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.

Wednesday, February 22, 2012

The case of Landon Weber,was it Mito?-more questions then answers.

I doubt there are many Mito parents out there that haven't heard about CPS involvement in children with Mito.

A blog I read a few days ago from a few years ago commented that at the time(2009?)up 1/3 of children with Mitochondrial Disease had been reported to CPS.

In the last 5 years Texas CPS has developed a bad reputation for hurrying to terminate parental rights, ignoring the courts, ignoring their own reunification plans and more- Do you remember the big polygamy ranch bust? They spent MILLIONS tearing children from families based on a single phone call- after months and months they were unable to prove any abuse in nearly all of the cases and the children were given back, but CPS was planning to monitor them closely. Some of this is very concerning to me. From a pure constitutional standpoint, it is chipping away at parental rights. The secrecy and shame involved with CPS that is not healthy for the children or families- it breds more dysfunction. The foster care system is dysfunctional and statistics show some insane percent like 70(digging through my cobweb mind for that, will have to fact check)end up not attending college, depending on the government, and often become criminals.

Last night I read article after article about the terror and outrage many in Texas feel toward CPS. The sheer number of blogs,news articles , parent advocates,associations all talking about the aggressive and often harmful actions of CPS really took my breath away. I was terribly disheartened. CPS should be a terrific support system that help our Texas families become stronger. That help families be better families for our children.

A blogger wrote that Memorial Hermann and Texas Children's have something they called "CPS Squads". Staff who's purpose is only to look for child abuse within all the children served at their hospital- again- I find it disturbing if this is true.

So, in the Mito World CPS has been such a damaging element that the Associations have actually held webinars to help parents understand why they are being labeled and how to avoid it.

When we first found out that Abby had a Depletion the first thing I did was google. I remember one of the first Mito Articles I found in Houston was the Landon Webber case. He saw our only local Mito Specialist. Many invasive treatments were ordered and it appeared Landon was a very sick little one. Texas Children's supposedly reported the Mom and CPS quickly blocked her access. I guess when he still wasn't getting better they blocked access to the grandparent's too. From all accounts, it doesn't sound like CPS worked to reunify the family or had any intention.

I have no idea if the family was only doing what the Dr said, or if they were truly trying to help their child, or if they were abusing him- unfortunately that was left to CPS and courts to figure out.

Here is the first newspaper story from 2010-CPS Does About Face, Accuses Parents Of Abuse
Updated: Tuesday, 30 Mar 2010, 10:24 PM CDT
Published : Tuesday, 30 Mar 2010, 10:24 PM CDT

Investigative Reporter
HOUSTON - Landon Weber, 4, is one of two little boys that FOX 26 Investigates presented that have spent alot of time in hospitals. The mothers of both little boys were under investigation by Childrens Protective Services for medical child abuse.

"That happens when for one reason or another the medical system is used to perpetrate physical abuse on the child," said Valerie Brock, an assistant County Attorney representing CPS.

While both cases are ongoing, FOX 26 has a dramatic development when it comes to little Landon.
His mother, as well as some doctors, say Landon has a rare disorder called Mitochondrial disease. Some studies claim the symptoms of that disease can cause false allegations of medical child abuse to be lodged against parents.

Two months ago this is what CPS had to say about Landon's mother: "She's having to care for a child who has a lot of medical needs. he's medically fragile the family just needs training," CPS's Estella Oguin told FOX 26 Investigates.

But now CPS believes the exact opposite -- that Landon Weber is the victim of medical child abuse.

"I think we all were a little surprised," said Brock.

CPS had an independent medical evaluation done on Landon. Just days ago, that doctor testified in court, Landon has no medical condition whatsoever. His problems are because of his mother.

"I think that given the findings that we have that the parents have been involved in some medical child abuse," said Brock.

"I'm horrified," said Landon's mother Jennifer Weber.

The court testimony accusing Landon's parents and even possibly his grandparents of causing his medical problems came as a shock to the Webers.

"It's about the worst thing you could have to do as a parent," that's how Landon's father James Weber described listening to the court testimony.

