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

(950 Posts)
Galena Tue 29-Jan-13 08:58:56

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.

sneezecakesmum Mon 14-Oct-13 20:17:51

Albaba your DD is much luckier than DGS as he is quite severely affected and I promise I don't resent your DD just as I know you don't resent other children. grin I did say to my daughter one day, why him and she just said, why not? It's going to happen to someone and it's just random mostly. She never is sad about the extra work, appointments and general crap for herself, but she does get sad sometimes about her gorgeous boy.

DGS has a different type of CP and is dyskinetic which means he has difficulty controlling movements rather than making them in the first place. I think your daughter will do very well if she is mild. I am sure she will get there in the end, and you will start to notice differences less. Probably not go away as in cured, but manageable. We always tell ourselves however bad the day is, DGS could have been far worse.

SDR looks terrifying on paper but the operation is getting better and safer, so maybe in the future depending on how things pan out? It's not an option for us as DGS is the wrong type so its one less thing to stress over.

DGS walked in a walker at 2 (I bought an ancient rifton gait trainer on eBay) and off he went. His arms are worse than his legs so that's probably why. He couldn't manage a Kaye because his arms are so weak. He now has a Kidwalk and chases other kids round the playground. He will never walk independently we think, but it is what it is.

Salbook1. A friend of ours' DS went for conductive education in Sheffield. Nursery I'm sure, and did really well there. He is spastic diplegia and has had SDR in the UK. I would ask to sit in on a couple of classes as not everyone is into CE, but they can get amazing results. Can't comment personally, sorry smile

everydayaschoolday Mon 14-Oct-13 21:54:59

Yay! Glad the tubes arrived safely Holidaybound. You're very welcome <pops flowers in vase thlsmile Ta>. You're going to be popping in his room all night 'just checking' aren't you!? Hope you guys have a peaceful night x

Sorry, I have no experience of conductive education and can't help <off to google it though>.

Waves to a hovering Bish! It must be especially difficult without a diagnosis. Stick with us, we'd love to hear how your ds is doing.

Hi Albaba. So sorry that you had a c**p day yesterday. I feel the same for dd1. We understand here, we really do. This is a safe place for people to vent, rant and be vulnerable, knowing that we're here to support. None of us are jealous witches (Vipers, maybe thlsmile) but we all want the best for our kids, and it's natural to feel sad or loss at what they don't have, can't do or that they have to work so much harder for. It is so unfair.

Minty02 Tue 15-Oct-13 16:25:56

I am a Mum to twins aged 11 years old. My daughter has CP and my boy is able bodied. They have both started secondary school. My daughter goes to a special needs boarding school Monday to Friday. I was wondering if there were other parents out there with twins - one with a disability and one without? I have never met a family like ours and it can be a bit lonely sometimes although I am fortunate to have great family and friends.

sneezecakesmum Tue 15-Oct-13 19:10:25

There is a Facebook page. Think it's called twins with special/extra needs.

bishboschone Tue 15-Oct-13 19:43:20

Waves back to everyday .... He is doing ok, no walking yet but we have managed a few steps with one hand so I'm building on that . Still no speech either apart from babble and dada/ mama etc..... To be honest I'm happy in my world of non diagnosis , I'm too afraid to hear what my future holds so will plod along with my fingers in my ears .. Tra lalala .. ( ps .. We have had the tests and no results so I have actually run away from the doctors ) .

bishboschone Tue 15-Oct-13 19:43:35

How is your dd doing?

everydayaschoolday Tue 15-Oct-13 21:12:28

Hi Minty. Albaba has twins but are much younger than your kids. Hopefully another twins parent might be along or delurk to say hi. (I lurked on here for AGES before I had the courage to post - now can't get me off the bloomin' thread!)

everydayaschoolday Tue 15-Oct-13 21:48:24

Hey Bish Just like a year ago, our kids are still very similar.

That's great your ds is taking some steps. That's where it all starts! Our dd stood against the furniture for ages then eventually got side stepping when the draw of chocolate buttons was just too much! How's your ds getting on with his walker?

