Any Cerebral Palsy parents out there :)

[essie0828]

Aww she is so precious, and I really appreciate the videos. She is very motivated by chocolate. What a beautiful little girl and so smart. You should be very proud.

What is SDR surgery?

My little girl is hyper-mobile in her ankles and knees with varying tone. Every step is on her toes. We've had sucess with verbal ques to remind her to put her heels down. Lol, I say "Hayley put your heels down.", at least a hundred times a day. She cruises and crawls very well and can stand unassisted for about a minute. No baclofin or anything needed yet. Lots of massage, warm water and stretching for now with Tylenol on rough days. Her communication and cognitive abilities worry me. She doesn't have very many words that she uses well, but she follows some simple instructions. She's learned how to open doors with a smile, literally. She is very expressive with her face and with gestures but has trouble with coordination of mouth muscles. She drools quite a bit if we don't promt her to swallow and has some trouble eating. We have not had the MRI yet. I'm waiting because of the sedation and because we already know what her diagnosis is. Mabey after she is 2.

Isn't it strange how 2 little girls with the same diagnosis can be opposite in their development. Whereas my DD is coming along with gross motor, your little one is very smart and chatty.

 

[lilesMom]

Hey guys xx
We r in hospital and hve been since wed.
Little man's eeg was bad. Turns out he has a bad epilepsy called west syndrome.
Trying a different drug to control it. So fingers crossed.
They hvevonly had 4 or 5 patients in this hospital with it sincepilepsy nurse has worked here.
He likes beating the odds in a bad way.
First his stroke. Now this.
His swallow and heart r fine on the plus side.
Hope everyone is well xx

 

[essie0828]

Lilesmom I hope little squishy man is doing ok. Our prayers are with you.

 

[ladyluck8181]

I hope Simon is doing ok, sending you

 

[Foogirl]

Aww she is so precious, and I really appreciate the videos. She is very motivated by chocolate. What a beautiful little girl and so smart. You should be very proud.

What is SDR surgery?

My little girl is hyper-mobile in her ankles and knees with varying tone. Every step is on her toes. We've had sucess with verbal ques to remind her to put her heels down. Lol, I say "Hayley put your heels down.", at least a hundred times a day. She cruises and crawls very well and can stand unassisted for about a minute. No baclofin or anything needed yet. Lots of massage, warm water and stretching for now with Tylenol on rough days. Her communication and cognitive abilities worry me. She doesn't have very many words that she uses well, but she follows some simple instructions. She's learned how to open doors with a smile, literally. She is very expressive with her face and with gestures but has trouble with coordination of mouth muscles. She drools quite a bit if we don't promt her to swallow and has some trouble eating. We have not had the MRI yet. I'm waiting because of the sedation and because we already know what her diagnosis is. Mabey after she is 2.

Isn't it strange how 2 little girls with the same diagnosis can be opposite in their development. Whereas my DD is coming along with gross motor, your little one is very smart and chatty.

SDR is "Selective Dorsal Rhizotomy" surgery. It involves cutting nerves in the spine which feed the tight muscles.

Same thing that botox does, but botox wears off after 6 months, SDR is permanent.

I guess that's the nature of CP - it can be so many different things to so many people!

 

[lilesMom]

Thanks guys. He is doing good now again.
36 hrs + seizure free so fingers crossed stays that way.
Still in hosp. Il be on properly when we get out x
Hope everyone is well x

 

[essie0828]

Lilesmom Good to hear he has been seizure free for a little while. Poor little man. Thinking about you guys and sending up lots of prayers.

 

[essie0828]

Thanks Foogirl.

SDR doesn't sound like something I would consider for DD unless there was no other option and the pain was to great to cope with. It sounds like a very tricky procedure.

 

[lilesMom]

Thanks essie.
50 hrs now ;-) hoping they hve it under controls

 

[essie0828]

Go Simon! Glad to hear he is doing better. Poor mum hospital life is harsh. Hang in there hun.

 

[ladyluck8181]

Fab news!!

SDR is not something we would go for, we did consider it and dh looked into it extensively and with his knowledge he decided the risks far outweighed the pros for us. We are not willing to play russian roulette on a chance it could work when it could make things 100 times worse.

 

[essie0828]

Just spotted the ticker ladyluck. Congrats!

