To ask how I am expected to encourage walking if she won't walk?

[ChocolateTeddyintheMicrowave]

DD is 2.6 and has a hip dysplasia in both hips. I've been told the condition doesn't cause physical delay, but she didn't meet any of her physical milestones on time, she's been reviewed by a physio and paediatrician who both cannot see any other reason for a physical delay after full body X-rays, MRI scans and a CT.

DD only started walking at the end of April, just 2 months shy of her 2nd Birthday. When she walks she walks well, but the majority of the time she flat out refuses to walk. We've been told to "encourage walking where we can by not carrying her and to punish her for crawling where she can walk". We've also been told the condition doesn't cause any ill effects in the child and she should not suffer pain or stiffness.

Until the snow and ice set in DD was doing well and had gone days using walking instead of crawling compared to hours, and we hardly needed to pick her up. But now the very cold weather has set in we're back to square one. She's been lying in bed since she woke up screaming because I won't carry her, I've tried bribery, putting the heating on and just plain ignoring her but I'm going to have to pick her up soon as I need to go to the bank and the chemist in town, so we'll need to get dressed. Nursery said yesterday she hardly walked at all and was crawling everywhere, they have said they WILL not punish her for crawling as they're worried it'll discourage her from moving at all.

She has a speech delay and is struggling to tell us the problem so it's a bit of guess work but this is the only reason I can see her for her sudden problems. When I asked her orthopedic consultant and paediatrician they both said even if she would not walk I was to walk away and leave her crying, and to put her in a timeout if she crawls instead of walks, they said to be consistent and she'll get it eventually. They've said it's a behaviour issue NOT a hip dysplasia problem.

But nothings working. I've tried ignoring and she's still in bed after being awake since 8.30, and the time outs don't work as she doesn't understand why she's in it as she her she's just getting around. When i told the consultant/paeds this they both just shrugged and told me she had to walk as they'll be advising me to ditch the stroller when she gets to 3 and she can't crawl around outside safely. I've changed orthopedic consultant twice now and all 3 have said the same apparently it's the hospitals policy. And the paediatrician is good in all other areas so I don't want to change him unless I have to.

So what can I do? AIBU to carry my child when she's obviously struggling? and to not punish for her crawling instead of walking. It seems cruel to leave her crying in bed when I can do something about it.

I have a connecta carrier, I love it but DDs a little heavy now. I'm only short myself (5ft 1) so it's uncomfortable to carry her for long. I have a stroller which she loves, and there's storage for at Nursery who have said I am welcome to store it with them even when she should be past the age of needing it, as they have enough space to store across all rooms.

*past the supposed age of needing it

I really don’t think the not walking thing is your problem here, I think ِthe problem is your daughter being a victim of poor management of her condition which is possibly not helped by budgetary considerations on the part of the NHS. They should be treating her. This wait and see approach is dangerous. I would seriously be locking up a stink and getting her referred to Birmingham - you can see Mr O’Hara on the NHS. My mum learned too late that she should have fought for my treatment. Don’t let her grow up like me with long term problems and a permanent limp

feesh She has a permanent limp on her left side which is supposedly the worse side. I will definitely get a referral to Birmingham if in January they refuse to treat her, do you know if I contact them myself and express concern if they won't refer her?

My guess is GDD too, with low muscle tone being an underlying issue (dd2 has a working dx of GDD for 2 years but I self -dx cerebral
Palsy at 6mos. We had Physio and SLT from birth though and dd2 was a much more complex case. Not suggesting your dd is so complex but there are definite echoes).
How is her feeding? Fine motor skills?

If she has bilateral hip dysphasia, no amount of encouraging, telling or ignoring in an attempt to make her come to you will change that. She's too young to be so consistently and stubbornly refusing to walk and instead of letting the drs do a 'wait and see', you need to be a squeaky wheel until something is done.

I would let her crawl as much as she wants to. If nothing else, if there genuinely is no other reason, crawling will be building muscles and therefore is better than nothing at all.

My sister had hip dysphasia which wasnt picked up at all until she was near enough 3. She endured years of surgery and last casts as a child and as an adult, has had hip surgery again to break and realign the hip bone - it was an alternative to hip replacement which would need to be done regularly once started.

Had it been picked up and mum not dismissed as neurotic when sister was younger (bear in mind she was a very irritable and crying baby constantly, likely because of pain), she might not have suffered as long and she might not have had the problems she does as an adult.

If your current hospital won’t refer then go to your GP and explain you need a second opinion and want to be referred to Birmingham.

Chocolate I appreciate that you can’t afford a private referral... but can you ask for a second opinion on the NHS?

My son spent a few weeks in the pavlik but it was unsuccessful. He had a closed reduction at 6 months. This was followed by 3 months in a hip spica cast and then another 3 months in ring splints (another type of harness).

He’s 4 now and the early intervention appears to have been successful.

My youngest had the pavlik only for 3-4 months. She’s 2 now and is getting checkups every 6 months.

For both children the early intervention worked.

Looking back I would always prefer and recommend the operation when the baby’s younger (and preferably before they’re mobile). I know that our consultant was also a big advocate of intervening earlier.

Others have recommended a surgeon/consultant local to you. Although there may be speech and maybe other development issues at play I’d still be wanting a second opinion.

