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Got diagnosis - sneezecake the prize goes to you

(91 Posts)
ladylush Mon 11-Apr-11 23:45:35

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.

madwomanintheattic Tue 12-Apr-11 05:05:49

drums and keyboard. seriously grin
only a toddler drum, natch, pref one with flashy lights and sound.
and a keyboard to practise pointy finger isolations.

gloop for when she's in the stander (that cornflour stuff) - in a tray on the tabletop.

we borrowed a brilliant ball tunnel from the toy library - feed the balls into the funnel at the top and they whizz through the tubing.

in fact, i would suggest just visiting your nearest toy library and spending some time going through the sn racks - usually free for sn parents, and well worth trying out all sorts of gear.

are you signed up for portage yet? portage used to try out loads of different stuff with dd2 as well. big puzzles with grippy bits, etc.

dd2 loved her kaye walker grin

dx is a shock, but you sound relieved as well. i was on such a high when we finally got dd2's dx - just a relief that she actually had a dx and we knew what we were dealing with. confirmation really, as i had pretty much dxed a long time earlier.

how are fine motor skills? sand box great for all sorts of things.

dd2 hated splints. so find a decent dvd and go for max diversionary tactics if necessary.

and of course, keep up the gym ball work to strengthen the core...

sneezecakesmum Tue 12-Apr-11 22:20:08

Thank you,blush how kind of you. As well as being a nurse I am also doting nanna of DGS with CP, so have read extensively on CP - know thy enemy says me!!
Very smile that you know what the problem is, and that DD is really doing well and appears very mild.
Madwoman has covered loads of toys and activities, but with diplegia anything that abducts (spreads out) the thighs is good. DGS has a plush hippo that you sit him on a scoot him around the room (my poor knees!). He loves it though, it abducts his legs, flexes his hips, makes him sit up and control his head and hold on!! Brilliant all round work out but murder on the knees (mine).
Back lying and using each leg to kick at a balloon suspended from a light socket. The ability to get a flexed (bent) and an extended (straight) movement in the lower limbs at the same time is vital for quality movement. SD children tend to total extended movements worsening the walking motion, a little trike is excellent for reciprocal cyling movements mimicing walking motion. DD will do well I'm sure!
Basically with toys it is looking at what the childs problems are and using age appropriate toys to address the issue.

ladylush Wed 13-Apr-11 00:06:00

Thank you both for your (as usual) very helpful suggestions smile
Sorry for not replying to your posts on my other thread. It got kind of crazily busy with dds appts on top of ds sports commitments and I also went through another low point where I wanted to avoid posting on the SN board though I couldn't resist lurking from time to time!
The dx elicited mixed feelings. I had hoped it would yield more info about when the damage was sustained and the likely cause. For instance, I had heavy bleeding in the first trimester due to a subchorionic haematoma - til week 14. Somehow - I don't know why exactly, but I guess I'd have felt better if it happened then rather than later on as it would make me feel less guilty. Aaaagggghhh .........I have a lot of irrational guilt. The MRI report was vague - no suggestion as to when these changes occurred. But on the other hand it was reassuring to know that it wasn't anything more sinister than what we had prepared ourselves for!
Madwoman - dd's fine motor skills are good as far as we can tell. The PT feels it's unlikely dd will be accepted by OT. She doesn't qualify for portage because she doesn't have cognitive difficulties - that seems to be the criteria in this borough. dd has a keyboard - loves it. Will get a drum. Will also enquire about toy library. dd now likes the kaye walker. Enjoyed showing off her skills today. Also tolerating the gaiters (?sp) better and even the standing frame. So it's been a good week smile
Sneeze - that balloon idea sounds like a great work out! Must try that. She loves balloons - calls them balls (which she also loves) smile She's got a toy zebra thing that bounces, has flashing lights and music and is really good for stretching her abductors. She learned to get on and off it very quickly, though always gets off with her left leg. The right one seems to drag/have less control. The PT was very positive about her and said she thinks dd will do well, though may always walk on her toes. But she said opinion has changed about this over the years and that it may not necessarily be something they would try to change - it's about trying to achieve a balance between function and gait. Personally, I'd like both sad
Anyway, enough about me/dd for now - would love to hear how your dd is doing madwoman and your dgs sneezecake.

