DD has developmental delays hyper mobility I am worried she has mild celbral palsy.

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Hi everyone need some advice

DD has some development delays through the years she is in year 2 in mainstream school. She will have her ECHP plan soon. She is on waiting list to Pediatrician to be evaluated for Autism as she has speech delayed, social and learning difficulties. We been seen by team of physio therapist 3 years ago when they assessed her for hyper mobility in ankles, knees, wrist and elbows and low muscle tone, they said it’s on the. Higher end of hyper mobility and she will grow out of it at around age of 7. I was worried about the way she walks she has her knee bent but had been gaslighted by professionals and my GP to wait. She had not improved, the worries unfortunately been so hard that it took a toll on my own health I was diagnosed with colorectal cancer year and half ago, so I was butting my disease with chemo and radiotherapy plus surgery. I am now NED thank god felling much better. I really want to press for evaluation of her by pediatrsion hopefully neurological one as she will be at junior school soon, I considered sending her to the special school as well and put her on the waiting list in there so her special needs could be met in there hopefully. I am worried she might have a mild cerebral pulsy she was sitting age 6-8 months started to crawl age 10, she didn’t walk independently until 17-18 months and as she was 18 months just started to walk by herself, she can run and it’s as fast as me, she can ride a scooter she does it every day on the way back from school. She has swimming lessons every Saturday she is learning to swim but quite slow and her swim looks a bit clumpsy as she is very clumpsy and been since i remember .School suggested to evaluate for autism but the waiting list is big so we still waiting. had private speech therapist and still waiting for nhs , her speech improved a lot talking in sentences. Become very sociable at school has few friends and recently been having play dates with them. I am so worried and gutted that medical professionals gaslight and cut us off I called Gp many times and they pressed me to wait for her to grow out of hyper mobility, plus school teachers seem not to be any better. Is anyone been in similar situation with their child? I’m looking for any tips and reassurance how I can push harder and help my daughter. She been wearing ankle support boots since 3 year old for hyper mobility and I wonder if there is anyone who child is wearing FAO orthotics? I’m thinking to get OT for her we do trips to playground every day at spring and summer she is climbing sliding, swinging and jump on trampoline she can balance on the ballancing stones in the park quite well now. Unfortunately when Covid hit and we were in lockdown health visitors could not visit us, and my worries been gaslighted by her hyper mobility so I didn’t push through health advisor for the proper checks. Has anyone similar experience with hyper mobility? Could this been misdiagnosed instead of cerebral palsy? I just watched some videos and it make me so scared that it might be too late, I’m very worried..😟 😔

That post is a lot op!

You talk about being gaslit a lot. I’m not sure you actually mean that do you?

Also, being worried about your child won’t have caused your cancer. I’m glad you’re recovered now.

Hi Tipofthecattoes unfortunately high stress and worries can cause cancer, as it wasn’t any other explanation I’m early 40”s with no family history/ no mutation. My diet is healthy as well started to feel unwell 1.5-2 years after my daughter was born. Spend many nights with no sleep and worried and that is a factor in getting seriously ill.

https://www.cancerresearchuk.org/about-cancer/causes-of-cancer/cancer-myths-question/can-stress-cause-cancer

this isn’t true. Plus colorectal cancer takes around 5-10yrs to develop from a polyp to cancer.

Her physical delays sound pretty mild, tbh, and not atypical for hypermobility.

The paediatrician will also evaluate other developmental delays, not just assess for autism. You could see if there is a cancellation waiting list to get a quicker appointment.

Hypotonia can be caused by hundreds of genetic conditions so might not be CP. my daughters hypotonia is thought to be genetic but we don’t have a diagnosis yet. She didn’t take her first steps until 28 months. In my experience there is no treatment for hypotonia and hyper mobility, just strengthening the muscles through appropriate physical activity. So having a diagnosis might be reassuring but won’t make much practical difference.

i’m sorry to hear about your struggles with cancer but it will not have been caused by stress.

I've never heard of someone outgrowing hyper mobility by age 7 . I've eds and I'm mid 30s and still haven't out grown it . Definitely sounds like you are being fobbed off because they haven't a clue

Gaslighting doesn’t mean what you think it means.

Stress doesn’t cause cancer.

Your medical professionals telling you you’re wrong isn’t gaslighting.

Hi BeaAndBe yes I used the wrong expression as English is my second language, I meant “mislead” not gaslighted. In regard to cancer I was told is bad luck by oncologist, there was probably an issue for long before, but I did not had any symptoms until my daughter was born. For sure it wasn’t just the stress.

Thank you romdowa for this I’m arranging GP appointment spoke to paediatrician they said she is still on the list and the best is to see the GP.

