27) A Worrying Time
The move to Hatfield meant that Jonathan had to move school. He started at Hatfield Infant School for the last term of the year. The school was not as close as the one in Haig Park and so it meant that he had to be dropped off and collected each day. His headmistress was Mrs Bratley and Jonny would tease Jonathan by pretending that he thought her name was Mrs Spratley. Both the boys would get very exasperated with him “It Mrs. Bratley” they would say and he would answer “That’s what I said Mrs. Spratley” Shortly after Jonathan had stated his new school Jonny was asking him about his new teacher. Jonny asked him what she looked like but Jonathan had difficulty in describing her so Jonny asked a few questions to help him. He asked, “What colour hair has she got?” Jonathan said “Like Janie’s” So we had established that she was blond. “How tall is she?” “Like Aunty Jenny?” So she was on the tall side. Then the hardest question of all “How old is she?” This one really floored him. Jonny asked him “Is she as old as Mummy?” and he thought it over and said “Yes” To which Dominic interjected “WOW”. He did not think anyone was that old!
About that time we started noticing that now and again Dominic would seem to lose concentration and stare into space. When we called his name he would seem to jerk back into consciousness with rather a jolt and then carry on as if nothing had happened. We were rather concerned about it so we took him to see Dr. Knight. I had hoped that the doctor would examine him tell me I was a silly fussy mother and send us packing but he took it seriously and arranged for an EEG to be done. I had to take Dominic into the Salisbury Hospital where the EEG technicians explained to him what they were going to do. They told him that it was going to be like going to space, they were going to put a special “space cap” on his head and he would sit in a special “space chair” and he would see lights flashing and hear different noises and they would like him to sit as still as possible and just do what ever they told him to. To close his eyes or to open them when they asked him, to do heavy breathing or turn his face this way or that. They put a sort of cap made of soft cable on his head and attached electrodes to each place where the cable met, putting a special cream on to the electrodes to enable them to make a good connection with his head. I don’t remember how long it lasted but I should think it was about an hour. He did wriggle quite a bit but the girls told him he was very good. The machine spewed out long rolls of paper with squiggly lines on it. It all looked very serious but of course I did not have clue what the squiggly lines meant. Remember he was only about four year old at the time so he really did very well.
A few days later we went back to Dr. Knight to get the results and he told us that the test showed that Dominic had epilepsy. (Petit Mal) I was devastated, I had seen people having terrible falling down fits and I did not want this for my little boy. Dr. Knight told me to stop crying and one day I would be grateful that it was “Just epilepsy” He prescribed some tablets and arranged another EEG in a month’s time. The next time we went for the EEG there were different technicians on duty and I had asked if it was possible to have Dominic sedated as I was sure that he had wriggled too much the first time and they agreed to this. Just as we were finishing off these tests one of the girls who had done his first test came in and asked why we had sedated him. I told her that I thought it would be better because he was never a child to sit still for long. She explained that although the tests can be done on a sedated person it was much better to do them with the full cooperation of the patient and that she had remembered just how good and cooperative Dominic had been that first time and she told me not to bother to sedated him again as he was a very good patient. They were always so good with Dominic and he behaved well for them.
I suppose for about a year we had a worrying time. The medication did not seem to be controlling the spasms at all and did not think that they were doing him any good what so ever but Dr. Knight was patient with me and explained that we would just have to keep changing the medication until we found the one that suited him best and he thought that the tablets were doing a lot of good as the spasms had not developed into anything worse. We read all we could about epilepsy and learnt that a large percentage of sufferers were able to have their seizures controlled with medication and about the only things that an epileptic should not do was become a racing car driver or a test pilot.
Dominic was referred to a specialist, a neurosurgeon called Mr. Actolonie He explained that the outer membrane around Dominic’s brain had a scar on it; it was on the right temporal lobe and was probably the result of a forceps delivery. I told him that Dominic had rushed into this world without any help as he was in a great hurry so he thought that maybe the speed of the birth was what had caused the scaring. He hoped that as Dominic grew the scar would stay the same size and so would be smaller in relationship to him and so would not cause any problems. He eventually prescribed a combination of two medicines, phenobarb and something called Zorintin. The phenobarb were tiny but very bad tasting and the Zorintin were huge red capsules. Dominic was always very good about taking his tablets, at first they had to be taken three times a day and if we were out somewhere and there was not a glass of water handy he would just pop them into his mouth and swallow them down.
During this time we all went to a boat show that was being held by the Rotary to raise funds for a home for mentally handicapped children. The children who could were helping out at the show, handing out programs and other small jobs and when I looked at them and looked at Dominic who was bright and well formed and able to do all the things that other children could do I remembered that Dr. Knight had told me once that one day I would be grateful that it was “Just Epilepsy”. The next time I took Dominic to see him I told him about the poor mentally handicapped children and that I could now say I was grateful. He confessed to me that he was also very glad as at one time at the beginning of the tests it looked as if the problem was getting worst and he thought that it might have been a brain tumour. So we were both grateful.
