Support/Information sharing thread for parents of children with CP - part 3

[itsnothingoriginal]

So here we are - thread number 3 to provide information and a source of support for parents whose children have been diagnosed (or not yet dx) with Cerebral Palsy.

Welcome to parents finding us for the first time and welcome back to any who have posted before

Morning ladies. We saw physio for dd Thursday now dd is weight bareing on 2 flat feet we now need to try and get her trunk muscles stronger so she can attempt to stand unaided. We are going to use props in each of her hands but she leans against things with her stomach. I was thinking of getting her 1 of those door frame bouncers she could maybe use to try standing without having to lean on a solid object. Does anyone know of a disabilities site I could get these sort of things from. All shop ones are for young infants and she's 20 months and to heavy . Does this make any sense?? I'm struggling to articulate the picture in my mind x

Hi, I understand what you mean but am not sure it will work. My older DC had one before she could stand and she just leaned against it or sat down in it when not hopping.
Sorry to be negative.

What about a Pilates ball and letting her use it for support and gradually moving it away?
Or are there other non standing exercises she can do for the trunk to get stronger so she might stand better?
The physio we saw this week said to sit DS on the ball and then slightly roll it to the side so he is off balance and let him use his core to try and rebalance himself if that makes sense at all?

I'm really new to this so probably no help to you sorry

That does make sense and I've got one of those balls from pregnancy il give it a go x

Another thing we've made is we've used our 6 dinning chairs 3 on each side a space inbetween each chair and a ft alley way. We've put a toy on each chair and are teaching her to walk up and down the isle. It's proving quite helpful x

That sounds like a great idea - must feel good to come up with your own stuff

Meant to say to hold her on the ball so she doesn't fall - just gently so letting her do the work. That could be really obvious though

Yh it's ok whatever helps her we'l try. The house looks like mini gym it's gets me down as it's like a constant reminder of our new lives. X

Redfox31 Welcome to the thread :) we've found Makaton quite helpful for DD2 to help express herself, as she has delayed speech. We started off watching Something Special on CBeebies, and then I just picked up Makaton rhymes from YouTube etc. Makaton is a simple form of sign language used for hearing children who have difficulties with speech. The idea is to say the word as you sign it, to reinforce the sounds and meaning. Our SaLT therapist uses it as well in our sessions.

We went to a nature reserve today, dd did so well climbing around all the rocks and tree stumps . She was actualy crouching down to pick up pebbles. Physio is defiantly making a huge impact on her legs, I'm so proud of her fighting her way through this. Going to bed the proudest mummy in the world tonight :-)

Aw bedsheets that's fantastic! Well done to your DD x

We had our first meeting with the team who will
Be looking after DS today and it was really good. Got lots of physio to practice over the next month (summer break here - the whole country shuts down) plus they referred him to orthopaedics to get a type of cast thing made for him to stand in? Has anyone else had this? The idea is that it helps him stand in the right position or something I think...

Borttagen, can't I ask you about your ds big toes sticking up ?? Is that a tell tale sign then. My dds big toes stick out x

I think it is a sign of clonus? I never noticed it before - when his legs go stiff his toes stick up like as if curling up towards ankle. I never even thought that that obviously isn't a relaxed position if you get me? Until I tried it out myself after they told us they thought he had CP

Ahhh ok my dd legs don't go stiff but her big toes stick up higher then her others. I've just looked back at some photos and her big toes always sticks up. Thanks for replying x

Good evening everyone. Can I ask some questions that are probably trivial and silly but I have no where else to ask.
As parents did you suspect CP before it was diagnosed.
Did friends and family tell you they didn't think it was .
What was your medical journey after drs appointment and timescale to diagnosis.
I don't know why I'm asking really but today these questions have gone round and round in my mind x

Hey again

I suspected after his one year check (which we had early at 11 months to raise the issue of no gross motor skills). The GP was focussing a lot on his legs and asked if they always crossed over when he was held up. I was so annoyed with DH for going on about legs as I felt that a weak core was the main issue
Anyway, I came home and googled and quickly realised she suspected CP. DH was annoyed with me for thinking it and my in laws who we live close to wouldn't say much so no idea what they think. My family think I'm a drama queen so probably rolled their eyes. A month later a paediatrician seemed to imply she didn't think it was CP but dissociated motor development so that took CP from my mind. It was clear from the moment the neurologist and physio started looking at him (one month later again) they thought CP - based on him not what I said or notes. And now it's very obvious to me that this is what it is.

Our medical journey was pretty quick but we aren't in the UK and I think it was because the first GP thought CP so paed appointment was quick and the paed said she would ask for an urgent neurology appointment.
We won't have an official diagnosis til they do an MRI next year.

