Is my 20 month old daughter getting the right therapy?

Shelli2830 · March 2017

My daughter is 20 months old and is currently completely unable to weight bear, even when supported. She has been having physio for over a year now and hasn't really made much progress. Her paediatrician is querying CP but her MRI was clear. I've discussed the use of braces, pedros etc with physio and also an OT referral but she thinks neither of them are suitable at this stage.

I just wondered what other peoples experiences were with their children as this doesn't feel right. ..
What age did OT become involved with your children?
At what stage was further standing support or mobility aids introduced?

Thank you

Sam_Alumni · March 2017

@jamiemcminn I know you posted about your son with cerebral palsy, I wondered if you had any advice for @Shelli2830 ?

@stayce can you help?

Stayce · March 2017

Hi @Shelli2830

Your story sounds very familiar to me. My parents experienced the same lack of progress with me ( I am in my thirties now). I did not learn to walk until my parents managed to get me regular Physio at the Bobath Centre
Check this out - http://www.bobath.org.uk/

I am sure others on the community will have other views but I cannot recommend the Bobath Centre enough personally.

You can get NHS referrals to Bobath Centre but it is a bit hit and miss in terms of whether your local authority will agree to it. I have failed twice recently and it's extremely expensive privately

This will take time if you decide to look into the Bobath Centre, so in the meantime
I would recommend a few other things - Is the Physio you are seeing a neurological Physio or musculoskeletal one?

Your daughter at this age would be better placed to see a neurological Physio who would work on balance, coordination, sensory feedback and confidence in achieving stability. If your daughter is not seeing a neurological Physio at the moment ask your GP if they can refer you to one for more specialist input.

OT would generally be introduced at age of 3 or 4 when she starts nursery or school as this will focus on dressing and washing independently, school activities and play.

Introduction into splints and adaptive footwear can vary enormously. Some argue early input is the best others will say let's wait for your daughter to grow and wait and see what is required. I would say if you think your daughter could benefit ask your GP to also refer you to an orthotist (specialist in insoles, splints adaptive footwear) - There are a lot of great stuff out there these days

What exercises do you have from the Physio to do with your daughter at the moment ?

Does your daughter see a neurologist as these can offen refer you to more specialist services in -house ?

I hope this helps

Do let me know how you get on with this and the progress your daughter makes

Good luck - Keep asking questions

Best wishes

@DannyBoy2541 have you got any advice for @Shelli2830 ?

Shelli2830 · March 2017

Thank you for your response.

@Stayce She is seeing a musculoskeletal physio. The only exercise we have been given is practising sitting to standing and that has been for the past 6 months since she learned to crawl. We are at the physio again this afternoon.

She isn't seen by any neurology and her care is currently under the child development service. She saw them for her initial appointment in November and isn't due to see them again until August. Since they are in control of her care I need to wait until August to ask for any further referrals which is incredibly frustrating.

I'm going to email the CDS and see if I can request an appointment sooner.

Thanks for your help

Stayce · March 2017

Hi @Shelli2830

How did the physio go this afternoon for your daughter?

Do you know what type of CP your daughter has? Which of her limbs are affected?

I would still talk to your GP about your concerns and ask about referrals for neurological Physio intervention and orthotics - do you know if it was the CDS that got you the Physio you have now?

If the Physio is on NHS - most Physio departments will have one neurological Physio where you could ask for a joint consultation with the Physio you see now for more specialist advice

Regarding exercises
I would ask the following:

a) sitting to standing can this be broken down into a series of small activities - I say this because with CP sometimes the stimulus can be too high for you to replicate what is being asked of you.

b) Can they suggest some positioning aids/blocks you can use at home. These are like giant cubes, cylinders rectangles etc that can be fitted together so that your daughter can be propped up (in sitting) then can roll (into standing) with a giant shape to hold on to at all times. So essentially the positioning aids and you will take her through the movements involved in sitting to standing in a supported way very slowly

c) Ask about a therapy ball - your daughter would lie on this and you would gently roll it - they are good for balance and activating core muscles which help with weight bearing

d) The Other things to look into is spider therapy
pretty sure these would be exclusively private . This is suspension therapy which allows a child to take weight through their legs being supported through elastic straps and harness so that children with CP can experience what an upright position feels like.

Do let me know how your daughter gets on.

Hope this is helpful

Best wishes

@Noah - any advice for @Shelli2830

wheelygirl · March 2017

Hi I 100% can not stress enough how great splints are if you're daughters cp affect her legs at all because they will help stabilise her ankles and

Shelli2830 · March 2017

@Stayce the physio went really well. she did some supported weight bearing which is massive. The physio said she might introduce a walking frame in the next 6 months.

The Pead didn't say which type. On her MRI request he put spastic diplegia but she doesn't have any hypertonia. I is her legs that are affected and she's very hypermobile. I think she has low tone but the physio says she doesn't her muscles are just weak because she's never weight bared. I don't understand that as no baby has ever weight bared.

My GP says she doesn't have access to refer her to anyone she says it has to be coordinated by the CDS. She wanted to refer her for an MRI but couldn't as she's a child. It's really silly.

Thanks for all your advice I will bring it all up at our next physio in 5 weeks.

@wheelygirl I've said this to the physio because it makes sense but she says she can't assess until she's weight baring. My logic is she's more likely to weight bare with splints?

wheelygirl · March 2017

@Shelli2830 the long and short answer is yes because she can't start to weightbear with out them plus if it were true about splints only being used for people that can weightbear I wouldn't of had them for 20 years and I have never been able to stand due to quderpilcge cereablpalsy kee fighting

ACPL · May 2017

Hi Shelli , how is your daughter now ? I guess she is 22 months ?
the first and foremost thing you need to get sorted is that if she is hypertonic ( stiff) or hypotonic with hypermobilty because the treatment approach for both is totally different from each other . Secondly, She should be made to stand , guided professionally for atleast 1/2 an hour to an hour a day with breaks . This could be achieved with a standing frame or use of gaiters and peoper shoe support . The more she stands her independent weight bearing will improve . Encourage her to crawl over things like cushions , etc., using toys .
Happy to help you with more specific exercises if I can get more information about her . Best wishes

Is my 20 month old daughter getting the right therapy?

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