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.

I have a feeling that, assuming OT agree (which I think they will - we've chatted informally to the OT in the past as she's at one of the SN groups we go to), we'll probably end up with a Juni which is the 'newer' Heathfield. It can also have either a tray attached or there is a folding table.

We have an adjustable height high chair (One of these) so she sits at the table with us. To give her the side support we've got a couple of yoga bricks (!) propping her up. Quite what we'll do as she gets bigger, I'm not sure, but we'll see!

Madwoman, the giraffe is cool! One of our (adult) friends has a 'thing' for giraffes... He'd love DD to have one of those... Don't think it's what she needs though!

lol at the yoga bricks! that's the good thing about breezi, you can slot whatever you need onto it, so dd2 has pelvic supports (like yoga bricks lol) and also arm rests. i think the breezi type of thing can be used all the way to adult, so maybe once she outgrows the one you have it's the way to go? she might be ok with standard tripp trapp by then? so difficult to predict!

those juni's look awesome! dd2's heathfield has groovy purple cushions, natch. must find it a good home.

Purple?! I'm SOOOO jealous! I would ask if you're anywhere near me, but we probably won't need it... :( but it's purple !

not unless you're the other side of the atlantic to most of the mn...

Ah well. It was nice to dream...

Has anyone's DC had Botox? DD will be having Botox in October - in hips, calves and hamstrings. Feeling a bit :( about it.

we were offered it when dd2 was about 2/3 iirc (in oxford). but because we move quite often the ortho was v upfront and said the next docs might not offer it (every doc has his own opinion on botox use and efficacy in cp) so we decided not to. we were also offered botox in salivary glands as an aid to stop drooling by the neuro. it was tempting, but a few folk on scope had had issues and swallowing had been further impacted, so we didn't do that either...

not much help, really, am i? but a bump for you anyway!

Hehe, that's fine. Luckily, DD isn't a drooler so that's not an issue for us. Just wondered if others on here had had it - I know quite a few people have.

Hi feeling very ignorant re the chair/table discussion! No knowledge at all about what's available. OTs don't seem to think she needs anything special at the moment. She has an Ikea wicker chair which she loves - and a standard booster seat for the table.

Galena - dd hasn't had botox. Two PTs were endorsing it but since outcome is estimated rather than predicted, we just didn't feel ready to go down that road just yet. I hope it works for your dd.

Saw neurologist. What a waste of time

Sorry to hear that LL. We are still away and but I haven't forgotten about replying. What did the neurologist say? We have never seen one. DS has no real neurological problems, apart from cp of course!

Neurologists are not much good once they know what is wrong tbh, as its PVL whatever whatever and off you go to physio/OT! Basically they cant fix anything unless there is epilepsy so not much cop! Botox has worked well with a friends little DS with spastic diplegia, and very tight legs and was mentioned for DGS a couple of times but the latest from ortho and physio is no significant tightness anywhere. Much more on the wobbly side and I am currently pondering lycra vests. We do trunk strengthening exercises but he is a lazy monkey and would rather flop than make the effort to sit, so this may help along with the exercises. will be asking physio asap if the OT department can supply one, but prepared to pay £250 SPIO vest from america if necessary to see if it helps him become more stable. Brainwave physio said it would help but not to rely on it and continue stengthening trunk (which we would anyway).

Hi I hope you don't mind me posting here, but I have read your thread. I don't know if anyone has mentioned to you about gait anaylisis (sp) at a hospital gait lab. My DD has had this and you get some really good feedback as to how the muscles are working.

I am not sure how they work out what is happening to the muscles as it is far to scientific for me. We found it useful as it helped decided what type of physio was best for her. Also what surgery may help and the best muscles to botox.

Thanks for the comments/advice. Haven't heard about gait labs - sounds kinda funny doesn't it. Will ask about it.

The reason we asked to see a neurologist was because we hoped (yeah....silly I know) that we might get more info about interventions that might help dd. In particular we wanted a more informed opinion about SDR. Instead the neurologist said we need to ask our gp to refer us to the uk hospitals who offer it - even for a discussion about it. Incredible.

Its a neurosurgeon that does the op (I think as it involves the spinal nerves) can't imagine an orthopeadic doc would do this SDR op, but I confess to being a bit ignorant about it. I would have thought the multi discipline team (inc the neurologist) would all put their thoughts in and do the referral to the hosp in question? Surely it is out of the hands of the GP if your are under the care of specialists, though its true GPs are the 'gateway' to the majority of referrals, but once they have referred you to the specialists (paeds) then its out of their hands? Ring the GP and ask them, neuros are all odd characters if you ask me.