sneezecakesmum Wed 13-Apr-11 20:36:58

Hi there lady. I think you will find that your DD does very well, she is already well ahead of the game! I know the zebra thing, will have a look into that for DGS but his balance is appalling! DGS is 2.5 and was like madwomans DD (who is a bit older) when we started out, and same sort of birth injury causing different MRI outcomes than PVL and I think a more complicated picture. DGS started out tight and now fluctuates between ironing board and stranded jellyfish. The right tone is in there and he can, if he works hard, find it. Your DD has the tight tone in her legs, and needs a careful eye keeping on her growth.

Growth spurts are the dread of SD mums. What should happen is the muscles/tendons grow at the same rate as the bone. But often the bone grows too fast and the muscles/tendons are too short causing increasing tightness and discomfort. Keep a careful eye on DD growing and hopefully you will not have these problems. Extra stretches etc then.

DGS is a little beansprout (about as thin too) but doesnt tighten as he is a mixed picture, weak trunk, hypertonic on movement but underlying low tone. We went to Brainwave recently and even the expert there scratched her head and said he was 'complicated' confused so no wonder DD and I read for england to understand what we need to do. Also like madwomans DD his CP has gradually evolved over 2 years and the constantly changing picture has been difficult to grasp. Hopefully he's now stopped and we know we have to scrunch him up to stop the naughty movements (arching back) but thanks to brainwave we know why he does them. I cant recommend brainwave highly enough for CP. Anyway DGS is cute, funny, bright and, like madwomans DD, hopefully will get there in the end!

ladylush Thu 14-Apr-11 21:54:36

We now have splints but I struggled to get shoes to fit over them. Got some hush puppy Mary janes in the end. What type of shoes did u find best?

madwomanintheattic Thu 14-Apr-11 22:05:43

cheap as chips and take the insole thingy out (that is if they are afos?) the support is from the splint itself, so you don't need any support from the shoes. a lot of older kids wear trainers or converse grin spending a lot of money on decent shoes is a waste of time (for the ones you're using with the afos - obviously you need supportive shoes/ boots for when not using them. has your orthotist given you any ideas of decent local indie shoe shops? we had a lovely shop when dd2 was tiny that we could always get a fab selection of the most brilliant supportive european boots - elefanten etc. def worth locating one. ours was about 45-50 mins drive, but well worth it!

ladylush Fri 15-Apr-11 14:55:34

Thanks madwomanintheattic - couldn't find any cheap ones that were deep enough or that would do up. I think they are AFOs. For some reason one is cut longer than the other hmm Anyway, the hushpuppies seemed to have more depth. Will show the PT next week to see what she thinks. So far, have been just buying generic other shoes for dd though the last pair were from a small independent shop and I think they were a German make (Biomecanics) and were pretty supportive. I will email the Orthotist for advice on where's best to get shoes.

madwomanintheattic Fri 15-Apr-11 14:58:04

physio worth asking too - ours knew every indie shoe shop in a hundred mile radius grin <and always loved seeing dd2's new shoes!>

be warned though - it does rather spoil you. from gorgeous european styles you develop rather an aversion to clarks...

sneezecakesmum Fri 15-Apr-11 19:59:56

DGS has only just started on the AFO route and DD bought a lace up converse type shoe made of canvas in camouflage green from Next, ok for boys but not girly at all. Had lots of tips recently on MN re AFO wearing, - smooth thin socks, take AFO not child to shop, cheap and not needing to be supportive as the AFO does that, remove insoles, buy around 2 sizes too big to fit over AFOs. DGS also has some piedros on order from physio as he struggles a bit in his walker with AFOs on. They are free and come in pink I believe!
DGS is a bit alarmed when the AFOs go on initially as he hates his feet mauled but does forget them after a while. We're still feeling our way with them but most children we know with CP wear them and seem to have got used to them - sure I wouldnt tho!

