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.

X post sneeze :)

for little Melmo. Congratulations on your first steps, this is just the beginning of a fantastic journey for you exploring the world x

Squeezy hugs back at Melmo too x

Thanks everyday, (flowers)

Amazing little melmo. Congratulations to all. It's a huge leap forward I bet you won't stop grinning for days.

Sit back and have a ...then get going again

MELMO, firstly congratulations on your dd taking her first steps. Can I just ask how old she is and how she is affected?

My dd is 2 years 5 months. She is only supposed to be mildy affected with diplegia affecting her lower legs only. She is not tight. Her problem is more low tone and weakness. Also both feet roll in. Anyway we have been going to physio weekly now for a year and doing her home physio religiously everyday- standing frame, stretches and games.

I think something has finally clicked with her. She can now do about 15 seconds of unsupported standing. Physio thinks that she is not far away from taking her first unaided steps!! She has piedro boots and is on the too long waiting list for afos. Though physio is hopeful that she can have her walking before she gets them.

I just want her to able to properly join in with other children and walking is a big part of that. She has a twin too who has been walking for months and is now running, jumping and climbing! It's hard not to compare her to her sister.

Hi thanks sneeze iv not stopped grinning, she keeps standing and taking 2 steps before falling. She is still doing her 1 hand bum shuffle to get places quicker but is trying.

Hi albaba great news your dd is now standing. :) it must feel like a great achievement, I remember your previous posts about your dd and how disheartened you felt. Must feel GREAT she is now standing.
My dd will be 1 on the 19th of this month. She has right side hemiplegea (spelling?) CP. Her arm has high tone, tightness and weakness. She can't use her R arm for anything at the moment, this is something we are working on or physio says she will just leave and forget its there. We will be starting restraint therapy soon.

Dds leg is not as affected as her arm. She still has a tight calf muscle and curled toes, at the moment dds L leg is taking most of her weight, we are to do side stepping when leaning on the sofa to help her learn to displace her weight.
Dds new physio wants to hold off on afo's and piedro's because she has good movement so far.

I know what you mean about comparing. Must be slightly harder as yours are twins.

Thanks again to all for the congratulations :)

Sorry not been on for a long time, struggling with three under five and tbh trying to stay in my blissful bubble of denial. Basically having a dreadful week as reality is starting to hit. We were told from the off my son would probably have spastic quadriplegia along with probable learning difficulties, the MRI showed significant damage, however up til now he has seemed like any other baby, nobody can tell anything is wrong and I chose to be positive as nothing was set in stone and believed he would come through.
Now at ten months his head control is still not there although it has improved, he can't sit or use his right arm etc it is starting to become real and I can't come to terms with it, when I try to do the healthy thing and talk I just get so upset. I find myself dwelling on the future and just can't face what might lie ahead, he is so beautiful and innocent and his smile kills me because he doesn't know what's going on. Just crying all the time and feel like a rubbish Mum, keep screaming at the kids which is not like me.
I know its not productive but I blame myself as he had meningitis and I didn't take him in quick enough, I knew something was wrong but allowed the hospital to fob me off which led to the delay in treatment. I can't stop running through that day and wishing I could turn back the clock more than anything, I've ruined his life.
Sorry this is purely a self-pity post and actually very unlike me but I need someone to read this who might understand some of what I am saying.

Sorry I dived in with this now, just reading about your wonderful children has already cheered me up a bit and made me realise how special these little achievements are. Congratulations to all of you who have amazing children that keep surprising you and making you proud (I guess that is all of you - and usually me actually when I'm not being a misery-guts).

Biglill. Just to send you some support. The early days, as everyone will tell you are sometimes the hardest. It's when the milestones are being missed and becoming more obvious there are problems that reality starts to hit. Have you had counselling? This can help with the mental trauma that occurs when there are problems like you've had.

You have no reason to feel guilty about the meningitis, it's the hospital that should have done their job properly. . It seems to go with everything this stupid guilt and counselling will help.

Have you got physio and OT involvement yet? Just having good professionals supporting you takes some of the stress away.

It does get better with time but I think now is probably the hardest time. Don't think about the future. Some children make amazing progress despite the most dire predictions, as you've seen from the stories on here, and looking at the good things, like DS s smile and happy nature is what gets you through.

Can you get someone to help with the other DCs? Play group or nursery or relatives to give you a bit of a break?

If you need to rant away just come here. We are all ok with it and understand where you are coming from. Xxx

Oh Biglill :( sending you lots of support as well. It really is so hard in the early days. And they were filled with guilt for me too :( so I really get where you're coming from. But this is not your fault .

I agree with everything Sneezecakesmum has said. Talking about it can be difficult and emotional, but it can be really therapeutic for some (me).

Don't think about the future. Our wonderful kids have an amazing habit of defying doctors predicted outcomes. I take it day by day and celebrate every little achievement. Our DD2 was not expected to walk.

