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

Hi Ladylush - I think we met on the
conception thread 2 years ago? Sorry to meet you on the SN threads now but happy about all the support you will get here. DD has just been diagnosed with an extremely rare genetic disorder. So I can't help with any CP knowledge, but I have been trough all the stages of grief/despair/hope after a diagnosis in the last month. Especially when the DC are doing overall well, a diagnosis is a shock.
Okay - it's always a shock, but if you know something s wrong, a dx can be a relief, because you can put a name to it. I think it will get better, once we get used to the thought and do whatever needed for DC. We won't love them less, that's for sure! Also it's early days for you and it will be better the more information you will get. It sounds like DD has a relatively mild case? All the best.

hi ladylush, dd2 has cp (she was originally dx with spastic quad but re-dx athetoid at about 4) she was born term but suffered birth hypoxia.

cp is just such a scary scary idea when you know nothing about it - and google is a very bad thing! despite dd2 being very poorly at birth (5 weeks in scbu, discharged with physio and slt, and dla from 6mos) we were not dx cp until she was nearly 2. it's quite common for docs to delay dx, or use a 'developmental delay' dx as children can make very good progress.

anyway, we were told she might not walk, and probably wouldn't talk. she did everything, but later than normal, and in her own way. she's 7 now and goes to mainstream school (she taught herself to read at 3, and is always top of the class, despite not being able to write legibly ). she rides a bike (a low-rider so that she can get on and off herself) and is learning to ski. i'm not boasting, rather letting you know that anything is possible.

dx is such a shock. physio and other therapy seems eternal. but a cp dx really isn't the end of the world. it will be one thing about the child, but it won't be everything about the child.

dd2 used a standing frame and then a walker -she eventually ditched the walker after yr r. (she used it in the playground so she could run around with everyone else). all the other kids were dead jealous and eveyone wanted a go on her wheels. often they would beg.

as you see, there are loads of us who have had time to get used to the idea - it does take time. be nice to yourself and remember that you have needs too x

Hi, My dd is 4 and has diplegia. Crawled at 18 months, walked on her own at 3. Now walks independently indoors, uses a walker outdoors (and yes, like madwoman her walker is very popular at school ) She also has a wheelchair for distance.

I think the hardest thing at your stage is no-one being able to predict the future. We were told dd would walk at some point but no-one could say when.

I still have days where I feel really sad about it all but then I go off and fight again. We found Conductive education essential but I know it's not for everyone. We also pay for hydrotherapy, it's £20 for 20 mins every 2 weeks and is something dd loves and it really makes her feel more comfortable.

Not sure what else to say except all the cliches - you're not alone. There's a very fine bunch of people who've already posted here.

Ladylush - It is Kiki's yes.
Best bit of advice we had at beginning was to get decent physio in place as soon as possible and work on it everyday at home. We also did Brainwave who assessed and drew up a programme and provided some basic equipment (wedges, rolls, balls - they will become your friend!) Came on so much once all this was in place.
You should also investigate portage (play therapy). Was nice to have an hour where someone else would take charge of playing with him (is very reliant on me even now to entertain him 24/7).

Kikis is where dd was assessed. It is a bit of a trek from where I live though.

Hi Glimmer - yes I do remember you. Sorry to hear about your dd's dx. Yes I am going through all the emotions you mention plus terrible guilt - was it something I did/caused. And I feel so low and anxious all the time - a terrible feeling in the pit of my stomach. It feels so self-indulgent and I'm aware that you have all been through this so I feel bad about that. But I can't seem to pull myself together. I need to - for dd, ds dh and myself.

dd hasn't had MMR - was going to get single vaccines. What's the current advice re. vaccinations for children with CP? And nutrition wise are there any vitamins or supplements that I should give dd? For e.g codliver oil or similar?
Yomella - thanks will investigate portage.
Hanging - no you are not boasting at all. It's wonderful to hear positive stories It's also good to hear other RL experiences - whatever stage the children are at. The more info I have the better. Lack of knowledge/awareness increases my fear and distress. I know no one can tell me how well dd will do. She has fought so valiantly so far - I have to have faith in her. I am a bit buoyed up by some of you saying she is doing well so far. A bit of background: she started commando crawling at around 11 months, followed shortly after by normal crawling. She would endure being put to stand (leaning against something) at 13 months, then at 14 she started pulling up independently (of course standing mainly on tip toes)always holding on to furniture but sometimes with one hand. Once or twice she has forgotten to hold on and kind of stood for a few seconds before falling. She began cruising at 17 months (approx - perhaps a bit earlier). She pulls up much of the time -which amazes me because it looks so uncomfortable. When she first started doing it she used to cry and I feel terrible now that I realise it must have hurt her a lot As far as climbing goes, she started when she was about 14 months old - climbing stairs. She can get to the top without any help in an all fours posture but we do stand behind her in case she falls back. She also climbs on to the coffee table. Since the physio appt. I've been putting her to sit cross legged and she doesn't seem to mind it too much if it's for a short while. I have so much to say....so many questions for you all. Thank you so much for all your helpful advice/support. I can't take it all in at the moment because of the state I'm in but some of it is going in and I will come back and re-read your posts

