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.

That makes sense, thank you. Its all new to me and I guess I had an image of paed appts and that being it.

four horses I cannot do the link but if you google hemihelp you will find a website that is specifically set up to help children with hemiplegia. It may have some useful stuff of you there.

Stuff FOR you.

www.hemihelp.org.uk/ in the family section there is a leaflet which explains the role of different health professionals after diagnosis.

hopefully some parents who have children with hemiplegia will be on soon to explain the input they accessed to help their child.

My son has cerebral palsy. our experience was the same as PolterGoose described.

It seems a bit odd to me that you have been discharged altogether. DGS was transferred from the care of the hospital paed to that of the community paed as he clearly needed ongoing care. If your DD has a diagnosis of hemi CP she needs to be reviewed on an ongoing basis in case the needs change, eg needing Botox to help with the stiffness.

If she has poor fine motor skills on the affected side she will need OT intervention. Ask too about portage as they also deal with fine motor skills as part of play therapy. The physiotherapist can refer to orthotics for specialist shoes which are often needed.

Basically she won't outgrow the hemi CP but will learn to compensate and will I think do well, but she certainly needs monitoring as walking in a lopsided manner can cause muscular skeletal problems. The physio can monitor this but it's usually overseen be the community paed. They also look after things like weight gain/growth and refer to speech and language if needed.

I would phone up the paeds secretary and ask her to clarify the situation for you. Discharges? Who oversees ongoing care? Who will coordinate care if there are problems? Make a list

I agree with sneeze My Dd3 has Asd but we found that when she had been discharged from the Paed we didnt get enough support and felt like no one was keeping an eye on her.

We have recently been able to get her re referred to a Paediatrician who is going to keep her on her list and help us to get the right support for her.

I think even if your Dd was only seen occasionally she should still be on someones list.

Get on the phone and good luck

Aplogies, for clarification , after diagnosis my son was not seen at the hospital for active follow up. We did have a community paediatrician operating out of the child development center who my son saw regularly .
The only time we had input from the hospital consultant staff following diagnosis was if a specific problem arose and the community paediatrician or GP made a referral or if my son was admitted to hospital as an emergency.

13 year old son, left hemi, diagnosed at birth pretty much. Early intervention from neuro paed, child development paed, physio has been invaluable. PM me if you need further info x

polter I even managed to find one with a specific in girls with Asd (showing off emoticon)

Wow, thanks for so many comments.

Sneeze, iit doesn't say discharged as such, but 'I have booked no further clinic appointments'. A bit unclear.

Her fine motor skills aren't awful, just she for example has a pincer grip on one hand whilst uses a fist with the other. Its improving all the time, at six months she fisted it all the time.

Weight is the only potential concern I have, I've realised she's lost nearly half a kg over three months. Otherwise she's just too young to know really. Its not tight either, its weakness and poor motor skills.

Mabs, thank you, I will. She's mild, though at birth she looked obvious with a curled arm its subtle now with just a mild motor delay.

Zebra, thank you so much for all that effort! I will read it all.

A letter arrived today with a physio appt for next week! Lovely notice for work but nice of them to be speedy. It's in hospital so ill ask then.

Thank you again

I have a son with right hemiplegia. He is eight. It was diagnosed at about a year as like your child, he wasn't reaching milestones. Every hemi child is different. The peson You saw can't possibly predict the future. I would go back and ask when the next review is!!! My son is fairly mildly affected, however after referral to physio he wears a night splint. He has had a LOT of referrals over the past few years (since the original dx) such as occupational therapy, speech and language etc. He also has a statement. Don't be fobbed off and go with your instincts if you feel your child needs the help, either medical or educational x

Ps. Hemihelp is a huge support! They helped me a lot and do loads of leaflets etc. x

so agree re Hemihelp Bigbird :)

Agree word for word with sneezecakesmum. This is our experience to a tee.