Gait labs are perfect for sp Diplegia as the legs are more impacted by the CP. A gait lab would be used before any SDR treatment I would have thought.

gait lab referrals are like hen's teeth

we've only seen the neuro once (after the second mri at 4ish) to confirm dx etc (we had asked for second opinion as paed was refusing to change spastic quad dx, which by then was a nonsense) but she was v good. it was more for confirmation and to find out what the damage meant in neurological terms really. ll, have you spoken to scope about sdr? they used to have quite a lot of stuff on their info pages i think... no idea who controls the referrals or makes a decision though. weird that you've been sent back to gp - would have thought that wasn't quite appropriate...

well, everyone has started their new schools this morning. i had felt fine about it all (esp as the learning support contact's dd has cp, too) but of course now i'm a nervous wreck. i dropped dd2 off this morning as i had been told that they post the class lists on the first day of term, and we wouldn't know before then etc etc. i found her class list, and her teacher in the playground, and introduced her by name. the teacher just looked at me completely blankly, and had clearly no idea who she was. she didn't even recognise her name from the class list behind her... and she asked if we had only just registered. er, no. i showed her where the name was. she smiled and said hi, and that was about it. we followed her down to the classroom (at about a million miles an hour - she's going to have to come up with a different policy for a kid with cp, or dd2 is going to spend her entire time wandering the halls alone) and i got her sorted out, indoor shoes, hung up her bag, etc etc. i mentioned to the teacher that she is supposed to ride the bus home tonight, and that she hasn't ridden it before. she was fine and said they always make sure the kids are on the right bus etc. but no more than that.

the bus company and river (fingers x-ed) know that she needs to be last on/ off so that she doesn't get jostled, but there was no glimmer of recognition at all from the teacher that she knew there was anything 'different' about dd2.

so now i'm going to flap round the house for the next 5 hours.

i'm sure it will all be ok (even if the darn woman hot-foots it to the office at break to read the blardy notes) but dd2 was sooooo excited about school that i hope they don't ruin it for her by not being prepared. because if she gets upset, it'll be a crash course in over-emotional 7yo with cp, and she'll be utterly unintelligible. please cross your fingers for me that she has a good day!

just offloading really!!

who else has got a new setting to look forward to this year?

that should be driver lol, river makes nada sense at all.

Hope she had a good day at school madwoman and only teething troubles, teacher probably just as overwhelmed by all the new children. scary tho!
xxx

I'm sorry you didn't get what you wanted from the neuro appt - I know what it's like to pin your hopes on an appt and come away so disappointed with the lack of result or even discussion.

A referral from the GP to the two hospitals is the best way to go to get SDR assessments. It can be a GP or your local paed, we chose the latter option as ours is great and we have open access to her. Simultaneously we also asked for a referral to a tertiary orthopaedic consultant, in our case at the Evelina. If you get the choice ask for there rather than for GOSH, they are much more open to suggestions and discussion at the Evelina. The Evelina referral got us a gait analysis appt which was then forwarded to Oswestry who looked at it along with the referral and decided to offer us a week long in patient assessment. The other hospital in Bristol has a slightly different referral routes but in either case a tertiary orthopaedic consultant is a must, local ones are just not specialist enough and he / she will be the one to discuss possible interventions with, whether they are surgical, Botox, splinting or anything else.

The neurologists over here do not know enough about SDR and will not comment on it, it Oswestry the op is done by an orthopaedic surgeon rather than a neurologist. Other parents have been critical of that fact but imo there are pros and cons to both specialisms - the impact is so much more than purely neurological, in fact it is far more of an orthopaedic 'result' but there is no denying that the op is neurosurgery. We were seen by a neurologist at Oswestry (for a v brief 10 min discussion) who put his input into the meeting with the physios and nursing staff and surgeon to discuss whether DS was suitable.

All this has taken nearly a year and we are not there yet but getting to talk to the right people, at the Evelina and at Oswestry has been so so so helpful. At the Evelina we finally met a Dr who we felt knew more about SD CP that we did! It was so useful!

school was great - she came home buzzing and managed to negotiate the bus on her own phew.
no idea if the teacher worked it out or not, but dd2 came home with the new class newsletter with the teacher's e-mail etc on it, so i'll drop her a line and let her know i'm happy to meet up and discuss anything she's unsure of.
i can stop pacing now!

Glad she had a good day, Mad. What a relief!

We've been away for a few days, which DD loved. However, I think she's having a growth spurt - eating loads, sleeping loads and falling over loads. Ho hum.

does she tighten up really quickly with growth? dd2 just has random odd-falling-over days, the joys of athetosis and ataxia. i do wonder whether being short would be better for her in the long term (!) but suspect she's going to be tall like dh... lots of stretching to do at the mo then!

Oh yes....growth spurts. dd is having one too. She's on the 75 centile for height, less than 8th for weight! Shoe size has increased from a 3 to a 5 in three months. Dh, ds and I are all tall so I assume dd will be too.

Madwoman - so glad dd had a good time at school. Bet that's a weight off your mind If the teacher didn't notice dd's disability it shows how far dd has come - though obviously the teacher should have been more clued up!

Sneezecake - I laughed when you said how lazy dgs is. Such a typical boy

Hairy - thanks for the info. Yes, we had already decided to ask for a tertiary referral to the Evelina and I'm so glad that you have had good experiences there. Our Neuro Paed says she can refer us if we want to discuss botox or if dd needs ortho surgery later on. She's quite black and white Re SDR - I emailed the surgeon at Frenchay Hospital Bristol and was very impressed that he replied the next day. They do the same procedure as Dr Parks, though have only just started so have only done 5 (15 assessed in total).

i don't think it would have been a secret for long lol. but at the time i introduced them she was standing still and so her mobility issues weren't v obvious! although perhaps you have a valid point... eek, maybe she waiting for the poor little disabled girl to turn up??!! and since dd2 had her squint surgery last summer, she could almost pass for nt - until she tries to move or owt anyway or speaks... golly, i wonder!