OK The Old Fashion Way but it will be a few e-mails #1

[Guest guest]

Ann I am so sorry I don't know what the problem is. I will try to send it the old fashion way. It is I think 17 pages long though. I will tell you when I send the last page.

My /Our Mito Road Has Been Long With Many Winding Turns

By Ortiz

Mom to 3 Beautiful Mitochondrial Kids

My Mito journey began long before I even knew it had begun. As a child I had fairly good health, however when I got sick, which wasn't very often, I got very ill. I didn't seem to get the average things that other children got either. I dealt with unexplained illnesses like a rare tumor that starts behind your ear and travels up the side of your face making you appear to be Mongoloid in feature. Then for me, it traveled down my face and disappeared. To this day I have not gotten an answer weather or not this was Mito related or just a strange coincidence. Instead of just getting the Chicken pox, I got the Chicken Pox absolutely everywhere a Chicken Pox might be able to have been gotten. If I got a fever it was always a high one. I struggled to ride on school buses as I had severe motion sickness and the mountain roads my family traveled for summer vacations were pure torture. I still suffer from severe motion sickness. If I drive, I do much better than if my husband drives. His driving makes me violently ill!

Although I was athletic as a young child, I dealt with leg cramps (Charlie Horses, although I have always called them Charlotte Horses, since after all, I am a girl!) at night that would be excruciating.

I was a morbidly over weight kid and suffered the emotional "benefits" that fat kids get to be "blessed" with, like the constant name calling and having the non stop teasing, which played a number on the old self esteem and led to severe bouts of depression as a child and in my early teen years. I took thyroid pills for a period of time, but to no avail. I remained heavy, just as my son is currently having to endure. The worst was having doctors say you are fat just because you eat way too much. Even today, they, doctors really don't understand the connection. My poor son hates to go to the doctor because the first thing out of their mouths is always "you are way to big for your size and age, have you seen a nutritionist?" It is just assumed that I feed him fried foods 24 hours a day and he lives on barrels of ice cream, which couldn't be further from the truth!

I was convinced I was half cow for a good portion of my younger years, as I dealt with reflux for most of my young life, as do my three children suffer from it. I felt like I was a cow regurgitating its cud most of the time, and was told for years by both medical professionals as well as well meaning family members, that I did this because I ate too fast! The good old attitude of, you're a fat person, so you must eat tons of food and eat it as fast as you can so you can eat more! I knew for a fact that that was not the case, but once again because I was "fat" it was the first conclusion that was jumped to.

I was considered to be Hyper Active as a child and was medicated with Ridalin for about a three year period.

When I was 16 years of age, I lost an enormous amount of weight on a crash type diet. I desperately wanted to be a Cheerleader in High School and my parents would not let me try out being as fat as I was, for fear I would further humiliate myself. I lost a little over 80 pounds in about a 3 month period of time, tried out and made the squad! Shortly after that, I began vomiting uncontrollably. At first it was only a few times a day, but then it didn't seem to matter what I ate or drank, it would come up and out! At that time I was a Senior in High school and afraid to tell my mother for fear it would be misunderstood as Anorexia because of the diet I had just been on. My mother figured out there was a true problem the day I passed out at school, although she had been asking me and I had been telling her I was fine. She took me to doctor after doctor who tested me for everything from Anorexia Nervosa to Toxic Shock Syndrome which was really big at the time. We lived in a very rural area. No one could figure out what the problem was. So my parents packed me up and brought me to a doctor in California, we lived in Oregon at the time, who said that the Upper Esophageal Sphincter was not working. I was dangerously thin when I had a Nissan Fundoplication done at the age of 171/2 years old and 89 pounds soaking wet. The surgery seemed to resolve the vomiting, or at least vomiting to where it wasn't coming out of me,.(However we now believe I was suffering from undiagnosed Cyclic vomiting at the time) I had severe respiratory problems post surgery and was considered critical for a while. My sister who is an RN came busting in my room raised my bed up and starting barking orders at me about how I wasn't going to die on her watch. She slapped a pillow over my belly and demanded I start coughing to get up all the junk in my lungs which had caused me to go into pneumonia. I have been told that it was her and her alone that saved my life because she did that. I just know I wouldn't argue with her nursing skills and have been very grateful many times of her knowledge and nursing help when she was available, through out the time of the kids being so sick. I gained back and maintained a healthy weight for the next 12 years.

I was experiencing seizures from the age of about 9 years old, although I didn't know that is what was happening to me. At night I would lay in my bed and I could feel them start. They would move up my body from my feet. I would have a tingling, tightening sensation that would roll up my body. I could hear and was conscious, but could not speak or call out for help nor could I move. It was very frightening! I remember being afraid I was possessed or something, or was the next victim to be taken to that UFO waiting in the sky, and being a silly kid, was afraid to tell my mother what I had been experiencing for fear she would think I was crazy! These episodes continued into my young adulthood, and yes I finally did tell my mother about them. The doctors at that time could find no explainable reason as to why or what they were.

