Cerebral Palsy diagnosis..feeling lost

[Adhsmum]

I'm not at all sure how to start, or even what to say. My beautiful daughter was born at 29 weeks, and had a very traumatic birth. She was in hospital for 10 weeks but after coming home she really seemed to thrive. She reached all her milestones pretty much on time, except for the walking, but even that was only slightly delayed and she began walking at around 18 months. But the way she was walking just didn't seem right to me, and she kept falling and tripping. I brought it up with her consultant at her review when she was around 22 months and after much pushing from me (he just thought it was developmental delay) he referred her to he physiotherapist.

Pretty much as soon as she was seen by the Physio, I knew from her expressions, from her choice of words, that she thought it was Cerebral Palsy. She didn't say it, she just described it. She was really suprised that her doctors hadn't picked up on the increased tone in her right leg. She has since seen orthotics (who have given her insoles) and had a Baley assessment (which is standard here in Luton for extreme prem babies). During this appointment, I asked the doctor directly if my DD had CP, she said if I wanted an actual diagnosis then she would have to say yes, but it is very mild. I had an appointment with her consultant a few weeks later, but when I asked him if it was CP, he said "you could call it that, it depends on how you want to look at it". So I asked for an MRI, which he has somewhat reluctantly arranged for me-the appointment has come through for the 4th of April. Saw the PT again yesterday who told me that there was no doubt that it was CP, but they couldn't confirm the diagnosis until they do an MRI. On examination, she also said that DD also seems to be affected in her left arm, though I have to be honest, I hadn't noticed her having problems with it. We have an appointment with orthotics again later this month, our Physio said that she will also attend to try and get a particular type of splint for DD to try to improve her gait. She has shown me some stretches to do with her but says that she won't be receiving PT as such-she'll only be seen to review. DD is now 2 years and 5 months. I don't know what to do for her. I feel I should be doing be more. The Physio kept telling me that I was very lucky, her CP is mild, andI know that I should feel grateful, but the truth is I don't. I am walking around with a sick feeling in my stomach. And the guilt is unbearable. She sleeps really badly at night, the more active she's getting, the more painful her muscles are at night-and nothing I do seems to help. I've been reading a lot of the threads on here, and I feel so ashamed at frankly over-indulgent self pity, but I can't help it. I seem to be functioning on auto-pilot at the moment. I really need to get a grip, for my children. I just feel that I've let them all down.

Adhsmum, welcome to the SN section

I think we've all been where you are to some degree - that point of realisation that there is something that makes your DD's life more difficult.

I'm sure some of the parents of children with CP will post soon.

Have a whether it's MNetty or not!

We got DD's diagnosis of CP at 2y2m. She started walking days before the diagnosis. We were very 'lucky' in a way as we got our diagnosis without an MRI - the paed and the physio both agreed she was a textbook case - born at 27 weeks, possible maternal infection causing the early birth... She didn't have any obvious head-bleeds during her stay in special care (in fact, she sailed through, was out in 9 weeks and had a much easier ride than many of her peers).

By the time we got the diagnosis we were almost expecting it - the physio and a teacher at the special children's centre we were attending had both picked up on some 'unusual patterns of movement'. In a way it was almost a relief to get a diagnosis - it suddenly unlocked a lot of doors. We applied for (and got) DLA, we got access to an occupational therapist, we got more regular physiotherapy sessions, etc. However, it still didn't stop me feeling sad - it was a lifelong diagnosis, she was never going to 'get better'.

However, since diagnosis (DD is now 3y and 10 months) we have all come to terms with the diagnosis. Some things still catch me unawares (watching DD struggle at a softplay party while her friends go charging around her, etc) but generally we cope. We do stretches and physio 2 -3 times a day, we have applied for, and received, a statement for both preschool and next year when she starts school, we have various bits of equipment to help us with daily life, and she is a perfectly happy, sunshiney child.

Our paed, when giving us the diagnosis, said 'It doesn't change DD. She isn't DD-with-CP, she is DD. She'll just need a little extra help sometimes.'

Ok, I've waffled too long! If you have any questions, please ask - I remember only too well how earth-shattering that diagnosis is, and I wish someone would have taken me by the hand and said 'It'll be ok!'. So...

