hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Parents with Ill Children Be Aware _______________
Mother's Rage Lives On
A 15-Year-Old East Hartford Girl With Lupus Dies, And The State Offers Its Sympathy To The Family, While Defending Its Role In The Wrenching Case
By HILARY WALDMAN | Courant Staff Writer March 15, 2008
from The Hartford Courant
When Kimberly Castro buries her only daughter next week, she'll do so with a clear conscience, but with fury in her heart.
The state, she said, robbed her of precious time with her child, simply because she wanted control over the girl's treatment for lupus.
"I'm angry; I'm enraged right now," said Castro, surrounded by her family in her father's East Hartford home as she made funeral arrangements for her 15-year-old, Chelsey Cruz.
"Even if lupus would kill her, why take her away from me and not let me spend the last days with my child?" Castro said through tears Friday. "They ripped her away from me. I was the best mother to my daughter."
The state Department of Children and Families expressed sympathy for the family but defended its procedures in the case. DCF charged Castro with medical neglect and took custody of Chelsey last August after Castro disagreed with three teams of doctors about how best to treat the girl's lupus. While Castro said the strong medications prescribed by doctors were hurting Chelsey, the doctors said they were her best chance to survive.
When the girl died unexpectedly Tuesday in the emergency room at Connecticut Children's Medical Center in Hartford, she was in the temporary custody of her grandfather. The family was awaiting a ruling from a family court judge about whether the girl could go home.
In a letter to the judge dated Feb. 1, Chelsey, an honors student at Capital Prep Magnet School in Hartford, wrote about the "horrifying side effects " of her medication and said her parents were being "penalized" for supporting her desire to try alternative treatment.
"I have already tried what the doctors consider to be the standard of care for the past five years. I have experienced the horrifying side effects of them and realized that they have not helped me in any way. In fact, I feel I have gotten worse and now require dialysis," Chelsey wrote. "In light of this, I no longer want to use them."
"I would also like to be back with my mom and brothers without any interference from any agency," she wrote.
Although it will not change anything, Castro said she would still like to get a ruling. DCF officials said in a prepared statement Friday that they were still unsure of how the case would end, in light of Chelsey's death.
"Department staff worked diligently to support the family and to ensure that the child's medical needs were met," DCF said. "The same staff sought to have mother engage necessary treatments for the girl that were recommended by doctors from three major hospitals. Our staff feel a great loss from the child's passing and deeply regret the pain experienced by her family."
Although Castro objected to her daughter's recommended treatment almost since the girl was diagnosed with lupus six years ago, the conflict came to a head last summer when Chelsey was hospitalized at Children's Hospital Boston.
Her kidneys had failed, and she was on dialysis. Doctors who previously had treated her at Connecticut Children's Medical Center and Yale- New Haven Children's Hospital said lupus, a disease in which the immune system goes awry and attacks the body's healthy organs, caused the damage.
They thought her best chance would come from two powerful chemotherapy drugs -- Cytoxan and Cellcept -- but Castro felt the medications were destroying Chelsey's kidneys. She fired the Connecticut doctors, who filed complaints against her. Eventually, Castro agreed to seek care in Boston.
There, Dr. William Harmon, director of pediatric nephrology and a renowned expert in kidney transplant for children, recommended that Chelsey continue on Cellcept. In court papers, he said he hoped to bring the lupus under control with the medication, then prepare Chelsey for a kidney transplant.
But Castro said the side effects from the medication were too much. Chelsey suffered with chronic intestinal distress and regular infections. Castro said the medication was doing more harm than good and ordered the doctors to stop.
In August, Harmon called in Massachusetts child welfare authorities, accusing Castro of medical neglect. He had a uniformed guard posted outside of Chelsey's hospital room to prevent Castro's possibly taking her daughter out of the hospital.
In October, when Chelsey was well enough to go home, the case was transferred to the Connecticut Department of Children and Families, and Chelsey was placed in the custody of her grandfather, who agreed to follow the doctor's orders. A hearing was called to reach a final decision. On Feb. 4, the trial wrapped up in Superior Court in Hartford.
Castro last saw her daughter Monday evening, during a supervised visit at Castro's father's house. She said Chelsey had been bothered by vomiting and diarrhea and was taking antibiotics for an infection.
After Castro returned home that evening, Chelsey cellphoned her mother many times during the night, crying because she was so sick.
The next morning, Chelsey's grandfather rushed her to the hospital. By the time Castro arrived, emergency room workers were trying to revive the girl.
Castro never saw her alive again.
"When I got there they were working on her," Castro said. She said she is not sure whether she will pursue further legal action.
"What does it really matter?" said an exhausted Castro Friday. "None of it is going to bring my daughter back."
Castro said doctors at the hospital told her that Chelsey died of heart failure caused by sepsis, an overwhelming infection that can attack the body's organs very quickly. But an autopsy report concluded that she died of kidney failure and lupus, according to the Office of the Chief Medical Examiner.
A funeral for Chelsey Cruz is scheduled for Tuesday at 10 a.m. at the Newkirk and Whitney Funeral Home in East Hartford. At Castro's request, the state Department of Children and Families is footing the bill.
