Recent CP diagnosis

LorriTay

Hi all.

My son has recently been diagnosed with spastic, diplegic cerebral palsy. We have had an mri to confirm.

I’m now at a bit of a loss what to do next. We are awaiting a follow up appointment with our pediatrician (no idea how long that will take) but don’t know if I should be trying to get him any assessments or private physio while I am waiting. We first went to the gp over 6 months ago and only just have the diagnosis, so I am not expecting anything to happen fast at this point.

are there groups I should be joining, people I should speak to, things I should do?

my son is walking, but falls a lot. He is worse on uneven ground and regularly needs carrying places because he is a wilful toddler who hates his pushchair, but finds it hard to walk far. We don’t currently think he is having difficulties with anything else, but would want him assessed to make sure I guess... mostly though he is a happy and wonderful little boy.

is there a well trodden pathway I should be on?

LorriTay

Oops, I think I may have posted this in the wrong place

Adrian_Scope

Hi @LorriTay, welcome to the community. You might be interested in our Navigate service. I’ve tagged in @Kate_Scope who’ll be able to advise you better and moved your post to our CP category well you’ll hopefully receive more relevant advice.

LorriTay

Thank you!

Chloe_Alumni

Hi @LorriTay and a very warm welcome to the community! I can completely understand you feeling a bit lost at the moment, it can be a real minefield can't it!? I have spastic left hemiplegic cerebral palsy myself and have just finished university and managed to move away from home to do so. Over the years I've found talking to other people with CP really helpful, it's great to find people who just 'get it' if you know what I mean. I know there are various groups on Facebook that have been really useful to me as well. It's great that your son is eager to walk, even if he can be unsteady on his feet, I hope with a diagnosis you'll be able to access physio therapy which will help to improve his walking. 

We are here if you need anything at all, your son may have a diagnosis of CP, but first and foremost they are your son and I am sure his determination will stand him in great stead! Wishing you a lovely bank holiday weekend.

LorriTay

Thank you for getting in touch (and well done on finishing your studies!)

Any particular Facebook groups that have helped? I’ve joined a few over the last few days.

Kate_Scope

Hi @LorriTay my name is Kate and I am a parent advisor at the navigate service here at scope. 

More than that I am mum to an 18-year-old daughter named Eve who has spastic diplegia and is a full-time wheelchair user- I know exactly how you feel and where you are emotionally at this time. 

Is your son having any physio at the moment at all? you asked if there is a well-trodden pathway you should be on? 
I love this- 

If I was you I would go back to the GP and ask for some referrals into services before the Pead appointment- so Physio, occupational therapy and maybe orthotics (does he tiptoe walk? if he does there are insoles they can give him to be more stable) these are the services that support your son with therapies and equipment 

It may be the Pead appointment comes through quickly and they are usually the ones who refer to all these services if they haven't already. 

How are you feeling about the whole diagnosis, I know sometimes it comes as a shock, sometimes it just reinforces what you already knew if that makes sense. 

Have you heard of the Navigate service (aptly named as we have to navigate the system)?

We are parents of disabled children or people with a lived experience of disability- we can support parents for 6 weeks over 6 sessions- its a place where you can say how you feel and ask for direction and we can hopefully support you to move forward. 

It is a telephone-based service and we call you when it is convenient for you- we can discuss the issues you face and give you practical tips to move forward- The service is for parents who have had a recent diagnosis for thier child of disability or impairment and we listen and hopefully give you some direction on the trodden pathway- the diagnosis needs to have been in the last 12 months and you do fit these criteria. 

Here is the website for you to have a look at- we can source local support groups in your area and help you in these initial weeks and months- 

https://www.scope.org.uk/family-services/navigate

good luck on your journey and I hope that you will think about using the service.


Kate 

LorriTay

The diagnosis is welcomed, because it confirms that i’m Not going crazy, and also hopefully will unlock the next steps that we need to take to help him. That doesn’t mean i’m not emotional about it, reading in black and white that your son has a form of brain damage could never be easy, and I am occasionally just crying a little bit with no warning... but I know that he is a strong, happy little boy, and he will succeed if we give him the help he needs to do so. I just want to get stuff started and nothing happens fast. 

I have signed up to the navigate service, thanks. I think that will really help me.

he doesn’t tiptoe walk all the time, just sometimes.. mainly he kind of trips over his own feet I think. Like he doesn’t pick his feet up properly.

emmarenshaw

Hello @LorriTay welcome to the community. I’m Emma one of the Community Champions. I have CP myself, it must be a lot for you to process just know that we are here should you need anything.

 Also, @Richard_Scope is Scope’s CP advisor if you need any extra assistance at all or have any questions.

LorriTay

Hi @emmarenshaw

thank you!

April2018mom

While my son does not have CP, the first time I saw him in a wheelchair I had to deal with grief and my feelings. Some of my emotions were negative others were uplifting but the main thing was I needed time to make peace. Does he do any therapies or not?
Physical therapy has been amazing for my son especially aqua therapy. Have you got referrals for the appropriate doctors yet? Orthotics may also be useful too. Also see about getting hooked up with a neurologist just in case. Good luck to you. My knowledge of cerebral palsy is limited sorry. How old is he now? Aqua therapy has certainly helped my son make progress. 
Don’t feel bad about reaching out for help and support either. Being a mom is not a easy task. I could not have come this far without external assistance and tons of moral support. Seriously. Do apply for all forms of financial assistance as well. Applying for DLA was the best decision I’ve ever had to make. Once you receive your award you can use it however you see fit. My son has other physical disabilities so I kind of understand what you are feeling right now. 

LorriTay

@April2018mom oh, thank you so much for reaching out. Yes, it does feel a little like grief.. mainly just that he is going to find things a little more challenging that others take for granted. In the grand scheme of things I know we are lucky though. Despite the scary words, what my son has currently appears to be stiff leg muscles (though the cause is in his brain not his legs). Once i’d gone away and done a little research it did become less threatening and scary than when it was first posed as a diagnosis. He may have other effects, but for now that is the one most apparent.

no therapies yet - received the diagnosis confirmation this week and waiting (possibly months) for a meeting back with the Paediatrician to discuss. We do take him swimming every week (have done since he was 5 months old) but not therapy specifically, and it’s in a warmish normal pool. Hoping that will continue to help in the interim, and if not, he enjoys it anyway.

i am wondering if we’d qualify for dla etc.. his case is very mild. A blue badge so I don’t have to make him walk/carry him as far would be helpful, but because he can walk (albeit not safely) i’m not sure what they’d say.

April2018mom

Hugs. 

I could not cope without our blue badge. Initially I didn’t want to apply for DLA but the money has enabled us to pay for a wheelchair and therapy for our son too. We also spend some of the money on home adaptations and other costs specifically related to Spina Bifida and clubbed feet. We are currently trying to figure out if he has dyscalculia or not.
How far can he walk? My first piece of advice is to take a look at the descriptors of each activity and then decide if it applies to him. Look up the descriptors online.
And I agree with you on research. After diagnosis day I left the hospital and started doing some research and talked to people. It helped me feel much better. 

emmarenshaw

It’s okay @LorriTay so glad to have you here. 

SaraC_Scope

Hi @LorriTay

Welcome to the community.  Like @Kate_Scope I am a Parent Advisor with the Navigate Service.  Lovely to hear you have registered an interest with the service.

I have mild cerebral palsy on my right side (hemiplegia) and have struggled with many things as I've grown up.  But my parents were an amazing support network as you sound like you are for your son.  I now work full time, have a family and study. Your little boy will eventually find his way and you will too.  

Best wishes

Sara