Got diagnosis - sneezecake the prize goes to you

[ladylush]

So dd has PVL. MRI brain confirmed this.
We've now applied for DLA. I think dd should get middle rate but we'll see. Stretches are going well and she now has a standing frame which she tolerates for a while. We collect her first set of splints this week - ridiculously exciting! Not keen on Kaye walker but can use it. She still needs a chair. Loves her trike - hopefully the pedal action will help the pathways a bit.
I wondered if anyone could recommend a toy or product thats been particularly helpful.

dd2 had red w/ jungle animals.
get her in that standing frame and using the kaye as much as possible - the more weight bearing the better for hips as well as ankles! i think the idea with the weight bearing/ walking reducing the toe walking is that effectively it is additional therapy - as in stretching. we were always told that the more time dd2 spent on her feet (as in, with them as close to flat as possible, or being used) the less physio in terms of stretching would be needed. my sis has a friend that sort of backs up the theory - she has to have her tendons snipped to correct toe walking when she doesn't do her exercises. she tries to summon the enthusiasm, but when you're mid-twenties you'd rather be in the bar, i think. dd2's ankles improved hugely with weight bearing - much better amount of movement - not entirely to 90 unless we saw the one orthotist who had the knack lol, but much better.

we have 'ballet good toes and ballet bad toes', and 'physio good toes and physio bad toes' (completely the opposite lol). so on that note, i would recommend a ballet dvd. if you get the one we had, you get the 'not like that' wagging finger in time to the music... dd2 started ballet lessons at 4, before she could stand upright without holding onto something. the physio was ecstatic.

she starts her riding lessons on saturday and dh has managed to find a friendly metalsmith to custom-fit a handle to a second hand skateboard... when i'm after sympathy because i've got a crazy 7yo with cp in plaster to her neck, just tell me it was all my own fault, ok?

she visited her new school today, and had so much fun she's going abck tomorrow. only my children would beg to be allowed to go to school in the holidays. it means i have to get up early again

where is my pyjama day?

have you got a kaye with all wheels btw? or those horrid scrapy stop things? dd2 graduated to an r82 croc which was much better - more manouevreable. she kept taking her kaye over sideways (or memorably, backwards) because she tried to reverse against the stops. she was so heavy she could just lean on it at tip it. kerbs were a nightmare...

I help DD with DGS 4 days a week and work 3 days a week so pyjama days are a long gone distant memory! It will be worth it all in the end I know !
We are doing the Brainwave programme which is a lot of balancing, trunk strengthening and never enough time in the day. But thanks for reminding us we need him back in the standing frame wearing his AFOs. Has takento hitching his legs up and swinging back and forth on the gait trainer - not the ideal Had him in his swing today in the sunny garden - keep telling ourselves its helping his proprioception
DD in throws of moving house to get a special room for DGS and all his stuff, but also going to have a kitchen extension built as soon as they move - o stuff of nightmares!!

dd2 used to do that with her kaye - get up speed (or find a slope) and then free wheel with her legs tucked up. hilarious! but, you know, it's freedom,and playing with your body by working out what it can do. and really, nt kids are running and changing direction, and spinning, and jumping - a bit of waving your legs around or tucking them up instead of walking sensibly is probably the biggest sign of 'normal' there is she also worked out how to hook her legs up in her standing frame, so that she was effectively held aloft by her bottom and a strap on her thighs

dd2 loves swings etc too - lovely to be outdoors! (the last few days have been like living inside a snow globe here - one minute it is blue sky and calm, the next it is literally swirling with snow. and then ten minutes later stops compltely again. on. off. on. off.) still, they had a fab day at school, and have made loose plans to meet up with New Best Friend so the girls can say hi.

we're moving too. to a much smaller house with a lot of stairs. hope the move goes well and the space is a bonus!

The house looks to be falling through because of a boundary dispute...but..the house DD wanted originally is back on the market all done up. 50K more but refurbished and it was their dream house so going for that now. I hate anything to do with house buying, but its got 4 beds so DGS can have one of those for a therapy room. I'm a nervous wreck thinking they will have nowhere to go in a month!
Yes DGS was laughing and swinging his legs, we were horrified thinking he would never get the hang of walking, but need to lighten up I think.
He was sat emptying my handbag then putting all the stuff back today, something DD used to do and he was self directed his hand is coming on in leaps and bounds, just got to get the right one doing something! Meant DD and I could look at schools on tinternet!

PS reasonably sunny and mild here and snow a distant memory!

Good luck with the move and hope the dc/Dgc settle in well. Yes dd has a wheeled Kaye - aka furniture destroyer! She loves swings as well. We haven't got one in the garden but we go to the park fairly often. Saw the Neuro Disability Paed yesterday. She is going to refer dd to a neurologist - at our request. She thinks dd is moderate - mostly because of the spasticity. Adds weight to the SDR option I reckon.

lady I would get armed with all the facts regarding SDR and discuss this with the neurologist. Even if he doesnt do the op (well, he wouldnt- that would be a neurosurgeon, doh) he can give you some information and it is nice to discuss things with really well informed people. Our friend who is looking at this for her DS had a physio who was so against it she she she would never come back if he had it done . Bit OTT and blinkered but also off putting.
DD and SIL have pulled out of that house as there was an ongoing dispute with the neighbour over a retaining wall!! So they are going for the one they originally wanted but was snapped up by a developer. Much more expensive now but their dream house. Really hope they get it as its ideal for the little monkey and all the equipment.