DD's walking has progressed to max 20 steps independent, or a bit further holding hands. Has to hold hands outside as it's too uneven. Very slow walker but her high knee gait is steady and centrally balanced, so good style. We've got the babbling too, but only very recently (past 4 weeks) and I got my first 'mama' 2 weeks ago although it's not particularly clear. But, barring the horrible cold she has right now, she's the happiest toddler I've ever met and totally gorgeous. Also very funny and loves nothing more than 'boxing noses' and bottom burps (laughs uncontrollably and does the 'stinky' hand waving sign).

<handholding, waiting for those results>.

bishboschone Tue 15-Oct-13 21:54:38

Ah she sounds lovely ! .. My ds continues to be very grumpy and cry a lot but in his happy moments he is a cheeky , funny little boy and of course totally gorgeous to me anyway smile... He has a good gait having used his walker for months but doesn't have the confidence to let go of it.. I talk in babble to him all day and he likes it. We have our own language and are learning signs to together .

everydayaschoolday Tue 15-Oct-13 22:36:42

That's good that he so comfortable with his walker and has a good gait. The confidence to let go might come in time, but at least he has the confidence to use it - my DD wouldn't. I've started to take a look at Makaton. We do a couple of signs, but I really need to go to classes (planning in the new year when I finish work). Do you get SaLT? This is the only therapy I've not been impressed with.

bishboschone Wed 16-Oct-13 07:26:10

I go to a drop in and it's a bit useless, they say he isn't bad enough to have a one to one ( he is 2.4 with no speech , how bad does it have to be !!!) .. Did they let you have a walker ? He wasn't keen for months but I made him do it which involved alot of shouting . It took him about 4 months of it being in the house to actually want to do it. I will say the one I have has locked wheels . I tried him on one with free wheels and he screamed . ( this was after months of using the locked wheels one) so maybe try again if so.

inhibernation Thu 17-Oct-13 05:58:02

Conductive Ed - dd had it from the age of 2.5 - 4.
I went into it feeling rather dubious but prepared to give anything a go. Her progress was remarkable actually. I think the combination of therapies worked well - so not just CE. It was also great for dd to meet and play with other children with CP.

melmo26 Sat 19-Oct-13 07:26:45

Hi everyone smile this has been a great week and I wanted to share with everyone.
Dd is managing to pull her r arm in front of her when on her tummy. It used to be to stiff to get past her shoulder.
She can push up on her tummy with both hands and rocks from side to side putting her weight on both arms. Her r fist is always clenched doing this but we don't care. She is weight bearing on it.
She is now rolling off her tummy. Not getting stuck there anymore smile
She is eating lumpy food without chocking and vomiting
She is now rolling all around the livingroom to get to where she wants
Just last week she could not do any of this.
Parents beaming with pride here smile smile

Summerdaydreams Sun 20-Oct-13 11:01:18

Melmo that is wonderful news. I completely understand why you are beaming with pride!!

I have a question about equipment. When should my little girl being offered standing frames, Walkers?? I see many of you have such things. I'm fairly new to this, little girl is 19 months, she can sit but can't 4 point crawl. We are working on high kneeling with Physio, and standing and sitting to stand against furniture. When I hold her hands she can move her legs in walking motion although even I can tell her gait is not quite perfect! Should I be requesting this or will it be offered when Physio feels she is ready?

Holidaybound Sun 20-Oct-13 19:12:28

Memo - lovely to hear your dd's brilliant progress, congrats!

Summerdaydreams - I'd suggest asking your physio if a stander is suitable now. We had an orthopaedic appt last week where the dr raved about the benefits of standers. Ds happily goes in his for an hour a day as its almost the only way he gets tv. Without it it's v hard for us to get him any significant weight bearing time as his standing is so weak. Not so sure about a walker. Some things I've read have made me wonder if its best to let them get a little stronger, esp in the core, before trying walking as the gait may be better later. I'm no expert though so perhaps ask your physio if they think there's any benefit in waiting.

Everyday - we've had some lovely peaceful nights with the dream tubes, thank you. The first night he managed to fall out backwards on his head within minutes (he laughed about it). Since then with the help of a breathing monitor to warn us of escape attempts it's been working great, thanks!!

Summerdaydreams Sun 20-Oct-13 21:32:04

Thanks holiday will ask physio.