Does CP always cause premature ageing?

Hi ladylush the book is teaching motor skills to children with CP here
I have found it our bible.
Is there anyone who you can go to and just let out your emotions, I had a lot of councelling following ds birth and it is still continuing 2 years later!
You are doing well you really are, your distress shows how much you love your DD.
As far as I know CP doesn't cause premature aging. Ds's immune system is like anyother 2YO he gets the occational cold and temp, (he has one at the minute) but bless him he tries so hard to make us feel better, he can't talk as yet, (says the odd word) but blows raspberries at us - he knows thats what makes us laugh!
I would recomend Bobath centres as they are what the physios are trained with and they focus on using the correct movement, which is harder but more beneficial int he long run, we are going to Brainwave in march I've heard such good things about them website here
If you have any questions I'm sure someone here will know the answer.
Take care x

Second the book idea. Helps break down all the little milestones towards achieving the bigger things and gave me a better idea of where ds was in the big scheme of things which is useful for all the other stuff you have to chase for them. Helped gps know what to do with him too rather than feeling totally overwhelmed in terms of how to best handle him / help him play.

Not sure about premature aging tbh. Think it's to do with being at risk from contractures, misalignments etc which means their bodies don't work as efficiently as they should which'll have an effect (arthritis springs to mind). Underlines importance of decent physio etc to my mind. Certainly ds gets tired more easily than his older brother did as every movement is full of effort.

I will look for that book - thank you. Have any of you got any opinion on the scotson technique? I know it's not evidence based but I just wondered if any of you had explored it at all.

Looked at Scotson, but had too much on my plate at the time to do any more about it. We do Vojte with ds which has improved the way he breathes a lot. Principle seems a sound one to me, though can imagine trying to explain it to NHS / School / LEA (have enough problems withthe Vojte)! Think you have to follow what feels the correct route to you once you've educated yourself a bit about what's out there (assuming you can afford it).

I am reading this thread with interest as in my response to ladyrush earlier. If my son toe walks because he has stiff tendons would this depligia be a possible different explanation for his coordination difficulties instead of dyspraxia. He has also slightly knock knees but not enough to be clinically defined as knock knees but would probably be if he was of a heavier build than he is. He also can't bend over properly and he is not very strong. I know you are not doctors ect but we all know how doctors can miss things.
Sorry ladyrush for hijacking a bit but your thread has got me interested and a bit more concerned.

wassup my suggestion to you is to take your son to a paediatric physiotherapist for assessment. I'm afraid my dd has been let down by two paediatric doctors. It's not a lack of diagnosis that upsets me - it's the casual attitude that it's just developmental delay, come back in 6 months time.....that's what angers me.

I know I shouldn't google There's quite a bit on premature ageing due to the exertion that moving causes for people with CP. I suppose it varies according to severity but the CKS page (advice for patients and GPs) says it applies to the majority of people with CP (by the age of 40). I am really grieving All the images I had of ds and dd in the future (when we are old and grey) have gone. I have been through a lot in the past few years but seem to have come through it fairly well. I don't think I'm coping with this at all. Tomorrow I need to somehow keep it together to support people with MH problems (am a CPN) which is a joke when my own MH feels so precarious right now. Sorry - I know you have all been on this journey and are much further along than me. I hope this doesn't take you back to the point I'm at.

Oh I know about the come back in 6 months thing I had pre diagnosis from a paediatrician for about 18 months. Got fed up with the did he have ASD or did he not thing and got a 2nd opinion from CAMHS who in our area have been fantastic.

We know how you are feeling ladylush and it is a bit like grieving for the future you imagined your child to have. It will get easier with time and whne you can see all the things your daughter can do.

