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

Well done you. You will notice improvements week on week, they are just agonisingly slow sometimes. The spastic diplegia type of CP is the curse of the premmies, whereas DGS has a strange mix and reflects the type of brain injury he has.

We were talking to a mum whose son has SD and her take on it was (until the child is older and self motivated) it is a constant day on day thing to maintain the flexibility in the legs and hips. It sounds depressing and hard work but it really isnt - it just ends up incorporated into each day, like feeding and dressing.

The one thing you cant do though is just let the toddler get on with it and hope it turns out all right - it won't, they will just get increasing stiffness and their mobility will suffer.

Your DD does sound mild so the task you have will be quite easy lady and as you've seen already keeping DD on track shows very rapid results which will carry on. Well done both of you!

Thanks
We see the Neuro Disability Team this week. Any tips on what we should ask? Some ideas I have are as follows:

What is the working diagnosis (ok we know what we think/what the PTs think but want the medics to commit as well)?
Are there any disorders that may mimic CP?
If CP, what form do they think dd has?
What is the prognosis?
What treatment options should we explore?
What are the current NICE guidelines for treatment of CP?
What extraordinary treatments/therapy do they think may be beneficial?
How likely is dd to need orthopaedic surgery in the future?
What kind of services are available to dd/us e.g. portage, orthotics etc.?
How important is the MRI in terms of diagnosis and treatment implications?
What sedation options are available for MRI and have there been any complications for babies who have needed general anaesthesia (esp. at this particular hospital)?
Info on statementing, DLA, early years special needs provision etc.

I know they won't be able to answer all of these but what the heck!

TIA

we only saw neuro at 4yo after dd2's second mri (first at day 12 after birth). tbh with milder cases it will probably be the only appointment you get, unless epilepsy involved. (tbh that was one of the questions we asked - are szs likely with her pattern of brain damage? the answer was no, but you can never rule them out)
i think i mentioned earlier that dd2's dx changed at 4 - she was originally dx with spastic quad, but the dx of athetoid cp was confirmed with the second mri and neuro report. the neuro visit was interesting - the consultant had a student along, and so we learned quite a bit from listening to the consultant asking the student questions about what he had noticed about dd2's pattern of movement etc
tbh we were a lot further along though, and were really there for confirmation (she had already been dx cp but we were challenging the 'spastic' dx as it was splashed all over her paperwork, and by this time dd2 was one of the more low toned kids! it was causing a few issues as we move a lot with dh's work, and referrals would always say 'please see this girl with spastic quad' and then we would turn up and everyone would scratch their heads and say 'oh, she's not at all what we expected...')
re NICE guidelines etc - you will find that management of cp varies enormously - not because some docs are better than others, but because every child with cp is different and responds differently to different therapies. there is a standard set of therapy/ treatment that the paed and therapists can access, but it's really a 'suck it and see' process, there's no one gold star system that suits every child. it very much depends on your paed and physio as to the timing! obviously well-read parents can influence decisions.

a lot of your questions they may re-direct you back to the paed. there's a lot of to-ing and fro-ing.

fwiw, dd2 has been fine with ga. she's had three now, not including the one at 12 days which tbh i still don't know how they managed (and i suspect was the reason we didn't get any clear info at that point). she was still o2 dependent, and had to be transferred etc, so it was a bit of a nightmare!

hope your appointment goes well x

oh, and i will add - obv the neuro had reviewed the mri prior to meeting to dd2. when dd2 walked into the room, and played with some toys etc, the neuro was a little surprised. an mri will give you a picture of the damage sustained, but it can't predict ability, just suggest. brains are funny things.

Hi Madwoman. We have chatted before about the similarities between your DD and DGS and the bonkers diagnosis of Sp Quad for a little boy who does a good impression of a stranded jellyfish, and how DD and I are inspired at how well your DD has done!

Lady DGS had an MRI but was still sedated because of his birth fits (2 1/2 weeks) His brain injury is in the basal ganglia. Little premmies (like 2 of our friends whose kiddies were premmies) tend to have damage called PVL. Periventricular Leukoplasia. These are sort of blank areas or cysts near the ventricles and cause the typical diplegia. If your DD is mild no damage at all may show. Yes other conditions can mimic CP, but with a definite prematurity its unlikely in your DDs case.

