ds just diagnosed with cp

[cloghead]

a bit like ladylush my ds was diagnosed with cp yesterday and I'm really strugling. Haven't really slept, and at the moment I can't even look at him without crying. I'm so sad and he is definitely picking up on that.

Ds was 11 weeks early, 53 days in nicu scbu but then home. On discharge they advised us that he's be delayed but would catch up by the time he was 2 ish.

seen the child development clinic 3 times since. First time they had unspecific worries, but said nothing major. Second time seemed really pleased and said they wouldn't need to see as ofen maybe at a year 18 months and 2 then discharge.

then yesterday. DS is nearly 1 actual age, 8and a half months corrected. He can just about sit but wobbly and topples. The paeds and physios don't seem particularly worried about that and say he will sit and walk but late. But they say he has odd muscle tone and his movement is not graceful. His legs are tight and body a bit loose. he occasionally jerks his back and flails abotu a bit.

They say that his speech, cognition and fine motor skills are as expected but that he has diplegic cp and that it's mild to moderate. They say he'll walk but may have a limp, or walk with a gait. He has physio through the NHS monhtly and they give us exercises which we and the nursery do daily.

My head is spinning. We asked them how sure they were and they seem pretty definite. Is it worth getting a second opinion. are professionals wrong about this? If so how do we go about it. Happy to pay if it helps. We are in East Anglia/London would be fine. How do we find an expert in cp? the cdc covers everything.

Even if ds does have cp, does it matter? they seem to say he'll walk eveutally is that any different from the comment he'll catch up eventually. if his cp is mild will phsio allow him ways to work round it and allow his brain to rewire so he can deal with it.

Will more physio help. how do we get that?

are there other suggestions about what we do now, and find out what to expect? I plan to call scope this morning but am keen to hear from people who have been in the same situation.

Didn't want to read and run. I'm sure people of experience with this will come and give you good advise.

It's always pretty difficult when you first hear the diagnoses just give yourself time.

Kind regards. xx

hiya,
just a quick note to let you know you are not alone-the memory of a diagnosis is a long time ago to us now as our dd is now 10 and we are looking at the moving up to secondary school but basically we were told most probably not a walker!

she walks....ok wears AFO's(splints) and has a funny gait but she walks!

physio,physio and more physio and then everyday experiences just like other children is my short piece of advice for your ds and for you
-don't be too hard on yourself he is still the same baby he was yesterday-your little star
get some chocolate and keep coming on mn for immediate advice!

pm if you want to know more but off to work now but will check later

take care x

hi, I'm just popping in quickly too as have 2 ill childen off school today! My little girl is 4 and has cerebral palsy, diplegia. I totally get your shock. The future is so scary right now and I can imagine the questions going through your mind. My little girl was doing wobbly sitting at around 9 months, sat well at a year, crawled at 20 months, walked with a walking frame at 2 and a bit and took her first independent steps at 3 years old. Now she runs around with her friends but yes, her gait does look different. Her feet both turn in a lot. She also uses a wheelchair for longer distances. When I was in your position the only way I could cope was to gain knowledge. I spent hours on the net finding out everything I could about cerebral palsy. It may not be the right thing for you but in my head I couldn't be as scared if I knew what might happen and knew about the equipment she might need at some point.

If you happen to live within driving distance of Fareham in hampshire I would recommend a visit to The Rainbow Centre

For some reason there are quite a few of us here at the moment with children with CP, so it's a great place to be and you can be sure of support.

actually I've just noticed my dd is here - her name starts with a 'H'.

Bless you!! It will get better and DS is doing well to sit at the moment. I'd read everything ladylush has said and received and I would PM her as you are both having the same issues and there is nothing like leaning on someone in the same boat!

I posted about my dd on the other thread too but just wanted to say that things can really change with the right help, support and determination. My dd was dx with CP (quad athetoid) at 9 months and then un -dx a few months later as she suddenly made so much progress. She went from barely sitting up at 1 yr to walking at 20 months and she now only has a strange gait when running. The heartache and roller-coaster ride we went through was totally intense.

Your ds sounds like he is doing brilliantly and the assurance that he will walk eventually is good - they don't give assurances unless they are absolutely sure IME!

take it one day at a time, you will have good days and bad. it is a shock to be told your child has a disability. he is still your lovely ds and you will do your best for him. Take all the help and support you can get. Take care.

