We packed the family up for a neurology appointment for my daughter at Cleveland Clinic this week loaded with luggage, research and hope. We were scheduled for an 8 a.m. sleep-deprived EEG (waking her up at 3 a.m. was an experience I hope to never repeat) and a 10:40 a.m. appointment. Bursting with anticipation and carrying a huge bag full of research study print-outs, we sat down with the neurologist.
“Your daughter does have abnormal EEG results, but she does not have epilepsy.”
I stated that I never argued she had epilepsy. He, in fact, ordered all of her testing. I also pointed out the fact she had already been diagnosed with a Mitochondrial disorder, and this could be a further issue — to which he said, “Yes, possibly, but the EEG could also be someone who had two glasses of wine.”
I’d like to point out two things for the record at this time. One, I have never given either one of my children two glasses of wine. Two, the only thing that saved that “specialist with a Ph.D.” from my fist realigning his nose was the fact I detest the thought of jail food.
I requested a referral to a Mitochondrial Specialist on his own hospital’s staff and was told I could ask my GP for a referral or call the main number myself. Dr. Lachhwani, you will not be receiving any referrals from our family.
I did indeed, like the “never give-up” mother that I am, call the Cleveland Clinic today. The Mitochondrial Specialist has a two-page questionnaire that you fill out, fax to him and pray, once he reviews it, he accepts you as a patient. All prayers are appreciated.
Now I’d like to delve into area a little different from what my column has covered before. You’ve been reading my discussion about Mitochondrial Disorder and perhaps not really understood or thought it’s a rare disease our family just happens to be burdened with. According to popular medical belief, that would be true. However, let me explain how Mitochondrial Disorder occurs. This disorder occurs either when a child is born with a cell mutation or a cell mutation occurs spontaneously (which could be due to exposure to toxic chemicals by the mother before birth or an individual later in life — but that’s only theory on my part). Having been born in Mason County and raised in Meigs and Gallia, I know all too well how many toxic chemicals we are all exposed to in this environment.
I would like to take a moment to make it clear I am not a health professional. I am only a woman who has suffered for years with unexplained ailments that were not really understood until my two special needs/autistic children were blood tested by chance. Please look over the following list of symptoms and consult your doctor with any questions. However, I urge you to consult the right doctor. A GP isn’t going to make heads or tails of this. See a Mitochondrial Specialist — even if you have to fill out forms, pray and wait six months.
According to the United Mitochondrial Disease Foundation (www.umdf.org), the following symptoms are possible indicators you should see a doctor regarding a Mitochondrial disorder: developmental delays, dementia, neuro-psychiatric disturbances, migraines, Autistic features, mental retardation, weakness (may be intermittent), absent reflexes, fainting, neuropathic pain, muscle weakness, cramping, gastrointestinal problems, dysmotility, irritable bowel syndrome, hypotonia, muscle pain, failure to gain weight, fatigue, unexplained vomiting, respiratory problems, there are many other symptoms for kidney, heart, liver, ears and eyes, pancreas and other glands that space does not permit me to list here. Please check out their website and consult a qualified medical professional.
Since I’m breaking new ground with this column and discussing many new topics, let me describe the recent experience I laughingly refer to as my “James Bond” iPad experience. After my last column, I received an email from a gentlemen from Gallia County who had read my column and wished to provide my son with an iPad. A series of phone calls were made, and at long last the day arrived that I was to drive to pick-up my son’s iPad. Finally, I told him what had been promised but warned him that we didn’t know what would happen when we arrived and not to be disappointed. I encouraged him to stay home, because I was afraid of his disappointment, and he gets carsick easily, but he was excited about the iPad and really wanted to meet the man who got it for him. We followed some strange directions and arrived at a local, well-known business. I went inside and made contact with the lady I was told to ask for. She asked me a few questions to determine my identity, looked at my driver’s license and then handed me a brand new iPad! I rushed to the car, overwhelmed by emotions and handed it to my son hugging him at the same time. I was about to drive away when the lady came hurrying to my vehicle. Fearing a “string-attached”, I rolled down the window.
“Would you mind if I took a picture of your son with the iPad so [the donor] can see what your little boy looks like?” she asked.
We rushed out of the car and posed for several pictures. A week later, my son is still ecstatic, and I’m still crying with joy. My heart breaks with that gentleman’s generosity.
Thank you for following my column and our family’s adventures. You can see more pictures, links, etc. at my FaceBook page ‘I did not sign up for this special needs parenting’. I accept comments, praise and questions at email@example.com . And you can follow me on Twitter @JhobbsSaunders . I look forward to your feedback!