Samara was born on the 27th May 1993.|
She lives in Victoria with her brother (12yrs) and sister (10yrs).
She is due to commence the ketogenic diet in January 2001.
Samara's story as told by Samantha (her mum)
"Samara had her first seizure when she was just over 3 years old. The doctors told me it was a febrile convulsion, but she didn't have a temperature. It turned out to be a grand mal (tonic clonic). It was an isolated incident...until she turned 5.
She started blanking out, staring off into space. 10 seconds here and there. I didn't take much notice of this however, as I thought she was tuning me out as kids tend to do. One day she kept falling off her bike, falling over for no apparent reason and walking around in circles. She did all this in the space of 6 hours. I couldn't figure out why. When she went to have her immunisations for school entry, she blanked out. The doctor asked me if she had epilepsy as she was having a petit mal (absence).
That was the start of the nightmare that became my life.
Samara was officially diagnosed with epilepsy on the 1st June 1998. She had an EEG and a blood test. She was started on Epilim and I was hopeful. I couldn't figure out, "Why me?"
The Epilim turned my placid, happy child into a monster. She picked fights with her brother and sister who were 10 and 8 at the time. She either wouldn't eat or would eat non-stop. She was almost uncontrollable. She either suffered with nausea, headaches and lethargy (tiredness) or she would be hyperactive and barely sleeping. I took her to a reputable paediatrician who chose to increase the dosage. This increased the side effects. These gradually lessened, but her seizures increased. She was now having at least 2 dozen seziures a day. The paediatrician again chose to increase her dosage. I told him that the medication was affecting her. In 4 months, she had gone from 10 sec absence seizures every couple of days, to every day falling off her bike, trying to take her clothes off, saying strange things and wetting herself while she was having seizures. He basically told me that she was normal and there was nothing wrong with her and that I was a neurotic, overwrought mother, who was making a mountain out of a mole hill. After consultation with my G.P. (who is a gift from above), we managed to get an appointment with a Neurologist. I was so happy thinking that I would finally get somewhere. How wrong I was. The Neurologist was supposed to be the best in Victoria. When we went to the appointment, he looked at Samara and asked about her history etc. I told him about the Epilim. He put Samara on Diamox. For about 4 weeks Samara lived on 1 weetbix, 1/4 sandwich and a salada a day. She wouldn't eat and kept saying she wasn't hungry. She started to lose weight, and was walking around like a zombie. I rang her Neuro. He told me to stop the Diamox and restart the Epilim with a higher dose. Her seizures didn't improve. After more phone calls the Neuro decided to give her a video EEG. In March 99, we sat in hospital for 6hrs. Samara only had six 20sec seizures during that time. The Neuro then decided to add Zarontin to her meds. Her seizures didn't improve. We went back to the paediatrician for a general check up. He told us he couldn't help us and not to make any more appointments. We didn't know what to do! Samara was going to our GP at least 3 times a week trying to get some answers. In September 99, we went back to the Neurologist. Samara was having numerous seizures, and still having all the problems I have mentioned. I also noticed she was having problems with memory, reading words etc. He again increased her meds. At this point she was on 800mg of Epilim and 1500mg of Zarontin per day. Our GP referred us to another paediatrician, who was much more receptive to our problems. He was reluctant to reduce her meds. Samaras problems increased.
One day at school she collapsed. She had an absence seizure that lasted for 25 mins. Her pupils were fixed and dilated, and she was unresponsive. She was rushed to hospital. They couldn't tell me what was wrong. Nearly every day the school was ringing me saying Samara had collapsed or that she was asleep and they couldn't wake her. She would sleep for up to two hours a day even at school. She had a drop attack one day while climbing steps of the slide at our local pool. There were two teachers present and they still couldn't stop her. She needed medical treatment for concussion. She needed stitches after a drop attack while playing in the back yard - she cracked her head on the concrete foot path. We were still seeing the GP a couple of times a week. He decided to do a drug level blood test. Both he and I were shocked her levels were so low, but for some reason, her seizures had lessened number of days. We couldn't figure it out, particularly when she was taking such a large amount. He decided not to reduce her dosage for fear of complications. Samara went from a bright, happy, healthy girl, to a child who suffered major side effects - she dragged herself around, slept all the time and she only ate on a good day. She also started to show signs of developmental regression. She forgot how to write her own name, tie her shoes and write and recognise her ABC's. She couldn't ride her bike - she couldn't remember how to balance properly. Samara knew how to do all these things before she started kinda. It was heartbreaking to watch my daughter slowly deteriorate before my eyes. I was going out of my mind.
On Thu 2nd Dec 99, we saw her Neurologist again . After travelling for 2hrs, we sat in the waiting room for 1hr 15 mins. When we finally got to see him, he looked in her eyes and told her to hold out her arms and wiggle her fingers. I told him about all the problems and he told me not to worry and that she was OK and would get better. We were in his office for 10mins! I couldn't believe the so called experts told me that she was normal.
