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DD, 3 diagnosed with "very mild hemiplegia" not sure of best approach(28 Posts)
So, DD is 3, she was premature and not breathing at birth, but met her milelstones on time and in general you wouldn't notice anything different from any other 3 year old. However she has always been a lot more wobbly than other kids, falls a lot, gets tired quickly and uses her left hand and foot more (has done since a baby). We saw a neurologist who noticed she has a stiff right leg, low tone in core and holds her hand up when running. Her report this week said it is probably a very slight degree of right sided hemiplegia - an MRI is being done to confirm.
It's a bit of a shock but not too much as I'd kind of reached the same conclusion myself already. What I can't work out is how much this diagnosis ought to affect the way we treat her day to day.
For example if she says she is tired should we let her go in the buggy or try to persuade her to walk? She is not great at self feeding or dressing, how hard do we push her to learn these skills vs how much do we help her? I don't want to be mean or counterproductive by pushing when something is harder for her, but on the other hand I get the impression that pushing her could be good for her to strengthen her muscles etc...
What about schools - one school we are considering is academically selective (yes at age 4! ridiculous I know!) and has a reputation for being rather competitive both in terms of academics and sports. In some ways this would suit her quite well (she is bright and confident, some might say pushy ) but should we now rule this school out because of her slight physical issues and the increased chance of LDs?
Physio - of course the doctor has recommended physio but the time and money spent doing that does mean we can't do other things, and there's a limit on how much I can do at home with a baby as well. So, how much physio... is once weekly enough for example? I don't know whether she could get worse if we don't do regular physio or stretches?
I feel like we're not in the world of more pronounced CP where life must obviously be adapted and physio done daily etc but we're also not totally in NT land either. Anyone else in a similar position?
Any advice from anyone gratefully received (even if it's "stop overthinking this and just take each step as it comes" - I do have a tendency to overthink things...my way of dealing with things is to form A Plan) Thank you
I don't know anything about hemiplegia, my ds does have joint hypermobility syndrome and hypotonia. He was diagnosed by a physio and we've had advice from physio and occupational therapy, all NHS, and tried to incorporate exercises and wotnot into daily life. With working out how much to do and how and when to help/support, you'll find what works, it can help to keep a diary.
And you can claim DLA, which would help with cost of therapy.
Rather, you can apply for DLA as I'm guessing her care needs are over and above a typical child's.
Havw you had a referral to a physio? If not I'd ask .. mostly likely you'll be given advice and exercises to do.. they are likely to be simple and only take a fw minutes of your day.
My DS2 has somewhat similar difficulties..has had physio input and many exercise sheets over the years. It might be worth asking fora referral to orthotics if felt useful for insoles or AFOs and to the OT for useful mini adaptations (chunky cutlery etc)
In terms of what she should be doing... from a school's perspective (I have a son with disabilities and I work in a special need's school), help her become as independent as possible. Being ok at sports is FAR less important than being able to get her own shoes and socks on, and being able to feed herself.. no one will mind her needing help to cut up food, but she needs to be able to use a fork by herself.
Dressing is often easier if you go 'weak arm/leg ' first in coats or trousers.. forget tights and go for easy to get into clothes. One of 'my' little lads has very severe hemiplegia ..non walking and left arm mostly useless..but he can get undress himself with very little assistance and would be furious if we tried to feed him Don't baby her... accept she may get tired more quickly and may need her buggy still, but encourage a 'can do' attitude.
With regards to LDs..I wouldn't worry.. if you say she is bright and confident, she sounds to be on an equal footing to any other 3 year old. No one at that age really knows if there will be subtle LDs in any child so if it's not obvious, assume the best not the worst
My DS1 was non verbal very wobby and very obviously delayed at 3. Tonight he out-answered the Chaser on TV (OK he's autistic too with a photographic memory... )..you never know what the furture will hold :
Thanks both. Sorry to have posted and run, both children woke up!
Her difficulties really are very minor - she can use her right hand and foot, just prefers the left, and she can use a fork, just often prefers to be fed (esp since arrival of baby sister)... I struggle to work out how much is weakness and how much is just her being tired/lazy/regressing like any 3 yo can do.
