Jessica Seguin

My name Jessica Seguin, I am exactly 5 feet tall, 114 pounds, 30 years old and don't look a day over 19. I am from a small town in Northern Ontario, Canada, called Sturgeon Falls, population 6,500 and my story begins back when I was in the 6th grade. The summer prior to entering the 6th grade, I began having very bad headaches. I saw my GP who sent me for tests (EEG, x-rays, blood tests), but nothing could be found. My grandmother had it in her mind that my long hair was causing my headaches and that I should get it cut. This did not work. My brother was into competitive freestyle skiing at the time and my parents had purchased a trampoline for him to practice his flips on. I enjoyed jumping up and down and doing flips, but this would give me even worse headaches. So, we thought the trampoline may have been causing my headaches. That was not the case. I entered grade six, and went from taking Aspirin to Dristan tablets, Tylenol to 222's. I was the only kid in my class who took four 222 tablets just to get through the day. I can remember resting my head down on my desk in tears practically every day and my teacher telling me to go home. But I never did as I did not want to fall behind in my studies. The years passed, and everyone around me grew and developed, and there I was, still a small skinny little thing, and my headaches continued.

In 1982, I entered the 9th grade, and this was probably the hardest thing I had to do. I was 4 feet 9 inches tall, weighed 72 pounds and still looked like a 12 year old child when all the teenagers around me were tall, overly developed with bad acne and strange voices. I would walk the halls clutching my books across my chest with my shoulders pulled up high to my neck and my head down. You could spot me a mile away. I was teased and talked about, felt sorry for, you name it. But I survived all this and my headaches. I saw my GP that year for a check up and he couldn't believe that Ihadn't grown, nor developed and that I was still getting bad headaches. So, he referred me to a pediatrician further up north in a town called Sudbury. This doctor admitted me to the hospital for one week, ran every test imaginable; EEG, CT scans, x-rays and blood tests (MRI scans were not invented at this time). After the week was over, he sat my mother down and told her that I was simply a spoiled brat; I was imagining all of my headaches and for her not to let me stay home from school, ever! Well, my mother was so upset that she actually felt like standing up and hitting him, but being the good Catholic Saint she is, she just let what he told her roll off her back. So, I returned home and went on living as best I could.

During this time I saw a chiropractor who snapped my neck this way and that way, and placed me on a protein diet to help me gain weight. Every night I had to count my calories, I think I had to taken something like 2800-3000 calories a day, and if I hadn't taken in enough, I literally had to stand there with my mother by my side and stuff myself until I had reached the correct amount of calories. This was very difficult for me as I never had any kind of appetite and I literally hated the taste of food. I then saw a dentist, who was the son-in-law of a friend of the family. He was new in town with all kinds of ideas and new techniques. He figured my overbite was the cause of my headaches. So 5 retainers later, the headaches were still there. We sort of gave up after a while and just went on living until the summer before entering the 11th grade. I had developed Mononucleosis, which I thought was the mumps at the time, so I returned to see my GP. He took one look at me and couldn'tbelieve his eyes. I was still the short, skinny, underdeveloped little kid he had seen three years prior. When he asked if I was still getting my headaches, he wrote something down on a piece of paper, put it in a sealed envelope and addressed it to the pediatrician in Sudbury, the one who had told me I was a spoiled brat. HQ asked me to return to see him, and against my wishes, I did. Once in the pediatrician's office, he opened the sealed envelope, read the letter, took one look at me, and told my mother and I that he was sending me to Toronto to see a specialist.

On November 20, 1984, my father, mother and I got into the car and drove 4 hours to Toronto. We saw the specialist, who was a pediatrician. He examined me and made one phone call to the Hospital for Sick Children, and within one hour, I was admitted. This doctor suspected all along that I had a tumor (craniopharyngioma) but wasn'tpositive. So, he literally lied to get me into the hospital. I had test after test after test and saw about 30 different doctors, residents, med. students. By this time, I had no pride left. Everyone in that hospital had seen me without my clothes on, which was very upsetting for me. Remember, I was 16 and still had the body of a child! A few days later, a neurosurgeon came in, and sat us down. He simply told us that I had a craniopharyngioma which was the cause of my headaches. The tumor was stopping me from growing and developing, and was pressing against my optic nerve. He told us that this tumor had to come out ASAP or I would lose my sight and possibly die. My parents fell apart and I just sat there in shock! Icouldn't believe it. The tumor had been too small years prior to this, and that was why no one ever detected it.

So on November 27, 1984, I was brought to the operating room and had the tumor removed (by craniotomy) which was benign, thank God! But, since the tumor was so very large, it was totally encompassing my pituitary gland which also had to be removed. NOW I live without a pituitary gland. And that is another story all together.

