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Could somebody please explain/comment/share experience?

Thu, 04/27/2006 - 05:30
Hi, my name is Francois and I am from South Africa. My little four year old son first had a seizure in August 2005. As he was recently sick at the time, we assumed that his seizure was a febrile one although he did not have a fever. The seizure was tonic clonic and he went blue in the face due to lack of breath. He was examined by a Pediatrician who diagnosed a febrile convulsion. He had a CT scan done for safety and everything appeared normal except for blocked sinuses. In March 2006 he had another seizure at four in the morning after having woken up and come to our room to lie in our bed. He coughed heavily a few minutes before the onset of the seizure, which was commenced by a loud noise (as if hit in the stomach). He whole body shook and he thereafter went stiff in his arms and legs whilst his breathing stopped. I got the fright of my life as this was the first time I had experienced it. I also, as many other parents before, thought my child was dying in front of my eyes. The seizure took a minute or two and he was dazed afterwards and his speech was slurred before he fell into a deep sleep. His health symptons were the same as eight months previously (heavy chest, ears, tonsils etc.) and we again assumed the seizure was febrile although he did not have a fever. The Peaditrician examined him and was convinced my son did not have epilepsy. In April 2006, about three weeks later, he had another seizure on a Saturday morning and we now knew something was wrong. It was Easter weekend and we took him to the local GP at the seaside resort. He was also convinced it was a febrile convulsion as he thought my son's tonsils were very inflamed. He gave him rectal valium and assured us he would be fine. Interesting was that my son vomited on me on the way to the Docter. Two days later on the Monday morning, my son had another seizure but this time it was as if he did not shake that I know of and neither did he go stiff. He wet himself for the first time and lay there with his eyes and mouth fluttering. It was also as if his breathing did not go away completely although it was affected. Shortly after the seizure he also tried to get up, which he did not do on previous occasions, and we had to restrain him to keep him down. He slept deeply for about two hours before waking up with the most beautiful smile as if nothing had happened. He was convinced he had just woken up after sleeping through the night. We put him in the car on our journey back home and he said that he was hungry. He fell asleep again within ten minutes and we bought him food about thirty minutes later. He was fine and acted normally. Little did my wife and I know that the worst day of our lives lay ahead. About two hours later, we stopped again for food after our son had slept soundly. This was about four hours after his seizure that morning. Our daughter screamed our sons name and upon looking back, I noted him staring up and to the right. I could immediately see that it was a blank stare and that this was the onset of another seizure. He eyes then started fluttering and his lips smacking (like a fish on land gaping for air). His one leg shook a bit and thereafter went stiff. There was no other notable stiffness. His breathing was impaired and he went slightly blue before taking a deep breath through his nose. He was tired again and fell into a deep sleep on my wife's lap. We went to the Emergency Unit at our local hospital where a Pedeatrician examined him. About three hours after the previous seizure, and on the way to the ward where he was to be admitted, he again started staring up and to the right. This was the start of another seizure. It appeared very light compared to the previous seizures and it almost seemed as though he was aware what was going on but could not speak or express himself. His breathing was impaired but he did not go blue as far as I can remember. There was no notable shaking or stiffness. He was confused afterwards and again fell into a deep sleep. At this stage he was put onto anti-convulsant Epilim. About three hours later he woke up again with a beautiful smile and within about fifteen minutes, whilst speaking to his little sister on the cellphone he again started to stare up and to the right. His eyes fluttered and his lips did the same as above. He went blue again but soon regained his breath again. Also no notable shaking or stiffness. Rectal valium was administered. He thereafter went into a deep sleep again. He awoke again at about 00h30, again with a large smile and within thirty minutes of awakening, he again started staring up and to the right and his eyes and lips did the same as described above. This went on for a good couple of minutes and he went very blue in the face. I got really worried but than God he started breathing again. No shaking or stiffness. Valium was again adminstered and he then slept for about two hours before awakening. He was in good spirits and fell asleep again, this time without having a seizure. About six hours after the previous convulsion, at about 06h40 he again started staring up and to the right and his lips and eyes did the same as above. This seizure seemed very light to me and he did not have major impairment of breath. No shaking or stiffness. An hour later the Docter arrived and woke him up. He did a number of reflection and co-ordination tests on him which he passed with flying colours. Whilst the Docter was standing there, he started staring up and to the right again and his eyes were rolling and fluttering heavily. I could not see his lips properly because the Docter held an oxygen mask over his face. This convulsion lasted for seven minutes but it seemed that my son was aware what was going on, in a semi-state of consciousness. Although he could certainly not speak or do anything similar. During this convulsion he also suffered incontinence on both ends. He was then placed over to another hospital where a Neurological Pediatrician examined him. In the meantime an EEG had been done which showed compatibility with Epilepsy but with no focal point where it was likely to commence. An MRI scan was then done and nothing irregular was found. The Pediatrician could not explain to me why my son's onset of the convulsions appeared to start focally (the staring up and to the right)and then spread only to the eyes and mouth, although nothing irregular in this respect could be found. His dosage of Epilim was increased after blood tests were done. He had no further convulsions for nine days until this morning. He was sitting on our bed when he started staring and blinking his eyes. I was convinced another seizure was about to take place and I called his name. He reacted, laughed and gave me a kiss upon seeing my concern. This stare was for a couple of seconds. I then thought that he had been joking. Within fifteen minutes he had a seizure in front of the television. I did not see the onset so cannot say whether the stare was present. I do know that this seizure appeared mild and as though he was breathing throughout although slightly impaired. I also think that he was aware that something was happening because when I picked him up to lay him down it was as if he acknowledged this. When I lay him down he immediately wanted to get up so he must have known what was going on. His teeth were clenched. I don't think this seizure lasted for more than a minute. I picked him up and took him to the room because I thought he would want to sleep as he normally does. Although he was a bit confused and his speech impaired, he nevertheless acknowledged my questions but could only answer them with one word answers and also a bit confused. What was strange was that he did not want to sleep and wanted to wath TV again. His speech was slightly impaired for about ten minutes but he almost immediately started playing with his sisters again. Within about fifteen minutes he was back to normal. It would appear that the medicine is working but that the level is perhaps slightly low. Could somebody shed some light on what type of epilepsy this may be, what the causes may be, or help/share experiences in any other way. Please excuse spelling/grammatical errors because I do not have the energy to carefully go through this long mail again! Kind regards Francois Greeff fwgreeff@telkomsa.net