She does get tired a LOT so at least I now understand why (though she also doesn't sleep well, sigh)
Thanks for the advice - I will book
in to see a physio privately so let's see what they say about home exercises.
I suspect we wouldn't stand a chance of DLA as she doesn't really have extra care needs tbh. But I guess that might change as she gets older eg if she still can't dress herself at age 5, 6 etc.
She saw a podiatrist when she was 2 who was not terribly helpful - he gave us some insoles but said he wouldn't really recommend them (?!) but maybe I should try to see someone else. or ask the physio. We got her some ankle boots (kickers style) recently and they do seem to be helping a bit.
Thanks for the reassurance about LDs, that is the bit that worries me most. She is definitely more stroppy/emotional compared with the average 3 yo (she has always been "spirited" ) but I think that's more to do with her being very tired a lot of the time, and inherited personality traits!
All in all it sounds like the physio is probably the best person to ask a lot of these questions and suggest things to do at home...
There's some excellent resources in these Fact Files produced by my local integrated therapy team (SALT, OT and Physio) which you might find helpful.
Have you come across this charity?
Thanks for the links, I will have a look. I have seen Hemihelp when googling but will take a better look.
Understandably most of the info on line is aimed at children with more severe hemiplegia so it's hard to know how much of the advice, statistics etc will apply to DD. For example I have read 10% of children with hemiplegia will have epilepsy, I presume that DD is unlikely to be in this 10% since she's so mildly affected but don't really know?
I guess I'm wanting answers nobody can give...
Minipie my DD has very mild CP. It's difficult knowing how much to push and when to let them rest. I know our paed said it's like she's working twice as hard as an NT child just trying to keep up!
Could some of the physio be done at nursery to save you doing it all at home? We had physio and OT going into nursery to show them what to do and how to help with progress.
Caring cutlery is good to help with self feeding - sold on Amazon. Also worth seeing OT for other suggestions for equipment to help with her independence.
The waiting game is horrible :-( I worried a lot about stuff that didn't happen until it was clear DD wasn't going to be affected in that way. Good to have the dx early as plenty of time to get plans in place for school.
Thanks mumsnit, good to hear from someone in a similar position.
Yes I've realised how hard dd must have had to work to hit her milestones "on time" and to do everything she does - I'm so proud of her <teary>. I don't want to let her down by not doing something that might help long term, but I also don't want her whole life to be about physio when she's done really well without it. Difficult.
May I ask, when did you feel confident that she wasn't going to develop the stuff you worried about?
Re physio, I think her nursery school would help in theory, but would need some specific things to do - something else to ask the physio about i guess.
I'd really welcome ideas for things we can do that will help at home which would be easy changes and possibly fun for DD. For example the ankle boots, the cutlery suggestion (thanks), also I have read that trampolines are good for core and DD would love it anyway so that's on the Christmas list! Any other similar "easy wins"?
Oh and one more question: How is an OT different from a physio and do I need to see both? Also DD dribbles a bit and lisps, so I wonder if SALT is needed too?
Thanks again all
minipie, my DD 7 has very severe hemiplegia affecting her right side.
As others have said, Physio would be the best to advise on what type of exercises you DD might need.
Horse riding is great for strengthening core muscle and my DD loves it.
Swimming would encourage use of both arms and coordination, I've heard some trying ice skating or ballet - good for balance and coordination.(Not the case for my DD as she can't walk independently yet)
OTs are looking at how to improve fine motor skills, they could give you advice on dressing, self feeding, encouraging use of the affected hand, etc.
Try to encourage your DD to use her affected arm as much as possible, dress/ undress herself and do other self care tasks as if she gets used to doing them now, it would be easier on the long run.
I've heard really great things about hemihelp, would think it is definitely worth getting in touch.
From the little I know, 2 or 3 minutes physio every day would be more useful than half an hour once a week; in reality probably a bit more time is appropriate but remember the principle of little and often.
I was never formally diagnosed, but probably had an extremely mild diplegia; age 12 I went to a group physio class which was great, but as they said it would have been better had we found them several years earlier! Main consequences stiffness / hopeless at sports.