madwomanintheattic Fri 15-Apr-11 22:35:09

we've had black piedros, baby blue suede ones (crap - scuffed within days), baby pink, red... grin only use them without afos though.

ladylush Fri 15-Apr-11 23:16:53

I was wrong - they are Spanish not German! PT hasn't mentioned piedros. Not sure why. I can see why you are spoiled now madwoman! Though price difference is not that great as far as I can tell.
We are starting to think seriously about SDR - in the States. All the therapists and drs feel it's too extreme for dd but the perspective is v different here.
What's your opinion?

madwomanintheattic Sat 16-Apr-11 18:58:29

way too early to think about it.

dd2 made biggest developmental strides around 3/4/5 yo. it was a pretty bleak picture earlier. by yr 1 she was independently mobile/ verbal etc.

agree it does sound interesting - there was a dad on the scope forum i think who took his son over for sdr at around 7/8? a while ago now. ds would be probably 9/10 by now, so it might be worth looking him up and seeing how everything is a few years on. i don't know anyone personally who has gone the sdr route.

imo 7 would be the earliest i would consider - i really think that until that point you don't really know where you are going to end up? had an interesting discussion with slt this week though. (she hasn't seen slt for ages - although she is still a little dysarthric it's not usually a problem, but at parent's evening her teacher made a big thing of saying she wasn't intelligible when reading aloud etc etc. as she's moving to a new school in the summer and no-one will be familiar with her speech i thought we ought to speak to slt and get their opinion)

anyways (long ramble to the point) blush slt thinks that at 7/8 we are as far forward as it is likely to get with clarity. as the dysarthria is caused by neuro damage etc, up to that point there is potential for new pathways etc etc, but that at 7/8 (and with her speech actually very good) it's unlikely that it will improve much more, so it's more about coping strategies if she needs them. and, more to the point, about school and responsible adults taking the responsibility of understanding, rather than about her.

this was sort of echoed by the eye team (she's had an alternating converging squint since about 3 mos which was operated on last summer, finally). the earlier you operate, the better chance the brain has to acquire binocular vision - by about 7/8 you are really operating for cosmetic reasons only.

sooooooooo, i dunno. i personally wouldn't consider it until 7 at the earliest, but haven't really looked into whether results are different with age... i suppose you could use the same argument with sdr? it's definitely made a huge difference in some children - massive. i can see why it's tempting!

sneezecakesmum Sun 17-Apr-11 22:59:06

We have a lovely friend who's 5 yo has SD CP too. She is looking into SDR in england and has seen the neurologist here. He said that her DS needed to strengthen his trunk first and then he would reassess him. His legs were suitable for SDR. With low trunk tone her DS would not have had the strength the make the SDR work as it takes intensive physio afterwards. I can see why she feels the need to do it as DS is in a wheelchair most of the time and is a reluctant walker. With wibbly little DGS the relief is enormous that its just not an option as he has no spasticity (permanent tightening) as such, and is low tone.
Your DD sounds quite mild and may have a fairly good gait with stretches, botoxes and maybe tendon release in the future. SDR isn't a magic bullet and looks very scary and lots of hard work - but has good results on milder cases of CP - its a real dilemma and thank heavens not something on our agenda!
The SDR thing is such a big issue and going to spark loads of debates about doing more cases in this country.