"They owe it to Chelsey to pay for everything because the time she had left, they took away," Castro said. "I told [DCF] that this would happen. I warned them.
"And they never listened."
Castro said she will never believe that her daughter died of lupus or kidney failure. "I'm 100 percent sure that my daughter died of adverse side effects of the drug called Cellcept," Castro said. "Regardless of that, they had no right to force her to take a drug she didn't want."
posted
I swear our whole healthcare system has become a dictatorship. I know all too well what chances a 'commoner' stands against any power struggle with a doctor, just from fighting for Klonopin and antibiotics.
I feel sick reading this. This is horrible. And doctors wonder why malpractice insurance is so high? Because they're dictators who care nothing about humans, only protecting their own wallets.
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
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This is incredibly tragic; but without being a doctor and having firsthand knowledge of this case, it is impossible to tell what was best for this child in terms of medical treatment.
I don't know the answer, and it is terrifying to think our medical decisions for our children can be usurped in such an intrusive manner, yet at the same time there ARE children whose medical needs do need to be protected by outsiders.
There is just no way in this case for us to know if this child died because of outside intervention, or because it was needed sooner in order to save her.
Just trying to add some balance, and ask us all to consider the whole picture. It would be a knee jerk reaction to think our children are all at risk of removal should we be using alternative therapies for them.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Ok, trying not to speak with anger here.
Thank God I am an adult and could state clearly and with authority what medical care I would seek.
I am not familiar with the drug Cellcept, but I am quite familiar with another chemotherapy drug used for auto-immune disorders....methotrexate.
When I was first diagnosed RA, which resulted from lyme disease, the rheumy gave me a pamphlet on methotrexate. I read the pamphlet at home and told my husband, "If I take this drug, I will be dead in 4 yrs".
I was so very sick at the time. I felt MTX would kill me because the lyme would go wild once they suppressed my immune system. That is what chemo drugs do. They suppress the immune system so the immune system stops attacking the body. Problem with this approach is that it also stops the immune system from attacking anything else.
I researched and found other, safer approaches to treating my RA. Approaches that, if successful, could actually cure me. The rheumy angrily agreed to let me try minocycline instead of MTX, but I had to find another doctor to look at other possible causes of RA like Leaky Gut Syndrome, Heavy Metal toxicity, infected teeth, etc. The rheumy would have none of that talk.
Turns out I did have heavy metal toxicity, infected teeth, leaky gut, more bacteria than just lyme including babs, QFever, EBV, Chlamydia Pneumoniae, Mycoplasmas, H. Pylori and Tapeworm.
THANK YOU GOD THAT I DID NOT TAKE METHOTREXATE!!!
I agree with that mother 100%. When oh when did we lose the right to choose how our children are treated medically?
You think Doctors have all the answers? Think again!
BTW, I am doing very well 2 yrs later. A recent gene test confirms that most drugs are poison for me because genetically, I am defective and even missing some genes needed to detox the body.
So, if I had taken methotrexate or longterm doses of antibiotics I would have gotten even more sick and possibly have died from the toxic overload.
Detoxing and change of diet have brought me from a high positive RA to a weak positive. I have come from housebound to fully active because I work with doctors who think outside the box. Some abx have been used but lightly with heavy detoxing to help my body cope.
It is very possible this girl needed the same thing. Who will ever know?
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
She likely had lyme and was immunosuppressed by the drugs until she died. Connecticut is practically the lyme capital of the world.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
What an outrage!! My heart goes out to that poor family.
I am having such a hard time with doctor's and my 68 year old Mom right now. It is a nightmare. So I understand her frustration. My Mom's doctor pretty much admitted to me that they are trying to keep her alive, and if they have to give her twelve pills a day, so be it. What a joke!!! Her quality of life sucks.....But they kept her alive, and that seems to be their only job. No one seems to be coming up with any cures for diseases these days.
When did we just become a bandaid society? Putting a drug in your mouth will not create a side effect, but a direct effect. I am in the same boat as luvs2ride, so I have been through my share of the systems as well. I only pray one day that people can realize how brainwashed they have become.
Of course, I am no medical doctor......So I suppose you cannot take anything I say too seriously. I will stop ranting now.
Posts: 49 | From Grass Valley, CA | Registered: Jan 2007
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
She should be autopsied and test for lyme taking samples from kideys liver brain and see if Bb grows from it and sue the DCF!
How terrible
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Tree you have an excellent idea.
I doubt this grieving mother knows she can have this testing done.
...I wonder if the local Lyme group could or should approach this mother and talk to her about the possibility of Lyme. It's too late, but think of the repercussions if her tissue comes back positive for Lyme.
Do a PCR test on the tissue for Lyme, darkfield microscopy on a tissue stain, and try to culture the tissue.
This child way have been misdiagnosed.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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quote:Originally posted by hshbmom: This child way have been misdiagnosed.
I would bet money on it. How many 15 yr olds do you know with Lupus?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
This is horrible and so very sad and it makes me angry at the same time. I feel for the whole family.
It's also very scary that the medical system can do this to a family. What if my son was diagnosed with Lupus or RA instead of Lyme?
Posts: 6641 | From Michigan | Registered: Jun 2001
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I will stop ranting now.
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