DS just dx with mild cerebral palsy - feel so overwhelemed and lost

[Jane2771]

Hi, my DS who is 10 weeks prem has just been dx with mild diplegia in his left leg. He is 19 months adjusted. I feel so frightened about this and keep asking myself why him - hasnt he been through enough. I feel utterly lost and scared and just want to curl up and cry. Anyone else been in a similar position - I could do with some positive stories.

Really sorry to hear that. we have a premmie too, 11 weeks early too and we have been told suspected CP. Intensive physio does help along with hydrotherapy and occupational therapy. Have you been referred to any of those?

I share your feelings, we only got told about it last month. it was a bit of a shock to be honest and we are still getting our heads round it. we increased the physio substantially and it has made some difference to the tightness in his legs. I posted on this thread and they were able to give me some positive stories and recommendations for books for exercises. link here

Hi Jane, I have no experience of CP but I wanted to say hi and welcome to the board.

You have come to the right place for support and advice. Could I just say I have been watching the paralympics and there are many amazing athletes competing who have CP, Who knows what your LO will be capable of in the future.

Be kind to yourself and good luck

Jane
I am sorry to hear about your DS. It is a huge shock to get any diagnosis and leaves parents worried and stressed about what it means for their DC. Has he had a lot of medical intervention since his birth?

He will need a comprehensive assessment from a specialist Paediatrician...most Child Development Centre's have one. He will need the services of a team that includes Physio, OT . Ideally he should have a screen from a SaLT too.

Be very kind to yourself now...you will learn what you need to know for him once you have your head around it.

Thanks for the messages. Can I ask what does SaLT stand for? Except for the late walking ( hence why we got the dx) he has been fine and has hit every other milestone . We had out first PT meeting this week so starting physio now. He has started walking now and you wouldn't notice anything except he limps a bit. We have orthopaedic boots on order that should help as well. I just don't know where to turn as I don't know anyone in the same situation as me. I mean - what will his future be like, as it is mild will he be ok and not need too much intervention. I also feel like I'm at breaking point - just as I was coming to terms with everything that happened we get this dx - I don't know how much longer I can cope.

Speech and language therapy/ist

Jane
SaLT is Speech and Language Therapist. I dont mean to add to your worries but it would be best practice that he be screened (as he is so young) to ensure that there are no receptive language issues. Most likely not an issue but crossing all the t's and all that.

Was his diagnosis of hemiplegia or diplegia?
If he is already walking, then his prognosis should be very good- once the Physio has assessed him, s/he would be the best person to answer your questions about his long term physical abilities.
This is the national charity for CP.

This is the post grad training that most therapists who work with CP have undergone.

He has diplegia and only in the left leg. I will ask about SaLT, we are going to see a neurologist as well so they might suggest that. He talks non stop and understands everything I say to him but I will definitely ask about it.
Justabout... Thanks for that it really has made me feel that it might not be all that bad.

I think I need to try and get over this label and see him as the most amazing smiley little boy that he is - and take each day as it comes. Doesn't help that I blame myself for everything he has and is going through

Jane
I am in the same position. My little man is 21 months and was born 8 weeks early. Its a huge shock at first and i feel your sadness and worry! Although we do not have mri diagnosis (waiting for that) his paed talks in letters about spastic diplegia being the cause of his spasticity in both limbs. My son has had physio for 3 months now,including daily exercises and i have seen an improvement. He could not even sit before,he now can,he has learnt to crawl the stairs and has started to pull to standing and i beleive in his own time he will walk.

Get access to as many services as you can that will all help him! I have found swimming brilliant. We are also waiting for boots,i'm sure they will make a huge difference.

Remember our children are super special as they find ways around whatever problems they have!

Hello! Come and join the cp thread, if you haven't already, there are quite a few of us, now!

Dd2 was born term, but suffered hypoxia and was v poorly - no gag or swallow.She spent 5 weeks in SCBU having lots of tests etc, and was discharged with a full therapy team (including slt) but was just tagged 'developmental delay'(even though they awarded her high rate care dla at 6 mos. they formally dx her with spastic quad cp at 2. She was re-dx athetoid cp at 4, because her tone had changed so much. We were originally told she would be unlikely to walk or talk, but she's 8 now and pretty much does the lot. Ballet, jazz, skiing, brownies, hiking, she can almost swim, and has always been in mainstream school. She does it all in her own way, and was very very late and needed a lot of help along the way, but these days is very able. The cp is just a very very small part of her.

I would absolutely agree that a mild cp dx really doesn't have to be traumatic down the line. it sounds really scary, but it doesn't have to be.

Last year she wanted to learn to skateboard, so a friend welded a handle to an old one. This year she wanted to learn to rock climb. we have fobbed her off with guitar lessons instead.

But come to the cp thread, ESP when you are wondering about stuff.

Thanks again for the replies... It helps just to know I'm not alone in this. Mad woman what thread are you talking about. Sorry I'm New to MN. Your DS sounds like an amazing little girl. I just look at my DS and think he has been so strong to get through everything he has already - I'm do very proud of him

Sorry I meant you DD

Hi

this is the thread

www.mumsnet.com/Talk/special_needs/1334870-support-information-sharing-thread-for-parents-of-children-with-Cerebral-Palsy.

And as madwoman said there are a lot of us on there. In my case my DS was pick up at about a year corrected having been 11 weeks prem. He had an easy ride in scbu but much mich harder since. He still can't walk but is getting there slowly. I have my moments and I don't know what the future brings but if DS can manage so can I

Hiya and welcome. Sorry you have had to walk this road to find us here but as has been said there is lots of parents with children that have CP on the board and plenty of advice and support which I hope will help

My dd is 5 and has mild CP and a similar birth story to madwomans dd (not prem but suffered hypoxia before birth). She has it in all 4 limbs and a weak trunk but is fortunately pretty mild so she can walk, ride a bike etc.

Your ds sounds like he is doing great and getting all the right help and support

Hi, ds2 has mild CP, spastic diplegia. he was born 12 wks early.
After going through the SCBU rollercoaster a dx can hit you like a tonne of bricks.
Give yourself time, allow yourself to feel sad & cry but remember your ds is still that same gorgeous little boy.
If he is walking already & appears it appears to be mild there is no reason to think he wont go on to do all the things you hope & dream for him.

Thanks everyone and for the link. I thought we had gone through all our crap and this happens. I keep thinking I'm ok then burst into tears - I can't speak to my best friends who keep ringing as they know we went for the assessment last week - I just don't know what to say to them.
I keep hoping that all will be ok then scaring myself witless that something else is going to dx. I suppose only time will tell. It's helping to know there are people out there who are going through this and offer encouragement so thank you all.

Deep breathes....

You'll get there. Personally I would recommend that you do tell one of your friends and ask them to tell some others. It's hard telling people, and people will not know what to say to you. Many will say the wrong thing, or say nothing. Eventually you will get used to that, but for the moment if someone else tells them it will save you seeing the look of OMG what do I say which will hurt while you are in the place you currently are. And your friends will surprise you.

It may also be easier to steer clear for a few weeks or months of other children of the same age, but again that gets easier over time, and given your DS is still young the other children will not bat an eyelid, which will help their parents to do the same.