On Wed 8th Dec 99, Samara vomited (she had been doing this at least once a week for a month). I had a house full of people. I cleaned her up and she vomited. Again I cleaned up and she vomited. She then "passed out". I couldn't rouse her for at least two hours. She woke up, had a drink, then went back to sleep. She seemed OK so I didn't worry. The next day she was tired and didn't eat much. I put it down to the day before.
On Fri 10th Dec 99, I kept Samara home from school just in case. We went shopping with my mum. Samara didn't eat brekky so I gave her a sandwich for lunch. It didn't stay down. She was like a rag doll. I had to put her in the trolley because she was unable to walk. I gave her some water to try and get some fluids into her. They didn't stay in either. I took her to our GP. He took one look at her and rang the ambulance. She was rushed to the Bendigo Base Hospital with severe dehydration. At the hospital she was hooked to a drip. They tried to feed her jelly but it wouldn't stay down. She suffered dramatic weight loss - losing 2.5kgs in 3days. She couldn't keep her meds in, but her seizures lessened. She seemed to improve. By Sunday morning she managed to keep down a bowl of jelly. In the afternoon she dozed on and off. In fact she slept most of the day away. She woke up around 7pm for about an hour, then went back to sleep. She seemed unresponsive but would "come out of it" every now and then.
On Mon 13th Dec 99, Samara slept the whole day. She was awake long enough to have a bath. It was like bathing a new born because she couldn't support herself. She was now throwing up again. The paediatrician told me she had Gastro as it was going around. She didn't have diarrhea! She continued to lose weight.
On Tues 14th Dec 99, I arrived at the hospital to a mad panic. The paediatrician was concerned as she had not improved over night. That day became the worst day of my life. He told me she was slipping in and out of consciousness, and that we were losing her. If we didn't do something immeadiately, she wasn't going to make it! Just what every mother wants to hear. I freaked. Thank goodness for my girl friend. She cried, I cried, even Samaras little friend was crying. Samara was rushed to the Royal Childrens Hospital. Within 3hrs of being there, she had an EEG, X-Ray, blood tests, and urine tests. At one point, they thought she had some sort of encephalitis. The blood tests and urine tests came back. It was the drugs. Samara's pancreas shut down and stopped working. Her liver had started to breakdown and her kidneys stopped functioning. There was a concern she might end up with diabetes. All this was due to the drugs. An MRI showed a shadow on her brain. This was thought to be a growth of some sort but further investigation showed atrophy of Samaras brain. That means her brain started to break down as well. That was why she had developmental problems. The drugs were literally eating away her brain. As I said before, it was the worst day of my life! The drugs were stopped immeadiately. By the third day, she had improved and was starting to eat. She hadn't been able to keep anything down for a week. HER SEIZURES STOPPED!!! Gradually Samara was able to eat more and more. Samara lost a total of 6.5kgs in 2 weeks. She had another EEG. She was also having blood tests every day and urine tests twice a day. She came to dread those ladies with the striped shirts.
On Mon 20th Dec 99, we brought Samara home. No drugs and still no seizures. I was so happy. The "new" Neurologist told me no more drugs unless her seizures started again.
On Xmas day 1999, she had about 20 seizures in about 10 mins. I was devastated. I thought here we go again. We went back to the RCH. She had another EEG which confirmed the seizures. Samara's medical problems improved and so did her developmental problems. She is almost back to normal. She has only just reached her pre-sickness weight. She is still skinny. She didn't gain back her healthy looking body. Samara was started on Lamictal. Due to her previous problems, she was started on a very low dose. At the start, her seizures lessened, but then they started to increase again. Every two weeks we increase her dose by 1/2 a tablet. It works for the first week, but by the 2nd week her seizures are back to normal. We have tried vitamins - everything - nothing worked. We even tried adding a tiny amount of Epilim. That didn't work either. She was up to 100mg per day. Her Neurologist didn't want to increase her dose any more. He suggested the Ketogenic Diet. I'm very confident, but apprehensive. After all our struggles, I can only hope that this will work. She starts in January 2001."
If there is any advice Sam can give to other parents it is this
"Trust your instincts. You know if your child is not acting normal. When something is wrong, if in doubt get another opinion, even if its 2 or 6, until your satisfied. Make people listen to you, especially the medical people. If only someone had listened to me, I wouldn't have had to go through all that I did. Samara probably would have gone on the diet sooner, and would probably be free of seizures and drugs. Once again trust your instincts. You know your child better than any one!"
Epilim first drug used - created numerous side effects and increased seizures
Diamox second drug used - created numerous side effects
Zarontin third drug used - given when Epilim had been restarted - created numerous side effects and increased seizures
Lamictal last drug used - effectiveness fades fortnightly
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