Hi Cloghead
ds2 has mild CP (spastic diplega), he was born at 28wks and has been generally delayed.
He is 8 now & walks & runs, he has a slighty clumsy gait but most people don't notice.
He does tire very easily & can't walk any distance & his co-ordination is a bit off.

I can understand your upset, it isn't any easy time, we were totally expecting ds2's CP dx it still hit us for six.

Please take it easy & be kind to yourself. Have you been offered any support.
We are in e/anglia too (SUFFOLK) have you heard about Suffolk school for parents (I think it is called) in Ipswich.

Hi Cloghead

Best advice we had was to find a good private physio with relevant experience if we could afford it, get our ds assessed and get some basic tips on what we should and shouldn't be doing while we waited for the NHS to catch-up.
When we phoned up, person in charge of the clinic warned we might want to return each month for updates / more tips.
In event it was the start of us going weekly (physio felt it was necessary and we had some savings).
This then got supplemented by private occupational therapy and then speech therapy in time.
NHS had huge long waiting lists (18 months) which we managed to scramble to the top of early a few months later, but even then the help was hands-off / advisory role only and utterly pointless (was quite educated by then). Am sure someone out there must get something decent through NHS. Just hasn't been our experience.

So personally I wouldn't leave it to chance that he'll get there. Early intervention and all that .....

Otherwise can relate to how you're feeling. Been there and all that. Second reference to ladylush's thread.

FWIW our ds is 4 now and has come on SO much in the 2 1/2 years since we were told he had cp. Still no idea if he'll walk, but just being able to ensure he can sit independently (which he can now in most situations) will make a huge difference to him when he's grown.

Small achievements are BIG triumphs to us because we know how hard he's worked to get there.

Cloghead - totally know how you must be feeling right now. I am still recovering from the awful shock such news brings. I'm a teeny bit ahead of you in that journey but I reckon there will be days that are harder than others. Today I amazed myself by managing to laugh with the kids. I only found out a week ago. You're not local to me but I can get to London easily if you ever feel like meeting up for a chat/moan/cry! I seem to be doing a lot of the latter two at the moment! Stick around on the SN discussion board - lots of info and support available. You will feel better Take care of yourself and don't be hard on yourself for crying in front of ds. I cried in front of dd - couldn't help it. She kept looking at me in a concerned way saying "oh dear, hurt". I don't think it's scarred her! Tbh it's probably worse to be repressed - am sure that outward lack of emotion is more damaging to the dc.

Thank you to everyone who has replied. I really appreciate it. I can't post often as I work full time but I am checking in.

I still can't help wondering if the doctors are wrong.

My initial reaction was shock but not entirely surprised. The nursery's reaction was shock when i told them. They just hadn't seen any signs and they have had cp children before DS. If I wasn't surprised does that mean they must be right. Am I in denial?

Then of course yesterday DS decided that he could sit unsupported after all. His key worker left him sitting for a couple of minutes (OK not for a long time but she went off and pointed out he was sitting to everyone else)

Also the report in November says his muscle tone was the high end of normal. Then this week they say its too high in his legs and too low in his trunk. Can it really change. Does it depend how tired DS was. He was overwrought at the time of the assessment and had not slept for 5 plus hours before hand.

I wish they would actually have shown us what they were observing then we could have said yes that's normal for him, or no that's not. instead they were all doing things and we were engaged in conversation with his dietician (who is really pleased with him)

Of course if he does have CP then fine we'll deal with it, but when he's only 8 and a half months corrected is it not too early to say definitively. And how can they say that he has cp but also say but he will walk. I am so confused. I know mild cp means you will usually walk but. So many questions.

He didn't even have a bleed as far as we know. Does and MRI actually help, could it rule CP out or help with treatment?

Still waiting for scope to get back in touch. I'm so impatient

Hi again Cloghead, the DR's could have it wrong, or they could be picking up on more subtle signs which may mean if he does have CP it will be v mild.
The fact that he is starting to sit at such a young age is great!!

An MRI could be helpful, our ds2 never had an MRI, his CP was dx on clinical exam alone we were offered a MRI but at the time his lungs were so bad I didn't want to put him through a GA.
Can I ask whereabouts in E/Anglia you are? OBviously if you'd sooner not say I understand but I may be able to point you in the direction of some knowledgeable people.