I wonder if all the brainwave therapy to strengthen his trunk and improve his balance is making his hands work better. We were told thats how it works, and hand is suddenly loads better and controlled. ? CP - so puzzling in little DGS!

sneezecake - hope the new house works out ok. Must admit - a therapy room sounds great
We will discuss SDR with the neurologist but I just hope that they are acquainted with the procedure in the US as it is so different to the one performed here.
I'd have accepted the neurodisability paed's view more if I thought it informed!

So....................dd was awarded low rate DLA (care component) - for toiletting needs That's the least of her care needs! She's still a baby ffs. So all the physio exercises, the fact she needs much extra supervision, the fact she can't stand up etc. etc.. seem to be of no consequence. I wasn't expecting high rate cos she doesn't have night needs, but I did expect middle rate because she needs much more than one hour extra support in the day.
We've asked DWP to look at the application again and have included a report from the Physio.

toileting I mean

Thought I'd come back with an update. Got DLA claim looked at again and they awarded middle rate this time - so we are pleased about that. It really helps toward the cost of private physio (only has NHS physio once a month now and I suspect it'll be even less frequent soon).
We are still very much thinking about SDR. Waiting for the appt. for hip xray to come through, then we can send off the various info requested by the team at St. Louis children's hospital. There was a feature on Daybreak today about the St. Louis SDR surgery.
dd is now 2 yrs old. Still not walking but she can walk a little way holding our hand. She was assessed by OT recently and they couldn't elicit any delay in fine motor skills - and as we suspected, they concluded that her speech is excellent. They'll continue to be involved in the background with advice re settings etc, equipment and should her fine motor development become delayed in the future. We are looking into nursery settings at the moment as she is entitled to 10 hours funding a week. She is sooo ready for nursery I think. Getting into all kinds of mischief at home - will enjoy the stimulation of a new environment as well as the social interaction.

Ladylush- will pm you tomorrow re SDR. Am
On phone now and it's too hard to type properly!

Ooh thanks I look forward to it.

Well done re DLA, lower rate was no way sufficient for the care element. DD sounds to be doing very well, please keep us updated re the SDR surgery. Sounds incredibly scary, but DD sounds an ideal candidate.

Thanks sneezecake I don't think they even looked at her initial application - just tried to get away with paying the least possible. I suppose a lot of people don't challenge. But it makes a significant difference to us. We are now able to afford her fortnightly private physio. How is dgs doing? Had some more good news recently. dd has got 10 hours funding for nursery. She is very ready for nursery - I think she'll love it.

Hi, can I just leap in and say 'hello'. DD has recently been diagnosed with SD CP. She's 2.4 (ish) and very articulate (well, in my opinion! Although various professionals have mentioned how bright she is... girly swot! )

She started walking unaided in June and is still pretty wobbly and falls over a lot, but getting there. She has never had a Kaye walker (just as they started considering it, she began walking independently with a much better gait so they decided to hold off).

Physio wants her to have DAFOs, but orthotist feels that DAFOs over the hot summer months would be an unpleasant introduction to them for her, so wants to leave it a couple of months!

Just had a letter from DWP telling me that the decision for the DLA claim will be delayed because they've written to the consultant (not quite sure why - I included her last report...) Ho hum.

Anyway, that's me. Always interesting to meet other people who know what it's like.

Hi Galena Great to hear that your dd is doing well Did you have an inkling that she may have CP?
Re DLA - it's quite usual for the DWP to request additional paperwork from the consultant. Unfortunately, the consultant's reports aren't always the best. What's the physio like? My dd's physio did a great report specifically for the purpose of the DWP re-looking at dd's claim. In 6 months time your dd will be eligible for the mobility component of DLA as well. We were advised to start preparing this claim a couple of months ahead of her 3rd birthday.
I've had a lot of support and advice on this board from parents a lot more knowledgable and experienced than me but sometimes I find it helpful to just come on and give an update of where dd is at - to people who understand. It can feel quite isolating at times in RL where people ask and are caring but don't really understand. Feel free to pop in any time

hi, I thought I would pop in again too, (namechanged back, I much prefer hildathebuilder to my other aliases) my ds is doing a bit better after his spell back in hospital with haemophilus influenza, (now confirmed not to be hib, but closely related). His breathing is more of an issue than his cp at the moment, mainly because he really really hates the inhalers.

Anyway after having started to commando crawl at 12.5 months corrected he is slightly more balanced and beginning to crawl normally at 14 months corrected.

Physio recommended shoes rather than piedros and we have now converted her onto ecco childrens shoes as more use than piedros given the support. she's now recommending them to others so long as their feet are bigger than size 19.

