To be so sad and scared

[zivashighkick]

I know this isn't really the right place for this but I'm desperate for some reassurance. My 8 month old ds has retained reflexes and isn't rolling or sitting. His development seems to have gone backwards over the last couple of months. We have been referred to paeds but I don't know how long the wait is.

Can anyone tell me that this is going to be okay? Is cerebral palsy the worst case scenario? Is there anyone out there whose child has cerebral palsy and is happy and flourishing?

Thank you for reading....I needed to get it out of my head!

So sorry OP ... he's got a great mum fighting for him and loving him

So very sorry to read the update. You ARE a superhero mum.

You poor thing
I'm so sorry.

I'm so sorry. How lucky he is that you followed your instincts.

Hugs and love to you both

Couldn't read and run. I'm so so sorry to read your update.

It's not the same thing at all but my son has Down syndrome and the whole 'superhero' mum thing is something I hear a lot. I just want to say you don't need to be superhero mum, you're his mum and that alone is all the superhero he will need. Be strong for him when he needs you and be weak for you when you need to be. I hope that comes across the way I mean it, I can't think of another way to put it, basically be kind to yourself.

I'm so sorry OP

So sorry to hear this for your ds and all of you, take care of yourself as well as ds.

I'm very sad to read your update and want to reach through the computer and give you a hug. What a difficult diagnosis to hear. I don't know much about the condition if I'm honest, it sounds rare. If you want to post more or start a new post, I don't know if you would find other parents who might also have similar experiences to you. This period of adjustment to this news is just so very difficult, hugs to you and your son.

JaneEyre you need to RTFT.
So sorry to hear the update OP.

I'm such a dork, the whole thread wasn't displaying. I'm so sorry to read your update . I've not heard of the condition, what will it mean for your ds?

JaneEyre the OP has updated to say her son has something rare and very serious, I know you didn't mean anything by your post, I'm just letting you know (and hopefully anyone else reading this thread will also see that the OP has updated with some not good news).

Sorry, crossed posts!

Sure you must be in shock at the moment, but he's still the same boy he was yesterday. Sorry for your news X

Haven't read the full thread but wanted to say:

My DD is 2. She has a global developmental delay, squint, hip problems, hearing problems and speech delay.

She didn't smile until 10 weeks old. Didn't roll until 2 days before she turned 9 months, sat at 11 months, crawled at 14 months and didn't walk until 2 days before 22 months old.

We've been on and off waiting lists all her life. Didn't see a pediatrician until May this year, and I'm still being told a lot now "watch and wait if she's not doing x by x age we'll then look at something" diagnosises have been muttered about but nothing confirmed.

Despite all that she's a happy, confident beautiful girl of 2. She attends a regular private day Nursery 3 days a week and adored by staff and children alike who all say she's brilliant and funny. And her problems make her who she is and haven't changed my feelings for her if anything I love her more because she faces everything with a smile on her face.

I worry about DD so much so I won't tell you not to. I do spend hours wondering if I'll still be carrying her up and down the stairs when she's 30, but recently I've been trying to live more in the here and now.

My inbox is always open if you want a chat. I understand the worry, I understand the fear. I don't judge

Just seen he has a diagnosis, hope everythings ok. Offer to chat is still always there xx

Very sorry indeed to read your update, OP. All the best to you and yours

The thread is 2 pages, people can read it all surely?

sorry I have just read your update. sending much love to you xxxx

Oh my love, I am so sorry to hear your news. You must be in bits x

Which type does he have? Have they offered him any treatment at all?

Biggest hugs x

So sorry. Thinking of you. xxxx