dd may have cerebral palsy and I am struggling [sad]

[ladylush]

Not sure if I am posting this in the right section. dd was born 10 weeks early. She passed all her screening tests and did well in scbu. Her locomotor skills were delayed but we expected that because of her prematurity. At 14 months she was seen by a pead (I requested referral) because she wasn't supporting well when sitting. The paed said she was fine - slightly delayed but not when taking into account the prematurity. She was seen again at 18 months (couple of weeks ago)as standing on tip toes and not walking. Paed said her achilles tendon was tight and referred her to physio. Otherwise no concerns. We didn't want to wait so took her to a private physio. Physio immediately seemed concerned when she examined dd and eventually (after much probing from me) admitted that she thinks dd has diplegia (legs). Unfortunately this news came at the end of the session and there was only time to ask what end of the spectrum she thinks dd is and what her prognosis is in terms of walking etc. Today I can't seem to stop crying. It is just so hard to accept - particularly as dd seemed to cope so well with her early arrival and all that it entailed. I know we don't have a diagnosis yet but I'd really like to hear from anyone whose dc has CP (particularly diplegia of the legs) who may have some advice about what we do now and what we can expect. TIA

With regards to vaccinations:

My DS has not had any at all. I went to see a doctor (Richard Halverson - I think his name is) at Baby Jabs in London.

www.babyjabs.co.uk

DS is now 4 and I think I'll not give him any of the vaccinations now.

This doctor has written a book too which tells you just as much as meeting him really.

He is not into the MMR at all (as far as I could tell from reading his book and speaking to him). He seems to think that none of these things are killers - as suggested by GPs etc

Its a really interesting book to read, anyway.

A homeopath/GP told me a long time ago that children with any kind of brain trauma should not be given vaccinations as they cross the brain/blood barrier. She said they should be the ones that were to be protected by the herd immunity.

Thanks skewiff - it was a tough decision to make re the DTP (she had it). I think I need to think hard on this one.
Glad to hear some of u haven't needed to make many alterations to your house.
madwomanintheattic sorry yes I did see that your dd walks. That's brilliant :-) What's her gait like? Instead of aids I should have asked about orthotics - does she wear splints or piedros?
Feeling much better today - negotiated a clinical plan for dd yesterday. No crying today :-) managed to eat as well.

badkitty great to hear how well your ds is coming on thanks for offer. Would be lovely to do a meet up at some point. Will PM you

she doesn't now. she wore piedros up until she was 6. now she gets away with regular shoes and boots, but we always look for more supportive styles. her gait is ok - functional! she's got a bit of a lean in one direction and she doesn't stand upright unless she is prompted - sort of leaning tower of pisa. it's one of the things we work on in physio blocks, and one of the things i like ballet for. we tried a chiropractor for a little while, which was interesting but not really conclusive...

she had splints for a couple of years pre-school, but whilst they made her steadier, they removed a lot of mobility, so it was a balance between balance and movement lol.

look after yourself - chocolate essential, wine optional. x

That's interesting......the dilemma of balance or movement. Crumbs - this is very complicated indeed But it's great that your dd can wear normal shoes

dd has her first (private) physio session tomorrow so dh and I are looking forward to learning the exercises we need to do with her - and basically just feeling more useful than we do right now.

I almost had meltdown again today when I battled with the NHS PT dept. There was no record of a referral Furthermore, it's a separate service and they have their own rules and systems. Despite being told by the Paed that the waiting list is 8-10 weeks, the PT dept said that it's up to 18 weeks Furthermore that's only for assessment. dd can't see the orthotics people til she's been seen by the PT dept. Aaaaggghhhh Their service doesn't make provision for priority referrals either. Well it wouldn't would it Computer says no. Defensive clinical practice - I hate it. Think I will send a letter to the dept. to suggest they review their policy in light of the evidence base for early intervention therapy for babies with CP.

It is well worth writing to your PT department. But write to you Primary Care Trust (if it still exists ...) and your MP too.

We had an 8 Month waiting list for physio for our son after he had been assessed. I wrote to all of the people I have listed above and took complaints higher and higher (in writing, it wasn't too much hassle) and the wait was cut drastically.

HOWEVER I will say that now having had nearly 4 years experience of physio etc that what has been given on the NHS has been rubbish in comparison to what we have paid for. Some of its been OK (it depends on who you see), but its very often sporadic and there just hasn't been the same specialist feel as we've got privately. I think this is because the NHS physios deal with every single thing under the sun. Whereas what you pay for is usually CP speicialised.

There are charities: Caudwell Trust is one of them, that help pay for lots of therapies. Tree of Hope is another one and there are lots more. I panicked at the beginning when I realised just how much we were going to have to spend on our son. But we have been helped a lot.

Skewiff - how often does your ds have PT now?

Has anyone explored stem cell treatment?

Stem cell therapy is very controversial at the moment and a lot of rip off merchants out there. The only one even thinking about at the moment is the baby's own cord blood stem cells frozen at birth. Even then??? I personally wouldn't touch it with a barge pole at the moment.

