Spastic Diplegia just diagnosed (PFB 11mths). Confused and need some support. Can u help?

[Peanut73]

Hi there

My PFB is 11.5 mths (corrected age 9 1/2 mths) Born at 33wks. Two days NICU, 14 days SCBU. One day CPAP.

All was going well, albeit late physical developmental milestones: needed help to roll, sat unsupported at 9 mths, started crawling at 11 mths (but does it well now).

Had to chase up hospital for follow up appointment as hadn't heard anything since 6wk check.

I mentioned that Charlie just started crawling but stood on tippy toes when pulled to standing. After doing reflex tests and stretching his hamstrings/archilles, the specialist said "you have a spastic boy". He went on to say that he had Spastic Diplegia and would need help to walk.

That was it. We have a follow up appointment in a month.

What can I do in the interim? The specialist mentioned an MRI - is this necessary if the diagnosis has been made? I don't want to put his little body through a GA if it's not absolutely necessary.

I have been stretching his tendons daily and they do loosen up a bit but he has no balance at all when pulled to standing and doesn't like it very much.

Okay, I'm flailing about here... just looking for anyone with a similar experience. I know there is a huge spectrum of symptoms, but anything would help as I feel totally bamboozled and go from one second thinking "we can do this, we will get through this" to sobbing uncontrollably at the thought of my PFB not walking.

hiya all,
sorry did not make it back to the thread the other night-sat down for 5 mins and next thing i knew it was 10pm
peanut73- glad to see lots of posts for you- i really would reccomend swimming with your little boy as it is a totally different experience for him, you can do physio in the water with him without either of you realising that it is physio!we started taking dd to the swimming baths at 1 year old(the week that she came out of a hip spica cast-as everything she did that week was new and different for her)and went twice a week,it is only this last year aged 8 that she now only goes once because she also wants to do other activities(actually she would still do swimming twice a week given her way but with another child and working it is just not practical atm)
my dd also does riding for the disabled(i know your little one is only a baby atm but get in touch with your local centre-you might meet some local mums who can give advice and also get your name down on the 'waiting list' as rda is totally run by volunteers at the local centres.my dd entered a competition this week and really enjoyed it and gained a rosette.
have a good weekend everyone