Cerebral palsy diagnosis

[Mummy1234567890]

Anyone who has a child with cerebral palsy could you tell me about your child and abilities. My daughter was diagnosed yesterday, so just looking for some real life stories to read. Thanks x

How old is your DD?

I am here for other reasons so no direct experience, but didn't want to read and run. Good friends were told when their DD was a baby that there was brain damage showing on scans (she was very premature) and she likely would have CP, but at 5 now she has no noticeable symptoms. So when your child is really young it's very hard for them to tell how their brain will develop and what impacts there may or may not be.

You might also like this Ted talk by Maysoon Zayid who is a stand up comic who has CP: www.ted.com/talks/maysoon_zayid_i_got_99_problems_palsy_is_just_one?language=en

Generally I've found YouTube a brilliant resource for hearing from adults with autism (my daughter is autistic) and I would imagine there will be lots of vloggers with CP too so it's worth having a look. It's not a crystal ball but it allows you to see lots of different experiences and personally I found it very reassuring that despite the challenges DD would be OK as long as she had our support and love.

Thank you for the reply. Shes 13 months old, she can shuffle and sit unaided but cant walk or crawl. She will have all the love and support in the world, getting my head round her diagnoses now was just such a shock. Thanks again for the reply xx

Hi there - we have just this week had a diagnosis for our daughter for Hemiplegia - a type of cerebral palsy that affects one side of the body. We have thought she had this since she was six months old and she is now 16 months so in some ways it was a relief to see the brain scans and be told exactly what it was and that it is nothing progressive etc. They think she had a bleed on her brain earlyish in the pregnancy. I feel very lucky as the neurologist says where the damage is will only affect her motor skills not her language or learning etc. I have moment of feeling sad but I'm trying to remain positive. We have physio plans in place and have started a weekly session with a local conductive education centre which is brilliant. Try to keep positive as everyone keeps telling me that cerebral palsy is not really a diagnosis as there is a huge sliding scale of its impact and no two kids will respond in the same way.

Sorry just reread your initial question and you asked about abilities so my little one is just nearly 17 months and she can now stand up off the floor on her own without holding anything and balance for a few seconds before she falls down. She can walk when pushing a walker and can climb stairs. Her type of CP affects her right side only so her balance is her biggest challenge. She doesn't use her right arm and hand much at all and won't reach for anything with it and her right foot turns and she puts weight on the side of the foot so doesn't put her foot down flat. Do you know where your child is affected in the body?

Ps sorry me again lol. My little one never crawled as she can't weight bear in her right arm so she started 'bum shuffling' whereby she drags her body with her left arm. Don't worry too much about timescales and what they do when. Do you have physio lined up?

Hey. Thank you for the reply. My daughters cerebral palsy effects her legs, I think her left is worst but not seen a physio yet. We start physio on the 26th July and after that I am going to start some private physio or conductive therapy too. My daughter bum shuffles too, as she cant bear weight or stand yet. Shes is so happy in herself though and I just want to help her lead the best possible life xx

Well it sounds like you are doing all the right things!!! The conductive education sessions have been really good so great you are going to look into those.

My daughter who is six now was diagnosed as having cerebral palsy at birth. She had a neonatal stroke.
She has right sided hemiplegia, which means her right side is weaker and tighter.
She never crawled but pulled herself along the floor with her left arm, like a commando crawl.
She is in mainstream school and doing very well.

If you have any questions I would be happy to answer.

Hi OP

I know from the SN boards that CP covers a whole range from people are very severely disabled more to my level. This is only my personal experience.

I’m an adult with CP. from what I can tell my parents just took it slowly because the condition is so variable. I have hemiparesis on the right side with weakness down that whole side. I went to mainstream school. My walking is slower and little things are frustrating like buttering things, I can’t do laces. I get tired.

Mostly though it’s fine. I have partial sight which may be related or not. It means I can’t drive. (I have some other medical issues). Intellectually I’m fine. I work full time. I live independently but do need practical help with cleaning my home/ironing.

It took a while before I walked, I don’t know if I crawled. My speech was very delayed, but then came through fine. OTOH I never got to grips with laces/elastic stretchy ones so stick to other shoes, when in theory I should be fine with laces.

From seeing how it affected my parents.

• Try to make physio as much fun as you can. I might have a bit more function if I pushed harder, I had a formidable physio but wanted to be out playing.

• Take things one day/stage at a time.

-Get any support you can if you need it. My parents are medical background so that bit was fine, but didn’t know the education system.

• come back to these boards, I see a lot of support on here.

@melmo26 pleased to hear about your daughter doing so well. Does she have 1-1 at school? The consultant said my DD will need it. Is your DD walking? How does she find it if she is? Said DD will walk but will need alot of help. Thanks for replying xx

@Medicaltextbook thank you for the reply lovely to hear stories with such positive outcomes. Thanks for the advice, I will certainly try and make physio as fun as I can for her and take it one day at a time xx

Hi mummy

Yes my DD walked just before she was one but we were told it was very unusual for a hemi child. She doesn’t have a 1-1 at school. She hasn’t needed one.
She walks but with a leg that drags/ points down. She wears an orthotic foot splint on her right foot.

Can I ask which Cerebral Palsy she has been diagnosed with as there are a few types.
My daughter has hemiplegia which affects one side of the body.
There is diplegia which affects the legs so will make walking harder.
There is quadriplegia which is all limbs.