Landon has feeding and ostomy bags attached to his body.

"His digestive system has been described as dysfunctional," Brock said.

The doctor hired by CPS testified those bags had an unknown substance in them that could cause infections.

"They were not able to find out exactly what was in the bags," Brock said. "Still it was kind of a suspicious and concerning circumstance."

The judge granted CPS's request that Landon's parents and even his grandparents have absolutely no contact with him not even supervised visits.

"It's crazy, this is not justice", Charles Weber, Landon's grandfather said.

Charles Weber said cops ordered his wife out of Landon's hospital room.

"About 5 minutes after the court hearing a police officer escorts her out of the room and takes her out of the building," the distraught grandfather said. "that's ridiculous."

"The frustrating thing is CPS isn't doing it's job," the Weber's attorney Chris Branson said.
Branson accuses CPS of ignoring doctors who say Landon is really sick.

"So they not only want to take the child away from the parents and grandparents they appear to want to put the parents in jail as well," Branson said.

CPS's next move, terminating the Weber's parental rights.

"I'm extremely concerned especially since we have'nt done anything to harm him," Landon's father said.

"It's a terrible thing that's happening and it needs to be stopped," Landon's mother said.

While CPS insists there is nothing physically wrong with Landon, his parents say they will do what they've been doing for 6 months. They will fight.

Here is an article talking about how his Mito Dr. and her nurse actually went with Landon's family for make a wish-Texas CPS Kidnaps Disabled Child, Denies Medical Treatment – Landon Weber
Comparte tus ideas en el FORO ENARM
March 30, 2010 Fox26 Houston. www.myfoxhouston.com More information on little Landon . — Make-A-Wish provides trip for Landon Weber. It’s been rare for 3-year-old Landon Weber to leave Children’s Memorial Hermann Hospital during the last six months. Landon, who has mitochondrial disease, left Jan. 17 on the trip through the Make-A-Wish Foundation, the national, nonprofit organization that grants wishes to children with life-threatening diseases. Landon is traveling with his mom Jennifer, dad James, and brothers Braden and Tyler, 5 and 9, along with his physician, mitochondrial disease specialist Dr. Mary Kay Koenig, and Children’s Memorial Hermann Hospital nurse LaKeesha Minor. The trip is an important chance for the Weber family to be together. They moved from St. Louis to Katy last summer so Landon could be treated by Koenig, an assistant professor of pediatric neurology at The University of Texas Medical School at Houston and director of The University of Texas Neurometabolic & Mitochondrial Clinic. Koenig, who also is a pediatric neurologist at Children’s Memorial Hermann Hospital, is one of only a handful of physicians across the United States who specialize in mitochondrial disease. There is no cure.. . . More on link. www.chron.com Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body …

And finally the latest on the case-eff McShan / KHOU 11 News
Posted on February 13, 2012 at 11:43 PM
Updated Tuesday, Feb 14 at 11:32 AM
HOUSTON – A 7-year-old boy whose parents are accused of medical abuse was placed with a new family Monday in a Houston courtroom.
From the moment Landon Weber was born, his mother said he was very sick. At the age of two, Landon was on oxygen and had to be fed through a tube. He was diagnosed with a rare lung disease.
For years, Landon’s mother and father took him from doctor to doctor, seeking treatment for a serious illness. The Make a Wish Foundation, thinking he was dying, even sent him to Disney World.
Landon was constantly in and out of hospitals in three different states. But now, investigators say the child was never really sick.
Houston doctors began closely looking at Landon’s medical history and comparing notes. That’s when they noticed there were a lot of inconsistencies. It appeared the parents were making up his illnesses to look like heroes. It’s known as Munchausen by proxy.
“You know Munchausen isn’t formally defined. We worked with it as a medical child-abuse case,” said Valerie Brock. She was the court’s chief prosecutor when the investigation began.
“He had unnecessary surgeries, countless small things like being stuck with a needle,” she said.
Judge John Phillips appointed a group of experts to find the truth.
The Webers, who are still under investigation, had their parental rights taken away, and on Monday, Landon -- represented by ad-litem attorney Michael Craig -- was given a new mom and dad.