If you are looking for them to tell you what will happen in the future... Forget It!!! All you will get is at best a wait and see, or a very negative picture which leaves you suicidal! The Dis. docs will never commit to anything, and just not upbeat - ours isnt, and DD has now refused to go - leaving poor SIL to go in alone!

MRIs are usually under a GA (which is pretty safe) Older kids may get away with sedation. DGS has not had another one and DD doesnt want one as it wont change anything. As MWINA says it gives an idea of what disabilities may happen but don't predict anything.

CP is very strange and so variable child to child, often bearing no relation to what turns up on scans, your best bet would be to get lots of in depth information and become like us lot - mini experts!

Yes Ladylush - just to chip in as I think it can be better not to ask about the future. Doctors only seem to work in the present and will be vague at best when talking about the future. Agree with sneezecakesmum about their negativity so please don't be alarmed as they may paint worst case scenario if you ask them outright for a prognosis.

Your other questions sound good and I really hope you have a positive and helpful appointment

Thanks all Gosh am dreading this now! Not quite robust enough right now to cope with doom and gloom medics. It's not a neurologist by the way - it's a team headed by a Consultant Paediatrician who's speciality is Neuro disability.
Sneeze I looked into PVL. Feel quite let down by the NNU for not mentioning this as a possibility. I know it wouldn't change the dx but I'd have been vigilant for signs and I'd have pushed for PT much earlier.

ah, if it's the paed you're seeing, i predict a lot of 'wait and see'
our first consultant paed was lovely. he told us the most important person in dd2's life would be the physio, not him. and he was right.

ladylush, there are a lot of parents of kids with cp on 'special kids in the uk' - if you feel like a more personal interaction (with meet-ups, and an annual camp etc) they are a nice bunch. i found it very useful at the beginning. everyone posts pics of their dcs as well, and there's lots of info about different issues. there is here, too, but at the beginning i found skinuk a great place - they have a 'member' stories' area where you can introduce yourself and your dcs - a good place to spot similar kids, too

i have to say i don't use it now - you can probably find my old posts though if you're hardcore stalker enough. i'm easy to spot as the one who moved to canada!

don't beat yourself up about the pvl thing - the medical team (and hv) will all have been looking out for signs of developmental delay, and tbh, they often don't initiate intervention until they are sure there is a definite delay - which would probably be around now in any case. it's not too late, honestly. (i'm guessing dd had lots of scans as a prem anyway, so if anything definitive had shown at that point they would have investigated further and instigated therapy then. look on it as a good sign that although there may be some damage, it wasn't obvious at the time?)

Thanks madwoman - I will check out that site. Re PVL - maybe you are right. If dd's case is indeed mild then I guess we should be grateful for that. It's just that I haven't fully moved on from the "WTF.........this is so unfair" reaction. I don't like surprises so it hit me hard. I'm not quite sure that anyone involved in dd's care was especially looking out for delay of any kind! She was d/c very soon by the hospital paediatrician (on five week follow up after dd came home), d/c by community h/v soon after that, got the all-clear in the 8 month check, seen many times by health visitors as I was neurotic about her weight so took her to baby clinic many many times. Then at our request she was seen by a paediatrician on two occasions. No concerns then either. Bearing in mind that one of these was at the beginning of this month......

when dd2 was about 4 i took her to the gp to see if she should have the flu jab - we i saw the locum and asked if she should have it as she was more susceptible to chest complications due to issues around her cp (at the time she breathed like darth vader). the locum asked me what made me think she had cp?
er.
the two consultant peads, the mri scans, the phsyio, the slt, the ot, the...
never mind, dear, just LOOK AT YOUR COMPUTER SCREEN WITH THE DX ON IT!!!!
sometimes i do wonder.
she did apologise by the end of the appointment though.

it can be frustrating, but sometimes you have to try and move on. looking to the past too much can be a bad thing - but it's human nature to go back and see if anything sooner/ different could have helped.

there are still days when i think 'look ahead instead of fretting about what can't be changed'... and have to have a word with myself.

Lady - Ds' MRI showed PVL which confirmed his dx of sdcp, I had completely forgotten this! Maybe this shows how much things that seem hugely important at one time (I researched PVL like crazy...) pale into insignificance. Also, I think I totally fibbed about ds having his MRI under sedation, he did have a GA but it was a very, very light GA not much different to sedation by midaz really.

When is your appt? Good luck with it all.