It'll be ok! :)

First of all - the guilt feelings are normal but you really have nothing to be guilty for. You haven't let anyone down and you are doing an amazing job finding ways to make your DDs life easier

My DD has mild CP - dystonic, which means she is very uncoordinated, has hand tremors and walks like she is drunk. I will be honest, she has had struggles but and a big but, she has gone through school and 6th form and is now at college.

Realising your child has an additional need hurts but now you know, now you can start getting what she needs. You will have to fight and learn what is out there, You will do what is needed

And in the middle of it all, will be an amazing little girl, who will adapt to her limitations. She really will and you will be by her side, helping her and loving her.

So stop the guilt, what's done is done, it's the future that matters now

Hi adhsmum and welcome to the board. Sorry you are having to deal with this.

Keep coming on here for advice and support.

Good luck

Big big adhsmum..... I hv an asd dd but hv come to terms with dx. Try and look beyond the diagnosis. Work on accepting and maximizing dd potential. U r special....

Yesterday I was at Gymboree and saw a lovely 2 yr old boy with down,s. he was walking with his mom.s help and when left alone, could not walk. Doc just sort of dragged himself on floor but despite that...guess who had the most beautiful smile in that room...it was not my dd...it was this boy and I could not take my eyes off him....the prettiest little thing ever

Sorry you are having to deal with this. We have a similar problem but are unlikely ever to get an official diagnosis. My son is 3.1 now and I am basically told that he is walking, coping okay and to go away and get on with life. We only have PT reviews because I insist. He does have insoles and heel supports in his shoes, but again, this is because I really pushed for them.

For my son it manifests in very loose tone in one leg, giving him a slight limp and weakness. He can't manage soft play, runs very awkwardly, but generally we are actually happy he got off this lightly. He and his twin were born at 23 weeks and weighed 550 grams so if this is the only problem we will face then so be it.

I understand more can be done for high tone, so keep going back, keep pushing for what you want. If you go away meekly and mildly, you will just be another name crossed off a list. It all comes down to money, which is a shame.

Thank you all for your advice and encouragement. I've been moping away the tears.

I do understand that I need to get a grip, I'm a bit better when I'm doing something for her, but when I'm not I feel like I should be doing something. The Physio yesterday explained to me that if her gait is not corrected then their ate risks if causing damage to her spine, and of leg length discrepancy. I'm scared stiff. HDEE, I think you're right. Physio pretty much made it clear that there are lots if therapies available but funding had to be prioritised. And of course, when you think about it pragmatically, it's right that the most deserving children get the help; but when the mother in me takes over I just want to scream at them to help my baby. I feel I should be doing more, but I don't know where to turn to. I can't find any specific help for CP in our area. There are options available further afield, but they are simply beyond what we could afford. And therein lies another reason to feel guilty.

Galena..it was lovely to hear how well your DD is doing, hope I can find a way to support my daughter as well you have.

I'm not sure if this might be of any help to you?

There's also this is Hemel Hempstead?

Our physio told us at the start that DD is likely to need major surgery when she is 11 or 12 to correct bone deformities. I was horrified and couldn't understand why she was telling me this - but I now realise that she wanted to equip me with as much information as possible. She didn't want it to be a nasty surprise. As it is, we've investigated alternative surgery which we want DD to have in the next year which will hopefully prevent or at least minimise the need for the surgery later.

I can't understand why the physio isn't taking a more active role in your DD's care. Our DD is fairly mildly affected (in that she can walk unaided), but we still see the physio for an hour a month. If your PT has mentioned that problems may occur if gait isn't corrected, then you would have thought she should be helping to correct that gait! Maybe once MRI is done, and if CP is confirmed, you will be able to push for more input.

Thank you again Galena.

This is my frustration exactly. We gave only managed to come this far by me pushing and running around trying to get someone to take notice. I've actually received a letter this morning to say that she has been referred for a multi disciplinary assessment to see what support and help she needs-but there is a 4 month waiting list for an appointment!