We are having weekly physio from the NHS, got an appointment with orthotics and an appointmnet for Lycra short for a few weeks. Ds has hypermobile hips so his legs are a mess all in all, his hips point out, his knees lock and his feet point in. I am told everything connects to everything else and we have to try and correct it all.

He can't cruise or walk yet. I am being told he is doing well but that it may be another year yet. I suspect it will be quicker than that but who knows. His standing is getting better, and balance and he will pull to stand now, as well as push up into 4 point and just about push up from the floor to sitting.

We put the application in for dla, with 7 medical reports from the cdc (listing prematurity, delayed development milestones, bronchiloitus and wheezing, family history of hypermobility (thanks DH) and respitatory issues, and Reflux, a report from nursery, one from the physio, the print out of the physio exercises and their target list, the medical report from the hosptial stay and the meds list. Hopefully that will be enough. The gp was happy to provide a report too but he doesn't ever see DS as he's followed up in hospital and we have open access to the paed ward so are told not to go to the gp apart from for a repeat prescription of clarithromycin when he gets a cold.

DS in the meantime has taken to breathholding when he is frustrated he can't move, apparently he has gone blue twice this week in nursery.

Oh well. now I just have to try and sort my elderly and infirm mother in law out with her care package, and carry on working ft.

Gosh hilda You really have got a lot on your plate. Sorry to hear ds was ill - didn't realise. Must have been very stressful for you. The breath holding is scary. dd doesn't do that thankfully but she went through a phase of smacking her head when she was frustrated. We were advised to ignore it, but not easy to ignore breath holding!
Interesting that you were advised to get ecco shoes. I might check them out.
dd has outgrown her splints so we are waiting to see the orthotist. Her foot turns in more when she wears the splints.

Hilda - that's so hard! And to think I feel stressed with 'just' DD's care...

Your DS and my DD sound so similar! DD took about 6 weeks to move from commando crawling to proper crawling (commando crawling at 14.5mo and crawling proper at 16mo) - also began pulling to stand and taking occasional cruising steps at that point too. Then it took 10 months before she started standing unaided. However, she went from standing unaided to taking her first steps within a couple of weeks! She also has hypermobile hips (and ankles to some extent) and asthma requiring 5 readmissions thus far.

I will also have a look at Ecco shoes - we got through the winter with some snow boots from Mothercare which our physio fell in love with at first sight (I'm so hoping they sell something similar this year as she's grown out of our stockpile). But then, you can guarantee we'll find some lovely shoes that give lots of support and then they'll stick her in DAFO's and it'll all be a waste of money... Ladylush, does your DD have DAFOs or AFOs or something different, and what's the difference? I'm a bit clueless about it all!

The physio seems good - sometimes I feel a bit low because she doesn't seem to acknowledge to me when DD makes progress, but she does notice it and will mention it when she can see I'm feeling down, IYSWIM? Also she's coming to work on her day off on Monday to attend a clinic with us. Let's put it this way - she seems rather more competent than the physio who signed us off when DD was 8 months old (5 months corrected age) telling us DD was doing absolutely fine and that there was no need for her to see us again.

Had a physio appointment today before our joint orthopaedic clinic on Monday. There will be an orthopaedic consultant, a community paed (although not ours, which slightly puzzles me) and the physio. There will be various tests and measurements made to provide them with a baseline to compare to as she grows and changes. DD's going to go ballistic... Will have to take lots of snacks! Then on Tuesday we've got an OT appointment for providing a chair and table for her. Hopefully we can also discuss other things with them - a potty chair for one thing as she is quite precarious on a normal potty.

(Sorry, really long novel will end here!)

nice to see this thread again!
potty chair great, galena, dd2 used them at school. we had one for home for a while, but the ot decided that a toilet support/ surround thingy would be better for home. hope appt goes well!

Quick one from me.....Galena - dd has dafos. I still buy other shoes for her as the physio said it's good for her to have both. And I dislike the splints because the shoe has to be 1.5 sizes bigger than dd's actual foot size. dd is petite (though tall) so her feet look like boats! dd has a potty chair. A Pepper Pig one! We got it from mothercare and she gets on an off it relatively easy. You could try a few in mothercare perhaps? Interesting that your OT dept are prepared to provide a table and chair. Ours said they would get her a chair when she's older.

ladylush - will reply to PM next week, we are on holiday now and I've not really got access to computer!

we bought our own Heathfield chair which has an tray table thing, (we self-funded for nursery because we moved a lot and it could transition with us). it's now in the garage gathering dust must remember to take it to new ot and see if they can make use of it.

we decided that seating was more important for home so that dd2 could join us at the dining table, rather than having a lower seat and table - so ot funded a fully kitted out breezi. (which she still uses as it can obv be adjusted.)

we went through the usual gamut of jenx/ tumbleform, which were all great at floor level (jenx giraffe also had tray table) but for socialisation and fine motor practise it was more beneficial for her to have appropriate seating for her to join us at the same height as everyone else - so breezi it was. there are great chairs available for those with more complex needs, but a breezi is still great for dd2 at nearly 8. we've had that one for about 4 years.