 

[ladyluck8181]

Thanks hun, I'm so freaking scared, I had an ectopic in July and a 5wk mc on the 29th Sept. Trying to stay positive but it's just not happening lol.

 

[lilesMom]

ladyluck congrats xxx
fingers crossed for u hon xxx

hi to all x
we r home from hosp,sleeping in a bed is fab

 

[essie0828]

Ladyluck it's really hard not to be scared when you have suffered a loss. Been there myself and every pregnancy was terrifying. Hang in there lil bean!

Lilesmom glad you are finally home with him..That's a long stay in an uncomfortable place. Cuddle the lil squish an extra time for me.

Happy Halloween! DD has a pageant today at the rehabilitation hospital. Gonna be lots of cute little spooks there.

 

[essie0828]

Has anyone used "chewy tubes" with their kiddos? DD's ST recommended them to help her strengthen her mouth muscles and help with her need to orally explore things still. She still puts everything in her mouth and it's getting impossible to stop sometimes. Poor little girl keeps getting colds every few weeks. Anyone had experience with these?

 

[Foogirl]

Fab news!!

SDR is not something we would go for, we did consider it and dh looked into it extensively and with his knowledge he decided the risks far outweighed the pros for us. We are not willing to play russian roulette on a chance it could work when it could make things 100 times worse.

Yep, that's pretty much where we were with it. Not only that, our consultant explained that in some cases getting your child on their feet before their body is ready for it can come at a long term price. She might walk easier at 4 but by 40 not be walking at all. Whereas keeping her off her feet more at the moment can help protect her future posture. According to the blurb from the main hospital which does the surgery, Abby probably wouldn't been accepted because of her hypotonia and again this is something her neurologist wasn't happy about. There isn't actually any medical reason for not doing the surgery where the hypotonia isn't affecting the legs. His argument was the reason seems to be more because there is a good chance that she won't walk unaided anyway which means the "results" of the surgery are less visible. He offered to send us to be assessed in the UK and was happy to recommend a referral to the place in Bristol which does it, if that was what we wanted.

We decided against it but it did mean we had to change our mindset quite a bit. We had to take of the "must get her walking" head and get comfy with the "we'll let her go at her own pace" way of thinking. She has come on so well in the past 18 months we're kind of glad we didn't jump in to it. So many things we thought she would never do, all of a sudden she could. It's quite amazing.

That said, every single child and every single family is totally different and I can really understand why so many people push to get the surgery done. I think if we'd not had the consultant we have, a top neurologist who specialises in botox and who is more interested in family centred care than anyone we've ever seen, we may well have been looking to SDR to get us some results.

Has anyone else here been to a Bobath therapy centre?

 

[nearlythere38]

Hi all,

Just catching up with this thread.....feel like a bit if a fraud as ava has not been diagnosed with cp (yet?) but she does have similar issues so i hope u dont mind me eavesdropping

Ava had her MRI on 24th october, and we were told the results should be back by the end of this week. I feel like i am waiting for exam results all over again except ten times worse. There is very little change. She is still gaining weight at a scarily fast rate. Approx 1lb per week. And way off the top of the 99th centile on the growth charts. She doesnt reach for anything, hold anything, take particular interest in anything. She tends to just lay there, hands fisted, arms on the floor near her head and legs like frog legs. Still no laughing or vocalising really.

She is also now having some kind of seizures. They are like vacant spells, followed by a jerk and eyes move upwards. They are only small but very frequent. Shes having another eeg done and will be starting treatment

 

[essie0828]

Nearlythere you are welcome here no matter what your little one is diagnosed with I don't understand her weight gain myself. I hope her MRI and eeg shed some light on whats going on. Does her appetite reflect her weight gain? Is she hungry a lot?

With DD it was a struggle to keep her fed. She ate tiny amounts several times a day and still does. I hope they find out what is going on with your little girl I know you have to be worried sick.

 

[lilesMom]

Nearly there hugs hon .
Hope u get answrs soon xxx
Waiting sucks xx
My little fella has just been changed from kepprA to sabril to control seizures.
He was having a different type of seizures called infantile spasms.
KepprA never suited his tummy but he is quite happy now n sabril.
He was very sleepy for a week ish but it has settled.
Eeg next week to ensure its working.
Any qs il answer if I know ;-) xxx

Hey to alp xxx