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.

This is her first growth spurt since diagnosis and starting walking so I've never really noticed how quickly she tightens up. Answer seems to be very quickly! At least she's small... just above the 0.4th for weight and under it for height! She still mainly wears 9-12 month clothes.

Can I be dense and ask what a tertiary orthopaedic surgeon is? We had a clinic last week with a community paed, an orthopaedic surgeon and a physio and it was there they said she'd have botox. As far as I know he was just a normal orthopaedic surgeon...?

I'm interested that frenchay do that op - it's only an hour's drive from here... wonder if dd would be a good candidate. What age do they consider them?

It all sounds good, madwoman - hope it continues that way - DS will have to start a new school next year and I'm already dreading it!

Galena - a tertiary orthopaedic referral is the next step. GP is the first, local hospital ortho is secondary and then next is the big hospital near you - e.g. Alder Hay, GSOH, Evelina etc depends where you are in the country. It can go to quaternary (!) which is a specialist hospital, but that is generally only done after the tertiary option has been exhausted or if a certain procedure or treatment is only offered elsewhere. We used to have a paediatric othropaedic consultant at our local hospital who was very good, when he left he was replaced by a general orthopaedic surgeon with no paed specialism and certainly no movement disorder experience. He pushed for surgery that would have been v wrong for DS, at that point we got a referral to a specialist at a tertiary hospital. It might be worth bearing in mind that you can request that if you want.

Growth spurts are killers aren't they. If ever I think DS is having a v wobbly time and falling over even more than usual the answer is usually that he's grown and not something more sinister which is what I used to think!

Hairy - I replied to the pm Thanks a lot for your info. The more info we get the better. dd saw the orthotist today as she needs new splints. He said dd is at risk of contractures in the future because of the high tone in her feet/ankles but that at the moment she can still get good range of motion when stretched. I told him we were thinking about SDR because of dd's high tone (which is dynamic - she is beautifully bendy when asleep or distracted!) and he said he'd seen a few kids who had it done (States not UK). He said out of those he's seen the outcomes seemed to be positive. He said it would be ideal to aim to get it done before dd gets a contracture (one of the kids he saw had the surgery after developing a contracture). Feel a bit worried now. Think I'll talk to dd's PT. Where is that bloody crystal ball?

that's really interesting, lady - good to be able to discuss it with someone who has seen outcomes, too. lol at the crystal ball - i remember saying it to a lady whose dd was born on the same day as dd2 when they were in scbu together. an unlikely pair - dd2 a 9lber wedged into a teeny incubator, and her dd a tiny tiny prem. they went to the same sn group too as tots both have cp.

i emailed school last night to ask the teacher to keep an eye on dd socially. she seems to be seeking out our next door neighbours (boys who are in different year groups) to play with instead of getting to know the kids in her class... and i sort of suspect the teacher might be seeing a bit of a gap widening between dd2 and the rest of the class. last night dd2 said mrs x had asked her if she wanted to tell the rest of the class about her disability. she originally said no, but then went back later and apparently said she would 'so that they were aware'. so proud of her but a bit terrified! she's not 8 yet! so i think they are going to have some sort of circle time chat at some point...) so of course my imagination has gone into overdrive.

do you think i'm over-reacting or being over-protective? i'm just a bit concerned that as the 'new' girl in a class who all know each other, she might be alienating herself from them by seeking out the familiar... she got to know the boys over the summer (they play with ds1) but i don't want them to feel obligated either - she isn't friends with the boys particularly herself, just through her bro... so she plays out when they are there. i don't want to dictate her friendships but i'm a bit tense lol!

Madwoman - Ooh that's a toughie - again you need that crystal ball! Makes perfect sense for dd to seek familiar faces. Maybe talking in circle time will create an avenue whereby dd starts to talk to her peers? Ime kids are often very interested in medical type things including disability. With the awesome Para olympics coming soon, it would also be a great learning opportunity for dd to tell her peers all the things she can do Is the teacher going to help dd?

they did it today apparently. she said they did ask some questions. one girl asked what dd2 liked to do for fun (which i thought was really sweet and seemed quite promising...) dd2, however, appears to have taken offence, she said 'i said, (girl's name) you are getting a bit off track! this is supposed to be about my disability!' way to make friends, dd2... i did suggest gently that x might have been being friendly, and it might have been a way of asking if she did the same stuff as everybody else - brownies, swimming etc, which she does. it would have been a lovely point about how utterly normal her life is... ah well.

i've no idea what happened really, but the teacher e-mailed me back and we're meeting up tomorrow. she said dd2 was 'very articulate'. no kidding. perhaps too articulate... but she did say she was lovely and an inspiration as well. i guess she's going to be one of those kids that always gets on better with the teachers than their peer group, lol.

anyway, will report back after meeting up with the teacher. it's probably all fine, but won't hurt to meet up and discuss!

