Discharged? Silly questions about hospitals and hemiplegia....

[FourHorsesOfCourses]

Last time dd saw the paediatrician he spoke about her in descriptive terms, then surprised me with a letter with a diagnosis (mild cerebral palsy/ hemiplegia) 4 weeks after. Maybe for some it would have been less of a surprise but I just didn't put two and two together at the time talking about the 'problem with her right side'. He spoke like she was fine really. The letter says he has booked no further clinic appointments...is she discharged? He's copied a physiotherapist in by way of referral (it's been 7 weeks since and heard nothing though).

It feels unusual, though I have no experience. Firstly she was 12 months at the time of appointment and had not met many milestones, if she continued not to would the GP re-refer her? Or could the physio, say if when she walks she has similar difficulty with her foot like her hand has? Her progress is all over the place, she only rolled over at 13 months and she'll do some things but get stuck totally on others. Or is it that there's no appointments but he keeps an overview still from others?

He also says in the letter that he 'feels it will be of no consequence to her as she appears extremely able to compensate'. She crawls unevenly and has trouble with one hand (sort of uses it like a very young baby just learning to grasp might, can't let go and fists things if she manages to hold them) plus mild motor delays generally. Is he saying she'll grow out of any issues, or that he thinks they won't be of a big deal in his opinion because she'll work round it?

I'm probably over-thinking this but it bugs me a bit.

Everyday - do you have my son?! apart from birth , which was at 27 weeks so expectedly hideous, it very similar.

He is very verbal and no learning difficulties, a very typical lazy 13 year old teenager in truth! but, when he was nearly 5, he regressed and became incontinent, so now has to catheterise after many surgeries. As others have said, I would get all the medical input you can early on, then see what works/helps you both later on.

Sorry to hear your DS had to be catheterised.

You must be very pleased to have a typical lazy teenager - I like hearing about the older kids and how through adversity of their younger years, many adapt very well and have all typical teenage traits that we, with the littlies, are also hoping for, for our kids . Only in our unique world would typical teenage traits be celebrated lol.

Thank you for sharing, really appreciated.

I've lurked on the CP thread...but I'm not confident she has it and feel a bit funny going there. Somedays she just seems so normal I compartmentalise it all and forget. Strangers wouldn't look at her and see different, I struggle to equate her with CP at all. I know you're all great with each other, but it seems riduculous to compare her mild mild issues with what others have to support their children with.

Whilst when she was younger everything seemed noticeable, she's developed very very well. She's a hyper demanding terror fine on a day to day basis, I do though talk myself in circles. I'm aware as she grows things may keep changing and I'm ok with that, just now seems the wrong time to accept it? I STILL think they could change their minds.

You are right, they do change their minds sometimes! There's a couple of posters on the CP at present saying their child's diagnosis might be changed from CP to dystonia.

It's so difficult when our kids are very little as they have so much time and potential for further development. To some degree I feel some of the projected outcomes we've been given are an 'educated guess', but mostly medical professionals are unwilling to give us any projections of what the future might hold.

Give it a little more time and see how she continues to develop. She seems to be doing very well so far. I'd ask for a review in 6 months with the paed just to put my own mind at ease. I'm sure he'd be fine with that. (I know ours would, she's very good and always asks for the parents view and opinion).

Well met the physio today. Found it odd and a bit flat, she agreed with diagnosis an Pointe out things like her little finger not opening, immAture grasp, leg moving less and dragging a bit. But also she said she has no worries and doesn't need to see dd again.

It feels like they say yes there's an issue, try and get used to it. She said looking at her you will see the differences but it will be functional so won't bother her. But It'd bother me if I had a right sided weakness! It's like they think others have bigger issues so they focus on them, she shouldn't be there. It'd be great if just a community physio or paediatrician saw her yearly just to monitor development.

She certainly needs at least an annual overview. It's all very well to say she has an immature grip and no pincer grip, but suppose as time goes on she learns not to waste energy on that hand and uses it less and less? The function would continue to decline and a golden opportunity missed to obtain more normal function.

If you can't get the services you need and have money to spare you could try a private physio. We go to Brainwave every 6 months and they do a full assessment and an exercise program addressing the needs of the child. Bit expensive though but excellent.

If they say there is an issue (which they are saying), then she should at the very least remain under the care of the paed for a review. She'll need to be reviewed as she grows to see if the muscles lengthen appropriately with the growth of her bones. It's when the muscles don't stretch when the bone grows, that problems can occur with not being able to extend joints.

This is what I've been told by our paed and physio. So our DD is being watched for her hamstring muscle properly stretching as she grows. Her legs are fine and straight just now, but if her hamstring muscle doesn't stretch on the next growth spurt then her leg(s) will be bent at the knee. The physio is not saying this will happen, just something that they're watching out for. This is why you need the periodic reviews.

If they say she is going to have functional differences, then they cannot factually state that these will not bother her. What a silly thing (on their part) to assume!

Phone the receptionist for the paed and ask for a review date (6 months would be great but even if they say 12 months, take it). We're with you on this one and you're not being unreasonable.

I'd also ask for an Occupational Therapy referral (our physio referred us for this but so can the paed) as your physio has confirmed an immature grasp. Our OT (today) has just noted that our DD's thumb has recently started to be tucked in (DD's now 2.5years), and is ordering a splint to open her thumb out. It's little things like this that I would hate to get missed, and if you're not getting any reviews, they will be missed.

This must be so hard for you starting out on this journey with what seems like very little support. Take heart, you are doing all the right things for your DD by questioning the level of care she is being given. xx

I'm w wondering if waiting a bit to see how she walks then asking for a referral to cdc. The hospital seem to view themselves as dealing with bigger issues, maybe a community paed would have more understanding of milder cases and needs?

Feeling a bit down really, had it confirmed that there is an issue but in the same breath that she doesn't need to see her. One of things she said was when she's two or three I'll need to start giving he pegs to build hand strength, so it's not a total do nothing. She said her standing very wobbly Nd dragging a leg is normal at this stage. Fair enough, but if it persists...? She out toes and drags her right foot, folding it right over.

I'll look into brainwave

totally agree with all Everday said and I second the vote for Brainwave. they cannot and must not intimate/say hemiplegia then just ignore it! do you have a neuropaed anywhere local?

I am so sorry you are feeling a fit down and lost, I totally understand and can relate to that too. Did you manage to talk to Hemihelp? they are really good, even just for listening. Can I ask where you are in the country?

Looked at their website.

We're in london

Charlie Fairhurst at Evelina Hospital(st Thomas') is brilliant :)