Support/information sharing thread for parents of children with Cerebral Palsy - Part 2

[Galena]

Can I start the new thread by saying, welcome to any parents of children with CP - any age, type, etc.

Looking back at the last thread, we have discussed treatment options, chatted about other peoples' perceptions, celebrated milestones, given support, and generally been lovely!

Come along in!

DD is 3.9 with Spastic Diplegia. Independent walker and attitude the size of a planet! We are considering SDR for her in the next year.

I can't believe I fessed up in public about my singing..... Don't believe it truly helped, but made me feel better and she enjoyed it!

The massage and just gentle stretching I do believe really helps. Little and often though, and not if she wasn't in the mood (worked with her rather than against). Just a couple of mins here and there - like when getting dressed and gently stretching arms into tops, or during nappy changes with gentle leg stretches. I'm no pro though, I just did what I thought would help. I think as long as you keep it gentle, it can't do any harm.

Thanks everyday for the sticker idea . We are still struggling with DGSs right hand. We do the ball throwing and now he has a baby brother he adores and who adores him, its put toy in right hand, pass to left hand, and give to baby brother who's sat in a doughnut slowly filling with toys til there's no room for him! Babies are the best toys around

Hi sneezecakesmum. OT also advised to also put the sticker on the back of the left hand, to encourage DD2 to peel it off using her right hand. This worked too.

It's just lovely seeing siblings playing together, mine are the same, awww.

Hi all. Today will be day 3 post SDR for dd. She's doing really well so far. Glad to hear ds is too Fizzy :)
Hope something can be worked out re his meds. dd is still having epidural catheter but it comes out later today. Dreading oral meds - she's not obliging usually unless it's calpol. She threw up last night. No spasms yet. Physio begins today (we're in St Louis).

Inhibernation. Wow, fabulous. It so exciting this surgery is now an option for SD. Lots of hard work still ahead, but the goal will be so rewarding.

My daughter just turned 2 has mild cp affecting only her lower limbs. She is a twin, born premature and her sister is not affected. She is smart and has lots of words so I know that her mind is not affected. The issue is that she is lagging further and further behind her peers. This was high-lighted this morning when I was at a crèche with children her age and younger. All the ones her age were running about and playing while she just sat on the floor and cried when I tried to leave her. She can be very clingy and doesn't like change or new situations. She seems quite babyish in comparison to the others of her age. Even ones who were considerably younger were walking or trying to walk and doing much more than she was. I don't want to hide her away at home but situations like this really knock my confidence.

My daughter is still not walking despite going to weekly physio now for months. She has been fitted for piedro boots and we are just waiting for them to arrive. She can sit unaided, pull to stand and cruise while holding on to furniture but if you pulled her to stand holding her hands she could only manage a few seconds. I am disappointed and frustrated by her lack of progress.

The physio seems to think her main issue is weak ankles and she isn't overly tight and doesn't toe walk which is good. Every week we go to physio and I just thought by now we should have made more progress. I am the only person I know with a 2 year old who doesn't walk. We are quite private people and haven't made her diagnosis public and had wanted to keep it like this but I don't know how much longer you can fob people off about her not walking.

Is there anyone who had a child similarly affected and did they walk and if so when? Thanks Albaba

Hi Inhibernation sending you lots of best wishes, , and . Glad to hear your dd is doing well. I hope the meds go better than you expect. We're all rooting for you.

Albaba - my DD is similar as not really tight in her muscles and is mostly low tone and weak joints which all affects her balance. She did 'walk' a bit earlier (20 months) but followed the same trajectory as your DT - sitting, cruising etc. She could walk before she could balance so she would cannon around the room, grabbing onto surfaces as she couldn't stand up unaided She walks pretty well now at 6 yrs old although we're still working on the balance.

It's a frustrating waiting game and I know how you feel with the toddler groups. I hated going to groups with kids the same age or younger and the differences being so obvious

Hope all going well Fizzy..

.. sorry and meant to add Inhibernation too

Hi Albaba. Firstly, you are doing a fantastic job. We each have great kids that unfortunately have challenging circumstances, and you cannot underestimate how well you are doing.