DD2 has bilateral asymmetric CP (both sides affected but right is affected more) and is 2.5years now. In our opinion, DD is only mildly affected, but she still gets all this help:

We have Paed reviews every 6 months (hospital), physio weekly (home), OT every 2-3 months (home), opthamology/opthalmic review every 6 months (hospital eye doctor for squint), new piedro boot fitting every 4ish months (hospital), SaLT review every 3 months but is about to be put on a block course (health clinic), portage weekly (just finished now - home) & portage swimming fortnightly (special school).

I've found the physio the most hands-on help - referrals, equipment, practical advice. Most of the others are 'reviewing'.

Wow everydayaschool day....that's a lot! Could I pick your brain and ask how similar this was to your dd at similar ages?

birth: a vague awareness one arm was more curled, until 4/5 months VERY difficult to get a coat (wrapped in blankets in the pram for ease). Didn't dwell tbh, jaundice dominated worries.

4/5 months: got a bit worried she was far behind my son at this age. On her front couldn't lift her head at all, just lay there (very happy). Sick after everything but again happy. At 6 months mentioned to HV she couldn't roll/ lift her head, quite dismissive and 'reassured' me. Said to come back at 10 months if she couldn't sit.

6 months: went to GP for another reason and mentioned it whilst there, pinpointed her difficultly. One arm had a really limited range of movement and she screamed if it was lifted, her arm barely reached her shoulder. Put down to shoulder pain but referred to paed (shocked me a bit after the hv's comments)

7 months: saw paed for the first time. Not sitting/ rolling etc and when I walked in he asked 'is her hand always fisted like that'. I was a bit taken aback but in retrospect old photos show it was nearly always in a fist

12months: review, huge huge improvement. Using hand but 'immature grasp' Just starting to crawl, quickly improving after sitting at 9.5 months. Rolled over a few days after her first birthday. Crawling quite even after the first few weeks, only going into a half crab crawl if tired or crossing more than half a room. Her hand opens to crawl, just bend fingers. Easier to dress, her arms lift now. The only thing strangers really note is her size, she's so so small they presume she's younger. You no longer notice an unused arm (I spend lots of time playing with her and gettng her to use it).

13 months: pulls to stand, crawls. HArd to describe, no more than an awkwardness to her. If she is for example very slightly reclined sitting she can't lift forward, she struggles to roll sideways, onto her front then pushes into sitting. Sits alone but slumps in the buggy still and is stuck if reclined a bit so very passive in the buggy. If she's crawling forward she struggles to lift her head, if she crawls to my lap she just headbutts my leg, if her head does lift and her spine bends she is totally stuck and squeals, say if she gets her hands on my leg then collaspes down. Looks quite average, just a few quirks. Her arms only can feel stiff occasionally, I could lift her by placing my hands under her elbows and her arms stay at right angles to her body.

I know it sounds silly but I've lost all sense of how I judge her. I first took her to the GP really for reassurance that babies do odd things, expected a chat and advice to massage her or something, got quite upset initially at being referred. I felt silly going at all as I thought there was nothing wrong, then a bad mum when others thought there was. Now I still feel like someone will turn round and label me a fussy mum and tell me she's fine. The paed this time was quite different, the first he was very soft and concerned saying he didn't want to worry me a sI left looking shell shocked and the next it was like a different man. It was the way you'd talk to a fusspot, 'the physio can recommend a few exercises, I'm sure what you're doing is fine, she's very sensible' and 'last time I was concerned about hemiplegia as you know (I didn't!)' so I was surprised when the letter arrived saying 'probable very mild hemiplegia'. It's short and nearly curt, 'I feel this will be of no consequence to xxx in the furture as she seems extremely able to compensate'. I think it adds to this insecurity that nothing is wrong and I'm fussing, which is silly, I actually got annoyed with my GP who was direct about referring her in the first place and she was quite clear with me it was needed when I suggested waiting...

Thanks if you read that ramble....

Oh and it's interesting a squint was mentioned, I'venoticed in the last 1/2 her eyes are rarely straight in pictures. Though I don't see it when I look at her... really can't be sure at all but it's a niggle I'll mention.