I suspect the combination of encouraging your daughter / work on activities that involve her weak side but acknowledging tiredness and need to rest as well, is the way forward.
Thank you both, I am seeing the physio on Thursday so can ask them about exercises at home etc. Yes little and often does sound sensible. She is not a very compliant child <sigh> so we'll see what I can get her to do...
I think they have OTs at the same clinic so maybe the physio can recommend one. DD struggles with self feeding and dressing although I'm not sure how much is due to the hemi per se (she can actually use her right hand pretty well), I think a lot of it is more down to tiredness and habit? Maybe she has got discouraged by not finding it easy? In any case, definitely worth seeing an OT for some tips to make it easier for her, and maybe the OT could also have some pointers on how to motivate her.
Moomin she does swimming and ballet already and loves both so that's good to hear! Horse riding, I think she would love it but we are in London a long way from any stables.
Python may I ask has your stiffness/symptoms got worse over the years? I have come across some posts online from people with CP saying they are having more stiffness and pain in their 20s and 30s, perhaps because of the strain on the muscles and joints.
My to do list (this is just to help me remember!)
- Speak to physio about home exercises, things nursery can do, OT, SALT
- Caring cutlery
- Mini trampoline for christmas
- Speak to Hemihelp
YY to trampolines! DD has a weak core and has built up a lot of strength using a trampoline. Also the horse riding suggestion is a good one - we did this through RDA for a while (may be centres in London?)
To answer your question about long term worries, I'd say by age 5/6 we kind of knew what we were dealing with. Not to say I don't still have the odd moment of thinking about the future and what it may bring but we're plugged into all the therapies now so we can discuss concerns if they do arise. Hopefully once you get physio, SALT and OT set up they will continue to monitor things
Thanks mumsnit - a proper trampoline or a mini trampoline? our garden is pretty small, we could fit a proper one (8/10 ft) in but it would take up quite a lot of the space.
Age 5/6 ... Yes I had sort of guessed we wouldn't know till after she starts school. At the moment she is being SO difficult but it's hard to know whether it's "just" mega tiredness from starting nursery/dropping nap/constant winter bugs or whether there is a behavioural issue as well.
At the moment we are not plugged into the NHS at all so doing everything through a combination of insurance and paying ourselves... At some point I need to work out how we get back into the NHS for her, we can't pay for private physio forever and insurance only covers 10 sessions I think.
How about a second hand horse riding machine off ebay?
Gosh minipie - that must be expensive! Assume the neurologist has referred for NHS physio? From there, we got referred to SALT and OT and also to a neurodisability nurse for specialist advice and support.
're Trampolines - we have an 8 ft with a net. Has been great to see the improvement to her balance over the last few years we've had it!
Well to be fair insurance has paid for most things so far, but my guess is they won't pay for much past the investigative stage (chronic conditions usually excluded I think).
Neurologist has written a letter with the diagnosis which says she recommends physio, but I'm not sure how I get from there to NHS physio - I guess I need to show the letter to a GP and ask nicely ?
The appointment I have booked for tomorrow is with a private physio, so I will hold off asking her about OT and SALT until I've figured out the NHS.
I may have to twist DH's arm as regards a proper size trampoline!
Js thanks, I will take a look...
neurodisability nurse also sounds like something I should ask about!
Minipie, hope your Physio appointment went well and you got a few answers.
Does your DD like pretend play? You can get her to feed her favourite teddy or dolly or help them dress/undress... or help you make some cookies - let her do the scooping
Hi. My DD2 is 4 years old and has CP too. I'm happy to answer any questions on what we've done and our circumstances but I don't want to overwhelm you with my first post to you. I'm on the CP thread that runs in this topic - I'll bump it up the topic list for you to see in a minute. All of our healthcare has been NHS and all our education has been state-provided - we have not used any private or privately-funded resources.