Did you notice? First he had Mito, then the CPS Drs. said nothing at all was wrong with him, and the end that he had lung disease? The last story did not even sound like they were talking about the same family.

Now if this was just one case in the Mito World, we would feel bad and move on, but it is one of many. As a parent who is struggling to just accept Mito is the diagnosis for her daughter(proven by genetics via biopsy)- these frequent stories of Drs,CPS feeling a Mito diagnosis is a symptom of abuse leave me fighting the diagnosis even harder. We know something is very wrong with Abby- but how could a disease that is often investigated by CPS, Drs. who order treatments but according to CPS were manipulated, be real? The fact that CPS may have squads sifting through medical records of children at TCH or Memorial Hermann is enough to make anyone with a child think twice. After reading all of this, I understand why Mito Drs. are not giving a Mito diagnosis without a firm Genetic connection- to protect themselves, their patients and the integrity of research.

I have not fact checked anything here- just cut and copied. I wish I knew what the truth was, but I am left wondering.

Can CPS ever be trusted? Can Dr.s be trusted to know when a treatment is needed or not? Can Drs. diagnosis of Mito be trusted? Do the hospitals actually have staff hired to sift through records hunting for any abnormal or rare symptom that just because it is not "standard" might be abuse? Is child abuse higher in the Mito world? Should you move to another state if you have a chronically ill child? Who do you trust?

Here is the link to the blog that talks about CPS at the hospitals. http://www.houstontexascpslawyer.com/blog/2010/08/20/attorney-ad-litem/


Kelly Pledger said...

I was accused of Munchausen by proxy. My child was taken for two years and finally returned. My good friend knows this family. My friend(has a mito son) has been to this hospital and meet with Dr. K. This Story is so sad. I am sick of Munchausen by proxy..it is used to openly..

Anonymous said...

I know Jeff Weber. He is a good man. There is no way he would do ANYTHING to hurt his son. I used to live in Texas. one of the happiest moments in my life was moving. I kept getting frequent ear infections and taken to the doctor. Somoeone called on my mother and had her investigated. how the hell could she give me an ear infection. Stupid.

Jen said...

I know the Weber's. We became friends because I was diagnosed with mitochondrial disease at about the same time as Landon. He had a confirmed mitochondrial disease diagnosis via muscle biopsy. I know that they knew the complexes affected but I'm not sure if they had found the gene yet. They had recently moved from Missouri to Texas seeking better treatment for Landon as the mito doc there had helped in the process of his diagnosis. Jennifer was/is a kind mother who only wanted the best for her child. A "dirty" nurse reported her because she didn't like Jennifer. There were several times that Landon improved with new treatments and different doctors as his different systems became affected by the disease while under the care of his parents. Jennifer feared that if they lost the CPS case that Landon would eventually die due to lack of adequate care for mito as the CPS docs were denying his diagnosis even though they had muscle biopsy results. I have mito depletion and I have a child that may or may not inherit it from me. That said I will stay very very far away from Texas. The system there is dirty and someone needs to clean it up as children are being ripped from healthy homes only to waste away or die. If I were there and had a child with mito I would immediately pick up and move...probably to Boston as it has the best mito docs, mito care and mito advocacy in the country. The Weber's story breaks my heart every time I hear about it. It is sickening that the CPS community in Texas has a vendetta against sick children.

Anonymous said...

What a heartbreaking story... Anyone know more what's happened with Landon and his real parents? Is there any update more recent than 2013?

Anonymous said...

Kelly Pledger, would you be willing to share your story on https://www.facebook.com/groups/Misdiagnosed.Itsallinyourhead/?
Thank you! Corrie

Randy Kuehn said...

Please don't move to Boston or CPS mass will do the same to you. Visit free justina Pelletier Facebook in Boston children's there is s full on assault on mito kids. Minnesota seems pretty safe...soooo far but we're hunting everywhere. Good luck

Anonymous said...

Are Landon's birth parents still trying to get Landon back, or did they give up after he was adopted by others?

Anonymous said...

does anyone know how Landon is doing now?

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