We have some similarities to you and some differences. Take encouragement from your DD talking, that's fantastic. Our DD2 (2YO + 3months) doesn't yet but she's desperately trying. We too think our DD2 has excellent cognitive skills and understanding, but she is so frustrated at her severely limited oral communication. Her non-verbal communication (facial expression, pointing, grunts/shouts) is excellent though.

At about 20 months our DD2 was just pulling up to stand, and doing some furniture cruising. It started off like yours, slowly and for short periods, but DD2 gradually built it up over time (with some help of strategically placed chocolate buttons on the sofa, just out of reach, to encourage and reward movement!). Now 6 months on, and she's almost independent walking (can slowly walk across living room but can't run, and can't sustain it for very long). So she can't run with the other kids in nursery, but she can hold hands and walk between play areas, and so joins in.

Her big sis is in Y1, and all the playground mums know about DD2's diagnosis and they are truly lovely and supportive. They celebrate with us any little success DD2 has. Being open with people really works for us, and I'm by no means extrovert. I think it would add to my stress if I had to work at keeping a 'secret' along with dealing with everything else. But I appreciate we're all different so you have to do what works for you. I have found that people don't judge us, they are supportive.

Occupational Therapy is worthwhile if you can get a referral from your physio or pead. They will help make environments accessible but there is usually a waiting list. I have a small kids chair (from ikea) that I manoeuvre around while DD2 is playing, so if she goes towards the play kitchen, I'll place the chair behind her there and she can sit while she 'cooks' etc. Has your physio mentioned a Kaye Walker to help your DD's mobility? If she's pulling to stand and cruising the furniture, she may be almost ready for a walker?

Please don't feel alone. There are a lot of us out there with youngsters struggling to walk, and there are some really lovely and helpful people on this thread. Stay with us and let us know how you are getting on.

Itsnothingoriginal You are so right! i think everything is 'fine' until I see DD2 alongside her peers and than I realise how far behind she is .

But it's very encouraging for us with little ones to hear that the 'schoolies' are doing so well , and that our kids do continue to develop even if at a different pace to the typical. Like you say though, it's a horrible waiting game isn't it? I remember my paed saying we won't really know until DD2's about 5YO what her outcome is likely to be, and in the meantime to 'work on maximising her potential'.

Really glad your 6YO is doing so well (and secretly hopes my DD will follow in your DD footsteps)

ha ha, no pun intended (footsteps)

hi everyone

I've been lurking on this thread since we got DD's diagnosis last week. Everydayaschoolday your last few posts have been so encouraging to me.

Our heads are still a bit all over the place and we're not sure what to do about telling ppl. DH doesn't want to tell anyone and is internalising everything where as my DF thinks we should just tell ppl. At this point only the family know and 2 very trusted friends. However I had an upsetting situation on Saturday...

The younger sister of a good friend (she's 26 and a bit immature) from here on we'll call her FrSis for simplicity.
FrSis: she's like a fish!
me: a fish?!
FrSis: yeah when they're out of water
(dd is wobbly and very excitable so finds it hard to control her limbs and trunk)
Me (as non confrontational as poss): don't call her that
FrSis: I associate everyone with the animal they are like
Me: so what animal would you be?
(attention was drawn away from dd as the group related eachother to an animal)
after protests from others about dd being labelled a fish. ...
FrSis: ok she can be a koala. Because she's so cute.... and you can be a mummy koala.!
FrSis: a Koala-fish!!
Me: she can be a koala NOT a koala-fish

Did I handle this right? obviously she doesn't know about DD's diagnosis (and thinks the wobbliness is normal for a baby) I was trying to keep things light but firm. I know she intended it to be playful but I was a bit upset that she pursued the fish thing even after I expressed my displeasure. DH would have been furious, I don't think I'm going to tell him

Hi goneHaywire I think it can be really hard when you first get the diagnosis as there is such a lot to take in. Take things at your own pace and make the decisions that are right for you and your family. You certainly don't need immature labelling games at this difficult time.

