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 didn't RTFT. Hoping for the best for your little boy xx

I'm so sorry. Wish there was something I could do other than send my love and keep you in my thoughts.

Please know that you're an amazing mummy and your beautiful son is lucky to have you xx

Thank you all. Yo answer a few questions; the drs aren't sure what type yet but think it is Krabbe's. We had decided not to look it up for the time being but well meaning friends have let us know that life expectancy is 2-8 years.

At the moment my view is that I will have my whole life to grieve and feel the agonising pain. For now I need to hold my boy close, make him laugh, make sure his pain is minimal and try to do the same for my dh. We are very much in the eye of the storm right now.

Also, it's very unlikely that there will be any treatment other than physio to manage his limb stiffness.

Ds 10months just started sitting and rolling. Perfectly normal.

One of my nephews has cerebal palsy and has two children and has a job.

He's lovely and he's never let it hold him back in life.

Just saw update op...am so sorry, you poor thing. God bless you both.

I'm really sorry I'm another one who didn't see your update(mumsnets not working properly for me)I hope you have lots of love and support around you all.x

I'm so very sorry about this outcome, OP. Praying for you.

So sorry, thinking of you all

Sorry for your awful news OP.

Your son is very lucky to have you. Thinking of you all at his time..please do come back when/if you need a vent

Have you looked online to see if there are any support groups out there for this particular condition? Or ask if your Doctor can recommend any. It may be helpful to talk to people who know exactly what you are going through? I'm so sorry - hold your wee boy close and cherish every moment x

This thread has really been on my mind since reading it. I can't begin to imagine what your family are going through. I hope you find plenty of support for you and your beautiful boy.

I think your attitude, which is to make the most of now, is a great one, however I've found that over time, your ability to feel positive fluctuates greatly and sometimes you just can't, however much you want to, I hope there are specialist charities or support groups out there for you because I have found them a huge support in my own situation as they 'get' the things other people don't get and I have found that very reassuring.

Oh I,m sorry Op have you looked on Facebook for on line support groups my son has a rare genetic disorder Facebook can be amazing for support sometimes I,m sorry I have nothing more useful to add

I have nothing useful to add, but I am so sorry x

Thank you for all the kind messages. We will look for support and I believe there are facebook pages etc. In the short-term we are enjoying our ignorance about what the future holds for us. It won't be long before we have to face the facts and once we do there is no going back.

Just please keep posting about the cheeky fuckers in your lives so I have some distraction!

You're doing well my lovely, I admire you. Please give DS an extra cuddle from Aunty Annie x

We are here though, if you have a wobble x

OP, I know this thread is old I just wondered how things are? I have a little fighter (an almost grown up fighter in fact) with a rare form of Leukodystrophy who is currently back in hospital and I’m researching to find other people who can shed light that they also have fighters with this condition who have pulled through after a bad turn. I’m preying that your little boy is still here and doing okay.

An advanced search seems to indicate she lost him not too long after the last update. 😔

OP here, sadly the previous poster is correct, my little boy lived for 6 months after his diagnosis. He had one of the more aggressive types of leukodystrophy. He is missed and loved very much. I really hope your son is out of hospital now and doing well. I know the road you are walking is a tough and uncertain one.