Most (though not all) cerebral palsy is in children who had some kind of abnormal event before or (more commonly) during birth, you don't mention this so hopefully that means less likely?

A paediatrician would consider a range of diagnosed in developmental delay.

Hi
Unseenentity she was born in term excatly 2 days after due date, she was very distress during labour green water, vacuum and forceps delivery.

They kept checking as she was very distressed inside and doctors were checking her few time if all is okay before I started to push. I was admitted at 1am and she was born 12 at noon.
But they way she walks is worrying me that why I really want to recheck. She is very tall her dad is 6’8. Do I need to be referred to regular paediatrician or orthopaedic? Thank you for your help.

You need to wait for the appointment with the Paediatrician. Generally GPs can't refer to specific specialisms (ie orthopedics) for children so the starting point is a referral to Paediatrics so they are absolutely following the correct procedures.

While you are waiting you could ask if it's possible to be seen by the physio again.

I'm sorry that you have been through so much with your health. Your stress won't have caused the cancer. Unfortunately it's bad luck. I also eat a healthy diet yet have ulcerative colitis which is often linked to a bad diet. Sometimes we're just unlucky.

I think it would be worth you finding someone to talk to. You can hear the stress as you talk about the situation. I do understand - my own DD has ongoing health issues and yes it is worrying. However we have to find ways to keep ourselves on an even keel. The calmer we can keep, the better we can work with the medical professionals. You should be able to organise a referral for talking therapy or CBT for yourself via your GP surgery (you can often self refer via their website).

Hi OP, if english is your second language, could there have been a misunderstanding about the hypermobility? My DD1 is 4yo and has just had a hypermobile assessment. They said to me that she is showing signs of it (the physio described her as "hyperflexible"), but they won't diagnose her formally until around 7yo, because as children grow and develop, the level of hypermobility can change and it may be that they no longer meet the criteria. We were told that DD will be assessed again when older. Is your DC due to have other assessment now they are older? My DD is also clumsy when running, swimming etc - we've been told just to make sure we keep up with lots of physical exercise to keep building her muscles until she next sees the physio.

Sorry to hear of your cancer. I agree with pp that accessing some talking therapies for yourself might be helpful as it sounds like you've had a lot to deal with in recent years.

Sorry that you've had so much to deal with.

The best thing to do is to see the paediatrician. It might be that you need a general paeds appointment as well as the autism assessment. It could be that they need to do some genetic testing.

I'm not a medical expert, but i thought that CP tended to cause hypertonia rather than hypotonia.

OP, I can understand your concerns. It can all be overwhelming when your child isn't developing as you'd expected.
it would certainly be worth discussing your concerns with your GP. They may well refer you on to paediatrics.

Just a thought, though, could the clumsiness etc be dyspraxia/ developmental co-ordination disorder? It commonly co-exists with both autism and, to some degree, hypermobility. My son has all three and has a similar profile of having met mobility milestones but then looking awkward and struggling to progress with things like swimming.

Horse riding can be brilliant therapy for improving muscle tone and is used a lot for children with cerebral palsy. You could look for somewhere that does hippotherapy, usually at a riding for the disabled centre. Or just a standard riding school with qualified experienced coaches.

Hi Purpleisnotmycolour, IndiaMaybe, FedUpandEatingChocolate. I talked to the Gp yesterday she said she is referring to OT and paediatrician.

Currently We also have a problem at her school she is in infant section and comes home everyday day with broken glasses like 2 a week.
There is aggressive disabled child which is hitting her, pulling her hair and brakin her glasses we are talking to teachers every day they are telling us that there is no staff to look after her. and they can’t do anything as this aggressive one is disabled and they can’t expelled him.

They been lying to us a lot today teacher told me today that her glasses flew off her face at the lunchtime but the frames from both sides are ripped .
DD told me at home it was that kid who did it. Is there anything I can do to push them to protect her better, she is not evaluated yet so will go to junior section in September. I worry how she will survived in there if in infant she comes home and looked like come back from the war hair pulled jumper with no bottoms on.

I don’t know the law in England and not sure what can I do . At the moment we have been talking to teachers. In year one she had a nice friend but because his is academically better he is in different crawd. tA told me that this child gets “mad “during the day and there are times they have to separate him in a room as he is hurting kids. But apparently they don’t have staff. My daughter has special needs and she can’t run. Away and getting hurt, plus can’t wear her glasses around him he gets pulling the off constantly.

Basically it’s a nightmare and we need to do smth. I work mornings 5 days a week and husbands is back at 7pm we both exhausted and can’t keep her at home.

Please advise what I can do. Thank you.