Also a question on core. Does it continue to strengthen and improve over time. Dd core is weakish, I suppose it must have improved as she can now sit, although she is still wobbly in her core even though she stays upright, she isn't as solid as babies with no problems. Is it a case of plugging away with tummy time, swimming etc.

muchadoaboutsomething Mon 21-Oct-13 11:58:13

Hi. We got our walker at 22 months actual so 19 months corrected age. Stander much later around 2,6 ish. But then he only used it for a couple of months. TBH I think at 19 months the physios were expecting better progress than he actually then made, but such is life.

In respect of core, it does slightly depend on the child and the CP. But I have been told to always expect DS to have a weak core. It is stronger than it was, but it will always be weak comparatively. Mind you premature babies also tend to have weak cores and that also doesn't help. My understanding is that the CP causes both weakness and spasticity. If you remove the spasticity for example with botox or SDR the weakness remains, and then you work on that as much as you can. In many ways it's like any exercise though, the more you work on the muscles the stronger they get. So I couldn't run a marathon, but if I trained enough my muscles might let me do so, but they might not, but I will be stronger and have much more strength in the muscles from the training.

DS gait in his walker is not as good as it is with us holding hands etc or cruising, but it lets him be independent and we are balancing the two issues.

goneHaywire Mon 21-Oct-13 15:40:17

Does anyone have any advise on the best group 1 car seat to get.

DD 16mo is just about 9kg, her dietitian says that I can now get her a new car seat.

She displays symptoms of Ataxic and athetoid CP. is there a seat that's best for children with CP?

muchadoaboutsomething Mon 21-Oct-13 18:59:00

Has she grown out of the previous one? My ds physio was for keeping him in the smaller one, and has actually advised on the car seats we have had but generally we've just had normal ones and current one was a gift. Others may have a different view but if you aren't sure ask your ot or physio.

Pumpkinpie11 Mon 21-Oct-13 22:24:03

Hi Gonehaywire. Our OT applied for agrant for my daughter to have an extended rear facing car seat as it 'a advised they don 't go forward facing unless they can sit independently. We went for the Izi Combi from the in car safety centre as it has great head support.
We 'be had it about 9 months and I 'm really happy with it.
My older children have always had Britax and they are also now selling extended rear facing in the UK. Britax have a fit finder on their website which allows you to see which seats will go in your car - useful if you have more than one car.

itsnothingoriginal Tue 22-Oct-13 13:08:50

goneHaywire - Britax do have a Special Needs car seat although pricey. Is on Mothercare website I think..

Summerday: My DD is 6 years old now with mild CP and still has a weak-ish core which we still work on with physio exercises daily. Compared to what is was at 9 months (she couldn't sit upright!) it is hugely improved but has taken a lot of work (on her part) to become stronger. I assume it will always be weak but is becoming less obvious to the untrained eye as she gets older. You can't really tell from her walking but you can when she's running and other activities where she has to challenge her balance more.

Horse riding helped and swimming would be great (if DD wasn't utterly terrified of it!). Your DD does sound similar in that we were doing all the same kneeling exercises, standing and walking holding hands at the same age. We were never offered a walker and we just plugged away at the cruising, crawling etc..

itsnothingoriginal Tue 22-Oct-13 13:11:37

Melmo - just read back and delighted for you about your DD's progress smile

everydayaschoolday Tue 22-Oct-13 23:04:32

Holiday bound-glad dream tubes are working out for you grin. And big cheer for little Melmo, what excellent progress! Night everyone x

sneezecakesmum Wed 23-Oct-13 13:22:43

The izi be safe rear facing seat is brilliant. Up to age 4. Very safe but pretty pricey too unfortunately. Very supportive.

melmo26 Wed 23-Oct-13 20:49:33

Thanks all for your support.
I have a question about reflux. Dd always vomits after eating drinking. About 5-10 mins after she is vomiting. Physio says I should start giving dd her gaviscone again as the vomiting can be bad for her throat. Why? Dd is still being sick after feeds and the gaviscone is making her constipated. Even tho we give her fruit and fruit juice.
Is this common with cp or are we just unlucky? Our other 3 dds were not like this when they started being weined on to solids. They all stopped the vomiting by then. And none were as sicky

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