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

paed

My son has tight Achilles tendons but the OT who spotted it said she wasn't sure if they are tight because he toe walks or if he toe walks because they are tight. Not much help but I have this a mild concern. He has DX of ASD and dyspraxia atm.

In dd's case I think she toe walks cos the tendons are tight

How old is your dd now?

My thoughts as a parent are if your dd is walking be it on her toes then that is really positive. Exercise and healthy foods will be really important to maintain.

She's not walking - she's standing and cruising but not walking

Is she 18 months or so?

yes

Wikipedia says this:
diplegia is usually not diagnosed before the age of 2 years yet the symptoms and signs of the earlier stages are typical and should enable the diagnosis to be made before the contractures have occurred.[9] Parents suspecting diplegia should take their child to the doctor to potentially get an earlier diagnosis.

Yes - it seems to have been missed by two paediatric registrars. Only picked up by a physio.

It would be hard probably presently to know to what extent your dd is affected or will be if this is the case.
It is good that she is standing.
Listen to your instincts like you have been doing and hope you get more answers soon.

Hi Ladylush, my DS is nearly 6 was born at just over 10 weeks early at 29+2. After an MRI at 12 months (adjusted) he was diagnosed with spastic diplegia CP. His day 5 ultrasound showed a small bleed so we had been kept 'in the system' and had physio from release from SCBU.

Have you been assessed by a physio before? I hope so but suspect not as this screening has been majorly cut. As you probably know official diagnosis usually (but not always) comes after an MRI showing damage to the brain. However a working diagnosis is often given as the issues and history would strongly point to it.

The best possible thing you can do for your daughter, whether she has CP or not, is give her lots of physio. Push for the NHS - ours is fantastic and has been a great help on the journey thus far especially when it comes to schooling. However ime they cannot offer enough time to children with CP so we supplement with private physio and do stuff at home.

Toe walking is one of DS's major problems - he has been doing it from about the age your daughter is. He does walk - but not for any great distances. We have a lot of things that we do for this that I can tell you about if you want. However it remains an issue that we struggle with.

DS is a lovely, bright boy who can get frustrated but is doing really well. I'm so sorry that you are feeling knocked sideways by this. It's a totally normal and understandable reaction. Please don't feel guilty about it. I have to go out now to pick up DS2 from nursery but will be around later.

Take care

Paediatric registrars are useless in this instance. Ask to see a consultant but in our experience the best have been the paediatic physios. They know far more and have been far more helpful than the Drs.

Approx where are you in the country? I have some contacts if you are near me!

ladylush You will feel better!, You have had a shock but you will get used to it, you will have your up and down days but it will take time.
DS has CP following a traumatic birth and starved of oxygen. He has all over (arms and legs) CP he is nearly 2and a half, so far he can sit with propped arms, and walk with his walker.
We know a young lad (4) he was 10 weeks early and has diplegia he has just started school, and is doing very well. he can't walk unaided as yet but gets around with his walker, and on his tired days has a wheelchair, he is very bright and is basically a 4 year old, with phsyical problems.
your dd sounds to be doing very well if she is able to stand, be it on tip-toes. she may need some intensive physio to lengthen her achillies and maybe some suppoetive shoes or insoles to help her with her walking.
If you are interested I can recomend a good book to help with exercises.
Dr's are usually crap at spotting CP in young children, and when they do they have NO tact about telling you.
Your physio will be the best person to advise you but (and this is the hardest thing to accept) No one has a crystal ball and can tell you what your dd will be like in x amount of time, take every day as it comes, she is still your beautiful daughter you fell in love with and will always be.