I wouldnt worry about the premature ageing thing, things are moving on all the time with CP and people who are in their 40s now did not have such emphasis put onto early intervention - and the surgeries and botox, and medications were not as advanced. I believe the ageing is related to wear and tear on the joints causing arthritic changes.

If you consider 80% of CP is spastic diplegic, you can see there would be issues here with the majority of people in this group who had not been as well managed as children are today. CP children who have hypotonia, will certainly not have the energy levels of NT children, but their quality of life is usually as good, and their intellectual level is not usually affected in milder cases, which your DD certainly is.

What helped us was lots of input from the professionals, hydrotherapy, having a regular routine of physio which reinforces the professionals, and basically taking control of the situation rather than feeling lost, guilty and at sea. Be optomistic but realistic, don't compare with other children, lean on other people, especially family. The sad days will lessen and every achievement is extra special.

ladylush - google also told me that people with spastic quadriplegia don't ever walk.

i agree with sneezecakesmum - the research is not based on our children, with early intervention programmes in place, and continued advances in medical care and support.

that said, there are of course people on the scope boards who are suffering additional fatigue etc from work, and it's difficult to know how much their disability is impacting them.

all that can be said really, is that everyone with cp is affected completely differently, and so there is no real way of telling whether the research groups looked at people who are likely to be similarly affected to your dd.

i would also suggest that in the past, kids and adults with cp have not been encouraged enough to exercise and keep fit (whether from lack of opportunity, or social reasons). i strongly believe that kids with cp should be encouraged to stay strong and healthy like all other kids, and go out of my way to give dd2 the same opportunities as her siblings. she is mostly low-toned now, which means she does tire a little easier, but the more exercise she does to build her stamina, the stronger and less likely to tire she gets... i'm not an expert by any stretch, and i guess we won't know until it's way too late anyhow. she's enjoying herself and having fun though, so the dance classes and swimming and ski lessons are a good thing as far as i'm concerned at the moment.

(incidentally, your dd is already way ahead physically of where my dd2 was - and she walks and runs, and wants to learnt to skateboard (i said no). she is doing amazingly!)

portage is brilliant.

kids with cp are recommended to have the ordinary vaccinations at the ordinary times, unless they also have epilepsy, when some parents opt for single vaccs instead. our paed said it was more important for dd to have her vaccs on time, as (particularly with her predisposition for aspirating) he wouldn't want undue pressure on her chest/ upper resp tract.

Thank you sneezecakesmum that made me feel a bit better Have you needed to adapt your house at all? Now wondering whether we will need to move? Though we do have a downstairs loo.
Has anyones dc here had surgery. Dd has tight hamstrings as well as achilles. I read that surgery on the hamstrings is best performed at the ages 2-4. She's 19 months now so heading toward that time frame. I am relieved to hear that prem ageing may not be an issue. Those of you with dds - do they tend to wear trousers? You see - am at that stage where I'm asking trivial questions amongst the more sensible ones!
Right my mission today is to cry less and to not cry in front of others. Yesterday the vet and the hairdresser got it!

Sorry madwoman - didn't see your msg. You were up late! Your dd sounds awesome Thanks for advice re jabs. Think we might need to find out what more about dds type before getting measles jab. She hasn't had seizures but could these occur at a later stage? What aids does your dd use to walk?

DGS is only 2.5 and DD is not anticipating major adaptations, though they are looking for a house with an extra room downstairs (or converting an integral garage/extension) so he can have his equipment there as currently it needs dragging in from the conservatory all the time. He probably will need hand rails here and there eventually as his balance is not good. Having said that lots of parents want a large downstairs playroom separate for kiddies so not unusual in that way.

DD had counselling, but we all did the crying thing to begin with!

I though the op thing was a bit later 5-6?? Tight hamstrings and achilles can be helped with botox injection followed by intensive physio. DGS is more low tone, but with an aggravating arching back thing, so he wont need botox or ops. There is also medication (baclofen) to reduce muscle tightness.

DGS had single jabs because he fitted at birth, and he was fine with them.

Read recently that if they are going to develop siezures it is mainly around 18 months, tho they can later. Also hemiplegics are more likely to have fits.

Your DD is doing very well at the moment, children who sit by the age of two are more likely to walk! There is so much to learn, but your head gets round it in the end, I just sit down and have a !

