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.

Pumpkin sorry, in my sledge excitement, I didn't see your message about your DD's hips. Sorry to hear that too. I don't know the answer if botox isn't an option for you; I think your Paed's advice would be better than HV's opinion (sorry, don't rate them). I hope it works out though .

pumpkin your match.com comments made me laugh. I also don't rate HV when it comes to specialist advice. Ours has been useful for chasing up referrals etc but doesn't actually know about CP related things. I think DD was around 2 when she had her first Botox but I am sure she weighed more than 10kg. She didn't have it under GA just a local and we held her down. Different country it was horrid. I actually prefer a GA because they get them all relaxed and much better likelihood of applying the Botox to exactly where it is needed.
The only other things for hips are depending on abilities standing frame (really important), sleep system, good seating and not letting them W sit.

We got a sledge last year and still haven't used it :(

Thanks everyday - I'm quite handy so will get it together in the week.
Kaffiene no mention of a standing frame from physio. She can't stand on her own but I have her weight bearing as much as possible however she's one of many of my children & I also have a house to clean so a standing frame would be good. I'll mention it at her appointment.
My HV is very good - I've had some really rubbish ones over the years. It's my GP's I have more of an issue with. My LO is very constipated and bleeds with every poo. We were potty trying but now instead of sitting on the potty she screams while I rub her back and she sqeezes my hand. I keep going back to the GP who tells me to talk to the paed at our appointment in June. They've given her max dose (15ml) of lactulose and packed me off with 4 litres to last until June.
Botox without a general sounds barbaric. I'm not keen on the idea of a general but I wouldn't dream of having anyone stick needles into her muscles while she's fully conscious.
With this mornings lovely frost I'm sure there would've been a slippery grass hill somewhere. Maybe next weekend!!

I am hoping for snow for all the sledge owners but only if it falls in parks and localised country areas and not on me!

DGS has annual X-rays on his hips. Not sure if it's because of the CP now but was originally because he was breech. He is GMFS 4 so very affected but never an issue with joints. I suppose its because of the muscle and tendon tightness not keeping up with bone growth, although what you do to prevent it I don't know apart from standing frames and weight bearing?

Pumpkin. You can buy movicol over the counter I think which is far better than lactulose. Also childrens suppositories (glycerin) which are good for emergencies. If you look up NICE guidelines for constipation in children it goes through everything with you. YOUR GP SHOULD BE FOLLOWING THEM!! Print them out and take them in as movicol is quite expensive. Poor DD should not have to suffer for his incompetence.

pumpkin You may also find that a standing frame helps DDs bowels. DD would always fill her nappy within 10 mins of being in hers!

sneeze and others I think NICE guidelines for hips are to have first hip X-ray at 24 months. Then yearly for mobile or 6 monthly for non mobile children. Anything over 30 needs a referral to orthopaedic surgeon. Usually operate at about 50% DD has hovered at around 20-25% for years. so we keep a close eye especially post SDR as we were told at her spasticity was holding her hips in place.

Thank you very much for your input. We have decided to stop her lessons (they are mainstream lessons, with up to nine other children and one teacher) for now and DH will take her swimming once a week after work. Some time after Easter I will look at lessons again. There is one teacher at our local leisure centre who is absolutely brilliant with the kids and seems to give one-to-one private lessons as well. Will find out if she is available and then will tell DD she'll have to stick with it until she can actually swim. Then it is her choice if she wants to stop again. Then we can still look at alternatives, like gymnastics. I feel good about the new plan

Jokat I think very often 1:1 lessons are best full stop. My older children got nowhere in group lessons so I gave up. My little ones have done water babies and are really confident although their technique isn't great but they're still all quite little & only the youngest has CP.
Sneeze cake - we had movicol but she won't drink it. In fact every time I try it she refuses to drink again for days afterwards. She's still 95% breastfed and has her other drinks thickened as well. I wNt to stop feeding but apart from the fact it's very hard on my own her weight is still a concern, I think it also lack will power because I fought so hard to feed her in the first place (everything started to dry up after 5 weeks of expressing.
I think we'll have to go back to the GP this week. I suggested mixing the movicol with 5ml water & giving it during a b feed or in a yogurt but the GP was adamant I shouldn't do that. I think I'll see somebody else and hope I get a new suggestion.
How does a standing frame work? Is it just a frame they sand in? She uses her walker a lot but takes all her weight through her arms, she shouts I'm running and scares me half to death!

Hi pumpkin we had the Upi Hip Stander.

www.quest88.com/therapy-mobility/upi-hip-stander/

Yes, it is just a frame they stand in - not able to walk. Ours came with a table and shallow basin so we had water-play and play dough etc on the table with Cbeebies on TV for half hour stints. The weight bearing will definitely be through the legs with the padded and comfortable frame supporting at strategic points (feet straps, lower leg, hip and chest iirc). Hands are free to play, turn pages of books etc (hence need for the table).