Health You asked about getting into the NHS provision. We have an NHS Consultant Community Paediatrician at our local NHS hospital who is our hub of support and can refer us into any other NHS departments - I would ask your GP for a referral to an NHS Paed Consultant. In the early days we had frequent appointments and reviews with our Paed, but these are now annually. She referred us to NHS paediatric physio, SaLT, portage (Learning through play), ordered the MRI scan (confirming the CP diagnosis) and an EEG (DD had seizures and her EEG ruled out epilepsy). Our physio provides regular reviews and blocks of targeted treatment, and has referred us to OT, orthotics and Wheelchair Services.
Education When DD2 was 2 years old, I applied to the Local Education Authority for an Assessment of Special Educational Need - they referred an Educational Psychologist to us, who reviewed DD2's needs and supported the requirement for a Statement of Special Educational Need, as did all the other departments involved in DD2 healthcare. My DD2 does not have LD but her physical disability does make her access to education more complex. Within 6 months she had a Statement (now called EHCP), to support her in her nursery setting and now at a mainstream primary school. DD2 has a 1:1 full time TA provided by the Local Authority.
Gosh, I've written much more than I was planning to. Sorry if this is all too much at once. Again, I'm happy to answer any questions on what we've done/gone through if that's of any help.
Tiredness - my DD2 works really hard to do the same movements, walking etc that her peers do, so she does tire quicker than her peers. I take this into account, and although DD2 can walk with a lot of effort, we have the wheelchair for when she gets tired. DD2 is highly self-motivated though, so if she asks for her chair, I know she really needs it.
Getting worse over the years? - CP is not a degenerative condition as such. The neurological damage that DD2 has will not worsen. However, the physical symptoms of that damage can change over time - for the better or for worse. Example: growth spurts can be an issue. When the bones grow, the muscle has to stretch to keep up. Complications can arise if the muscle doesn't stretch enough and that's when you get a tightening or high tone of muscle, that feels stiff. Our physio is watching for this at the moment as DD2 is going through a growth spurt. Also, if DD2 doesn't have a good gait while walking for example, this can put additional strain on other joints and muscles. Our Physio makes regular recordings of her walking and reviews it in slow motion - the results of this is why DD2 has orthotic insoles. Also, we have an annual hip x-ray (referred for by the Paed Consultant) to check DD2 hip remains in the correct alignment while she is growing.
Thanks both. Physio was good so far as it went but think she was not really the right person for most of my questions.
Everyday I feel a bit of a fraud saying DD has CP tbh. She does technically, but at the same time it is so minor that most people would never spot it, it's only on stairs or steps or when watching her gait that it shows - and even then, only a medical person would spot it as CP I think. (I am assuming your DD2 is more affected than that?). That's why I am not sure what, if anything, we would get on the NHS - they may say she is not sufficiently affected. Worth a try though and it's very useful to know what services are available if she is deemed affected enough to get them. Also if she can't get NHS then it's useful to have your list so I can consider paying for some of that stuff privately. Thank you.
Minipie for the amount of support we get (and that I've listed), you'd think DD2 was quite severely affected. In fact, I think her CP is mild too, although since DD2 has not met any of her millstones in time (we get there eventually lol), she is perhaps slightly more affected than your DD. She can walk and manages a school day without her wheelchair - we use it for family days out, or if we had to walk to school, school trips etc. I completely feel a fraud, so I get why you feel like that too. But we're not frauds, and our kids do need a bit of extra support, and that's all we're asking for.
I've found the NHS to be really good though (not everyone feels the same way), and we have never been dismissed just because DD2's not as severely affected as another person in the waiting room. I've found that we're treated individually; we're not competing for services against 'more deserving' cases. Wheelchair services said they had lots of clients who were 'occasional users' of their wheelchair rather than a full-time user, when I aired my concerns to them of feeling a bit of a fraud when my DD2 walked into Wheelchair Services for her assessment. Yes, I did use the word 'fraud' too , and the lady was very understanding about it, but said she could see that a wheelchair would help us, and that's why they could provide us with one.
Don't get me wrong, services are stretched, and you may not like the waiting times (we waited 9 months for our first appointment with wheelchair services after being referred, and we've now waited 4 months for botox injections and a splints referral with nothing yet heard from either of those departments). But whenever they have though we have had a need, they have helped.
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