10 month old -, seeking advice on early intervention & intensive therapy

fellowsfamily23

Hi everyone,

I’m a first-time poster and honestly don’t quite know where to start.

Our daughter is 10 months old. From quite early on I noticed some things that concerned me — a very sensitive Moro reflex and very clenched fists — but I hoped she’d catch up. It wasn’t until 6 months that we were referred to paediatrics. She has significant developmental delays, hypertonia in her limbs and hypotonia in her trunk and neck. She isn’t yet able to reach out and grab, or sit unaided. She’s on a waiting list for an MRI and genetic blood screening, and we’ve been told it’s likely either cerebral palsy or a genetic disorder — but we don’t have a formal diagnosis yet.

I want to be clear though — she is the most wonderful, engaged, happy little girl. She’s so aware of everything around her, loves interaction, and makes the most beautiful cooing sounds. She is absolutely everything to us, which is why this waiting feels so incredibly hard.
We’re currently having weekly physio through our local CDC, and are on the occupational therapy waiting list. But the waiting — for the MRI, for genetics, for OT — feels like it’s standing in the way of building a proper action plan for her, and I know how much early intervention matters.

We are also looking into intensive therapy centres and would love to hear from anyone with experience of these, particularly:

• Centres in the UK such as NAPA in London

• Centres abroad, particularly in Turkey or Poland, which seem more affordable — has anyone been and would recommend them?

• Any experiences of early intervention and the difference it made to your child’s development and progress

We’d also really love to hear from anyone whose baby showed similar delays at around 10 months — hypertonia in limbs, hypotonia in trunk, not yet reaching or sitting — and how they are getting on now.

We’re completely new to all of this and feeling very overwhelmed. On top of processing everything emotionally, it feels like a constant battle to chase referrals and push for answers — and it’s exhausting to do that while also just trying to be the best parents we can be to our daughter.

Any experience, advice, or just knowing we’re not alone would mean the world to us right now. Thank you so much for reading this far.
💛

Mary_Scope

Hi @fellowsfamily23 and a warm welcome to the community from me!

Thank you for telling us a little bit about your situation. It's understandable why you're feeling overwhelmed, waiting for tests and scans can be very emotionally exhausting and frustrating, especially when you just want answers so you can move forward with a plan.

How is your daughter getting on with the weekly physio? Have they given you a rough time from for how long you'll be waiting for the MRI, OT etc?

We do have a wonderful CP network with CP specialists @Richard_Scope @Lucy_Scope @SaraC_Scope who offer specific support to people with CP and their families.

There is also Listening Ear which is a great service for parents and carers of disabled children that may be helpful as they offer emotional support. You will be able to talk to the family adviser about how you are feeling and get some support for yourself.

Lucy_Scope

Hi @fellowsfamily23,

Welcome to the Community. My name is Lucy, and I am a Cerebral Palsy Specialist. I live with spastic hemiplegia.

I am sorry to hear that you are finding it difficult. Your situation sounds challenging. It is completely understandable to feel the way you do.

Whilst I cannot reccomend any services, I would be cautious of services abroad. Make sure you thoroughly research each institution.

It may take some time to get a diagnosis. Multiple tools can be used to diagnose cerebral palsy. This can include: MRI, examining medical history, general tests, and making observations. ​

As an adult with lived experience, my main advice would be to be consistent with physio. I know this sounds simple, but I wish I continued physiotherapy past the point of discharge. It would have helped me a lot more.

We are also re-launching our virtual parents group for parents of children with cerebral palsy. Is this something you would be interested in?

Best wishes,

Lucy

chiarieds

Hi @fellowsfamily23 - & welcome to the forum from me too. As a physio I specialised in treating babies & young children with CP, so realise the importance of early intervention whenever that is possible.

If your little daughter is found to have CP, or a genetic disorder, like @Lucy_Scope I would recommend caution in looking to services abroad. What, & how would their follow up services be provided, & at what cost? Sometimes the prices of services abroad seem attractive, but does research even back their facilities up?

I've been through it with my own family with a genetic disorder; there are services offered abroad, but the cost, & does medical research actually show they give better 'value', or even that it's likely to make a difference?

It's obvious your little daughter means the world to you so you want the best for her, &, as I know, it's ever so difficult to be a patient parent.

Again I agree with Lucy about physio, tho I might be biased! Whatever the developmental delay, physio really can make a difference I know having treated little ones with this. A diagnosis matters, but an action plan with her physio may not change much how she can be best helped. Get to understand from her physio how you can be involved at home confidently & consistently repeating recommended exercises for her (tho you're likely doing these already).

My best wishes to you & your lovely family, & kindly let us all know how you're getting on.

fionacp

HI there, in terms of physio, have you heard of Conductive Education?

Not sure where you're based but my daughter attends It's My Life Trust in Bexley, Kent. It's been amazing for her development and also hanging out with other children with disabilities!

Itsmylifetrust.co.uk

They do Saturday classes and also looking to do a 1 week intensive in the summer holidays.

Do get in touch if you're interested.

All the best x