However, friends and family can be at a disadvantage if they are not aware just how insensitive their 'friendly jibes' are, since they do not know about the diagnosis.

I have found that people are more careful and considerate in how they ask about DD2 because they are aware of her condition.

goneHaywire - sounds like a difficult one as she's obviously quite young and clearly unaware of what she's saying so might be better ignored! I've found with some people it's not worth going into any detail because they just don't 'get it' or have the interest in learning more about the condition. I've definitely been on the receiving end of very ignorant comments like.. 'is she all there then?!!' which have been really hurtful.

Everyday - I'm really pleased to give others a positive story being a bit further down the line. DD has had to work really hard for her gains (as do all our lo's) but I would never have dreamed she has achieved what she has done given the dire predictions we had at the start of her life

I keep going through a cycle of feeling like everything could be ok.... Then thinking about the future and freaking out.

Hi guys. We are day 7 post op. Still no pain meds, Gabapentin was stopped today also. He's managed to walk with parallel bars, 6 lengths and get himself into sitting up from lying down. Think he's a trooper. :)

Feeling a bit crappy that I can't manage with my 2yo here too and havingt I send her to my dads but hey. We are discharged on 11th October, 11 sleeps! :)

Hey Fizzy that's great news! Seriously 'well done' to your ds, a trooper indeed.

You're doing great too. That's far too much to juggle with a 2YO in tow - good call for her to spend a little time with granddad - they'll have a great time together. Allows you to get some rest and to be there for ds. But do get some rest, it's important for you and your kids. Roll on 11 sleeps! Hang in there!

Your ds is doing great Fizzy :-)

dd found physio too much at first this afternoon (pretty good morning session) but got going half way through and rode the trike herself. Not bad for day 4 :-)

I feel for those who are early on in the journey. It's hard to accept the diagnosis yourself let alone tell others. We decided to tell people early on. We needed them to know so they could support us and part of supporting is knowing about the condition. At first it was annoying having people ask whether her learning was also delayed but I'd rather they ask questions and learn more about the variability of CP than make assumptions. People have on the whole been very helpful and supportive.

Good luck with meds and physio, fizzy and inhibernation. It's really useful for you both to keep posting. We are still thinking about sdr, and waiting for an assessment. Dh taking ds for a consult on SPML today too. Just trying to get more information really.

We also went down the route of telling people. Initially family and friends, and I remember emailing my nct group, who tried to help, but who I have now lost touch with (fair weather friends with a different set of experiences). I wasn't that bothered to be honest. All the parents at ds nursery know, and it has been easier to deal with the occasional insensitive comment when I can say well ds has cp. mainly the nursery has been fantastic. Now I also tend to tell clients if it comes up in conversation when I am out for a medical appointment, and they are fine. I also told my firm when I applied for the current job, and again it was easier to get agreement to my very flexible working requirements when they understood why. But that is what worked for me, and it may not be for everyone. However as ds uses a walker and can't walk independently at 3.6 then everyone knows there has to be something.

Inhibernation, where are u? we are at Frenchay.

DS currently in serial casts too which makes life difficult. Day 8 today and he's using a forward walker ??

So proud of him. SDR really is worth it muchado the difference is astonishing!

St Louis. dd needs serial casts too - may also need heel cords (PERCS) but will see if casting helps

inhibernation I think we may know each other via FB?

so today DS has walked over 50m in the forward walker!! Amazing for a child who only started with it yesterday!! :O

Can't wait for tomorrow! :)

We too have been open about Will having CP. Tho I found it hard to find a support group as I was so young when I had him (18) and most other families with kids with extra needs seemed much older and I couldn't relate to them easily. That sounds ridiculous now but that's how I felt back in the day. But yesterday was 5 years since will was diagnosed.

It was a really horrible day. But the difference in him is amazing. I could burst with pride over every achievement! :D

Hey Fizzy and Inhibernation we're all watching with interest and wishing your kids well. They both seem to be doing fantastic Keep us posted when you can.