Honestly, you are allowed to feel precisely as you are feeling, but it really will not feel like this forever. Your love for your little one will not diminish through these difficult times, and you will adore everything your son achieves and the person he grows into. Allow yourself to have all the feelings you currently feel as they are a normal part of this process which is so individual for us all. But know that however the outcome, you will not feel this raw forever xx You are a great mum, doing a great job and all your kids love you for it. Be kind to yourself.

Stay with us and rant away - we've all been there and we're here for you xx

Hi biglil I think we have all felt like this before and I'm sure we will again. Remember you ARE a good mum or you would not care so much.
I still can't talk about dds birth experience in RL, even with DH who was there the whole way through. I get thelump in my throat, my eyes well up, its uncontrollable. Anything you need to talk about, we are here. I find it easier to 'talk' here when I'm upset as no one can see me cry.
Hope you are feeling better tonight x

Biglil, I want to send you my thoughts too. Like others have said, please stay positive and celebrate every thing your son achieves. When children have to work really hard to be able to do something then they really have acbieved much more relatively speaking in comparison to other children. I try and think that way with my ds anyway. I second the opinions on trying to get chikdcare or family to help look after your other dc. Also ring your local parent partnership support group.details may be on your council website. They have lots of information for parents with children with additional needs. They have got me some info on grants available for respite care, they call them short breaks. The grants can be used to either get a break away for you or to pay for a family subscription to there park or similar so the whole family gets a change of scenery. I could post you more info in relation to what is available in my county if that helps. Childrens centres often run groups for families with children with additional needs
and could be good to meet up with others in RL. Please dont put yourself down and blame yourself for the meningitis. You relied on the healcare professionals a d acted on their advice.

Haven't checked in here for ages but wanted to give a huge for little melmo - such excellent news

Biglill - when DD was 10 months that was rock bottom for me too. The signs started to show for real at that point and the hope that she'd escaped unscathed wasn't going to be a reality. It's a lot to deal with. Sending lots of positive thoughts and support to you through a tough time

Wow, will definitely try to post more, thanks everyone who responded to my whinge. I am feeling a bit better today, went for a run, had a long bath and the sunshine helps too. Most of all though the supportive words from you guys literally scraped me up off the floor.

It is I guess to do with his problems becoming more obvious, I take him to all sorts of classes and the other babies are now making meaningful sounds, crawling around and sitting up and my lo lies across me like a ragdoll still.

I also received a couple of written reports from neurology and paed last week and seeing it in black and white made it worse, nobody has mentioned cerebral palsy since the day of the MRI and there it was in writing again 'an evolving neurological condition, probably cp'.

The physio is fab and we are being referred to OH but although the support is great we haven't had much specialist equipment apart from his tumbleform seat and stuff is now getting ordered in. So helpful but I don't want it because I just don't want him to need it.

One daughter is at school and the other goes to nursery two days a week and usually I can cope with that fine but on my 'bad days' I can't cope with anything. Melmo - exactly as you say the eyes well up and my voice starts to go when I try to talk about it. Not sure I would go for counselling just yet as the grief comes in waves but I would definitely consider it if I was unable to pick myself up.

Thanks also for the practical advice, will look up parent partnership support, had never heard of them before.

Thanks again for taking the time to reply, feels amazing to be understood!

Hi Biglill. Glad you're feeling a bit better today . It comes and goes for me too, but nowadays there are more better days than difficult ones.

Have you been referred to Portage (learning through play)? Our paed and physio referred us, and while we got Portage at home for a while, we have also joined their portage swimming group and go to their coffee mornings, so we're with lots of other kids who have their own challenges too. It makes us feel less like 'outsiders' (which we sometimes do when we go to classes with NT children), and is a really lovely atmosphere. Ask your physio for a referral x

Ooh thanks for the tip I will definitely ask. Sounds like just what we need. Getting sick of sympathetic looks now! Although when I'm in a bad mood I get annoyed with everyone if they look, don't look, ignore the obvious, be extra nice (then I feel patronised!) ha! I must sound like hard work!

Very glad to hear the difficult days will hopefully become fewer and more far between! x

hi biglill

for a while I felt the same to about ppl watching and having to deal with the "is she crawling?.... Can she do this/that" questions. i recommend finding it if you have a children's centre in your area that's specifically for children with additional needs in your area (in my Borough they call it an enhanced children's centre).... ask your health visitor.

it's great not to have to explain your child, sessions are stuctured and you can just go and have fun without worrying about anything else. Also you'll find that the other parents know about loads of services/resources that are available

Does anyone have any tips on what to do when dd wakes up in the middle of the night? regardless of whether she has a nap during the day several nights a week she'll wake up any time between 12.30am and 4.30am and be up for hours.