ladylush Sun 17-Apr-11 23:08:41

We've done a fair bit of reading and the surgery here varies considerably from the surgery in the States. There the recommendation is to operate around 3-4 yrs whereas here it's a fair bit older. I saw some awesome B4 and after videos on the net. I think the results for SD are better than for other types of CP. Tbh the alternatives aren't great are they. Baclofen or Botox. Dd might still need orth surgery when she's older but at least we'll know that we did all we could beforehand iyswim.
Yr dd sounds delightful - and v bright (as does sneeze's grandson). Dd had tongue-tie that was missed til I took her to a bf cafe at 6 mths. The bf counsellor who dx it (posterior tie) said she thought we shd leave it cos dd was feeding ok - bit hmm cos dd dropping centiles and had not gained for two weeks. Anyway we went ahead and dd had the snip. If we hadn't, I'd now be wondering whether any speech issues were related to that or the CP. Her speech is fab. She speaks very clearly and is stringing sentences together.

madwomanintheattic Mon 18-Apr-11 17:31:24

that's interesting lady - i didn't realise the surgery itself was different.

fab re speech. grin the slt also said (very honestly) that he was surprised by how clever she was, as automatically when you hear dysarthric speech, the listener assumes learning disabilities and drops perceived iq. sad he was very lovely about it, and apologised for saying it - and as a professional was aware enough to recognise ability beyond the speech issue.

not that this is news to us, of course. grin <even the label of cp is enough to hang a 'learning disabled' tag round your neck - hence why we had to get a full ed psych evaluation for immigration>

so good speech is truly fantastic. one less battle.

so true that you don't often know the root cause of any given manifestation though. grin we spent the first 5 years thinking 'is that related to the cp?' for anything and everything...

they are visiting their new school next week. grin i am working up to terrified. they are, of course, beyond excited. dang, this is always so stressful, but i must be doing a reasonable job if it's only me that's terrified, right? <mutters nervously>

madwomanintheattic Mon 18-Apr-11 17:34:59

oo, oo, wanted to share though <apols, but you'll understand>

i spoke to the new senco equiv at dd2's new school, and, and, <drum roll> as well as being a trained professional with lots of ifeas on how to access ot/ physio/ slt through school and implement in the classroom, she also has a dd with cp who is a couple of years older than dd2. and knows about every opportunity related to disability within the valley and beyond.

my new 'go-to' friend. grin

sorry - wanted to tell someone and give a little cheer, and you seemed like an appreciative audience! grin

sneezecakesmum Mon 18-Apr-11 22:47:39

We are all very peculiar people when we delight in meeting others in the same boat, even though it means someone else is going through the same trials and tribulations! It means though that there is a future out there that we can visualise rather than one shrouded in mystery!
It is great to speak to others in the same position though. smile
DGS hopefully going to one day a week nursery in september.
Today placed the little monkey in tailor sit and he just propped on his naff right arm and was busy turning the pages of the argos catalogue for ages with no support from us! Think he was thinking 'I'll have that, that and that for my birthday!' shock

ladylush Tue 19-Apr-11 00:30:37

madwoman - that is brilliant news smile I can well imagine just what that means for you. Apart from you lovely ladies, I too have been rather fortunate in that one of my friends is quite active in the SN community locally so I've benefitted a fair bit from that. But you have trumped me - what with your CP versed SENCO equivalent grin That is just fantastic smile If you ever fancy reading up on the St Louis SDR, there's a pretty good UK website created by the dad of a little boy called Henry Ford. It's pretty informative about the procedure.
sneezecake - that's really funny grin Kids love catalogues don't they. I bet the PT will kick him/herself once they realise they missed a trick there grin Catalogue therapy.......bit different to retail therapy!

madwomanintheattic Tue 19-Apr-11 20:09:13

dd2 propped until she was about 5 or 6 routinely. ot and physio eventually came to the conclusion that, really, it wasn't worth trying to get more functionality out of her right arm, we should just accept it and work with that knowledge, so go for more coping strategies etc. pretty much as soon as we'd stopped trying to make her use it, she started to more and more. it'll never be as functional as her left, but it's much better. she still pretty much uses it as a prop if she's at a table and writing or drawing, rather than use it to hold the paper <sigh> but she can do stuff two handed if she needs to. as a tot the physio used to place something way out of reach on her right side, and she would lean aaaaaaaalllllll the way over to get it with her left hand. funny, but frustrating. grin

we're visiting the school next week - i'll let you know whether my new best friend is as lovely as i want her to be! grin

loving catalogue therapy though. must do some of my own...

sneezecakesmum Tue 19-Apr-11 20:50:25

Has to be catalogues and internet as shopping with any child is a nightmare!

