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.

Sunday, September 15, 2013

Day 1 Mito Awareness, It Can Take YEARS for a Diagnosis

Mito Symptoms are so diverse that the Mito Specialists can miss the symptoms.



If you talk to the families of Mito Patients or the Mito Patients themselves, many will reports YEARS of symptoms ignored, missed or dismissed as depression or anxiety or other diseases. The only thing worse then being dismissed by a Dr. that isn't a Mito Specialist, is being dismissed by the one with the training to make the diagnosis. Getting a second opinion is VITAL either to confirm the Mito or to make sure there is No Mitochondrial disease. No one is perfect. The various disease Associations all recommend seeking a second(or third or fourth..) opinion with any disease, Mito is no different.



Listen to your gut. Keep looking for answers. Easier said then done. For a disease of energy, it takes a lot of energy to just find the right Dr. to recognize it.

There is a reason shows like "Medical Mysteries" exist, some diseases are just very difficult to diagnose.


Though our Mito Specialists work very hard to care for a population of patients that seems to be growing at epidemic speed, there are simply not enough of them to provide for all.


Keep Advocating.


Over Abby's first 16 years her list of diagnosis's included:

"Spoiled Baby" Apparently, her Ped thought letting her cry without comfort would encourage better development. Yes, babies do need time to explore, to stretch and roll.. but, when a baby cannot move and is hysterical probably not going to do any good to just let them lay there terrified and alone.. just saying.

"IFSH" Despite the Ped thinking her delays were from being held too much, the first couple Neurologists were grim, to them her symptoms were progressive neuro muscular NOT spoiled baby. I had to find a Neurologist to take Abby to because the Ped would not refer,remember the Ped thought Abby was delayed because I held her too much.

"Undefined Congenital Myopathy".. Between all that spoiling I ruined her with and PT,OT,Speech she got better,slowly but better. Muscle biopsy removed the IFSH and replaced with an undefined congenital myopathy.

"Allergies" Despite being a nice chunky baby, she had horrid food allergies. Again the Ped was wrong. Pediatrician felt she could not have food allergies because she was plump. Also, the same Ped felt food allergies are almost impossible before the age of 1- Of course she was wrong. I listened to my "gut" and took her to an Allergist who found serious allergies to soy,dairy,corn,tomato to list a few.

"Apathetic Youth." We use this term to include all the times we tried to get help for Abby but we were blamed for spoiling her, indulging her, not pushing her, that she was dramatic, depressed, unhappy, anxious, our "bad" parenting.. Well of course she was miserable she was sick, but it was easier to blame being a teen girl for everything including her scoliosis.. really, we were told she would not have scoliosis if we pushed her harder then she would not have weak muscles and thus no scoliosis. Really.

"Bad Parents"- Oops, did I mention this one already? Somehow more often then I care to remember we were blamed for her health issues. We lived in the wrong house, we made her sick by owning a cat, we made her sick by not forcing her to play in the heat more,we made her sick by letting her grade accelerate,I made her sick because my house was too clean, we made her sick by homeschooling when she was sick, we made her weak by not signing her up for gymnastics(Oh we so tried all those things, they dismissed our efforts as we did not try hard enough, there thoughts were, we needed to push her harder)


"Depressed" I cannot tell you how many Drs. either said or implied(sadly some still do) that all that is wrong with Abby is all in her head. Depression is what her problem is.. yep, somehow depression caused the allergies, the fainting, the kyphosis/scoliosis, the fatigue, the frequent illnesses, the kidney damage, the gut shutdown.. Even if they recognize the diagnostics they seem to think a pill for depression will make her not care about being sick, thus make her better. What type of logic is that?


This sounds insane right? But some family will see a Dr tomorrow and get a similar BS lecture. This was 16 years of bad Drs.and good Drs. Don't get me wrong, we did see some great Drs over the years and the great ones are great because they admit even they don't know everything. When you have less then textbook symptoms and a hard to diagnosis disease, sometimes the journey to a diagnosis makes you as sick as the disease itself. You need a Dr. who wants to help you find the right diagnosis and treatment even if they cannot do it themselves.

Keep fighting- no one will fight for you or your child the way that you can.


2 comments:

Laura said...

Oh my, if I could only count the times my husband and I were told we were "bad parents". Even worse than having strangers (doctors) tell you that, is having FAMILY tell you. Autism and mito is just the double whammy! "Your kid is wild because you don't discipline" comments were heard more than once. Well, we did discipline, a lot, but our child just didn't get it because he was autistic. He could not connect a spanking or being sent to his room with his bad behavior. Looking back now, I realize his bad behavior was because he was frustrated at his inability to tell us what he needed.
When we finally got tired of doctors telling us all our kid needed was powerful psychiatric drugs and laxatives ( which we never did!) at the age of 3!, we began to find doctors who recognized what we were dealing with and offered hope. We had to travel hundreds of miles away form one of the largest medical centers in the world to see some of these doctors.

Like many autism and/or mito families, we often struggled alone because what our son had just wasn't VISIBLE. I mean, he wasn't missing any limbs, he was obviously intelligent, he was big for his age, towering above the other toddlers, so what could possibly be causing all these problems other than bad parenting?

My Dad has finally grudgingly accepted that his grandson has had an illness. My Mom lstens, but I often think she thinks it is all made up. She certainly doesn't believe me about the vaccines triggering his mito, because she insists on getting every shot her dr pushes on her. Even my Dad told her she was crazy about getting flu shots after I told him what they contained ( he is a chemist and was horrified at the ingredients).

Yup, kids are sick because of lax parenting. Right......Daily bouts of diarrhea, life threatening asthma attacks, learning disabilities. If only I had not held my child when he cried. NOT!! Sarcasm intended.

Diane said...

:-) DITTO DITTO DITTO!!!

Be it anything difficult to diagnose or treat, from Autism to Mito to other health issues increasingly affecting our children, it is always the parents fault. Then the cure is to drug the "symptom" not look for the cause and eliminate it..

One day friend! Houston is the place I wanna be if I get cancer or heart disease, for everything else? We travel.

Post a Comment

 
Copyright 2009 Abby Mito. Powered by film izle film izle favoriblog blogger themes izle harbilog jigolo