Cerebral palsy CP

[Lsales]

I'm a mum of 13 months old twin boys. One was diagnosed with CP yesterday!!! I don't know what to do from here. I feel like my world is caving in on me!!! We still don't know how severely he is affected. But it is in both legs and probably in the arms too.

Where can we get help? Can we get support for the other twin when we have to go to all these appointments?
Do I ask my health visitor? My GP?
I JUST DON'T KNOW WHAT TO DO!!! Please help.

Hi Lsales, Sorry to hear about the dx. I have an almost 20month old with CP so I know what you are going through.

There is a long running thread by parents of children with CP on this board. The Old Thread is here and the current thread is here. There is a lot of useful information on there to guide you and tell you things which you can do at home to help. If you post on there, there are posters who have been there longer than I have and importantly wiser than me who will be happy to point you in the right direction.

Who diagnosed the CP. I don't know how much involvement has been by the proffessionals so far, but the list of things you can do right away would be.

1. Contact local Community Paed

2. Referall to Physio via GP or Paed. In our area, the referall has to come though Paed. (This will be the most important thing you can do for your little one. The physio alone has made a huge difference in how much he has progressed in the last year)

3. Referral to Occupational Therapy

4. Refer to Speech and Language Therapy (They will also cover things like feeding etc, you can self refer to these, some areas run drop in clinics.

Thank you. It was the local NICU paed that diagnosed him. My son has been seen by two other paed and a physiotherapist in the past 3 months and this was the conclusion.
I was wondering if you know of any support groups (maybe on Facebook) specifically for parents of kids with CP. Our twins were very prem and using those groups helped me get through the though times. I'm hoping this may help again.
Thanks again

Sorry what do you mean by occupational therapy. How will it help my son? What do I ask for to get referred?

Hi, I don't personally use any support group apart from the threads listed in my first post. If you click the links, it will take you to those threads.

Your paed will be able to refer you to an OT. They can help with a number of things, such as sensory issues, fine motor skills and in some areas you have to go through them for any any kind of specialist seating for feeding/baths etc so good to get in touch with them early.

My DD (2.9y) has CP and was diagnosed nearly a year ago though we knew it was a possibility from very early on. When diagnosed it was in legs and left arm; now it only seems to bother her lower limbs. The CP threads Dev9aug mentioned are brilliant, really sanity saving. Scope also has a forum and I've found the Bliss boards incredibly useful too. There is a CP thread runnning there too if you trawl a bit.
If no one has offered any support, I would ask your HV and if they profess to know nothing try your paed, GP or any professional you come into contact with. Someone will know something and be able to help, it just can take a lot of badgering. Our saviour was our physio who kicked a lot of people into action and wangled us access to some groups. Sure Starts can also be good places; seem to be a bit hit and miss but worth trying. Where I lived previously there was a designated member of support as SEN support for families and some "secret" invite only groups for SEN children and/or families who had been through a difficult time. The Scope website can also give links to what is in your area etc, otherwise a bit of googling should unearth some things. In my (limited) experience places offer support to the family as a whole from activities to respite depending on what is on offer around your area.
Lastly how you're feeling in entirely normal. It will get better; there will always be good days and bad days but there is so much support around to help you through the rubbish bits x

Thank you so much that is so so so helpful. We went to see the physio today and she really helped though it's all a little daunting. Xx

It does get better but it really hard at the beginning especially after nicu and that roller coaster. You just start to get to normal and then bang!

I mainly find info here. I am still looking for local support but never found it. Ds is 3.3 and has spastic diplegia (legs) also diagnosed by nicu paed (in a Wednesday follow up clinic wonder if you live near me?). When ds was 11 months.

Physio great but she retired last year. Slowly getting to like new physio.

I don't do Facebook, but sometimes look at scope, bliss and bobath (they have Facebook). But mainly here and ask around

Oh and apply for dla, as soon as possible.

Hi Lsales. Is it just one of your twins who is affected? I am unfortunately in the same boat as you too. Have 21 month old twin girls born at 33 weeks. Hate to use this word but one is completely normal and the other one has difficulties. She has been late in meeting all her milestones. Still not walking at 21 months. Had a Mri done which unfortunately didn't come back clear. She has been diagnosed with mild cp, development delays affecting her gross motor skills and hypertonia. She is weak in the lower half of her body. Have been going to physio now for months and it has helped her improve albeit slowly. Also have been referred to orthapedics for special footwear. People tend to compare them being twins. It just seems really unfair that ironically the bigger and stronger twin has problems while the smaller one has escaped unscathed.

hi
I would like to meet other mums who have a baby with cp. my ds is 18months and has spastic quad cp. I live in leeds . have posted on a couple of threads so hope its ok to post here, thanks

Hi, my son has hemiplegic cp. one side effected (right) caused by left side stroke as a baby. I think the one thing I have learned is that no two cases of cp are the same. In my sons case the "hidden" effects are worse than physical but each child differs. I have found boards like this very supportive!!