SDR at St Louis - have seen the videos on u tube and they do look so amazing - DGS doesn't need this type of surgery thank heavens, he uses his tightness to keep him upright, but because the tone fluctuates between high and low, he will lose concentration and collapse like one of those blown up high rise blocks. (we are always holding him tho)
SDR is horrendously expensive in america as well as being a major operation - 40K+ or something? People do fundraise for this though.

We have not given up on his right hand yet - its been coming open more and more and today sat on the grass leaning against me and his right hand was opening and closing on the spiky grass! Such tiny steps but always something new! If he uses his left his right fist tightens, but if he relaxes his left he has some slight control over the right confused He also leans fully over to reach something on his right!

ladylush Tue 19-Apr-11 21:45:24

It's interesting to hear how your dc/gc are getting on and that they continue to make progress smile
Sneezecake - Yes SDR is very expensive but if we went for it we would raise some of it by fundraising (not facebook - more friends and family/work colleagues etc). The cost includes intensive physio up to 6 weeks after, but I imagine we would then have to fund private physio once home. It is major surgery but the incidence of serious complications (when carried out by Dr Park) is extremely low. Other complications such as bladder incontinence have been temporary. The surgery is less invasive than it used to be, recovery is very quick and scarring minimal. The main problem after surgery is that the false strength that the spasticity/high tone provided is now gone so the child has to build up strength with intensive physio.......but I see this as a good thing because I'd rather dd develops real strength anyway as it may help protect her against osteoporosis in the future. The loss of spasticity will also mean she is less likely to be in pain.
Madwoman - dd's splints are DAFOs not AFOs. The orthotist thought it would be good not to curtail dd's movement too much (she is very active) at this stage, but to progress to more rigid splints when necessary. I think he also hoped that this might help dd's brain to acquire motor skills as she'd be active rather than passive.

sneezecakesmum Wed 20-Apr-11 20:23:06

Would a neurologist in this country be able to give you an idea of DDs probable outcome looking at her current gait? Some very mild children are no different that most NT children with their walking following a few botox injections and AFOs. Some as you say will develop stiff (spastic) muscles no matter what stretchng is done and will be looking at operations anyway. I think if DD is looking at the latter, and I think its a constant strain and anxiety with growth spurts etc I would probably go for it.

A friend of ours whose DS is 5 with SD is now in a wheelchair at school and she is also looking at SDR in this country. She says its incredibly difficult to consider major surgery but will always feel bad if she doesnt do everything she can. The St Louis Team now only remove 1 vertabra I believe instead of the previous 3, but I dont keep up with it much as its not an option for DGS. What I've found it that keeping up with new research and reading ++ is invaluable.

Look into going to Brainwave to get a really good picture of DDs strengths and weaknesses, it was brilliant for us and in just a few weeks DGS trunk is much stronger, head control fairly normal (except when tired) and his balance much better. All areas Brainwave therapists said we must concentrate on before we worry about walking.

ladylush Wed 27-Apr-11 21:38:49

Not sure - if we see a neurologist it will have to be a tertiary referral apparently hmm The NHS PT thinks dd will always walk on her toes and walk with one foot pointing in somewhat. The other PT (private) says toe walking often ceases when the child gets heavier.

sneezecakesmum Wed 27-Apr-11 22:12:49

If she is toe walking and you have a diagnosis of SD then surely she needs AFOs?? DGS a green ones with jungle animals! The feet are malleable at this age and dont take too much effort to get into a nice flat footed stance with AFOs. (think chinese ladies with bound feet!) Its just not acceptable for DD to 'walk on her toes' not unless they expect her to be in stilletos in kindergarden. Never heard of the extra weight causing the heel to drop confused

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