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| Ted |
I have known Ted for most of his life. As a young boy, he was adorable with blond hair and beautiful blue eyes. He was always the quiet one between him and his full of life and mischievous brother, but something would happen to Ted when he would get in front of a microphone. He would sing, recite his own poetry or tell wonderful stories. Ted would light up a room with his sharp wit and charming personality. Ted’s mom, one of my dearest and closest friends raised the two boys on her own. I always admired how she held down enough jobs to just make ends meet but always had time to help someone else in need.
In the last couple of years, Ted struggled to walk. His mom took him for physical therapy and had him diagnosed with tight hamstring muscles. He had a heart arrhythmia and spent the day as an outpatient receiving, at just 18 years old, a heart ablation. His eyes were troublesome and his visited two ophthalmologists who sent him for eye exercises. Then his speech started slurring and his mom realized that there were too many things happening. She saw two different neurologists who would send him for a battery of tests.
I sat with them as a doctor spoke about doing spinal and other invasive procedures. He wanted to “rule out” certain diseases – but why, I wondered, can’t someone just figure out what this is?
Ted’s mom, though exhausted from working full time and visiting doctor after doctor and bringing Ted for eye therapy, physical therapy and taking him out nightly for walks because of his fear that his legs would give out, wouldn’t give up. The final doctor, a neurologist did a blood test, and found that Ted has Mitochondrial Disease which results from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. When they fail, less and less energy is generated within the cell.
Ted’s mom and I talk about why it took so long for Ted to be diagnosed. Was he being “mis” diagnosed? Was there a breakdown in communication? Why couldn’t the ophthalmologist find the problem or the first or second neurologist? There is so little that can be done for Ted. He works hard to keep walking and is determined to stay out of a wheelchair. He is a brave young man who is fighting with every breath he takes. Ted wants to be independent but accepts help, and even seems to, at times, enjoy the attention. It makes it easy to love him. He allows us to love him. He has taken up a piece of my heart with every deep conversation about his future he allows me to look deeper into his soul as well as my own.
I keep thinking that it was his mom who pursued a diagnosis. He would have been dropped if not for the work she did to keep records together and compare notes. Ted’s pediatrician didn’t do that. It is up to us, the patient and the patient’s family or even friends to step up and help or we would all get lost in the system that would gobble us up and spit us out like another number we pull out of the machine at the deli counter.
Ted is teaching me about love and about life and about what is really important. The people who come through our lives each day all carry baggage but I find my mind constantly distracted by Ted’s future and what tomorrow will bring.
Meet Ted Here
3 comments:
ilene what you wrote me very touching
Ilene, this is the 1st time i've read your blog. How ironic that you wrote about Ted. I am a ped nurse specializing in children w/ special health care needs. I focus on helping families become involved in decisions at all levels & teaching residents & other providers.
Ted;s story so touched me because of my son who was undiagnosed for 6 1/2 yrs. eventually my 4 kids & I were diagnosed w/ mitochondrial cytopathy. My 2 boys passed away at age "almost 8" & 15. Their prognosis was never good but their deaths were at least partly due to mistakes smart people made becase they were so certain that they did not find it necessary to listen. Therein lies the problem that I would guess contributed (largely) to Ted and his mom's long and often lonely journey to diagnosis.
It took my 4th child's birth and obvious signs of illness to convince Zach's care team (at the time)to really look for answers. Prior to that, i was largely on my own. doctors who had been so certain something was wrong when Z was an infant became equally certain that he was fine by the time he was 2. They assured me that he would grow out of whatever he had. I was told Nothing was that wrong or we would have found it. Mito disease was even raised as a possibility when Z was two. It was quickly discarded because of certainty that someone who could talk and walk could not have it. 6 1/2 yrs later we learned diferently.
The delayed diagnosis can be partly attributed to scientific and medical knowledge lags yet lack of humiliy, from my perspective, was the biggest roadblock. I imagine some of Ted's MDs, like my son's early doctors, formed a conclusion without adequate evidence rather than clearly stating, "we dont know." Inappropriate certainty shuts down imagination, thinking & discussion. Everything gets interpretted within the context of assumptions presented as truth. Any thing Ted or his mom said that did not fit into the clinician's premature conclusion was likely unheard & dismissed. lack of humility and intellectual honesty is the primary reason mtio disease diagnosis is delayed. Like you I wonder what would happen if parents didnt advocate and pursue answers.
I wrote an "article" for the United Mitochondrial Disease Foundation's newsletter - published about 18 mos ago. It's about the diagnostic challenges for individuals with a mito disease. I said its multifactorial but highlighted the dangers of certainty and its impact on diagnosis, care and treatment. I'd be happy to send it to you if you'd like (or to Ted's family).
Ted's mom has my respect for never giving up. I just hope stories like theirs and ours become rare. For now the only answers I have are: 1) teach, support,& encourage family members + young patients to advocate; 2)expose residents to the family perspective; 3) discuss with all providers ways to foster the quest for answers while not allowing it to take over the family and 4)engage + teach young physicians how to support and advocate for families of undiagnosed children/ youngadults.
So ironic to read your entry...thank you + I will definitely read again. I dont have a blog currently (its my 2011 resolution) but my sons' website is www.caringbridge.org/wi/zachsam
The health care system has a long way to go in supporting families with undiagnosed kids. Thanks for pointing that out through such a poignant yet ultimately inspirational story of a mom who would not give up.
ted seems to be a great boy, what he needs is just learn more about life and how to become stronger...
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