Comments

Re: Could somebody please explain/comment/share experience?

Submitted by Colina on Thu, 2006-04-27 - 12:31
Hi Francois. You've come to the right place for support and help. It's horrible what you are going through with your son and I hope things get better soon. Join the chat room sometime, I find it easier sometimes then looking for entries in the so many ares of this site. Be strong and keep pushing for answers, I never got answers for decades and wish I would have been more pushy and demanding years ago.Anyway hope to talk soon. Take care and smiles!

Re: Could somebody please explain/comment/share experience?

Submitted by bradser on Fri, 2006-04-28 - 05:10
hiya fancois, i total understand what your going through,i too am only new to all this,my son is just gone 6 years of age and i only found out in febuary after over a year of "whats going on" and lots of questions. his symptoms started back in 2004 but they werent as severe as your childs,so its harder to notice. he would drool from the mouth and slur his words,which is really frighting!! he also got tingly sensations in his hands and only recently told me that sometimes he cant see me that well,his eyes go wobbly,of course because of their age they cant explain that much as older children,i was at a epilepsy convention on monday in my home town and a couple in front of me was explaining the same symptoms as your child with their own,it sounds like he has "complex partical seizures" and "absence seizures" which it isnt that uncommon to have two types,my son has simple partical and benign rolandic. you need some answers soon before it drives you mad, my son had a e.e.g.test done by his neurolgist and we havnt looked back, keep at the hospitals and doctors until your 100% happy,your childs health is the most important thing,let us know how things go,im always on this website,and always looking up about epilepsy,it helps take care

Re: Re: Could somebody please explain/comment/share experience?

Submitted by schuffert on Wed, 2006-08-02 - 00:27
Your son's seizures are very similiar to my daughters. She started having seizures at 6 months of age, she is now 15 months old. They start with vomiting, then she stars off to one side and smacks her lips. Her breathing is severely impaired and the seizures last from 15 mins to 4 hours. No abnormal test results and no cause can be found, but we are still searching...

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