It doesn't sound silly! My DS first (and only) child so had no idea what was "normal". All I knew was that we weren't keeping up with the "competitive" mums at baby groups etc. my health visitor listened to my concerns and obviously the birth trauma was already known. My DS is the opposite to your little girl, he is very very tall! So the size isn't a hemi thing. He was about 15 months when he stood up unaided and 16 or 17 when he walked first few steps. He never crawled. Pulled himself on tummy using one hand and foot. Aside from physical, speech was and is an issue. He was three and a half before he said first word. He made a few babbling noises and he was referred to salt so has always been in the system. He can speak now (he's 8) but he has a lot of problems with literacy and numeracy. He has a statement and we managed to get a place at a specialist independent school for him. He also uses his left hand to write when we think he should really be right handed, so this is a further challenge. They are all different but he is happy and funny and full of life and he makes friends. I know it is always going to be a challenge, but as a parent I feel we have a much stronger relationship because of his issues not despite them x

Thanks, although dd isn't a first the others were very early on motor skills. DS walked at 10 months, crawled at 6, sitting just shy of 5. I probably try even harder than normal not to compare her. You're lucky you had a good hv, mine practically shut me down when I went to see her. Spoke over me before I even got to saying she was uneven.
She does crawl, she went very quickly from no arm use at all (frozen when sitting) to trying to lean on them. Once she weight bore a bit they became much more mobile in a few weeks. She crawls many ways rather than one way, half crab, both knees down, on both feet, dragging lwgs, alternating every few steps. Her main problem is turning her torso, she could never commando crawl on her belly for this reason.

I presumed the size was as she burnt so much energy trying to move. She was 8.3kg in November and is now 7.8kg which isn't great. I didn't realise until I weighed her the other night.

I worry about the using the left hand thing, dd is right hemi and we're all very right dominant as a family.

Mainly I just forget about it all, she's great fun, happy and a delight. I feel a fraud even saying she's different! You always get the line 'all babies are different' if you mention it, like you (or the paediatrcian??) made it up.

Hi Fourhorses our timeline reads like this:

Birth: traumatic, resusitated, seizures for 7 days controlled eventually by meds, discharged from SCBU after 12 days. We definitely recognised a stiffness in her right arm and as she grew it became 'tucked in' and her hand held in a tight fist.

9 months: another seizure. Still under care of hospital paed.

10 months: not sitting unsupported and showing left hand dominance. This was the red flag (for CP) to hospital paed.

11 months: another seizure. Hospital paed refers for EEG and MRI. EEG clear (no epilepsy) MRI shows some brain damage.

16 months: CP diagnosis.

19 months: sitting unsupported.

20 months: pulling to stand.

22 months: transferred to community paed.

24 months: crawling and cruising

26 months: walking unsupported (slowly and unsteady - short bursts - 4-5 steps)

31 months (presently): 20-30 independent steps. holding hands outside but walks (unsteadily) on her own indoors.

Only now beginning to develop speech. I got my first 'mummy' 2 months ago, I think (29 months). We do a lot of Makaton

I look at that list quite astounded. Astounded because we don't really recognise our child as being disabled. She is funny, engaging and gorgeous with a massive personality. She is also smart and clever, and can throw the most terrific 2-year-old tantrums .

I absolutely feel a fraud whenever we have a therapy appointment, and it took me ages to register for DLA for her. But she qualified for mid-rate DLA and is therefore deemed 'officially' disabled. So I completely 'get' what you mean by feeling a fraud. But you're not. And neither am I.

I've had the 'all babies are different' by well-meaning work colleagues. I put it down to them trying to be supportive without knowing how best to actually be supportive. People think being supportive = being positive. This can come across as simplifying or playing down symptoms and worries that I am trying to explain, but I know they (colleagues) don't really mean it like that.

I noticed the squint when DD looked intone the distance, or if she was daydreaming. She can pull her eye back in to focus in the mid and near distance. Squint is on her affected side (right) and is probably linked in with high tone muscles on that side.

Have you had a lurk on the CP thread? We're a nice bunch, come and join in .

not intone, in to