Wait and see if all very good if earlier scans have looked positive and if they see improvement... I’m not convinced that this is the case for you?

I wouldn't let anyone tell me when to punish my child, and especially not to punish them when they have a physical disability, did they actually say punish??

She feeds fine, uses a knife and fork well, and eats normally. She doesn't use a pinching motion but does hold a pen/pencil/crayon happily.

Caffeine Thank you, I will definitely be pushing for a second opinion. I don't feel the pavlik harness/physio has worked and it's frustrating as the PH in particular was a stressful time for me, I remember crying daily feeling I'd failed my DD. I will definitely get my GP to refer me if the hospital don't listen when I go again. I am so scared this is going to be lifelong.

There are loads of good hip doctors in Birmingham by the way, not necessarily at the Children’s Hospital though. Go and see your GP for a referral. She needs treating - she is bilateral with a permanent limp on one side, your current surgeon needs to be shot! Mr O’Hara works out of the Royal Orthopaedic Hospital in Brum. He’s paediatric but he saw me as an adult and fixed me!

Encourage walking with positive reinforcement not punishment. The advice you got given was shit.

^ this.

Could it be that her hip problem is either hurting because of the cold or is causing pains elsewhere that is making her reluctant to walk? When one of mine had a hip problem that shouldn't have caused problems with walking it made their knee and ankle hurt.

I would trust your own instincts. If it feels wrong to punish for crawling or not walking then don't.

There may be other stuff going on that may come out in time that the doctor's haven't picked up on yet.

My two were late walkers due to hypermobility (but we didn't know it at the time). I have 1 diagnosed autistic child and the other is awaiting an autism assessment. When I look back now, it explains alot about their behaviour a few years ago.

By the way, crawling is actually really good for muscular development so I would let her carry on. Swimming is also good, but I’d advise against gymnastics as if she is hyper mobile you might do more harm than good.

feesh Definitely going to find a way to go swimming thank you so much for the advise.

Chocolate the pavlik harness can be difficult... my son went into his at 2 days old and I remember many many tears before we got to grips with it.

Definitely try to get another opinion - have someone else review the scans taken to date and ask some questions about the benefits of earlier intervention.

I have never had advice to push he children to walk... personally I would be ignoring that and doing as the other posters suggest - go with your gut and with what feels right. You know your daughter best

I've found a children's hospital to be better with my son because he has more than one thing going on so eg his lack of speech doesn't phase doctors that work in other departments.

Faze not phase.

Please Google steps and look on their website. They also have a helpline and specialise in limb conditions including hip dysplasia. My little one has a different condition affecting her hip but I would be shocked if a consultant gave me the advice you are receiving. Personally I think it sounds like she is in pain. The Steps page have a helpline and they can also access independent medical advice and that will help you when discussing with your consultant. Can you access a different hospital for a second opinion? We got a second opinion at Great Ormond Street and just requested it through our GP

Some total utter nonsense spouted on this thread.

Watching and waiting is not ‘not treating.’ It is active management and waiting until the right time to operate or to not operate. A decision to carry out major orthopaedic surgery is never taken lightly. Three years old is about right and that has nothing to do with saving money.

Hip dysplasia will not cause significant delay in motor milestones. However a condition which leads to global developmental delay may have a higher incidence of other conditions such as hip dysplasia.

Finally I really hope that you, OP have misinterpreted the advice that a child should be punished for not walking because that is appalling advice. Carry on encouraging your daughter as much as possible and give her loads of praise. If you can go to soft play and swimming that would be great.

If she has a permanent limp how can they say it's not causing any pain or stiffness. I was born with bilateral hip dysplasia which wasn't picked up until I was about 1. I had successful treatment but even now in the cold I get pain and stiffness. There is an obvious mechanical reason why she may not be able to, or be willing to walk.

I have read the entire thread and see a few people have also suggested contacting Steps! Please do this urgently, they will be able to advise. They helped me enormously when I had an unusual problem related to my daughter's condition. One of the ladies on the helplime (Debbie was her name.i think) even followed up by calling me every couple of weeks to check progress and generally be supportive.

I have to question their advice to punish your DD for not walking. Clearly there is a reason for her not wanting to walk and as you're finding out, no amount of punishment is going to make her walk. It's desperately stressful for all of you - I'm so sorry you're going through all this. My view would be that your DD needs to be encouraged to stand and walk, even just a little bit on her own. I'd use smiley face stickers on a special chart as a reward. I wonder if her leg muscles are strong enough at the moment - weak muscles will hurt when she's using them, so perhaps building up just a bit at a time, or by swimming? My daughter has juvenile arthritis and has had it for five years. She's had muscle pain and muscles going into spasm for the last two years. This pain was written off by the rheumatologist as growing pains and "in her head" - for two years. After the last appointment I decided that we couldn't carry on as we were, so we paid a small fortune to see a physio from great ormond street privately (our GP did the referral) and we now have had it confirmed that she has widespread musculoskeletal pain, due to muscle weakness (less than 50% of what it should be) as well as hypermobility. This was never mentioned by the rheumatologist because I suspect he was just thinking about arthritis not her muscles. Now we have an exercise programme which will strengthen her muscles and will prevent the pain. Finally finding someone who could help us and believed that my DD was in pain and not just making it up, was a massive relief. Sometimes medics do get it wrong. I hope my ramblings help - sorry to go on!