Thanks Yeah I keep going over and over in my head when dd might have sustained the damage and it's driving me a bit crazy. I am very grateful however that it doesn't seem to have affected her cognitive development. Still my loving, bright, funny baby girl even though she kept me up from 2-4am this morning. Was like a zombie at work today.

Appt. is tomorrow.

I remember when the first response social worker came to see me and asked how I felt.

I said "angry, very, very angry. Why has this happened to my beautiful child, and he is beautiful isn't he?" (agressively) to give her her due she said "yes, he is a very beautiful child".

With the best will in the world - my son is sweet and cute but he ain't no Boticelli.

Superhans - I bet she dared not say anything but How do you feel about things now?

Ladylush - yes, she might have been a bit shit scared of me! I was a bit mental on the defensive front.

My DS2 is 11 now. I love him beyond anything, and he is so great, he is so brave and good. He has made amazing progress - he is almost "normal" and the bits of him that aren't are that he is super affectionate and lovely.

I will continue "shaping" him until he is "normal" when he is ready to be launched.

It's been a really hard road and a terrifying one at the start - if only I had known then what I know now I would not have been so scared.

That it will all be OK.

SN kids can "close the gap" in time for adulthood I think.

It hadn't occurred to me that the social worker didn't mean it - I will have to hunt her down now!

HI THERE, MY ELS HAS CP AS A RESULT OF PREMATURE LABOUR AND STREP B MENINGITIS.. SHE IS NOW NEARLY 9 AND HER TENDONS ARE RELEASED YEARLY WITH BOTOX WHICH MAKES A DIFFERENCE. AS YOUR GP FOR A REFERRAL TO AN ORTHOPAEDIC CONSULTANT, THEY KNOW MORE THAN PHYSIOS AND OURS IS EXCELLENT. ELLIE HAS HAD SURGERY NOW ON HER LEGS AND FEET TO RELEASE HER TENDONS AND THIS HAS MADE A MASSIVE DIFERENCE AND NO LONGER WALKS ON HER TOES, BUT THEY DONT LIKE TO DO ANYTHING TILL THEY ARE AT LEAST 3. SHE COULD ALSO HAVE GLOBAL DEVELOPMENAL DELAY LIKE ELS AND THEY WILL DO THINGS AT DIFFERENT TIMES AND AGES, BUT ITS IMPORTANT NOT TO WORRY, ELS DIDNT SIT UNAIDED TILL SHE WAS 3 AND NOW SHE IS LEARNING TO WALK WITH HER WALKER. BUT CYCLING AND REGULAR STRETCHES AND HYDRO THERAPY REALLY HELP. SHE COULD ALSO GET FOOT SPLINTS TO HELP CORRECT IT.. BUT AS LONG AS SHE IS HAPPY, THATS ALL THAT MATTERS, AS GENERALLY THE CONDITION DOESNT HURT THEM. XXX

SuperHans - am sure the SW did mean it. He sounds adorable
HG - Hello dd doesn't seem to have global developmental delay - just motor delay. I'm glad your dd is doing well. Must have been a real scare for you when she had meningitis That kind of puts things into perspective doesn't it. I think dd might be referred to an Orth Surgeon at a later stage. She will see Orthotics people very soon for assessement of any aids needed e.g. splints. I'm looking forward to her getting splints. Will be so nice to see her standing straight.

We saw the ND team this morning. No diagnosis yet - other than "an emerging motor disorder". Cons. wants to wait until the MRI results are back - referral made for MRI. Obv. with the risk factors and dd's presentation CP is the likely diagnosis but we will see. She said (when I asked) that dd is mild-moderate which upset me a bit because I wanted her to say mild. However, I think she is probably right. Of course, this doesn't mean she always will be. She also referred dd to OT and an Inclusion Service. I've been given details of local childrens centres so I'll take dd along to one of those soon. When she is 2 she will get some funded intervention but not sure what that is likely to be - will have to find out. And we were invited to apply for DLA. There is a welfare advisor clinic so we can get some assistance with this. I am used to completing them for adults but no idea what the paediatric ones are like. I asked about statements etc. and was advised that this is not needed until the child is in Reception. However, I would like to start to think about it now so I can get my head around how it all works. Cons. was quite nice. Encouraging about dd and said it was great that she'd responded well to PT. She also said I can pick up the phone anytime I have any questions. She apologised for the poor response we'd had from the service and acknowledged that dd should have been seen months earlier.

we also saw our ds consultant today, and having doen so asked what mild moderate meant in doctor speak, and in reality mild in prems often means not much more than gross motor skill delay (like many many prems have, tip toe wlaking etc) and moderate is usually the equivalent of level 2 on the scale, ie some delay, and some need for additional intervention splint, aids etc but in time waling, running, skipping etc but with increased tiredness, perhaps a funny gait, and perhaps difficulties on difficult surfaces etc.

