New to the Discussion Table - About my 2year old

Katie_G

Hi All,

Im katie and i have a little boy who is 2 on the 23rd August. He has 2 cysts in his brain, low myelination (unsure what that is) delayed development and under going investigation for cerebral palsy. He is starting to roll however his right arm keeps gettin caught under him he cant sit, crawl, stand or walk. It just seems as though his balance is waaaaay...off and i have a great support team that helps but unable to find someone who is going through something similar to myself to talk to and see if there is anything they are doing that i can be doing to help him along more. 

Cant wait to get involved and chat with other families i feel much more confident to talk now so please...anyone happy to chat to contact me.

Thank you
katie

[Deleted User]

Hey Katie!

Welcome to the community. Hope you make lots of new friends here!

Have you heard of Face2Face? 
 It's a scheme Scope runs - in certain parts of the country, although I think you can also sign up for the email service- that pairs parents of disabled children with other parents (who are trained befrienders) who may have had similar experiences.    

Anyhow, have a good poke round the community; lots to read and respond to! There is a whole section for parents and carers with loads of threads, and you can also ask questions to specialists in different areas which can be dead handy (just click 'categories' on the right side of the screen)

-B x

t1tan1a

Hi Katie, my son was diagnosed with 2 brain cysts when he was 18 months old. He had physical developmental delay. One cyst is gone but he still has a sub arachnoid cyst which affects his left side. He's had surgery to puncture the cyst and he's had physio etc. He's 14 now and fantastic! Each person's case is individual and unique but I know how scary it is starting out on a diagnosis, I'm happy to answer any questions if I can and give you some input from my son too if it helps. X

Katie_G

Hiya T1tan1a, 

Thats amazing about your son! So he is able to walk and talk etc? How late was his development was he able to sit at 2? Does he have the low myelin on the brain? I do have plenty of questions but wont send them all at once i promise. Its shocking to find someone whos been in a similar boat to me. I thought i was the only one because i read up on these things but never find answers.

Thank you soo soo much for getting in touch i really appreciate it.

Thank you
Katie 

t1tan1a

He's amazing. Mentally he's very clever, this year he starts at a school specialising in digital media. He's been coding since he was 9! Physically he's struggled but I've made him swim since his diagnosis and that's helped keep him mobile. He's never going to run a mile but hey ho. He's a confident happy young man who is well aware of his condition but has never let it hold him back. He's happy to talk about it as it's not strange for him as he's always 'been like that' your little boy will be the same xx we have a little saying in our house which is 'the only disability is a closed mind, keep your mind open and you'll never be disabled'

Katie_G

Hiya,

Was your son able to sit from the age of 2? I take Joshua swimming he loves it and we do alot of physio. His got another scan next week to see if the cysts have changed or even to see if his myelin has stayed the same. I would just be happy if josh could sit up that would be a game changer for me. I dont care how long it takes for him to walk aslong as his sitting because its only then he will see the world differently. 

How was your sons coordination? You must be so proud of him he sounds like his doing an amazing job and very confident to he able to be open. I love your saying as its so true.