We've tried soothing her, ignoring her, giving her milk but nothing seems to work

dd's professionals say it's not related to her condition, HV even referred us to a psychologist (that was a prize waste of time - she knew nothing about sleep)

The paed can prescribe melatonin. I don't think the gp will though. It's a naturally occurring substance so not a drug in the same way as others. There is also the sedating antihistamines just to get a better routine established. I've leapt straight into the medicating as we've tried everything, including the above, and baclofen and nothing has worked in 5 years. .

It does seem to be more common with CP children. We've resorted to 1/2 hour tv then 'time to sleep now'. Just check there are no physical issues like muscle spasms, too hot, too cold (DGS is very hot in bed).

DGS has got increasingly bad since going I to his own room and bed even though he goes off to sleep in an instant, but will wake frequently, sometimes with night terrors, sometimes crying, sometimes wide awake and happy at 2 am! The only thing that's guaranteed to work is sleeping with us!

wow I was hoping not to have to go down the meds route just yet (plus DH is not in favour of it) and since the pead thinks it's not related to dd's cp I'm not even sure that she'd agree to prescribe anything.

DD would be wayyyyyy to wired if we put her in front of the tv before bed

she was up at 3am again today, I lay beside her and watched her, her hands were in Little fists and she was making lots of jerky movements with her arms and tossing (not like spasms more like she was fighting) at one point she grabbed a handful of her vest started to make a scrubbing motion across her chest.... Have you seen Anyting like this?

Sounds like she was having one of those dreams where people act out things. I cant remember what they are called but very common. Its a type of sleepwalking behaviour.

Could it be because she has lots of energy but her CP stops her running it all off during the day and she is still full of adrenalin when she goes to bed? Does an activity like swimming really tire her out and she sleeps better that night?

Does she cry and get distressed or just wide awake and wanting to play or get up? DGS is sometimes like this and we have to say its still dark and you need to go back to sleep. That when he has a bit of TV because it relaxes him and he will go back off to sleep.

Does the waking follow the 90 minute sleep cycle where sleep is lighter (DGSs does)? Sometimes if this is the case you can get in quickly and reposition and settle before they fully wake. There are some books on sleeping, like 'gentle sleep solutions' which may give some insight.

Its always worth asking whether its siezure related with jerky movements, but I honestly don't think it sounds anything other than a lively child who wakes frequently. Believe it or not there are tons of them out there!

Is she able to play with a simple toy for half an hour and then send herself off to sleep again? My DS could be heard at 5 am bashing and twirling a fisher price toy which fixed to the cot. Then he would just go back to sleep for another couple of hours.

Keep a sleep diary and note what she does in the day and how it relates to the sleep. What has she done when she does sleep well.

Bananas contain a substance which mimics the sleep hormone so a banana or half of one and warm milk before bed?
If you want to risk starting a bad habit but get a good night sleep you can try co sleeping. Thats always a bit of a dilemma for some parents, for others a no brainer as everyone sleeps! Its just a family preference.

We've tried everything including meds and they dont work either! I think your DD is just one of those children (is it 1 in 4?) who don't sleep well. Things do get better over time though.

I've just stumbled across this thread and I hope it's not a problem me joining?!

DS is 6.5 and in year 2 (born 29+5) and diagnosed aged 2. He wears an AFO splint on his left leg and an insert for his right shoe. No additional education needs but has a support worker in class for his exercises and stretches.

He had his fourth lot of Botox around 3 weeks ago and today started serial casting for the second time.

We mentioned at his last Botox clinic that we were not happy with how things are progressing, and that improvements with his left leg had been minimal. They increased the dosage this time but a senior consultant suggested that if we don't have the desired effect this time then maybe orthopaedics needed to get involved. They have held off from surgery due to the growing he still has to do.

Well that's me and DS I look forward to getting to know you all

Hi acatcalledchinchi welcome :)

I have 4dds, my youngest had a stroke at birth causing the cp. She is nearly 1yo and recently took her first steps. She has R side hemiplegea. She has her own ways of getting around, we are so proud of each little achievement she makes.

Everyone on this board is friendly, supportive and always have advice. The ladies on here have helped me endlessly :)

Again welcome :)

Hi acatcalledchinchi - welcome

I also have a 6 yr old in year 2 with CP. Hope you manage to get things sorted with your DS's botox and that the increased dosage does make a difference.

WRT sleeping, DD goes through stages but is awful when you're awake a lot in the night with them. She does also get night terrors and her dystonia which is usually very slight does kick in when this happens and she gets upset. Usually she goes to sleep with a story CD/classical music on which tends to settle her.

A quick hello and welcome to acatcalledchinchi xx :) Dd2 will be 3 in June. She has asymmetric bilateral spastic CP. So affected both sides but her right is worse. She started walking independently about 4 months ago but it's a slow and steady progress and still needs walking support outdoors. Welcome to the thread xx :)