Talk

Advanced search

Here some suggested organisations that offer expert advice on SN.

Mild cerebral palsy?

(6 Posts)
Chicci1 Wed 09-Nov-16 21:48:07

We've been waiting four weeks for MRI results for our two year old daughter. Every time we phone (every day) we're told that the consultant will be in touch. Is no news bad news? We have ourselves convinced that it is mild cerebral palsy - she didn't weight bear at all until 18 months and while she started walking when she turned two, her left ankle is noticeably very weak and completely turned in. We're just at our wits end. Am I being unreasonable in expecting an answer? Is there any merit in going to the hospital and insisting that I'm not leaving until they tell us the MRI results?

StillMedusa Thu 10-Nov-16 19:11:42

I can't see that it will do any good to go to the hospital.. it is unlikely you will be seen and although it is distressing to wait it is not urgent..it really isn't.
If your daughter has mild cp.. then she has mild cp..there is no magic cure, and at best she will get an orthotics referral for insoles, boots or a splint, and maybe some physio. A diagnosis will give you a label but it may still not answer why.
Also you can have severe cp and a perfectly normal MRI (my friend's child has no muscle control whatsoever..severe quad cp after being born at 24 weeks, tho perfectly normal intelligence... her MRI is absolutely normal) or you can have an iffy MRI and no problems. It's not as exact and clear cut as you might imagine.

I'm sorry that sounds harsh but it's true.. and no one is holding 'bad news ' from you... the system moves slowly.

(I have a son who didn't walk until well over 2, wears splints and has special needs so I DO understand the frustration !)

whereonthestair Fri 11-Nov-16 16:54:34

I agree with medusa. What does your daughter need now and will the MRI help get it, that's the question to ask. Eg physio what do you get, what would a diagnosis add, orthotics, ot, Etc. If you get physio (in this area with mild cp at 2 you'd get about 12 -18 appointments a year, with exercises to do at home, maybe orthotics, maybe piedro but that's it. I don't mean to be harsh but you don't need the MRI for the diagnosis or most particularly the support.

Ds has CP. He first had an MRI 3 years after he was diagnosed. It didn't change anything.

whereonthestair Fri 11-Nov-16 17:09:04

Oh but no, you are not being unreasonable in expecting an answer but driving yourself mad won't change this one. Keep phoning, keep asking, but make friends with the consultants pa, and make it easier for them to give you an answer than not to. Persistent but polite, friendly and nice on this one, however cross you are!

Chicci1 Fri 11-Nov-16 17:22:43

Thank you both. You're absolutely right and it's what I needed to hear. She does have piedro boots and physio but we have to pay for them ourselves as where I am, you are not entitled to any support without a diagnosis. Thanks again.

mumsnit Fri 11-Nov-16 19:01:35

I do completely empathize about the stress of waiting for results. We only waited a week for my DDs results and that was the longest week of my life sad

Agree they won't tell you everything as you already know but hopefully will at least open doors to support and therapy if it does eventually lead to a dx. It's worth being aware that even with the MRI they might not diagnose CP straight away. My dd had obvious damage on her scan at birth but no official dx until 8 years old (mild CP) as they wanted to watch and wait to see how things turned out.

I hope you get the results soon x

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now