We have been incredibly lucky with physios. They come to DDs home as DGS is very in a strange environment. And they are specialist paediatric physios dealing with CP. Loads of experience and been coming since birth. We also get weekly hydrotherapy via the physio dept. and sensory room via OT. and portage (that took around 7 months). Our area is very fortunate with services, equipment etc but we are fearing cuts

we also had physio from birth. twice a week, came to the house, brought eqpt on loan etc.
we've had no problem with therapy at all tbh, but it's very much a postcode lottery and making the most of any service you are offered. once you are through the door it will get easier...

If I ever had another baby I'd arrange for the cord cells to be stored. Bit late for poor dd now The science looks quite encouraging - over 60% success rate, but it seems more research needs to be undertaken.

Took dd for PT today. She cried much of the time. Hope she will be more cooperative in time. It was hard to concentrate on the techniques with dd crying. I don't think she was hurt - it was just being handled by someone she doesn't know very well in a new environment. But she likes the PT - still smiled at her at the end of the session. PT thinks dd defo has a mild form of diplegia. She was encouraging and I was relieved to hear that dd has the potential to lead a near normal life - swimming, tennis, marriage!

PT is v expensive How long did you need to continue the twice weekly sessions? I had a look at the links for charities that help fund therapy but we are above the income threshold for assistance. It's right that the most needy get help - but we still can't afford it. Esp. if the mortgage rates go up.

We have found that the physio sessions for DGS give us a good basis to work on but the majority of work - on a daily basis - has to come from us (me and DD). Children need a minimum of 2 hours of physio a day, not a week. Ask the physios what you should be working on.

Luckily both DD and I are nurses so the anatomy and physiology side of it isnt a mystery! But any parent will tell you it is the constant repetition, stretching and encouraging that brings results. It does depend on the level of disability, DGS is a very mixed picture and needs work in every area. Having said that he is not badly affected anywhere in particular, just when you add it up he needs top to toe work! PS It is knackering at times!
Go to Amazon and get this free delivery at the moment!

Thanks for that link Sneezecakemum Will order it. 2 hours of physio a day? I really don't think dd would put up with that. She's pretty feisty! Could probably manage an hour broken up into 15 min sessions. I'm a nurse too but psychiatric so anatomy knowledge could be a lot better! I suppose I'll be well equipped to deal with the emotional side of things when she is older!

You'll gradually both get trained up ladylush and it'll become second nature for you both. Part of me would love to just play with ds but I can't seem to switch that side of me off.
No-one ever believes how many hours I put in with ds. Has gone down to 2 1/4 hours each weekday now he's in school full-time. He then also gets 35-40 minutes PT and OT programme + SALT programme at school plus 3x an hour's therapy of each type each week. (But he's older and more disabled than your dd.) Our Brainwave programme is 35 minutes (gets done w/ends) when I also up the amount I work with him by another 1 1/4 and he gets PT for an hour every other w/end.
Have got to the point where I can tell the difference in how much he's done at school.
Stretching is 2 x 15 minutes of this (do his physio in 2 slots). When he's growing it needs to be at least twice this so the amount of physio/day goes up.
Maybe once you're on top of knowing what you're doing you can reduce the PT sessions to once a week (thinking of managing it long-term)?
Imo ds always gets a boost from a session with a qualified therapist and they get better results than I can achieve on my own at home. At the end of the day it's a partnership between you, the therapist and your dd that will get results for your dd. It is just a long hard slog. Ds needs things repeated hundreds if not thousands of times for him to get it. Dh and I consider it an investment in ds's future.

yomella - yes, it's really obvious when a particular therapy slides somewhere - we can tell when dd2 hasn't been working on her slt as she staets becoming less intelligible.

ladylush - we have never paid for private physio, through a charity or otherwise. all of our therapy has come from the nhs. we've had brilliant support. it's just getting to the top of the waiting list that is the problem usually. once you are in, you'll be fine.

i was a bit attila the mum from a pt pov and it does just become part of your routine. the physio was always faintly shocked by the amount of time i spent working with dd2. but i did devise a few new tricks which she then incorporated into the therapy for other kids lol, so i like to think it wasn't all wasted time...

our nursery just got funding for the keyworker to do 2 hours of physio a day with DS. Before we got the diagnosis of cp, which I am still not sure about. But the govt came good with the cash. Is your dd in a nursery. could they apply?

Also how do you find private physios. I have no idea?

No dd isn't at nursery. My mil looks after her on the days I work. I don't work Thurs or Fri. MIL is very good with her and will be able to do the exercises with dd once she's learned them. I tried doing some with dd this morning and she wassn't amused - kept tensing up.

Sneeze - I ordered that book last night.

Private physios - we just googled paediatric physio therapists in our area. But anon might know some since you live in the same region?

Hello Ladylush,

My DS is now 4. He gets no physio on the NHS at all now - well he's seen for an assessment every 4/5 months.

I haven't made a fuss about this, because we've found our own routes that have been a lot more helpful to him. For ages we did tonnes of hyperbaric oxygen therapy. Now we do Scotson technique and something called behavioural optometry for his eyes (but is also helps him physically). Its all stuff I can do myself at home which I much prefer.

