. That in the words of "NDCQ," you keep "dreaming," keep "daring," & keep "doing." As Team Guppy has yet to be able to escape vaccine injury, we have no choice but to as Levi Lusko writes, "Run toward the Roar." God has indeed given us such incredible power in enduring such impossible pain.

Some days the HOPEISM in that simply takes my breath away.

September 28, 2011

Houston Medical Center: You.Blew.Dat.

It's not often that I use my blog as an "Editorial" sounding board... but today I am. And while typically I don't specifically address the medical community in my blog, today I will.

This is to you.

You, who are physicians, administrators, board members, etc -- of any hospital in the medical center of downtown Houston.  You, who have abandoned a population you have never really thought of of the box long enough to properly serve.  You, who have the finest medical equipment, the sharpest medical minds. You, who have used all that talent and technology to do what for the autism population of Houston?


And what's worse, you have let the only someone who was actually do something, leave to do it somewhere else, to benefit some other epidemic autism population in some other state.


Shame, shame, shame on you for not listening to parents who come to you begging you to help, to listen to them.  Shame on you for seeing the evidence before you but choosing to ignore it in the face of being "politically correct" or possibly losing pharmaceutical funding or getting "spanked" by the AAdonothingfor autismP.  Shame on you for putting your need to stay stuffed in your outdated comfortable box, before the needs of children you are doing harm to because of your lack of willingness to think outside that box.

I'm talking to you Texas Children's Hospital, where for a decade I brought my autistic son who had severe, chronic diarrhea, looked like he was a malnourished child from a concentration camp, and you did nothing but say "it's autism".   Only one GI doctor in all those years dared do an Endoscopy, and when the biopsy results showed inflammation, it was written off as "nothing".  No treatment.  But when we finally got tired of hearing "nothing" yet seeing something very chronic and wrong in our son's leaky gut - we went to a specialist who knew about GI disease in children with autism - and he properly performed an Endoscopy and Colonoscopy, where very real medical diseases were found, and treated our son.  Where in over a decade we got no treatment from a medical center thirty minutes from our home, we received treatment from a specialist who lives in New York.  Within two years of that proper treatment our son gained weight, stopped having chronic diarrhea, and was happy, healthy, nourished.  Finally to keep from not having to travel to see that specialist, one brave GI doctor would at least consult with this specialist.  But I'm sure if word of that gets out, that person will be run off too.  We wouldn't want to get caught properly diagnosing or treating bowel disease in children with autism.  People might think we support Andrew Wakefield.  The champion of uncovering GI Disease in Autism so it could be treated!

I'm talking to you in the Blue Bird Clinic for Child Neurology who seem to think the only treatment advice to give a parent of a child with autism and relentless seizures, is more medicine.  Not once has anyone in that Blue Bird Clinic come to me with any latest research on autism and seizures.  On kids with autism who have underlying viral issues that could lead to seizures.  Not once, not with any neurologist have they been proactive.  I have sent them research abstracts, I have begged them to do scans, do metabolic tests.  Only one Neurologist in all those years actually knew about autism and some of the things, tests, that could be explored to help our son.  And what a surprise that he quickly left and went back East where he came from. Leaving children and their parents abandoned, yet again.

And I'm talking to you in the Autism Clinic where Dr. Richard Frye worked.

Let's talk about what a stunning blow to the autism community his departure is and will be for a long while. Well, if I could come up with something worse than stunning blow that is.  Devastated, Crushed, Abandoned. Those are words that somewhat describe our loss.  Dr. Frye was the best hope a parent of a child with autism had.  He attended autism conferences, he studied the abstracts from autism researchers.  He understood that behaviors, GI issues, seizures, anything -- is SOMETHING, and not "just autism" where the only treatment is drug after drug after drug.   He understood the biological complexities of autism.  He understood there was a cause of behaviors. He understood how many body systems needed to be addressed with autism.  He TREATED autism. He didn't just drug it.  Whoever's brilliant idea it was to allow him to leave so he could start in another state, in another Children's Hospital, what OUR Children's Hospitals need, is beyond insanity.
Whoever didn't beg him to stay so he could do what he knew needed to be done here, is too stupid about autism to know how stupid they were in not begging him to stay here and start that multi-disciplinary clinic here.

Here, in Houston.  In EACH Medical Center we have.  HOUSTON needs a multi-disciplinary autism treatment center.

I don't care how many degrees you have or how many fancy initials trail after your name, if you are part of the autism center where Dr. Frye worked and allowed him to leave, you are an idiot, and you are responsible for the abandonment of all the children that man has helped.  Would have helped.

Dr. Frye is the only physician in this town who has truly diagnosed and performed tests to help determine my son's exact issues, what is causing his behaviors, his seizures.

He has given so many, so much hope.

Where we had one person in that medical center to go to, we now have no one.

To understand this crisis called autism, this epidemic of autism that goes untreated with each tick of the clock, is to know that you need to get the hell out of your comfort zone and listen to the parents about what they need.  You must listen to the doctors who take the time to research autism.  And you must allow them to do what needs to be done!

Not cower or cringe at where the research leads.  At how "unconventional" the treatment must seem.  Autism is unconventional.  Autism is new, the treatments for it not learned in medical school or outlined in any medical text book.

It will take forward thinking physicians who are dedicated and determined to think independently of the Pharma-industry and the AAP's closed-mindedness. It will take forward thinking physicians to attend the medical conferences on autism.  It will take of all physicians the willingness to read the independent research and come to their own independent conclusions.

And until you, the Houston Medical Center, "Get Dat", you will over and over, "Blow Dat" in treating children with autism.  Oh, you'll get better and better at being drug-pushers, but make no mistake, that's not treating a child with autism.  That's simply another form of abandoning a child with autism.

Houston, we have an autism epidemic problem. And you let our best chance of a solution, of help, of effective treatment,  move to Arkansas.

You.Blew.Dat --- big time.

And now the abandoned children who have autism must pay that price.

It's a good thing I have family in Arkansas....

Michelle M. Guppy

(Parents reading this, if your child was a patient of Dr. Frye's, please contact me by e-mail!!!!)

1 comment:

Unknown said...

I have about 11 year old son with Autism. He sees Dr. Frye at ACH and I feel the same way. After all this time and all the doctors we stumbled into a research study of Dr. Frye's. First doctor doing anything to help our son ever. So glad you have family here so you can continue to see him. God bless Dr. Frye for the work he is doing!