Btw, I emailed the place in Hemel, and they have replied by saying they don't cover this area 😞

Dd2 has cp and is now a strapping 9yo that skis, goes to ms school, girl guides, has swimming lessons, etc etc etc.

She was term but suffered birth hypoxia. We always knew knew there were likely to be issues (she spent 5 weeks in SCBU and was discharged with full follow up, so had physio and SLT from birth). Despite this, they called it 'developmental delay' until just before she was two, when I essentially said to the consultant 'right, but you need to actually give it a name, now' as it was blatantly obvious from her history and clinical presentation that she has cp.

We have our very own cp support thread on MNSN. Come find us, if you haven't already!

Dx is always rough - remember to look after yourself. Maternal guilt is common as muck, and always misplaced in this situation. Have you claimed DLA? Dd2 got hers from 6 mos, despite no official dx for another 18 mos.

Come and have a read of the support thread, anyway. I can't link on the dumb iPad, but hopefully someone else has!/ will!

I remember how hard it was to hear Bee had CP - she was diagnosed early, 9 months old, but that was because she had had a stroke at 3 weeks old, so it was a "given". The odd thing is that her CP should be hemiplegic (one sided, generally the arm more affected than the leg), but she actually has diplegic CP (affects both sides, legs moreso than arms). With that said, I rarely think of her CP any more...

I promise you it will not sting and burn forever, right now the wound is fresh. Eventually it'll be more like a scar - you know it is there, but have become used to it... maybe it'll feel funny or ache from time to time, but then it'll recede into the background and you can get on with the day to day.

It is not your fault - not that those words will make the mummy guilt go away.

Here is the link for the CP support thread. :)

Hi Adhsmum. DX is a horrid time, there is no rule that says you have to be strong & not cry. Have a good cry, things havent worked out as expected, dont feel guilty for feeling sad, you are normal.
Give yourself time, you will feel better I promise!
When ds2 was dx'd our very lovely physio told us to treat him exactly as we did ds1. Physical play, rough & tumble is very good for developing muscle strength, stretching & reflexes without feeling like therpay.
Swimming at the hydro pool at the local special school was great (they did baby groups when the school werent using it)
We have always found that we get the best exercises &s tretches done in water so we stretch ds2 every morning & evening in the bath.
We have a huge water bill but he has so far retained a good range of movement & mobility.
ds2 was born at 28 weeks & has a dx of mild spastic diplega CP, Autism & learning difficulties.

Its true the diagnosis period is probably the worse....after traumatic birth scenarios. It does get better over time though there are lots of ups and downs.
Get this book here Its brilliant and parent friendly with lots of useful exercises.
Look into 'Brainwave' They do fabulous work and are great to lean on! Anat Baniel Method have practitioners in london and really help some children. Hydrotherapy (available on the NHS) but increasingly scarce Stretches. Physio should give you guidance on exercises and positioning. OT. Check out Portage they also do wonderful work with play therapy. Scope have local helpers, so definitely contact them.

Thank you all once again for your kind words.

Sneezecakesmum..I ordered that book a few days ago, I'd seen it mentioned before. Hopefully it will give me a few ideas, my daughter hates having to do her stretches.

Does anybody have any advice on helping her to sleep. She only manages to sleep in short bursts, and wakes up screaming that 'it hurts'. Her leg is constantly twitching. I always bath give her a bath and massage before she sleeps, and try and get as many stretches in as she will allow-but nothing seems to make a difference. It seems the older-and more active she gets, the worse it's getting.

If her tight leg is actually painful then you need to see her paed and they may consider some kind of muscle relaxant like baclofen, but as this affects the whole body it may be only suitable for nights to help sleep. My grandson tried this at night but it gave home night terrors. It's difficult really.

Hot water bottlle helps ds2 with leg muscles, he has a bath before bed & then I put a hot water bottle between his calves when I go up to bed, seems to help him sleep a little longer.

