Epilepsy Continues for Son Peter Age 27

Diagnosis: a large abdominal mass Prognosis: being a vegetable!
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Luckily the good experienced doctors got it all wrong.

My name is Sam and I want to share with you my son Peter’s story of epilepsy since 1990. I’ll cut this as short as I can. You will note that in my story the fine medical doctors are far from perfect to say the least. Further, medical schools and the drug companies believe or pretend to believe they have all the right answers. Well, they don’t!

Please do not be bullied and do not be afraid to question every doctor’s statements.

Day one, we called a home visit doctor who checked Peter over and declared that all was well just give him a baby aspirin. Aspirin???

Aspirin can cause Reye’s Syndrome, a deadly disease, that strikes swiftly and can attack any child, teen, or adult. In fact it is now included as a warning on many aspirin containing products, DO NOT GIVE ASPIRIN TO THOSE UNDER 18. We did not give him aspirin, my wife and I knew better. We were stunned at the doctor’s suggestion of using aspirin.

On day 2 Peter still had a mild fever and was now lethargic as he lay on the sofa. I left the office early. My wife Angela and I took 8 year old Peter to his 62 year old pediatrician. It was 4pm on a Friday of a coming long weekend. Traffic in Toronto was at a usual standstill.

As we walked into the doctor’s office Peter was almost half asleep. The doctor examined Peter and upon finishing called me into the other room as my wife helped dress Peter. “Do not tell your wife but your son has a large abdominal tumor. I will call Toronto’s Sick Children’s Hospital to admit him immediately. They will be waiting for you. It doesn’t look good at all.”

After I picked myself off the floor I said, “Doctor how can this be? “Oh these things can happen in short order.” he said. “Are you sure? He may only need to go to the toilet.” I said “No. I can feel a large mass by his bowels.”

“Doctor please get us a Taxi as I’m too shaky to drive. And, I must tell my wife!” Taxis were impossible to get. When we got to the hospital 3 doctors were waiting for us. They all gave us the same gloomy look of no hope, training their eyes on Peter. After some 8 hours we had only the same diagnosis with some hesitation. We heard the ultrasound department head arrived, called back from cottage country just for Peter. Then the great news. Peter had to urinate!!!!! That was the large mass! After urinating a 1 ½ litres of urine he was taken in for a spinal tap and MRI scan.

My wife, my older son and I hugged each other not knowing how to react to all this. Now the bad news. Peter had somehow contracted viral encephalitis.

Fingers started to twitch. A neurologist was called in. She diagnosed possible seizures. Peter was put into isolation with 2 other kids with who know what other illnesses. During a break in all the action at around 10 am of the following day. I went down to the hospital medical library, told them I was a medical student and asked for any articles on viral encephalitis. I got lucky. No questions asked, the attendant gave me a photo copy of a story about a boy about Peter’s age who had an incredibly similar situation. The drug used, was Acyclovir.

I approached the resident doctor in charge and asked if Peter was on Acyclovir. He told me they were considering starting him on it or another new drug. I showed him the article I got at the library. Within an hour he was in to inform me that Peter would be put on this drug as soon as the pharmacy sent it up. It took several hours for the drug and the doctors to administer it. Why the delay? If he had viral encephalitis this was the only drug to give ASAP!!

Had I not shown him the article what would the doctors have done? I wonder. By the 4th day Peter had gone through CT scans, MRI scans, a myriad of spinal taps, EEG’s, blood work, and other tests that always left us drained as we waited for results. Peter seemed to become more and more lethargic as twitching increased dramatically.

On day 5 we were called into a boardroom to meet with various doctors involved in Peter’s case. We were told to prepare for the worse. At best they predicted that there was a high probability that he would never walk, talk, feed himself, or recognize us. In other words they were preparing us for what their prognosis was, a vegetative state, if he even survived at all.

Words of encouragement were few and far between. My wife and I left the room in a complete stupor. When we returned to Peter’s side we sensed that the life force was still strong in Peter’s body. Why were we hanging on to hope? Could these doctors all be wrong? Were we as parents hanging on to impossible hope ? Meanwhile his seizures continued even though he was in a comatose state. Tears welled up in our eyes. How much more could we take of this? I had just had my second radical chest surgery for cancer, and I was still trying to recover. And now this!

The doctors could see the strain in our faces. As we spoke positive words into Peter’s ears between the numerous seizures we were reminded that perhaps we were not grasping the seriousness of the event. Within 2 days of the meeting we found ourselves in the office of the hospital psychiatrist. He went on to say that we needed to accept that things may not turn out as well as we may think. At that point we told the good doctor that we preferred to be more hopeful.

Eventually he was placed into a 4 bed ward with other epileptic children. Three were there because vaccinations had caused the seizures. Parents take note! Peter was now having about 50 to 100 seizures a day. But somehow we had the feeling that Peter had taken a turn for the better. He was coming out of his semicomatose state day by day. He started to eat. He seemed to recognize us as mom and dad. But, his speech was very garbled and sketchy. He had great difficulty retrieving his words. He didn’t know the names of things.

We began to re teach the alphabet, colours and nursery rhymes. His numbers were partly there from 1 to 10. We kept pushing him to 20 then 30 and 50. t this point for us the miracle we were hoping for was taking shape. He began making food choices and asking questions. This was truly music to our weary ears. e told the doctors and nurses about this progress. The doctors basically told us that it was most likely “Parent’s Wishful Thinking”! The nurses were much more understanding. At times my wife and I questioned ourselves. Were the doctors right ?

Were we being overly optimistic? Still, we stuck to our hopes.