Just had an appt with neurologist (1st appt I've had with them) and he was questioning whether my lo has cp and thinks perhaps its dystonia! (Poss caused by genetic abnormality). One of the reasons is because she's always floppy when she's asleep. What a roller coaster! Won't know for sure till we get MRI, but anyone got any comments?

Hi

we have just had a question mark raised over whether DS has spastic cp or dystonia. For the same reasons that he is floppier when he is asleep and that the spasticity seems to be "caused" by activity. I think they still think he is spastic diplegic though although it is clear other muscles are affected a little. He also doesn't really sound like the other spastic children on this thread. Not least because he is clearly more adversely affected than most and in more muscles.

I am actually not giving it any thought because it changes very little. We have had an MRI but they have lost the results.

Oh an for what its worth I think it was also a comment in passing and the same movement pattern is common with spastic CP

They have lost the results of an MRI scan?? That is shocking!!!

I hope you're being fast tracked to the front of the queue for another MRI!!

DGS is dyskinetic with dystonia although if you read up on dystonia and look at you tubes of dystonia, he doesn't look anything like it

We've given up fretting over it and just work with what we have which is an incredibly annoying extension pattern of movement which I don't think is dystonia as he can semi control it at times.

When he is asleep he is totally floppy and relaxed and also when he is flopped out in his chair. All his rigidity is caused by active movement intention or excitement. I think when it's dyskinetic its called rigidity and when it's spastic it's called spasticity. DGS definitely has CP as the MRI showed damage to the basal ganglia.

There's some test you can do called 'lead pipe' bending of the arm or some such. If it's rigidity it moves differently from spasticity, but my brain won't work at the moment

Hi guys me popping in again to how everyone is doing? I cant believe they lost the results for the MRI that's disgusting!
Also has anyone used or looked into aromatherapy I have a friend I meet through the hospital and she has just started with her little boy a hr a week and said it has been amazing? just wondered if anyone had any thoughts on it, or had tried it? Thanks in advance.

Hi Choggers, I've never considered aromatherapy. Is the intention for it do do anything more than relax?

I haven't yet considered any alternative therapies but would love to hear any experiences anyone may have had.

You lot and your sledges need to come and see me we've had 76 cms of snow this week.

We tried cranio sacral therapy age 4 for sleeping. It was lovely and relaxing for DGS and he enjoyed it, but it made no difference to the sleeping!

(Have I got your location completely wrong?! I think you've mentioned it in a previous post…)

I'm pretty sure its very snowy for much of the winter and they are big on ice hockey

Hi Choggers! ooh, ooh alternative therapies! Sorry, not tried aromatherapy so can't comment.

DD2 has been having Bowen therapy since about Jun 13. We've seen an exponential improvement in her condition, such that even the paed and physio asked what we were doing as her rate of development was inconsistent with their expectations (for the better). Her right arm became less stiff and has eventually uncurled, her balance has improved helping her to develop her walking, and she now utilises her right hand to some rudimentary/supporting role degree, i.e. I can get a fingered glove on her hand with each finger in the right bit of the glove

I got a steer towards Bowen from a post earlier in this thread and googled for a practitioner near us. We started going every week and we only go once a month now and our practitioner has never charged us (their kind discretion).

I decided to try it this month (with the same practitioner as DD2) to treat my migraine. After 2 sessions, I can definitely say that my migraines are fewer and less painful. I'll likely only have one more session. Cost me £30 per 45 min session with our practitioner.

And I'm not a hippy nor believe in many things that fail to have scientific basis, but this has just helped both of us and I cannot explain why. If it doesn't work for you, the worse that could happen is that you'll have had a nice relaxing massage for 30-45 mins for about £30…(DD2 takes about 15mins).

I've not tried anything else, but I'm interested and open-minded to hear what others say.

www.bowen-technique.co.uk/index.php

waves to Sneezecakesmum this evening . It's always us two hanging out on here all the time

I know i've had a cold and am using that as an excuse to vegetate in front of my computer and am recovering Off to bed soon so I can watch some more telly recover some more lol!

Yes. We are looking at Bowen for the summer. Its looks similar to the cranio saccral stuff but maybe a bit more scientific..ish!

Looks loveley and relaxing and we have someone nearby.

My philosophy is if anything works to any extent, do it!

Yes, I completely agree. I'll try anything that even helps just a little.

Get yourself off to bed with some hot choccy and a hot water bottle! I'm off to see if there's anything worth watching on telly, so I can drag the ironing pile out to make a dent in it . (I wish I had a telly in the bedroom, I'd never get out of bed lol).