|
Post by joseylouber on May 26, 2010 0:07:00 GMT
Hi Everyone, I am a newbie on this site but am so pleased to have found it. I have felt so alone...like I am the only person going through this! I have an 8 month old little girl called Isla-Amelia who has type 2 Lissencephaly. She has lots of seizures everyday and has done since she was two hours old. Its been so hard and I am really struggling to accept what has happened to my baby. Can anyone tell me what has helped them to accept this condition and what has helped you to become strong? I cry all the time and as Isla is my first child I find myself looking around at everyone else who has normal children and feeling so jealous, angry and sad. I so desperately would love another baby but were going through the genetics process now. Has anyone been through this? How long has it taken and is this condition usually genetic?
Any of your experiences or advice would be so helpful
Thank you v. much
Jo x
|
|
|
Post by layton on Jun 5, 2010 11:00:30 GMT
Hi Jo, My name is Tyana and i am 24 years old trying to deal with the same bullnuts you are : ), I have an 18 month old little boy who was diagnosed at 6 months old who has liss Type one. It has been the hardest thing in the world to deal with and i honestly dont know how to explain to you how i have got where i am today. Laytons siezures are reasonably controlled at the moment so this makes our lives so much easier! I feel like a normal mum when i dont have to deal with them all the time.he is also our first child so to be honest i dont notice so much that he isnt walking and talking and all the rest coz i dont know what he should be doing...if that makes sense. Like i no rite now he would obviously be doing it ll by now but most days i dont care as long as i dont have to watch him have siezures the rest doesnt matter, becoz that just breaks my heart seeing him go through that. I also cry alot, a real lot!! haha. This is totally normal sometimes i hold it in for too long then i just explode!!! so i try not to do this anymore other wise im a mess. What i have learnt is to make sure i take good care of myself coz if i dont look after me than i cant look after layton so i went and got myself some vitamins and some quick snacky foods for when i am having a bad day and im on the run or too tired to cook etc. YOu need to take care of yourself i cant express this enough! : ) My partner and i also just got our genetic test results after a long six month wait from the university of chicago it was found that it was just one of those things, it is within laytons genes (not ours) so our reaccurance rate is below 1% but we will still get tested if/when we decide to have aanother baby. Its very uncommon for it to happen twice as it is normally just the genetics of the child (not the parents). Feel free to add me on facebook if you like -Tyana Hall from New Zealand Then you can see photos of my little angel. Mine and my partners biggest thng is just to try and live as normal a life as ossible, after all you dont want Isla to miss out on anything do you? So we still go the beach and let him lay in the sand, and we sit on the swings with him on our laps and go down the slides the same way etc. theres always a way and you learn as you go. Weve promised ourselves to never let Laytons condition stop us from living as normal as possible. We just take that extra time to pack his meds for the day so we can go out. We became members of the ambulance so werever we are were covered, all that kinda thing. Anyways i hope ive helped a little, ill stop blabbing now.please feel free to ask me anything as i know exactly where you are in your head, ive been there and still do every now and then. Just remember your not crazy, all of the thoughts and feelings your exprencing are totally normal and if you wanna cry then cry! Coz when your finished that knot you feel in your chest goes a way for a little while...just a little while, but its better than not at all. Take Care sweety XX
|
|
|
Post by dutchgirl on Jun 23, 2010 7:15:56 GMT
hi
We also have a daughter and she is 18 months old We know that recently she has lissencephaly MRI picture is similar but its only blood picture is different it is difficult to see how your child has changed and will always remain Our daughter has so many attacks over the past days but really good care of yourself is important and try to give it a place but that takes time and is very hard
lots of love
|
|
|
Post by joseylouber on Aug 4, 2010 13:41:40 GMT
Hi Tyana
I have only just read your reply to my post. Thanks so much for your advice - you have made my day :-) Everything you said I can relate to so much..even right down to being the same age as you. Your post has come at the right time as I've felt so low recently, feeling so alone! My family and my mum especially want to help me as they can see how much I am struggling to come to terms, still after ten months, with what has happened, but they can't understand as this hasn't happened to their child. Isla has been having such a hard time recently as her Consultant tried to wean her off one of her medicines; Phenytoin and swap it with Keppra. This completely changed her type of seizure and she kept stopping breathing. After being rushed into hospital twice it was decided that taking her off Phenytoin was the wrong move and she was put back on her original full dose. She is doing a lot better with her seizures now, she still has stiff, twitchy movements, but were used to them and their not distressing to see. What are Laytons seizures like, as I understand they can change as they get older? Does Layton have a stridor? (noisey breathing). I really appreciated your advice about keeping well, so I am going to get myself some vitamins. I keep feeling ill all the time, I think its related to how I'm feeling, but I know I need to try and help myself for Isla's sake. Its been particularly hard recently as my older sister has just had a healthy baby girl, I selfishly had to shut myself off from her for a while as I couldn't cope with it. I recently saw my sister & her beautiful baby and couldn't help but feel jealous that she had a 'normal baby'. I feel bad for these feelings as I know its not her fault, but I guess there normal when you have been through something like we have. I will definitely add you on facebook as I would love to keep in touch with you if that's ok?