My son (6 nearly 7) has spastic quadriplegia. He did not sit up until 16 months and did not really walk at all and was a full time wheelchair user until a few months ago, when he had SDR. He now walks with a kaye walker and will hopefully ultimately use crutches. He is an amazing little boy, loves life, is academically bright, has wonderful friends and is in a mainstream primary. Of course the pain I feel about his CP will never go away, but as others have said it does dull, and I certainly love him as he is, because he is a fabulous little boy.
My best practical advice to you would be of course to make the most of what the NHS will offer you, but do not rely on it. Our NHS physio did not even tell us that we should be stretching him every day. You absolutely must do that. As others have mentioned you may want to look at Brainwave, or Footsteps, or conductive therapy, Anat Baniel etc. Do not let any professional tell you your child is 'mild', 'could be a lot worse' etc and fob you off. There is a lot out there you can do, but you do have to go out and look for it, your NHS physio / paediatrician probably won't tell you about it.
Thinking of you, it's a tough time, but will improve and you will get on with your family life, even if it is not exactly the one you thought you were going to have.

My son has CP - hemiplegia. It affects his left side. We found out when he was 6 months old, because he was only using his left hand.

I also felt devastated. If only I could have then seen DS as he is now though ...

DS goes to a mainstream school and is just the same as all his class mates. His CP is part of who he is and I am so proud of him.

The guilt and regret that you feel is normal, but it will fade with time.

We do physio with DS every day and have done since finding out about the CP. I've mainly paid for things myself and there are charities out there who will help with the costs. If you'd like to know then ask - about the charities and also about helpful therapies.

The NHS offers very basic help. I've come to realise that it is so overstretched that the NHS is never going to offer us anything miraculous.

Thanks so much for your kind words. I am still up and done, I can be fine one minute and the next, I'll be in a heap. Shopping yesterday was awful. I caught sight of some really cute little girls sandals and thought how lovely they'd look in my daughter. But of course she will never be able to wear something like that.

I know I should be grateful, my daughters CP is very mild, but it seems to me that the attitude of the docs/physio is that she is mobile, so thats it. webhave been offered virtually nothing. like you, the physio didn't tell me how important the stretches were. In our first visit she spent about 30 seconds teaching me how what to do. It's only when I really pushed on my second visit (nearly 6 months later) that she took the time to show me properly (I hadn't been doing them right ). I also wasn't til this visit that she fully explained the importance of the stretches and the long term implications for her if her gait does not improve-leg length discrepancy, curvature if the spine-which is pretty horrific for a parent to hear.

I have contacted brainwave, the Bobath centre,Footsteps and looked in to Anat Banial. SDR surgery has also been mentioned on here. But to be honest, I'm still none the wiser, and I still don't know where to start.

Hi there

As an adult (I am 35) I felt I must respond to you as I also have mild CP and so does my son (he is 13). Please do not worry about your daughter it sounds like you are doing everything possible for her.

My CP affects my left arm and leg I was unable to walk unaided until I was 6 but now you would not have a clue if you looked at me. I drive a normal manual car and generally live a normal life (as does my son). I have a really good job which involves a lot of typing (I can't touch type as my manipulation skills are not great but I overcompensate with my right hand and I am very fast). I am unable to wear flip flops as I cant grip my toes to keep them on and I am unable to carry a hot drink in my left hand without it shaking and looking rather amusing and I sometimes struggle with food prep but thats about it.

When I was younger I had to wear a splint to try and stretch the muscle at the back of my heel and as I was determined to be 'normal' like everyone else I did endless stretching exercises. Maybe your physio has provided you with some you can do with your daughter at home if not do ask as it really does help loosen stiff muscles.
I am proud of what I have acheived and I have my parents to thank as they wanted me to live such a normal life and I never saw myself as having a disability I just had to work a little harder than everyone else to get where I wanted to be.
Try not to get down keep doing what you are and remember that your daughter can and will go on to lead a great fulfiling life as long as she has you beside her willing her on.

Well done!!

Michelle

Michelle,

Thank you so much for your message. It had taken me a little while to respond to you-it was incredibly emotional to read. I hope that I am able to raise my daughter so that she is one day as capable and inspirational as you.

THANK YOU

Michelle,

Thank you so much for your message. It had taken me a little while to respond to you-it was incredibly emotional to read. I hope that I am able to raise my daughter so that she is one day as capable and inspirational as you.

THANK YOU