Meanwhile rectal, injected and swallowed medications could not stop the onslaught of seizures. The doctors searched for the prefect drug combo but progress was very slow. My wife and I became experts at suctioning his quarts of seizure saliva in order to prevent choking. In fact we gave demos for the medical students that came through on parade.

It wasn’t long before we had a second meeting with the psychiatrist, he told us that it was common for parents to be in denial when their children are seriously ill. He suggested that due to our lack of sleep we may be imagining that our son was making the progress we claimed. This really infuriated me. I told him, “Doctor with all due respect are you aware that according to a 1980 study done by the American Psychiatric Association, psychiatrists commit suicide at rates
double that of the general public ? So please don’t dictate to us what we are and are not seeing about our son’s progress.” This caught him totally off guard. My wife took me aside and told me to cool down. I apologized to him. Then he suggested that if Peter recovers we should send him to a fine school OWNED by his PhD wife. That’s when we stood up and walked out of the room.

Day by day Peter was making excellent progress thanks to the power of mother’s love and some kind nurses. His seizures were coming down to about 10 a day. His speech and memories were coming back a bit here and a bit there. The photo albums we brought in were becoming well warn. But his short term memory was lacking, as were comprehension and cognitive abilities. We would work on these deficits as long as we could get him home and away from this toxic atmosphere. The seizures continued to decrease on Phenobarbital, Tegretol, and one other adjunct drugs.

After nearly one month Peter was discharged. We had much work to do, and much to learn. But more importantly we had much to be thankful for. From a deadly diagnosis and poor prognosis we now had our son back thanks to prayers and lots of hope. It is our opinion that the doctors do try hard. We know they are not perfect. We also know that many of them could use a little more tact along with a better understanding about human nature. They should also learn that if you take on a loving mother you better be right about what you say and do.

What happened to Peter was the perfect storm of medical errors and wrong assumptions coupled with a lack of encouragement and lack of faith on the part of the medical establishment. On the opposite side, there we were, the parents that chose to see light at the end of the tunnel. Thank God for faith. Toronto’s Hospital for Sick Children is a great institution and we are lucky to have it
in our country. Unfortunately our experience there was far from perfect, but we are grateful we got our miracle, our dear son Peter continues to fight on.

Today after trying many drug combinations, seeing various neurologists and having had psychological assessments, Peter now 27 years old, 6′- 2″ tall and good looking continues to have about 7 to15 seizures a month. These are complex partial temporal lobe seizures that have lately gradually turned into more generalized convulsive episodes. Peter’s worries seem to be a major cause of these seizures. What are his worries? He may be worried about his computer fan making a slight noise. Or concerns about his future and the lack of a social life.

Peter is also displaying some compulsive repetitive tendencies, especially when it comes to his possessions and neatness. No one told us that diet should be a concern. We had to find out the hard way. And still, with indisputable proof we have doctors that feel diet doesn’t contribute much towards seizures thresholds. Peter has a mental list of dos and don’ts.

Sleep, worries, anger, timely meal times, food additives like msg, colouring, nitrites sugars, caffeine, alcohol, milk, stimulant spices, ketchup, mayonnaise, soya and some items push the seizure thresholds the wrong way. We learned this the hard way. Up till the time he was 18 years old Toronto’s Sick Children’s Hospital was Peter’s pit stop every 3 to 6 months for blood work, EEG’s, and general physical examinations. His doctor was and may still be world renown.

We were told about the vagus nerve stimulator and the possibility of surgery. As for the Ketogenic Diet we were told that at times it’s helpful but not for Peter’s seizures. Plus we were told it is very difficult to follow and maintain. Today we wonder if we should have tried the diet contrary to what the doctor told us.

As I write this Peter is practically housebound by his seizures and feelings of nausea. He wants to socialize more. He wants to learn but has difficulty retaining it. He wants freedom and more hope for his future. Yet friends are hard to come by when you are 27 years old, can’t drive, can’t take public transit, can’t drink, can’t eat many meals, have a poor memory, and low comprehension.

People are afraid of epilepsy. They’re scared of the word seizure. This makes Peter depressed and concerned about his future and the possibility of one day losing his parents. After trying out other alternatives modalities like Emotional Freedom Technique accompanied by doctor Swingles harmonic CD sounds, Reiki, vitamin therapy, even laughter therapy, it’s now time to try Neurotherapy/Biofeedback.

There is always hope although at times hope is very illusive.

Before the illness my wife had a dream. She has a Guardian Angel that talks to her often. In the dream the Angel asked: “You have 2 sons, one will become very ill. Which one do you choose for this illness” Immediately she said Peter. Why Peter? Because he was stronger- more of a fighter, smart, and a born leader. For one week we held our breath not knowing what to make of it. We knew this was a warning and not a real choice for us to make. And then true to his word the nightmare came true.

When Peter was in the hospital, there was a doctor who didn’t belong on that floor, and only seemed to appear when no nurses were around. He never gave his name yet he was always inquiring about Peter’s progress and reassuring us that things would turn out ok. Who was this guy? No one seemed to know who this tall young doctor always with a smile really was. Was he Peter’s Angel? This might sound very unusual but it’s the truth. To this day we have no idea.

We wish to thank Arlene for having the strength, the courage and taking the time to put this fine website together. This website has the power to help many of us who live daily under the shadows of brain related problems.

Problems that with care and attention can be overcome or greatly reduced.

Sam,

for Peter,

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About Arlene Martell

Arlene Martell is the publisher of EpilepsyMoms.com and the author of Getting Adam Back – A Mother's triumph over Epilepsy and Autism. She resides in a seaside suburb on Vancouver BC Canada with her husband James and their four children Adam, Justin, Shelby and Victoria.