maybe dd felt a bit patronised! She seems to have a healthy share of feistiness! My dd too She's only 2 but it's there!
It sounds to me like dd is defending her space but in time hopefully she will let others in and you won't worry so much

so the meeting was interesting. this morning i had an e-mail saying that the head of learning support wanted to come and meet up as well. ok, fine. we chatted a bit about recording (we know that eventually she'll be a f/t keyboard user - they don't see any point hanging about as it's probably inevitable, so will get onto that asap), about her speech (she's effectively been discharged from slt several times, as it's a neuro issue there's not a lot more that can be done, so it's a school issue/ self-help thing to remind her to swallow/ use her lips to improve clarity), and we talked around the social aspects i was concerned about (reliance on next door's kids! so they're going to move the kids around in the class and try and buddy dd up with some likely girls - if not they have a 'friendship circle' sn programme that they can implement if necessary, but they are hopeful that the moving around will work)

then they talked about funding. there seems to have been some issue in transition with whether or not she is eligible for funding. kids are coded here according to the flavour of their sn, and two years ago she was coded 44 (complex), this has some additional funding attached. however, the paperwork apparently now says 54. which is a general code for learning disability. and doesn't have any funding attached. they asked when her last ed psych test was, and it was in yr r, so they said she would be due for another assessment if she was a 54 anyway (every three years), so they might get that done. but i showed them the last ed psych report, which clearly says no learning disability, other than as a more able student with a physical disability she needs additional support for recording etc etc. they are baffled. i am baffled. that would give her code 80 (whatever they call g&t, i forget) and code 44 (complex) because of her ot/ pt and physical support issues (we talked about her needing transition support to get to/ on the bus with her coat/ shoes/ bag etc... apparently code 54 is used for kids who need 1-1 support to stay on task/ access the curriculum/ struggle with concepts etc.

so they are going to make some enquiries, dig around a bit, find out if there was a typo that removed funding (ain't that the truth) and get back to me.

but, they sound switched on and keen to support. even if they haven't got any money, lol. and at the moment, it will be class teacher that helps her with her coat and shoes and bag, and walks her to the bus.

sorry to go on! helpful to offload!

Sounds like you can relax a little then Transitions are always difficult but at least the school seem to be keen to support. Is there a SENCO or such like at the school?

dd starts nursery in two weeks (10 hours divided into 3 short sessions). Very excited for her It will be good for her to make some friends her own age - she's adopted her db friends (7 yrs)!

madwoman - that is very interesting about the coding. Sounds very complicated - hope they get to the bottom of the funding issues DD is starting school (primary) this week with no statement in place and more of a 'wait and see' approach! She will also have difficulties with recording/fine motor cos of her CP.

Was also interested in the SLT as DD similarly has neurological reasons for lack of clarity and we recently tried to re-refer for this (unsuccessfully). SALT also said it was up to teacher to make a decision about whether her speech was unclear enough to be an issue in the classroom

surviving, dd2 accessed some group phonology slt sessions in yr r and yr1 in the uk, which were really good. we also used the nuffield verbal dyspraxia programmes with dd2 - very good for helping with clarity. fortunately she was statemented for yr r, which was great - but of course her statement automatically lapsed because we left the uk, so if we go back we have to start from scratch again . this teacher seems good re speech - she's going to chat to dd2 about having a secret sign to remind her to swallow/ use her lips if she starts losing clarity (just catching her eye and tapping her lips) so that she can be as unobtrusive as possible.

she had a great yr r though - she still used a walking frame so needed a bit more supervision etc, and it was an old victorian school with lots of steps so they had to do quite a few adaptations for her. her TAs were great, v lovely. hopefully your dd will have just as good a time! x

lady, how lovely about starting nursery! little bit scary for you though, no? make sure you do something for yourself whilst she's out - even if it's just a magazine and a cup of tea... don't waste the whole time on mn!

DD starts preschool in jan which is a strange thought! Just 2 mornings a week.

Very interesting about the coding - does seem like a typo, but a very 'convenient' one. Glad the school seem so on side though. That makes it all a bit easier.

Interesting about the number of feisty children on this thread though - DD has always been strong-willed. Even as a 27-weeker premmie! I think every hcp we see comments on it and she's only 2!

Thanks madwoman - that is a great idea about the teachers subtle prompts for speech - that is exactly what would work for dd! I will talk to her new teacher about it.

Galena - feisty indeed My dd will be in for a shock when she starts school as her iron will may at last have to compromise. The sheer determination dd has to do whatever she wants and to get whatever she wants never ceases to amaze me! Problem is, she's having a growth spurt at the moment and is back to being all bendy and very uncoordinated - talk about good timing...!

dd2's first consultant paed said kids who have additional needs do much better with a good helping of determination. i think she was about 6mos the first time he commented on it.

if she's still drooling, surviving, our slt at the time suggested wearing those towelling wrist/ sweatbands - you can get them in rainbow colours and allsorts in places like claires or accessorize as well as sports shops. then kids can be encouraged to dab/ wip their own chin if they need to, rather than fuss about whether to take spare shirts/ sweaters to school/ bandana. dd2 wore them for a year or two. it's quite common for kids with low tone or oromotor issues...

Pleased to report dd is really enjoying nursery. Settled in brilliantly

If any of you are around, please have a look at my other thread re dd's x-ray results. Thanks.