Hi - sorry that you are feeling sad,but it's not surprising- I remember being given the formal diagnosis and even though I knew already,it was hard to hear

the person who picked up my ds's cp was the gp - missed by paeds and physios-kept saying he was just delayed,but I knew it was more

My ds has tight achilles-coming from the calf;one side tighter than the other.We do a few minutes of stretching (shown by physio) every night after his bath-It has worked to keep a good range of movement

At this time you are only beginning to find out the extent of you dd's issues,so it probably won't be clear yet how severely (or not) that she will be affected

It is a good sign that she is standing-

I agree-get as much physio as you can - and good luck

Hi my 9 (nearly 10) year old daughter has diplegia, left side worse than right. Right side is v mild. Early intervention is the best thing with lots of physio, soft play areas are good. My daughter toe-walked - and although she had splints, loads of stretches she still had to have an operation on her left leg, which was successful in keeping her foot flat. If you want to ask any questions, please feel free. My daughter was diagnosed at 13 months by a MRI scan. Its a difficult time where you are at the moment but try and stay positive (I know easier said than done).

Thank you for your kind and helpful messages. They made me cry. It is really helpful hearing your experiences. Hairy - I am in south London. I would love contacts if anyone has any. Physios, Cons. Paed and Cons. Neuro - do I need any others? Hairy - this was dd first physio assessment. The physio we saw is a bit far away so might be better to find one nearer esp if she needs it more than once a week. Still on waiting list for nhs.

It must be a terrible shock for you after coming out the other side of the prem birth thinking all was well. Things will get better like everyone here says. You now need to push for weekly physio, special piedro shoes, daily workouts and stretches to lengthen the tendons in the legs which have shortened. Be very careful what you read, especially on tinternet as they always paint the worse case scenario. Doctors are usually miserable pessimists and physios lovely optimists! This book is fab here and not scary. Meet other mums with CP kids in RL and here. Go to 'Scope' website for lots of hints and tips.

Nowt - yes she is still my beautiful daughter and it's because I love her so very much that I am struggling to deal with this. I can't bear to think of her in pain - or being made fun of because of the way she walks. And silly thoughts like oh she'll never wear heels! Or dance - she loves music. I would like the details of the book u mention - thanks. She stands leaning against things - not self supporting. She climbs stairs pretty well - using arms for support.

Hi Ladylush
It is overwhelming in the early days because you know nothing. But you learn about the condition and you learn what your child needs and you learn to take it a day at a time.
Should think most parents want what's best for their child. When they've got SN you just have a bit of a fight to try and secure it for them.
This board has been excellent for me.
One of our sons has cp - diskinetic spastic quadrapeligia. Sounds horrendous but he's a lovey lovely little boy. He's 4 now. We don;t know if he'll ever stand or walk (he's not as able as your dd) but I hope we'll give him every chance to achieve those things if that's the way it goes. It's not the end of the world if he doesn't though.
Can recommend a fantastic clinic in Clapham if that's any help, but your dd does sound quite talented already!
Otherwise get a DLA form sent to you!

Yomella - is it the one in thurleigh road?

Sorry to but in but yes Kiki's Clinic in Thurleigh Road is excellent. Kiki is amazing we used to do the journey when my daughter was alot younger - never seem to find the time anymore.:(

I have a ten year old girl with CP but have had a meal out so a little bit too tipsy to properly help you sorry

I know exactly where you are now, I have been there, and I know others on this thread will have been too.

You need to push for physio; as parents you need a physio programme that you can do yourself daily

as your GP to refer you to your Child Development Centre

If you are getting nowhere and you have money for private physio I cannot recommend the Bobath Centre in East Finchley highly enough - we used to get funding to go there and they are just LOVELY

emotionally though you will be going through a bit of a wringer right now so take care of yourself. Dh and I got through the early months solely by drinking copious amounts of wine and clinging to each other

Hi ladylush,

I have an 18 month daughter with CP.I can across the poem "Welcome to Holland" not long after DD was diagnosed and still return to it when I feel at little overwhelmed. Hope the link works and you find it helpful

www.our-kids.org/Archives/Holland.html

I have a 3 yr old with slight CP (quad dystonic). It has been a roller coaster of does she/doesn't she since she was born. She has made a huge improvement over time despite her brain damage and initial prognosis. Physio has been really helpful and we have also used OT services too.

I found a good web page about prematurity and CP - quite informative and positive..

www.comeunity.com/disability/cerebral_palsy/cerebralpalsy.html