Love Jo xx
|
|
|
Post by joseylouber on Aug 4, 2010 14:04:45 GMT
Hi Tyana
I have tried to add you on facebook with the details you gave me but can't find you. If you want you could try and find me next time your on there. I'm Joanna Kirby - England, derby. Hope you can find me :-)
Love Jo xx
|
|
annie
New Member
Posts: 1
|
Post by annie on Aug 5, 2010 10:24:10 GMT
Hi Jo and Tanya. I've just joined this lissencephaly site . I know it has taken me quiet a long time to do so but here I am and I hope whatever I have to say will help ye both on your journey. I know each day is tough but remind yourselves every morning that God has chosen you to be the special mums for you're special children. Well let's start on a positive note My boy had his 13th birthday in May this year and like ye both I was given the grime fact's about children not making it to their 2nd birthday. The advice I have for you both is don't look around at any other children and compare yours with them as your only torturing yourselves. What your going through is grief, believe it or not but no-one helped me out with these emotions and like you I felt so alone. One day after my son was 2years old a health nurse decided to tell me that I've gone through the grieving process, which is normal when you learn that there is something wrong with your child ( you have to grieve for the baby you expected it to be after the 9months). it did help to know that I wasn't going mad but To be honest I wish she had told me what was happening to me while I was going through it. Anyway when my son was 3months old the doctor told me that my boy was Lissencephaly and that he'd be physically and intellectual disabled. From that day on I made up my mind to be strong and to focus on giving my only son all the love, care and attention he needed. He developed epilepsy when he was 1 year old and spent a week in hospital, during that stay his dad walked out on us both and we've continued this journey together ever since.... He got the peg last July and I have to be honest I was so dead set against him getting it but after he spent one week a month in hospital for six months fighting pneumonia I knew that I had to make a decision fast. It's probably one of the hardest decisions you will face but girls it's the best one as he has only been in hospital twice in the last year. The reason I guess why I was so against it was because my son loved food so much and I felt I was taking away one of his pleasures and also girls as mothers your natural instinct is to feed your children. I hope this might give ye both a little glimmer of hope and I better go now as he's snoring here beside me and I may snuggle him up into his bed... bye for now Annette..
|
|
|
Post by Tyana on Aug 27, 2010 11:31:01 GMT
Thankyou so much Annette! You really helped and inspired me.
And to Jo i cnt find you on Facebook either maybe try entering my email address which is teeandgreg@live.com That might make me come up. My profile pic is me in a dark striped shirt sitting on the beach with Layton,i think hes in an orange shirt (if that helps). Im glad your looking after yourself as it does pay off. like for example my partner greg and Layton have a gastro bug at the moment but not me! : ) and im putting it down to looking after myself, getting sleep taking vitamins eating, it all adds up, coz normally im the first person to get sick! So im really happee, as i dont have time to get sick : ) lol Anyways try adding me on FB using my email and well go for there. or even just write tomy email if you cant find me and we can do it that way : ) Takee care sweety. Sorry it took a bit to write back havnt been on for a while i go through stages XX :)
|
|
|
Post by honey on Oct 15, 2011 9:29:09 GMT
hi jo hope ur isla is fine now. wat medications worked best? kindly help, thank u. my child has liss on one side
|
|
|
Post by bnsprout8 on Jan 10, 2012 5:37:00 GMT
Hi all This is my first post. Let me just say how wonderful it is to see so much support there is! My daughter, Mary, was diagnosed enutero at 35 weeks so my husband and I had the benefit of knowing from the beginning and being prepared for the worst. I think you can't help but grieve for all the little things that others take for granted. My very good friend and coworker was pregnant at the same time that I was and we were only 1 week apart in delivering. How hard it is not to compare! At the same time, Mary is so utterly lovely and unique, and such a little fighter that she ispires me to be my best self and to be worthy of caring for her. I try to focus my energy on the blessings that we do have, let my self cry when I need to and pray alot. Still, there are times when I feel very alone, and I get irritated with continually explaining to friends and relatives what is wrong with Mary, when I'm struggling to understand it all myself. I'm grateful for forums like this.
|
|
|
Post by Robinson on Jan 12, 2012 16:28:29 GMT
Hi jo Our daughter is 7 years old now and we too had to comoe to terms with the diagnosis, life change and shortened life span. It's not an easy road but its one travelled by few and those few are stronger for it. Emily was our first and we struggled to decide re future children. We now have 2 more and they're fit and well. We had genetic screeining and took part in some research to predict future occurences. Please feel free to email me etc sturobbie76@gmail.com any question can and will be answered. I work professionally in the field of children with disabilities and am chairperson of a unique charity for the disabled community too so if I can be of any help you need only to ask
Best wishes Stuart and Emily xxx
|
|
|
Post by Helen on Feb 12, 2012 22:43:21 GMT
Hi! I have been following posts for a while now. We live in South Africa and Alex was diagnosed at 3. He is now 12. We have also felt that we are walking this road alone. Finding websites like this are sanity preservers & make us realise we aren't the only ones. Those feelings of what has been lost never really go away - particularly when faced with children of family & friends the same age. We just constantly remind ourselves that "Al is Al"- he is happy & brings enourmous joy to us!
Stuart & Emily - We are in the process of looking into migrating to the UK and would love to contact you.
|
|
|
Post by Robinson on Feb 14, 2012 14:15:20 GMT
Hi Helen. Are you sure you're ready for the sunny climates of the UK? We have had excellent support medically, som not so good which will always happen at some point but more good than bad. Feel free to contact us, it's great to share experiences, thoughts etc.
Stuart and Emily xxx PS Emily's off for her first trip to EuroDisney this year, can't wait to see what she makes of it!
|
|
|
Post by Helen on Feb 21, 2012 20:04:38 GMT
I think you have as many sunny days as we have rainy days in a year! My hubby arrived in London this evening & will (hopefully!) Have an opportunity to contact you. I hope Emily has a wonderful time! Thank you! Helen
|
|