Hi there, I have a 2 yr old DS who has quad cp. It sounds like your DD is doing great :) Don't let your brain race ahead too much with worse case scenarios! If she is doing this well at 18 months then there is no knowing where she will be in a year or two. My DS has more difficulties due to greater arm/trunk involvement but is doing similar things to your DD - crawling, pulling up etc, although he started later than her and is very unstable! But I have high hopes for him in the future and it is amazing to watch him develop more confidence in his body as he slowly learns to control it. He also got diagnosed by the physio at Kiki's as the paeds were all "wait and see" - which annoyed me a lot as if we had of waited we would have missed out on months of physio etc. Anyway we are also south london so if at some point you think it would help to meet up with someone for a chat then happy to do so, just PM me :)

we saw the most advances in development around three. (i posted higher up as well about her walking etc, but you probably missed it ) she crawled from about 15 mos, used a standing frame from 12 mos, used a walker, and eventually stopped using a walking frame after yr r. (she wasn't using it indoors at that stage, just to run around in the playground with her friends). we do still have a wheelchair for long days out or speed/ distance, but to be honest rarely use it. she was using it regularly until about 5 or 6.

dd2 did have neonatal seizures, (she was loaded with pheno etc) but because she was sz free after a few months it wasn't necessary to have single vaccs. she had the usual ones on time.

re adaptations - tbh the only ones we've needed are a rail on both sides of stairs, and rails for the toilet (we originally had a full adaptation with chest harness etc, but she didn't need it for very long). and tbh now at 7, she can just about manage with a rail on one side of the stairs if we are out and about - at home she has been known to use momentum to get up the first two or three steps without holding on at all. most of this was due to trunk/ full body involvement though.

re surgery etc. dd2 had very tight hamstrings etc. if she's pulling to stand and trying to cruise, i'm going to go out on a limb and say it's possible that they might try botox, but will probably try to manage the tightness with physio. once she is walking (and she will be, very soon, even if with a walker at first) the walking action will help to stretch the muscles. we did tons of ankle physio with dd2, but once she was on her feet (in the standing frame and then walker) a lot of it is done for you! dd2 also had gaiters, and has worn piedro boots for a long time. our orthotist was very sensible and always suggested a mixture of shoes so that the ankles strengthened and did not require bracing full time. and i think the ballet helped when she started ballet at 4, she couldn't stand still unaided (she had to hold on or would over balance) and certainly couldn't stand on one leg lol, but we found a brilliant teacher. her physio was over the moon. as sneezecake said, baclofen is worth a shot too.

badkitty - a dx isn't necessary to access physio etc, were they going to discharge you without a dx? it's quite usual to do 'wait and see' before a cp dx, which is why lots of kids run with 'developmental delay' for so long. kids who are developmentally delayed should be getting physio, ot , slt or whatever as required, even dla if applicable...

No we weren't being discharged - he was being seen in neonatal clinic every few months, but this was about 5 months old and they said they saw "no urgent need for physio" - had we listened it would have been another 6 months at least before he was referred, which is way too long for a baby who they already knew was almost certain to have cp from his MRI anyway! Anyway we started private phys and I made a fuss and eventually he got nhs as well, I still don't think he has an official diagnosis although the consultant has said CP to us, on all the forms and stuff she calls it a "four limb motor disorder"...!

Hello Ladylush,

My son also has CP - it is mild and affects him on just one side - its called hemiplegia.

We found out when he was 6 months old because he was not using his left hand. But it also affects his left leg and foot.

I would recommend going to Bobath Centre as well - although it is very very expensive. We went for just 2/3 visits whilst waiting for the NHS and they gave us invaluable information as to what to do whilst waiting. I would guess that it might be important to stretch your daughter's calf and hamstring muscles every day - but check with a physio.

Oh yes - Kiki's clinic is really good too. Much more affordable than Bobath - but just as good, I think. And it is nearer to you, I think.

I felt tremendously sad when we got DS's diagnosis and this lasted for a while. However he has done amazingly well. All my imaginings were wrong. The therapies we've done have made a huge difference. The NHS professionals will give you the impression that nothing can be done/changed - but don't believe them - it can!

Plus your daughter is doing a lot of good stuff - pulling to stand and cruising is all good - all of that does not come naturally to a lot of children.

Later on - if you do get a diagnosis of CP then you could try hyperbaric oxygen therapy (Walthamstow Centre - MS Action) and/or Scotson techique. But I'd wait to find out for sure first.