"even if ds does have cp, does it matter?"

Well of course it matters - BUT my real answer is NO it does not matter at all. Especially if it is mild.

Other people may disagree with me. But from our experience - our son who is affected mildly/moderately and is affected in both arm and leg (left side) is doing brilliantly - just as happy as his peers and his CP is just a part of him now.

I do feel sorry and sad from time to time that he has to battle with extra stuff that other people just take for granted. But the older he has got I have realised that all children are very quirky and different and they all have their strengths and weaknesses.

Your son will amaze you I'm sure.

OK. More confused than ever. I have just had quite a long chat to DS's own physio on the phone (only to rearrange an appointment), who has a slightly different take on this. She disagrees with the physio at the CDC about the extent of tightness in DS legs. She is not saying that its not cp,but she thinks it may be too soon to say and also said her colleague has more experience of ex nicu babies.

But she says the tightness varies and she notices it more when DS has other issues (he has a few respitory issues which they say is post viral wheeze following RSV and bronchiolitus) And as I said before he was very tired.

we are seeing her on Monday with the nursery staff and will see what happens then

This is how it affects my dd cloghead - we only now see muscle tone fluctuations when she's ill or tired or finding something particularly difficult. Even then, if I say to her to unfist her hand she can do it immediately.

I think dd has CP to some degree (she does have brain damage showing on an MRI) but we are very much hoping that it will become virtually unnoticable eventually. However, the future looked very different a few years ago..

It will be useful for you to get a second opinion and good luck with your meeting on Monday

The physio says she wouldn't have given us the diagnosis yet but that the predictors are pointing to dipelgia. The predictors being that DS was premature, that he likes kicking and seemed to have a very strong kick, and that he has a tight achilles especially when he is tired. She says it does vary. Oh and that his gross motor skills are delayed which we knew.

She also said that for prems there may be no difference between cp and gross motor skill delay as regards the outcome and that the label was very unhelpful. I am holding on to that one.

She does also seem pleased with him and that he is sitting albeit wobbly, and working out ways to move (it would be bum shffling if he was sitting up but DS puts his feet under his knees and pushes back while lying down)

She seconds the opinion that DS will walk. She won't say when or whether he is likely to need aids to get there. She talked about perhaps needing splints, or lycra chorts or socks and perhaps needing a walker to help get him to standing. She doesn't thinkk he will crawl as the indicators seem to be that he'll miss that out. She says he'll be able to play sport but might have to be picky about which sport.

Can I ask those of you who have been through this journey when it started to get easier. The hard thong seems to be the uncertainty. Everyone says he'll walk even if they don' t know when, when do you start getting an idea of that? If I could just know that he'll walk when he's 2,3 4 or 5 that would be fine, but of course I can't. Also those of you who also have premmie CP children to is it usual for this to feel just like the NICU days, bleak and full of dread?

I feel like I have had the first 11 months of DS's life and that they have all been full of worry and anxiety and that I can count the days I have been happy on the fingers of one hand. It seems as if everyone else just sails through with their children and although I have friends who have children the same age (both actual and corrected) I cannot really talk to them as they really don't understand what I feel and what I am going through. And I am jealous of how easy their lives seem and i keep feeling like I am just wishing DS life away to when things become easier, and more manageable. At no stage have I had a diagnosis of PND or similar and everyone says I cope wonderfully (and DS is a very happy chap so they also say he must feel loved and secure) but I never feel like I cope. Has anyone else been there?

Hi, am just about to reply to your pm - been on nights and is v hard getting online AND able to type with my two youngest here!

Hi cloghead - I will come back later as I really must go but wanted to mark my place so I didn't forget. It does get easier, but bit by bit. Accepting the difficulties is a challenge, I find I had to change my thinking to finding ways to help rather than finding ways to change the outcome.

Cloghead - now dd is 3 it has started to get easier. We now know the likely extent of dd's brain damage which make it far easier to deal with.

I still have down days when people are insensitive about dd or she is having a bad day. I can't do talking about birth with other Mums at all and I also have real problems being around babies. I hope this will pass in time. I was dx with PTSD after dd's birth but I think has made me a stronger person with all the worry we've had to deal with.