Hope that helps? My DH found it harder than me to hear the Suggested CP diagnosis because he had refused I consider it. So I actually think my worrying helped
Me deal with it better!

hiya :-) im also known as drama queen on my side aswel!!!
dd 1 year check went ok but HV said her leg creases didnt match and get hips checked at gp. i wasnt concerened and booked gp. her checked thought she was fine but sent for xray to be on safe side. that came back fine. a month later dh joked she never puts her feet flat to the floor and when he tried to manipulate it to his palm it wouldnt go. back up gp in jan. he confirmed muscle or tendon tightness sent out referral to othopedic surgeon and pediatric physio. Orthopedic gave us a 5 min appt and said he would see us again after physio had done all she could.????
physio put us into 6 weeks of serial casting to correct feet angle which has helped hugely but 50/50 of the day dd creeps back onto toes.
we now see her weekly for physio. eve had bloods to rule out muscle disease.
So many people have said to me they don think its CP. DH wont be led into a disscussion. To me its plain as day. physio seems to dodge the question. Doesnt help physio and myself have formed quite a friendship. funnily enough we are from the same home town and ran at the same running club only diff is we are 5 years apart. we now both live 150 miles away in neighbouring villages.
shes younger than me and has seen me at my most vunerable. shes only at the my local hosp for another 4 months before returning to her own pratice. in things shes said its come over like. if she doesnt think weve made progress by oct/nov shel refer us to ped dr for second opinion. i cant help thinking that because ive worn my heart on my sleeve and shes so much younger than me and we seem to click. she cant really tell me what shes thinking and is just biding her time for someone else to do it.

i must sound like such a loon lol

Hi all,

Hope you are all well. We bought the Vtech zebra at the weekend, but her legs are still a little short for it which is a shame. Im going to look out for a second hand scuttle bug too, just so she has as much opportunity as possible to figure out how to move along using her legs.
Her four point crawling is coming along well now, even though she has had tonsilitis since Saturday.

Thanks Borttagen - good to know your daughter is chatting away at 3 - i cant wait for Chloe to get some more words!!! I'm just being impatient!!

Bedsheets4knickers - it sounds like your daughter is at a similar stage as mine with the standing. Chloe leans forward when standing too, and if i stand her against the sofa she will lean on it with her stomach. I thought her trunk muscles would be quite good seeing as she sits independentally, but obviously there are some other muscles that need strengthening to get her to stand.
Have physio given you a stander? We have the Leckey Totstander - although Chloe hates it at the moment.
We have one of those door bouncer things, i think ours goes up to 12kg - Chloe is about 9kg at 20 months. We tried her in it, and like Borttagen said, she just sat down or leaned forward- they are just not supportive enough.

I'm loving the idea of the dining room chairs and alleyway - sounds fab!!

everydayaschoolday - I'll give the Makaton a go, she is pretty good with action nursery rhymes, just her attention span on watching TV is quite short. She prefers the adverts like 'Compare the Meerkat'! lol

Bedsheets4knickers - our CP was diagnosed at 3 weeks after her MRI. Physio started about the same time and they noticed the high tone in her legs too.
We've had a lot of people tell us they dont think she had CP when she was younger, including a nurse on the NICU ward and her eye consultant. I suppose it just wasnt obvious as it was legs affected and she was younger then.
Even at 20 months we dont have an official diagnosis of CP, but i will be pushing for it once she is 2 years old.
Her left leg is more affected and her left foot turns outwards, so im going to push for a hip x-ray i think.
As Chloe had a difficult birth, she has been under a paed since then.

Has anyone seen the 'Upsee' from Firefly/Leckey? I am really tempted to get one to help Chloe with weight bearing and walking.

hi all. I'm going on holiday next week and really need a carrier for dd 2yrs. I guess she'll need one that goes on my back please can anyone recommend good ones. We need to get it this weekend so we have it in time to take with us

We have a little trekker back carrier. It's great. Light weight with lots of support. Highly recommend it x

Redfox31 thank you :-) I'm seeing physio Tuesday il ask about the leckey tot stander. Looks just the ticket x

bedsheets just went the to little trekkers website. which one did you get?

Also do they have them in shops? I don't think we have enough time to wait for delivery

I've just checked the label it's a little life one. It was a baby present to us so no idea where it was from . Do you have a go outdoors near you??

It's the little life cross country s3

been looking at this one, what do you think?

Has anyone else used this one?

m.johnlewis.com/mt/www.johnlewis.com/littlelife-ranger-back-child-carrier-blue-grey/p939262#un_reviews

Just looked at the cross country it looks like it is more of a seat which I like. is it heavy?

No it's not a seat it's more of if they fall asleep it stops them falling down the bottom. It's really light prob same weight as a normal back pack