Although during High School and College I would seem to have endless amounts of energy, I would hit brick walls, where for no apparent reason, nothing different in my current schedule really, I would drop. I would run fevers, feel achy and over all have just a feeling of not feeling well. (malaise) for no real reason, no apparent cold or virus that is. Although I saw several different doctors, no doctor could figure out what the problem was, and told me that I was just an over working college student who needed to eat and sleep better and a few vitamins might help. That most of my symptoms were simply Psychological. Although I think there was a point my mother was concerned, my family and friends chalked it off to that as well. It was soooo frustrating and I struggled thinking maybe I was just making it all up, so I would push harder during the crisis times. Which in the end only backfired on me.

I married at the age of 27 and at age 28 I was pregnant with my first "Mito" although we didn't know it at the time that she was Mito, child. During my pregnancy I gained weight like there was no tomorrow. Although I kept a food journal, I endured the endless comments from the O.B. about how I was eating too much and gaining way too much weight. I gained 86 pounds by the time I delivered her at 31 weeks via C-Section. During the pregnancy I had seizures and was placed on Meds (tegretol) to control them. I felt horrible most of the time and suffered from severe morning sickness.

From Birth this child struggled. When she was just 5 hours old a cardiologist came in my room, slapped his card down and said , "I am your child's cardiologist and we are working on your child at this very moment." Bedside manor he did not have. This was the first I had heard that there was a problem with her. In Utero, they had detected what they thought to be a tumor on her head and a missing ear lobe, but in fact it turned out to be a huge Fibroid Tumor I had. The last I had heard the baby went to the nursery and was fine. She was diagnosed with an ASD and a VSD of her heart . We remained in the hospital for 6 days, her in the NICU and I recovering from complications of the C-section, and came home with her without any monitors or anything, an over site on the part of the hospital, a bag full of medicine and a return visit to follow up in a few weeks. She appeared to be in no apparent distress. The next night I woke up to find her blue in her cradle, I did CPR while my husband called the paramedics. This started us down a very long, unreal road.

She would have apnea for no apparent reasons. We came home with an apnea/cardiac monitor that alarmed constantly. She had to be stimulated, jiggled while she slept or she would stop breathing. I was getting no sleep what so ever! She would projectile vomit everything that was put into her. She screamed from Colic from 5:00 in the evening until 9:00 p.m.. We could set our watches by her. When she was 6 months old and after her having yet another apnea requiring paramedics, I collapsed from pure exhaustion and mental stress and spent a week in the hospital. My sister at that time demanded that I be given some at home nursing care help for the baby so I could at least get some sleep. My living room was turned into a neonatal unit with monitors and oxygen tanks everywhere, and a home health care nurse 24 hours a day. Although they were a huge help with the baby's needs, it was stressful having strangers in your home taking care of your child, and my husband struggled with having a male nurse and watching "his" little girl bond to him rather than her daddy. And I do have to say, we had a few nurses where I wondered how on earth they got their nursing licenses, which was very scary and a stress on the household and my marriage. We had some nursing nightmares along the way as well as some very excellent ones that came to help us. We went through a state investigation on one of the nursing agencies we worked with because they apparently had been letting nurses give our child a drug in the narcotic family and were not RN level only LVN. As we found out very illegal. As if we didn't have enough stress dealing with a very ill child, we were caught in the middle of that as well. It was resolved and we changed nursing agencies and took with us to the new nursing agency our only RN Level nurse we had, our night nurse. We were in and out of the hospital numerous times during that 4 years, with apnea, congestive heart failure,tacticardia and bradic cardic episodes, unexplained fevers, lactic acidosis, and aspiration pneumonia's. The doctors were stumped as to what was going on with her.

At 7 months we were sent to see the genetic specialist at the Children's hospital near us. He told us there was a very rare syndrome that she fit the signs for, but we would have to do further tests. So a skin biopsy, urine and blood were taken and sent to Hopkins University Hospital for diagnoses and the 8 week wait began.

Even though I had a home nurse accompany me to our local ER during a severe apneic episode, and paramedics had rolled on her numerous times and told the admitting doctor the story, ( we kept her protocol and list of her meds etc. taped to the back of our front door, the paramedics knew it was there and would come in, scoop her up, grab a protocol sheet, and be on their way to the hospital) at 8 months old, an Intern Doctor decided that it was suspicious that an 8 month old baby would have a file to the extent