Hi after reading your first post parts of yr daughters situation sounds very like my daughter she's 10 months and was born 4 days overdue since birth Ava has had lots of problems some starting fairly mild but have know got alot worse. After a grown scan when I was 38 wks doctors thought she possibly had dandy walker syndrome after having a MRI it is now seen it's not this and we are awaiting further tests. Ava is deaf and has very poor sight only really responding to lights. Ava also has seizures which can sometimes feel like they last forever her doctor thinks this is because of low brain activity, very much like yr little one Ava doesn't follow or fix with her eyes neither does she smile I have slowly accepted Ava condition and I really hope you get the answers you need. Have she had her MRI yet? Maybe once they have found the cause of the seizures they can medicate her if you need a chat I'm very good at listening sorry for the extra long post very new to this xx

(02-01-2012 06:42 PM)Tamara Wrote:  Hi Tanxx,

I've only just joined this forum, mainly because I am Asking the same question. My daughter is four years old and met all of her milestones up until the age of two and a half. At this point we thought that her speech was delayed but we were not overly worried. Just after her third birthday she had a seizure and after subsequent scans found that her cerebellum was underdeveloped. At the time she was not showing the associated symptoms of this. Now though, she cannot balance properly. Six months ago she could walk on her own. Her speech and cognitive abilities are delayed and in some ways seem to be deteriorating. I know of no one else who has experienced anything like this. I'm scared for my angels future. I hope that your little girl is progressing and that you are finding answers to your questions. x

Hi. I'm in the same situation. My son is 23 months - he was developing normally until the summer. Then he started to get wobberly on his feet and no longer speaking. He had an MRI amongst many other tests. He too has a small cerabellum. The neurologist said he has cerebella ataxia and retinal dystrophy. He is still under going tests to confirm what type of ataxia he he has. He can no longer walk or sit un aided. I'm scared too at the speed at which he is getting worse. If you want to talk feel free to MSG me. Our situation sounds alike. Xx

(11-23-2011 10:47 PM)tanxxx Wrote:  Im so sorry i havnt wrote in so long. Just been finding things hard and trying to deal with everythin. My daughter is nearly 11months old now and is still finding it difficult to hold her head up for long periods at a time, altough i do feel like physio is helping and she is gettin stronger. She has the sunbeam chair to encourage her but she hates it. Ha! She went for mri scan and blood tests on 5th sept and we are still waiting on results. Its been 12weeks now, i feel so angry with how long its taking. I keep ringin up and its always the same answer... I'l chase it up 4 u, and i get told not to worry coz if somethin major had shown up then they wud hav got intouch by now. But that doesnt help at all. She is still not smiling at us or showing any emotion in her facial expressions. Which is making me think, cud it be autism. What do u think? She hadnt had a seizure for 8weeks then 2days ago she had 7 during the ngt. I took her to docs and got told she is coming down with cold and its common that children who have seizures have them before they start getting poorly! She is just so undemanding. Still find it hard seeing other babies, hoping that will get easier in time! Iv joined a support group which is nice to talk to people who have disabled children, i feel like i fit in more and its nice to talk openly about it! I live in kendal, cumbria. North west. Where about's u from? Thank u all so much for your posts, i really appreciate it. Hope ur little ones r all doing ok! Lots of love. Xxx

Hi Tan,
Im feelin you! My little girl matilda is now 11 months. She had the most horrible time after she was born, we were in the hospital for three weeks and she was out of it on drugs until then. She was having seizures and needed ventilation and oxygen for 5 days. Her MRI showed extensive damage to her brain, and we were told that they simply couldnt tell us a thing about what she will and will not be able to do. Pregnancy and the birth itself were great (we had a water birth too), but she really came into the world with a bang! She is still having trouble sitting by herself and cant crawl and it is super hard seeing other little ones her age running around! Some days are better than others, thats for sure, it is just so important to take one day at a time, when we know so little about their future. I find that if i let myself get started with the "what if?"s, then it quickly becomes an overwhelming mess.
I also found it hard, telling other people about her, as the urge to protect her from others is so strong. I still find it hard... each time i explain to somebody it is like twisting a knife in my chest! Hopefully that will get easier and less painful as time goes on... I am also having so much trouble finding a therapy that suits our family and also other parents that i can talk to. I went for a while, but couldnt handle the usual mummys groups. Anyway just thought i would let you know that we are out here! One day at a time...
Rosalie

Hi there, I can also definately relate !!!!
My daughter, and only child was born after an apparently fine pregnancy at + 4 days. She arrived after a fast labour...tho didn't feel like that at the time !!! She didn't cry, after oxygen, she made a little, I can only describe as a mewing noise..... then nothing.... We were sent to the ward, but after 24 hrs without really feeding she turned blue and was rushed to SCBU. I should say i was at this in a state of shock, barely in the real world, again in hindsight I think in a state of survival mode, where i was trying to make sense of what the hell was happening. Why wasn't everything ok, like in the books etc... was my baby ok..what was happening and really was she going to be alright??
She was motionless, silent with her limbs held tightly in place.... It was only in hindsight that I realised that she didn't move very much at all during the pregnancy. As this was my first pregnancy presumed this was 'normal'.

Fast forward seven years, I can happily tell you that my princess with all her problems... Prada-Willi Syndrome, delayed development, Partially-deaf, visual problems, emotional probems, learning problems etc..... I've never been so stressed, ill, anxious, exhausted... and yet on the flipside.....happy, tired from laughing, entertained, confident (where she is concerned anyway).....

and ultimately proud of my special little person...

My basic advice, and one that I still follow, is to take everyday as it comes... wait for all the medical tests and just wait and see.... the whole world is an adventure whatever happens.... oh and remember to try to look after yourself !!!! (I'm still trying to remember to take that last bit of advice)

I'm sending you lots of positive vibes through the cosmos !!!!!

Hi Hun, I know just how you are feeling. I've been thought the same process....it's the waiting and not knowing.....rest assured tho, now all the relevent drs are involved hopefully you will be starting to get some answers soon. I have a neighbour who has a little girl who is a yr younger than my little one and the differences between them are very noticeable so I know how disheartening it can be, just enjoy your daughter and leave all the worrying to the drs! Easier sad than done, i know. If you need someone to vent to I'm here! All the best xxx