A few days after my surgery, I began throwing up uncontrollably. They rushed me to Radiology to get another scan done. There they saw I had developed a blood clot. Therefore, I was to lie in my bed very still, so the clot would not travel. I had to urinate in a bed pan, amongst other things, It just seemed as though things were not going very well for me at all. But, finally, the clot disappeared and I felt much better.

Right after my surgery, I had to urinate and measure my input and output, the doctors running in and out of my room telling me that I had to urinate more and drink this amount of water, don't drink any water. Finally, they got my levels leveled off  with the DDAVP. I take this twice a day by injection, as the nasal form stopped working in my second year of college. I was placed on Cortisone, Eltroxin, as well as the DDAVP. These were to be my hormone replacements. I was in hospital for three weeks, and after the last of my staples were removed, I could return home. I had no hair, a scabby scar running from ear to ear, and my face was the size of a water melon. A mother (whose child was in a coma) told me as I was leaving the hospital, take one day at a time," and that is exactly what I did.

I returned home with all of these medications, a measuring cup for my urine and no hair. It took me a while to get my input and output of fluids down to a normal level with the DDAVP, A week or so after my return home, I began throwing up uncontrollably. My mother, panicking, called my endocrinologist who told her to double my steroids.  So she did, but itdidn't work. I continued throwing up and she doubled them again and told me if I didn't stop  I would have to return to the hospital. Well, I think that scared me enough that I stopped throwing up. As the weeks went by I began feeling better. Christmas came and went and then I had to return to school with no hair. I wore hats for six months and no longer was teased for my size, but instead because I was bald and had to wear a hat. Some kids were really cruel. Anyway, my mother and I returned to Sick Children's Hospital every three months on the bus for check ups. I was supposed to take human growth hormone and was all ready to do so when the donors found out that there was a problem with it. Three patients in the United States who had been treated with this growth hormone had subsequently developed neurological symptoms and signs consistent with Creutzfeldt-Jakob disease prior to their death. There we were, back at square one. I had to wait for them to create a synthetic growth hormone. Months and months passed, and I was getting more and more depressed every day. My father was so desperate that he thought of bringing me to the States in order for me to get this growth hormone sooner. But, we decided to wait for them to receive it in Canada. Finally, I was called back to the hospital for my first treatment with this new synthetic growth hormone.

They taught me how to give the injections (3 times a week intramuscularly), and seeing that this was more or less experimental, I had to sign a bunch of legal papers, as did my parents and the doctors, and a witness also. We then returned home with this drug in order for me to grow. Well, when it came time for my first injection, I froze and couldn't do it. So, we went to the hospital and the nurses there gave me my injection for a while. They then decided they were no longer going give me my injections. Their reasoning was that they weren't really sure what was in the needle that they were giving me. It could have been drugs, as far as they knew. So, my dear mother taught herself how to give injections. One night, after I had gone to bed, she pulled her pants down, got the needle and jabbed her leg over and over and over again until she got it down perfectly. The next day she told me that she would be giving me my injections. I panicked, but it turned out that she was pretty good. I took this growth hormone for over a year, I grew three inches, up to 5 feet and then I did not grow after that. So, I decided I had had enough and withdrew myself from this program.  So, I went on at 5 feettall and felt as though I was 6 feet.

Now it was time to place me on Premarin and Provera (estrogen and progesterone) and I finally got my period and breasts like every other normal 18 year old. I was finally normal like all my friends. I was ecstatic! I went on to college, graduated and got a job as a medical office assistant at the Ottawa General Hospital. I got married in 1994 and moved to North Vancouver where I lived with my husband and our two dogs. November 27, 1997 was my 13 year anniversary since my surgery and I am living my life as best I can. I deal with stress and every day life with all I have but I do get bad mood swings, weight gain, and become tired very easily.

I had been looking for a support group for people with my condition, but, I was never able to find one. I was so happy to findPNA. It was as though I could finally see the light at the end of the tunnel and was very happy to know that I wasn't the only one out there with this complicated, pain-in-the-butt condition. There is hope for me yet! I attended a conference in Atlanta in March of 1997 and met a lot of interesting people. Unfortunately, I have yet to meet someone with the exact condition I have. I would love to hear from anyone out there who has been through what I have.

Unfortunately, my marriage didn't work out. Therefore, my husband and I have gone our separate ways which was definitely for the best. I have returned to Ottawa with my dogs to carry on with my new life and am really looking forward to my future. I have recently started a six month Growth Hormone Trial which is underway at the Ottawa General Hospital. My physician, her nurse, and I are quite interested and anxious to find out the outcome. Believe it or not, I have started taking tae kwon do lessons which is something I could not have done without being on the growth hormone.