I found that reassuring. We have the diagnosis just on the prevalence of risk factors (inreased now due to the fact that the reason for DS coming early was placental abruption and there was probably an oxygen shortage before labour) but are going to think about an mri at our next clinic.

Thanks for that Hilda How are you? Have been thinking about you and wondering how things are going.

And the gait thing is quite crucial - like any parent I really want dd to be (eventually) be able to walk as normally as possible. Not just so that she is less obviously disabled - which is obviously important, but also so that she doesn't cause too much wear and tear on her body.

i wouldn't worry too mauch about statementing etc yet ladylush - it's far easier once you have a history to use as evidence, and she will develop so much over the next couple of years that she will be a completely different child by school .

dd2 had her first nursery placement start on her first birthday (just for two mornings a week) which was funded, and at two went 5 mornings. the lea early years team funded 3 sessions a week at 2 and 3, then 4 sessions a week until the year before she started school, then it went up to 5. she had a 1-1 from 2yo (until her second birthday the ratios were high enough in the room so that it wasn't required)

she was statemented just before yr r. at nursery she was on sa+, and had 1-1 support, with all therapists going into nursery for visits and liaison with the 1-1 and keyworker. to find out what the art of the possible is in your area, you need to call the lea and discuss it with the early years inclusion officer or senco (called different things in different places). but if you aren't intending her to start nursery for a while, then it's not really an issue.

paed sounds lovely. hang on to that one!

Ladylush we're doing ok, but ds has another cough/cold, and that's really getting to us at the moment, especially as its leading to lack of sleep. I am sure ds knows the days I have a busy day at work ahead.

DS consultant was great yesterday, went through everything with us. Because DS is so little still there is a lot of uncertainty, but she has reassured us of the range which she she's ds developing on (again mild moderate) and what that may mean for the future. As I said I found it reassuring to know where on the scale she sees DS, and the best and worse outcomes for that. She says he has mild motor skill delay, but is coming on and he's not yet falling far behind (we think about 2-4 weeks at 9 months) an he may yet catch up with that at least as far as timing of walking etc is concerned. We can also see DS getting stronger day by day, and his nursery have funding for 1 to 1 support for 2 hours a day to do his physio. The other babies want to join in though, and that seems to encourage him!

Again because he is little she sees no need for anything apart from physio but we will see about OT and other therapy as he gets bigger.

She did however say I would need to take advice from an obstretrician before deciding whether to have another DC which she also thought would be good for DS, but there were risks of my getting pregnant of another prem which would not be good.

Personally I would prefer DS doesn't have a funny gait, but neither DH nor I see it as the end of the world, and I am sure it will be easier for him being a boy as shoes can't be such an issue! We just want him to be able to balance enough to ride a bike. I think a lot of that is based on our thoughts and dreams about the type of child we expected to have and in reality we never expected a sporty type as that's not DH or I

Glad you are doing ok hilda Your cons sounds great - must be very reassuring. It's good that your ds is getting this early intervention and that his motor skill delay is only mild.
Re gait - yes I agree, it's not the end of the world but I'd be lying if I said it didn't worry me. I'm not sporty (as in have no prowess) but I run a few times a week to keep fit. Dh is very sporty, as is ds. We are an active family so I don't want her to feel excluded from that. Though of course I know that as she gets older it will be important to involve her in as much sport as possible. I heard that martial arts can be very good, swimming, cycling etc. I'm looking forward to the stage where she can be more involved in things as at the moment it's just physio and swimming.

Portage - it seems dd is not eligible because she doesn't have a learning disability??? I think I might have to ring the portage team to see if that's right. Also, at this early stage I don't think they can reliably say that she doesn't have a learning disability. Yes she has good language and comprehension but that doesn't mean she doesn't have learning needs.

Hilda - hope ds cold gets better soon. dd has one as well and has kept us up two nights this week. I was naughty last night and pretended I didn't hear her so dh had to go in to her Well I was up with her for over 2 hours two nights before so I felt it was someone elses turn!