Once we got the right medication the spasms grew less and less, until they disappeared altogether and thankfully Dominic never had a major seizure. We went regularly to see Mr. Actolonie and have EEGs, but the time between visits grew longer and longer and as the EEG’s showed that the scar was shrinking in relation to Dominic’s size his medication was slowly reduced until he was completely weaned off them. By the time he was 10 he was completely off his tablets and has never had any hint of a problem again. I just thank God for His hand on my son.
About that time we started noticing that now and again Dominic would seem to lose concentration and stare into space. When we called his name he would seem to jerk back into consciousness with rather a jolt and then carry on as if nothing had happened. We were rather concerned about it so we took him to see Dr. Knight. I had hoped that the doctor would examine him tell me I was a silly fussy mother and send us packing but he took it seriously and arranged for an EEG to be done. I had to take Dominic into the Salisbury Hospital where the EEG technicians explained to him what they were going to do. They told him that it was going to be like going to space, they were going to put a special “space cap” on his head and he would sit in a special “space chair” and he would see lights flashing and hear different noises and they would like him to sit as still as possible and just do what ever they told him to. To close his eyes or to open them when they asked him, to do heavy breathing or turn his face this way or that. They put a sort of cap made of soft cable on his head and attached electrodes to each place where the cable met, putting a special cream on to the electrodes to enable them to make a good connection with his head. I don’t remember how long it lasted but I should think it was about an hour. He did wriggle quite a bit but the girls told him he was very good. The machine spewed out long rolls of paper with squiggly lines on it. It all looked very serious but of course I did not have clue what the squiggly lines meant. Remember he was only about four year old at the time so he really did very well.
A few days later we went back to Dr. Knight to get the results and he told us that the test showed that Dominic had epilepsy. (Petit Mal) I was devastated, I had seen people having terrible falling down fits and I did not want this for my little boy. Dr. Knight told me to stop crying and one day I would be grateful that it was “Just epilepsy” He prescribed some tablets and arranged another EEG in a month’s time. The next time we went for the EEG there were different technicians on duty and I had asked if it was possible to have Dominic sedated as I was sure that he had wriggled too much the first time and they agreed to this. Just as we were finishing off these tests one of the girls who had done his first test came in and asked why we had sedated him. I told her that I thought it would be better because he was never a child to sit still for long. She explained that although the tests can be done on a sedated person it was much better to do them with the full cooperation of the patient and that she had remembered just how good and cooperative Dominic had been that first time and she told me not to bother to sedated him again as he was a very good patient. They were always so good with Dominic and he behaved well for them.
I suppose for about a year we had a worrying time. The medication did not seem to be controlling the spasms at all and did not think that they were doing him any good what so ever but Dr. Knight was patient with me and explained that we would just have to keep changing the medication until we found the one that suited him best and he thought that the tablets were doing a lot of good as the spasms had not developed into anything worse. We read all we could about epilepsy and learnt that a large percentage of sufferers were able to have their seizures controlled with medication and about the only things that an epileptic should not do was become a racing car driver or a test pilot.
Dominic was referred to a specialist, a neurosurgeon called Mr. Actolonie He explained that the outer membrane around Dominic’s brain had a scar on it; it was on the right temporal lobe and was probably the result of a forceps delivery. I told him that Dominic had rushed into this world without any help as he was in a great hurry so he thought that maybe the speed of the birth was what had caused the scaring. He hoped that as Dominic grew the scar would stay the same size and so would be smaller in relationship to him and so would not cause any problems. He eventually prescribed a combination of two medicines, phenobarb and something called Zorintin. The phenobarb were tiny but very bad tasting and the Zorintin were huge red capsules. Dominic was always very good about taking his tablets, at first they had to be taken three times a day and if we were out somewhere and there was not a glass of water handy he would just pop them into his mouth and swallow them down.
During this time we all went to a boat show that was being held by the Rotary to raise funds for a home for mentally handicapped children. The children who could were helping out at the show, handing out programs and other small jobs and when I looked at them and looked at Dominic who was bright and well formed and able to do all the things that other children could do I remembered that Dr. Knight had told me once that one day I would be grateful that it was “Just Epilepsy”. The next time I took Dominic to see him I told him about the poor mentally handicapped children and that I could now say I was grateful. He confessed to me that he was also very glad as at one time at the beginning of the tests it looked as if the problem was getting worst and he thought that it might have been a brain tumour. So we were both grateful.
Once we got the right medication the spasms grew less and less, until they disappeared altogether and thankfully Dominic never had a major seizure. We went regularly to see Mr. Actolonie and have EEGs, but the time between visits grew longer and longer and as the EEG’s showed that the scar was shrinking in relation to Dominic’s size his medication was slowly reduced until he was completely weaned off them. By the time he was 10 he was completely off his tablets and has never had any hint of a problem again. I just thank God for His hand on my son.
posted by JC at
12:44 am
0 Comments:
Post a Comment
<< Home