Why has my twin got cerebral palsy?

[Albaba]

I am just feeling quite down about things at the moment. I have girl twins age 2 years and 7 months. One of whom is completely "normal" and the other has cerebral palsy.

I was in the park with them yesterday morning and another mummy who I know briefly came in with her twins who are a couple of months older. She didn't even have a pram with her for them!! They were running around and up and down on all the play equipment. They just seemed so much bigger and more mature than my girls. Mine seemed quite babyish in comparison.

Then another woman came in with twin girls in a pram. They were maybe a year or so younger than mine but they got out of their pram and started running about. I just don't understand how everyone else can have "normal" children and I don't including all the twins I know. I was so jealous.

It is so hard. My "normal" twin now doesn't want to use the pram and wants to walk along beside you. My other twin then starts crying "me want out too" which breaks my heart because she can't walk. It's just getting harder the older she gets. It's more obvious that something isn't right with her. My niece who is 1 1/2 younger is now walking which makes me feel shit. She is the only child in her nursery group who can't walk by a mile. It means she can't fully join in with all the activities. Especially now in the summer when they have them outside doing activities.

Don't get me wrong she is making progress but it is painfully slow. I was looking yesterday at pictures from last summer and she was pushing a weighted cart in the garden and I was thinking have we really made much progress from there?

She can walk albeit awkwardly holding an adults hand. She is in piedro boots. Now its coming in to the summer they are clumpy and make her feet sweat but her physio says she needs them for ankle support. She has just got afos this week which we are trying on her. They have gone down like a lead balloon!!

We have been going to physio now for over a year. She likes her physio and she thinks she just goes there to play games. It is draining though and time consuming for us. We were so grateful though when we got the physio sessions at first but we didn't think we would still be going over a year later and her still not walking. We had set ourselves goals of independent walking by second birthday then Christmas which have long been a gone and still no sign of independent walking.

I think it is so hard because she is a twin and I have a direct comparison of what she should have been. Everything came naturally to her twin while my other daughter everything is a struggle for.

Don't get me wrong. I am not usually a moan. I just get on with things but I don't think anyone including grandparents realise how hard things are for us. I tried yesterday talking to my husband but he is like "its just how things are and we just have to get on with it and make the best of things". It doesn't make it any easier though.

Hi and welcome to the board, I dont have much experience of CP but wanted to say sorry you are feeling so low.
It must be very hard seeing your more able twin making much faster progress than the other one.

I have no advice for you other than to say that there is a long term thread running somewhere on here for parents of children with CP so you are definitely in the right place for support.

Take care, be kind to yourself and try to celebrate every tiny step forward both your twins make.

Good luck

Oh sweetheart! It is so much harder when you have twins and can directly see what they are both doing at the same age, I know a bit as I have 2yo twins. Both are 'normal' but the elder of the two is a lot slower at doing everything than her younger brother. But she was a good lb lighter at birth. Although they were classed as prem at 36+5, dt2 has always met or surpassed his age milestones whereas dt1 goes way past the expected age on most things - her size and behaviour at birth was apparently much more like that of a 32-33 weeker. Her speech is appalling for a 2yo, but no one else worries as much as I do. Even dh! Although we also have an older ds who is much more a worry to both of us.

I also understand the one twin wanting to walk while the other can't. Dt1 is hypermobile, I believe probably she probably suffers hypermobility syndrome rather than straight forward 'bit more bendy' but I've got to wait a while longer before persuing it. However, it means that she wants to walk with her brother when really she needs to sit in the pushchair and not overdo it, otherwise she is wasted for the following day and then is incredibly grumpy all day and wanting to lay down and/or sleep. She escaped piedros but needs more supportive shoes than summer would sell!!

I've no suggestions as I do just strap her in and give her a dummy to avoid as much of the screaming as possible .

Try not compare them to other children either as that will make them seem even further behind than they are - easier said than done. I don't know if yours were early or particularly premature. But I've a friend with dts a month younger than my two, plus another with a little boy a month younger. In both cases you would think all the children were older than mine. I keep telling myself dt1 is working to her own pace and it suits her. Dt2 is flying ahead and that's because he copies his older siblings (4&6). That also makes a difference with younger children! They seem to grow up quicker because they have older children to constantly copy.

I don't think the menfolk ever seem to worry in the same way that we do either, we see to the future and think of what they may or may not achieve. We have all those hopes and fears of the future wrapped up in what our children are doing now. Whereas the men seem to look at the present and say we are further on than we were before.

Sorry I've no advice. But I didn't want you to think you were all alone with your worries for yr children.

Have bumped the support for parent of children with CP for you.

Good luck

Hi, sorry I meant to reply sooner but life got in the way. As you may recall ds has cp, is 4 and still can't walk (although he is getting there). I do know exactly how you feel, and I still have days where I feel just like this, but they are fewer and further between now. I have largely come to the point where I know I can't change it so I do just get on with it. We have the same set ourselves goals, by 2, by 3 currently I am hoping for by school but we will see. Also ds can do noticeably more now even if independent walking isn't one of the things yet. His physios think he could walk but currently chooses not to. They also don't think ds would ave been walking sooner if he'd had physio daily.

Funnily enough we hardly use the buggy (and don't have a wheelchair as about a year ago we switched onto a tomcat trike, and this is what ds uses when his nursery go on places, and therefore he keeps up, (and in fact goes faster). The trike is also very good for him, could you try something like that? The other children all love his trike and nt children always want a go. He can also run and play something approaching football with his kaye walker. Yes not like his friends, but they don't always notice. Would doing that be practical even a bit (I.e drive to the playground then have a walker)?

Also are ther other things you could try like swimming, I appreciate with twins you might need another adult but again sometimes I find doing something else helps especially if I know it's good for ds. In my case doing something helps, but tbh so does having a good moan.

I do wish it was easier, I do think it is unfair, and regularly wish ds didn't have cp, or that his cp was milder than it is, and I wish I didn't think that so I am not trying to belittle what you think and I have no idea about having twins. Hang in there.

Hi
I don't have twins but I have lots of children!
My youngest is 2yrs 7mnts too and has CP.
I'm lucky in the fact that all she wants to do us walk like her siblings which is her motivation to do everything.
We're collecting our AFO's next week and also fundraising for SDR but in the meantime she walks with her walker.

I realise it must be hard having twins but you need to let your non CP one walk and as hard as it is your other will need to get used to the difference.
My daughter knows she's different and I'm lucky she's bright, she tells people she was very small when she was born and her get got hurt so she's got bad legs.
For months I've been asking my Physio for tripods but she ket telling my daughter's not ready. I bit the bullet and bought some and she instantly started using them. The Physio probably just underestimated my daughter's desire to walk. OK she's not ace and can only take a few steps with them but she is desperate to walk.
Obviously all children are different but maybe the fact that your LO with CP wants to walk like her twin will be what gets her to do it, all you need to do is find a way be it a trike, walker or wheelchair.
Cerebra made a wheelchair for my daughter so she could play with her brother who strangely says he wants CP so he can have a wheelchair & walker!
I'll try to get a link for her wheelchair now so you can see it.

If you scroll down you should see a video of my DD in her wheelchair.
www.facebook.com/pages/Help-Imogen-walk/244937325657811