Each child is different tho and manages their condition differently. My daughter has next to no use of her right hand but has figured out ways to do tasks that require both hands.

At the beginning it is very hard to wrap your head around the diagnosis as you just don’t know what’s going to happen. Please take each day at a time. I know it’s hard but I promise it does get easier

She has diplegic cerebral palsy so its is mainly legs affected. She shuffles but cant crawl, she can only sit if placed in sitting position. Thank you for taking the time to reply so nice of you. Just takes some getting my head round but will take it as you say one day at a time xx

I understand how hard it feels for you right now. I actually joined this site when my daughter was a few months old and posted a thread myself for help and advice.

I’ve realised over time that no one could predict what the outcome would be for her and I would just have to see how she grew and developed. It really wasn’t easy at times and I have panicked more than a few times.

I know a few children now with CP and they each have their own ways. One girl with diplegia can walk short distances and has a wheelchair for longer. One boy who is having Botox on his legs to help stretch the muscles plus a lot have orthotic shoes or splints.

My daughter also has 2 hand splints. One soft one for day and a hard plastic one for night time.

Once you have seen the physio you will know a little more of what you can do to help your little girl. And if you ever need to chat or ask for advice, you know where to come. :)

Hey @Mummy1234567890

I just wanted to reach out as I am at the beginning of this difficult journey. I have always felt that something was wrong however the HV and GP always dismissed my concerns. DS is now 2 and we are only just getting physio which starts tomorrow, so amazing that your little one is getting help a lot earlier. I have always feared CP and until now could not bring myself to say the words..

I also think we turn to sites like this because I found the doctors to not be very open about it. I had to directly ask the Neurologist could it be CP for him to tell me that likely, yes. We have been told that we won't get a diagnosis until he is 2.5/3 years old. I am so frustrated and at my wits end worried sick but I know it won't change anything in the long run.

I wanted to follow this thread, as we have our first physio session tomorrow so I am hoping to get a clearer idea of whether DS will ever walk. I have spent hours researching and have completely stressed myself out since the first appointment which has been going on for months. But actually there are so many forms of CP, I just wish the doctors had been more straight with me about the possibilities as I knew nothing about it and so assumed the worst, spent days crying my eyes out when actually the outlook is not always so bleak. Just today, someone in the park asked me if my son has CP and I completely broke down, the worst thing is not knowing so I am so glad that you have got an early diagnosis.

DS commando crawled at 10 months, crawled properly at 13 months, didn't start cruising until about 15 months but has never managed to walk, it seems to just be the left side and legs, he seems fine so far in every other way and all we have been told is he has very stiff joints.

We haven't officially had the results back from his MRI yet but on first sight the consultant thinks there is no obvious damage etc, although we have been warned that this does not mean there never was any damage. It is possible a brain injury from
Birth or whatever has healed but can later cause CP.

I've been looking here to see if anybody else has been through this and child has started walking after age 2? My worry is that he's reached his full potential mobility wise now because of his age and will never walk, all the other posts seem to be about much younger babies. I also have a three month old so I am finding the whole journey extremely stressful with all the hospital appointments etc 😣

@thejoysof2boys my 14 month old still isn't crawling she only bum shuffles. At 2 there is still so such time to progress with physio. We start physio on Friday so I am hoping we will have more of an idea of what's what then really. I can only imagine how hard it is with a baby too. Big hugs xx

Hi @Mummy1234567890

How did you get on with physio?

We have now got CP diagnosis after some not good results from the MRI.

I am sad but just glad we can help him in the best way possible now, instead of wondering will he won't he so onwards and upwards now. Trying my best to remain optimistic.

Hope all is going well for you and your little one

My daughter has left hemi, its all I know, she didnt crawl, pull to stand, walking was way delayed, been having physio since I can remember, I blame the hospital, I had good pregnancy, she wasnt premature, nothing showed up on scans, the birth was long winded and I dont think they moved fast enough

Do you guys get any disability support btw

Hi @user1499288566

Interesting you should say that, as that's something I found difficult to accept. All the cases I've read have obvious causes, born prematurely etc or with issues at birth. My son was born at term and as far as we knew no issues. We had similar situation as you though that I was left for too long, and pushing for 4.5 hours to the minute he was born. We will never know for sure the cause and that's really hard.

We are not claiming any disability support at the moment as he's only just been diagnosed but I believe you can depending on the severity? Other users may be able to shed some light on that better than I can.

I wish I could prove it I'm so angry , and im doing it alone other half never hear works away, I'm close to ending our relationship, didn't sign up for this, do you guys find it hard

@user1499288566 I'm also doing it alone so know exactly how you feel

Sending you hugs and best wishes 🤗

How do you cope ? I have a partner but he never here, its wrong isn't it under circumstance, I need support

@user1499288566

Honestly I don't know, I am just on autopilot I think day to day. Even when I lived with my partner he wasn't very hands on either so I guess I don't know any different. Being on my own now hasn't really made a difference in that respect.

Maybe you could try finding some local groups particularly ones for children with special needs so you can meet other parents going through the same. You're not alone there's always someone that can help. Your local children's centre would be a great place to start if you're not already registered, I have found them so helpful xx

My daughter was delayed walking, talking, she doesn't use her left arm/hand, her left leg is weak, she has tumbles due to this , she gets tired alot faster then others ,frustration plays bit part too