You find eventually that you know so much more about your own child and their needs than the professionals. I have done anyway.

My DS has always been very strongwilled and resistant to physio which is why I went down other routes. I do a lot of the stuff like Scotson and stretches in front of the television. (I was always very anti TV, but its been a saviour for us in this way).

Did any of you go on to have babies after your other dc were diagnosed with CP? Dh and I were open to the idea of another but I don't know if this is fair to dd now that she will need so much of our time.

Ok so DLA........did your dc need a dx before you could apply? Am thinking this money would help loads toward the cost of private physio and anything else that dd might need to assist her.

no dx necessary. dd2 was awarded from 6mos because of the level of care required, but her needs were higher.

tbh though, i would hang fire for another month or two whilst the paed sorts out referrals and you know exactly what you are dealing with. easier to fill in the forms (it's a million pages where you have to specify by the minute, day and night, what additional care is required, what additional services/ professionals they access etc etc)
the more evidence you can supply the better. if you only have a dx and have no concrete detail on therapies required, and time it will take, it will be more difficult to prove.

loads of folk go on to have more dcs. for uss, dd2 was dc3, so we were pretty much done anyway. dh hsd the snip fairly soon afterwards because the hospital were still claiming that they didn't know the cause/ might be genetic etc etc. (way after the snip, and on second mri, the independent report said brain damage in classic birth hypoxia pattern). as we already had three, the risk of a genetic complication wasn't a risk we were willing to take. now i would happily have had another one (with a planned cs) but too late.

in actual fact, i think siblings are enormously helpful for kids with sn (particularly pd) certainly it has 'normalised' dd2 and stopped her becoming too precious with the constant stream of adult attention lol. she can argue with the best of them and doesn't expect any special treatment on account of a very small aspect of her make-up.

nurseries etc can be really beneficial too, in terms of socialising with peer group - very very important, particularly with dcs who are going to lead a pretty normal life and attend mainstream school etc. the only difference really (once they get to school) is that dd might have a couple of appointments a week, and might need some help with mobility. we found that dd2 did get a bit precious at nursery and would speak in terms of going to play with mrs x (her 1-1), so we had to step in really quickly and tweak the balance. mrs x was there to enable dd2 to interact with her peers and access the activities, ie to help promote independence, not to mollycoddle lol.

so, if you want other dcs, go for it.
you've got plenty of time - in a year or so you'll have a much better idea of ability, and will be much more reassured what the world holds for dd and your family.

We had another (ds was nr 2) 2 1/2 yrs later. He's gained a lot from both siblings and loves nothing better than hanging out / playing with them. Always used to fix his attention on his older brother, but lately it's his sister. She's totally freaked out because he follows her everywhere and is constantly nicking her toys! Developmentally they're about the same at the moment cognitively so he also delights in her routine. Then there's going to school and playgroup that the others do, parties etc etc..... and all their friends - all of which he benefits from. Means there's always plenty going on iyswim.
Would have liked 4, but it's too tough doing everything myself.

Lush: If DD is a bit resistant to 'physio' make it a game. Sit her on the floor between your legs, her back to your chest. Hold her hands and rock backwards and forwards singing 'row, row, row your boat etc. It does fabulous stretches of her hamstrings, she doesn't tense or resist - because its a game! You just have to outwit them!

We have DGS sitting on his little bench with DD in front doing Incy wincy spider hand movements, while I'm ready to catch him if he wobbles sideways (less and less nowadays!)

How about sitting cross legged (tailor sitting) in front of the V Tech baby walker - its the perfect angle for him to lean into it to press the buttons and again lovely leg stretches going on.

Loads and loads of similar ideas in the book you ordered - basically make it fun

Hi Ladylush - sorry I haven't come back to this thread - you've got loads of good ideas here though. Have a look at this It's a conductive education place, charity run so free to users. They offer one session a week and give you loads of ideas to practice with at home. Give them a ring, it's in Putney and probably has a waiting list so worth getting in touch asap. We went for nearly 3 years and now see many of the same children at the Riding for the Disabled place we go to.

Incorporating physio into everything is the best way to go about it definately, but I must admit that since DS has started school we hardly do anything at home. DS have physio once a week at school, rides every week and has 3 lots of intensive 3 week blocks of physio a year. Other than that we get him riding his SN trike as much as possible and swimming similarly - we are going to start lessons after the summer to add to the once a week he goes with school.

IME having a sibling or two is the best thing you can do for your DD. DS1 was just over 2 when DS was born (in fact there due dates were the same week, DS1 just arrived early!) It 'normalises' everything and playing with a sibling can provide great physio opportunities! We have stopped at two but I often think another one would have been even more helpful!

We applied for DLA at 13 months and got medium rate straight away. WE did however get it countersigned by our physio who was very supportive of it. I think a professional signature is necessary. When we first got it I used the money to pay for a cleaner as I had therapy sessions or appointments four days out of five! It now goes towards the private therapy though.