It will get better and things will look more certain in time. I agree dealing with the uncertainty is the worst thing..

Cloghead. Everything you say about the dark, bleak fear filled days of PICU leaving its indelible stain on your psyche are so true, and echo around the SN board with utter truth! My DD had pstd following the birth of DGS (placental abruption - he was pretty much sort of, well, how to put this? not properly alive? at birth.) The first year..vacant episodes, colic, never sleeping severe anaemia, not feeding, underwight, threatened with PEG, crumbling teeth... and a diagnosis of CP - shite beyond belief!

Nearly 18 months on and almost every day a smile on DDs face. Life feels almost sunny, and DSs smiley happy personality, slowly but surely improving motor skills, bright as a button personality is so so worth it.

PS DD had counselling which helped, but her real saviour is DS himself, and her DH!

PS. Little ones should not be diagnosed at 9 months, it takes until age 2 for the CP to evolve. and research I looked at showed a high percentage of 'babies' diagnosed with CP showed no signs by the age of 12! Hence the guidelines of no dx under 2. DGS was DX as spastic quad at 7 months, now he's floppy with fluctuating tone, so hardly spastic???

I have a different perspective. I have a 20 year old DS with severe CP, doesn't have trunk control/good motor function/doesn't walk.

From all you have said and my 20 years involvement with children with various degrees of CP all the signs are very encouraging indeed for your DC.

But, that does not mean he will have no difficulties at all and I don't think you should focus on that. Rather deal with any problems as and when they appear. My son was very ill at birth so I so understand how difficult it can be. Nevertheless all you can do is focus on the positive, support as much as you can and try not to worry to much about the future. You will be able to deal with it!

My DS was 8 or so when we visited his SN school. Out of the blue he picked up a cup and drank out of it. This was our equivalent of DS playing clarinet whwn we did not know he had been having lessons!

cloghead - it is hard right now. You have only just found out that your ds might have CP. So much to get your head around and a smack in the face after dealing with the premature birth. I feel the same way as you but what is helping me right now is getting as much info as I can and feeling that I am doing something to help dd. dd is a lovely baby. Everyone who meets her comments on what a happy baby she is. I cannot imagine my life without her. I have a 6 yr old ds as well so I do feel very blessed to have them both. I am trying to focus on this so that I don't dwell too much on how unlucky and unfair this all feels. That's not going to change anything. Though of course, it doesn't mean that I won't still have days where these feelings are overwhelming. We've both had a huge shock. It takes some time to grieve, to process, to move forward. I also struggle with feelings of envy and jealousy when I see friends dc doing all the things dd would have been able to do were it not for the CP but dd will get there with our help......and I will feel better in time with support from online sources and RL. I'm sure you will too

Feeling a little better, and Ds physio seems pleased with him. She says he is getting better with his muscle control, and that a couple of the earlier flags are resolved (plagiocephaly and head lag). She has also given me a nice little print out of exercises which she has put frequency on. In some ways it seems like a very long road, but in others even if it takes a good few years I am beginning to see light at the end, as she remains sure DS will walk, and says he may even manage to ride a bike in time but he's a bit little to say yet as she is not sure how good his balance will be. She said it may well depend on whether he wanted to. She is sure he'll ride a trike though.

Still wondering whether we should get private help too. The NHS seems to be doing ok with us, and she has seen me monday, today and is going to see my husband next week. Then nothing for about 3 weeks then again at end march. I am so impatient but want to do what's best. The nursery have funding to give 2 hours of 1 to 1 help a day which I am sure is more than i would manage if I was still on mat leave.

Also the only private physio I have found in the area I found via goodle, she says she's bobarth trained but I don't have a recommendation. Scope were useless with that so not sure where else to go.

I have read a lot and don't find it too frightening. I think I have convinced myself it will be alright in the end but then end may be a few eyars away. I hope I am not too optimistic, but I did know DS was behind so I hope my instincts are right again now.

Still have the bleak bits, but this is just the same as it was in Nicu, so maybe I know what to expect yet. I didn't get that little baby to take home straight away, and I won't get the little toddler toddling down my garden this year. Or maybe next.

I think the hard thing is everyone else now.

Hi cloghead, ask your nhs physio for a private physio recommendation.