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jacob cole story infantile spasms west syndrome epilepsy seizures hypsarrhythmia eeg childhood epilepsy infant seizures developmental delay information myclonic baby acth Our Son JacobThis is currently be updated For a brief time line of events visit "Jacobs Time Line" page At the end of December 2007 (aged 8 months) Jacob started to exhibit unusual behaviour. We initially thought this was indigestion as he was cramping after eating or waking. His "Jerks" as we called them, became worse with his upper arms and head being thrust forward. This sometimes caused a blooded nose or mouth when he hit the floor. We videoed this behaviour and went to our Doctor who thought he was having some sort of drop attack.
Jacob in the middle with his older sisters (Dec 2007) After a referral to a Hospital specialist in May 2007 they diagnosed myclonic seizures, but said this would need more clinical investigation. Apart from the clusters of jerks, our son seemed perfectly healthy and was meeting all of his developmental milestones. Although we wanted this problem rectified and a reason for him having it, we hoped that it might be some form of infant epilepsy that he would grow out of. At this stage ourselves or the Hospital specialist did not realise how serious the problem was. In June our son was exhibiting developmental delay, not making any verbal sounds, having difficulty feeding himself, getting upset for no reason and finding it difficult to sleep. In July we finally had an appointment for a EEG (electroencephalogram). During this test he was found to have hypsarrhythmia, we were told not to leave, a specialist was called. We were then informed that our son had "Infantile Spasms." Our son was admitted to Hospital the same day, to start an immediate course of ACTH (adrenocorticotrophic hormone) followed by a weaning course of Prednisolone. There was not a lot of information forthcoming from the Hospital, so we immediately searched the Internet for "infantile Spasms". I have to say we could not find a positive prognoses and were painted quite a grim picture. We had to force ourselves not to look anymore as it was quite upsetting. Because of the medication, he put on weight and was hungry all the time. His behaviour changed, he did not want to play, he became aggressive and he had to start taking medication for high blood pressure, as this had gone high. As parents we weathered the storm as we hoped it would be a small price to beer, if it made him better. 5 weeks later after all the medication, our son had another EEG, "it was clear" and showed normal activity. This was great news, but we were still apprehensive about the future. Our son started to come on leaps and bounds, he learned to walk in 10 days, started to interact with his toys and was a happy babbling boy again. Unfortunately in Oct 2007, we started to notice our sons behaviour changing again, just slight changes but as parents we new something was wrong. We went back into Hospital and a new EEG was done, our son had had a relapse. We started a new course of ACTH and waited, we come out the other end and although our son still has son abnormal brain activity, he is happy, and in to everything like a boy should be. As of Feb 2008 (aged 22 months) he still has not said any words, but has great hand a eye co-ordination. We are hoping to get speech therapy and try to catch up the 9 months of his development he has lost. We are due another EEG this month and we will take it from there. To be Continued .... Jacobs Storyjacob cole story infantile spasms west syndrome epilepsy seizures hypsarrhythmia eeg childhood epilepsy infant seizures developmental delay information myclonic baby acth
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