West Syndrome / Epilepsy

[deleted account] ( 1 mom has responded )

Hi my name is Edyta i would like to share my story I'm 21 years old my son David was diagnosed with west syndrome at 8 months old. When my son was born he was in intensive care for a week because of the lack of oxygen in his body basicly he wasn't ready to live in outside world witch was a rare case but after a week he finally got better and I thought everything was fine until he was 2 and a half months old he started to have little jekring movements witch I thought were normal because when babys get control of their head they are a bit wobbly . At his 3 month old check up I've mentioned that to my nurse in HSE but she wasn't really worried so I thought everything is fine but I was wrong when David was 4 months old the little jerking movements of the head changed into full body jerking he could get 1 body twitch then 5 mins later another and so on until he got tired . He could sleep after those twitches even for 4 hours . I knew something was wrong because my boy is 4 months old he is not interested in toys or even tummy time he was constantly sleepy he could feed every 3 hours and sleep after each feed then he would sleep for the whole night from 11pm until 11am , if we had a good day he would stay awake for 2 hours but not all the time . I've mentioned that to the doctors but they didn't see anything wrong . David was seen by his Gp because he had little marks on his legs that looked like little bright moles but the Gp was more worried about my baby boys growth (not the jerking movements ) so he made an appointment with pediatrician I was so happy we will see a baby specialist because David is my first baby and I didn't know if the jerking movements are normal or not because I was told many times that he will grow out of it but I still felt there is something wrong so after the visit the pediatrician told us that David might have epilepsy... And needs to stay in the hospital for more investigation .. So we finally got a bed for David in the hospital , he was seen by many doctors many tests were done and the doctor told us that David has IS/ west syndrome(rare case ) and that those jerking movements were damaging his brain and he was 50% delayed at 8 months old we are still waiting to find the cause why this happens but more likely its because David has a bruise on his right temple of his brain we hope it's not genetics ( nobody on out family has epilepsy ) David started to take strong meds sabril and steroids to get rid of the damaging brain spasms, they have worked witch is a great news for us but when David was on steroids he wasn't him self he only slept and not even cried he moaned for food we were scared and worried about him , now he is 3 weeks off steroids the doctor kept him on sabril and now David is on a new medication called keppra because David had a full epilepsy seizure a a month ago witch is a sing of the spasms going away but transferring into new epilepsy which is a common thing , David is free from the spasms but he still has now and again a little twitch movement witch will hopefully go away soon but thank god its not damaging his brain . He is now 11 months he is slowly improving doing things he couldn't do but he is still far from what a 11 months baby should do but every week he discovers something new , he can't crawl but he can sit up with a little support and he sits in a high chair but he needs blanket around for a little support , he is grabbing toys slowly pressing buttons on the noisy toys , he loves piano music , he is getting his personality which is great ,he also knows who his mum is and dad , he goos to get attention , he loves watching TV , when on tummy he tries to lift his head but still really hard but the legs are always going mad :D the doctor Said when the spasms stop he will start to catch up so there is hope , he is a happy lazy baby haha but we are still working hard to achieve more and more he is being seen by physio and every visit there is slow but steady progress and hopefully soon he will be seen by enable Ireland to help with our improvement . Its a very hard condition to deal with mentally so if there is any mom that needs help with a similar story I'm more than happy to help and I hope that my story can help you and give you hope that you should never give up :D Thanks :D


Edyta - posted on 04/17/2016




Hi. My son was diagnosed with west syndrome over month ago. Can you please contact me on email? edytaelk21@wp.pl

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