15 month dd can't stand up

[lenaschildminding]

My 15 month DD could not roll over until 7 months and did not crawl until 13 months and still cannot weight bare.

Her hips, knees and ankles all pop out of joint and if we try to stand her up, her legs just bend in ways they shouldn't.

She was refered in September to physio and I've just got an appmt for December 10th.

Just wondering if any one else has had this problem with their kids?

OMG!

I've just had a call from the hospital regarding DD's xrays.

She has been refered to the Univeristy Hospital in Coventry.

I don't know anything else at this stage, the secretary wanted the doc to phone me but he isn't available until Friday and she wanted to let me know before then as the other hospital will contact me when they get the referal.

Just going to cry...

lena - just had to see what this was about. My cousin has a problem with all of her joints (have forgotten the name of it but can find out for you, I know it's genetic and her Mum was a carrier) which mean that they just pop out under the slightest stress - if it's the same thing then they can do wonders with physio.

She is now a senior scientist in san diego but has to exercise all the time in order to keep the muscles around the joints strong enough to counteract the problem.

She also has coeliac disease but that was nothing to do with the disease (or so we always thought).

ahhh Lena, how scary. It must be horrible when you dont know what is going on!!!!
Fri as in tomorrow?? Hope it all goes ok!

I am assuming she meant Friday, as in tomorrow, but I wasn't really taking much in at the time.

The hardest part was when she said "there is something abnormal on her hip xrays".

Those words were spoken to me just over 7 years ago, only that time is was DS1 with Neuroblastoma.

It can't be that, I know, but it sent shivers down my spine, just the same.

DD has many things in common with DS1.

Born with a heart mumour, constipation since birth, leg pain and hip problems and unexplained spiking temperatures.

The coincidences are frightening. Those words are just rattling around in my head.

I am trying to hold myself together right now so DS2 doesn't pick up on anything, he got very upset when DD was sick last week and started to cry over DS1. I don't want this to affect him. I will obviously have to tell him at some point if DD is going back to hospital, but I will wait until I have something definate to tell him.

ah mate.... cant imagine how it feels for you!!!! Abnormal x-ray does not have to mean anything to sinister though. Let us know how it goes at some point over the weekend! It really is worse when you are dealing with the unknown so once they tell you something more definate at least you have something to work on.
You sure you can not get to have a quick word with the consultant later today? I work in a hospital and more often than not even if the consultant (or reg) are having a full on afternoon they will find the time to call a mum back if they are particularily distressed. Try his secretary again and explain how worried you are.

Sec said I can phone her at any time, but consultants not there.

I know all too well about waiting games, it took 4 months to get a diagnosis for DS1.

I am thinking it may be something like hip dysplasia, that may require surgery.

Funnily enough, I will be relieved if that is the case, whereas other parents would be mortified. But for me, anything is better than Cancer or any other life threatening illness

i was thinking hip displasia..... for what my knowledge is worth!!!! Can the registra talk to you? Good luck!!!!! let us know.

Dam! Sec only works until 4pm, it's an answerphone.

Just have to wait.

Just read this:

Congenital hip dislocation - where the hip is frankly dislocated at birth

Congenital dislocatable hip - where the hip is in place at birth, but dislocates fully when stressed

Congenital subluxatable hip - where the hip is in place, but dislocates partially when stressed

Acetabular dysplasia - where the hip socket is shallow and remains shallow, so that the hip is unstable

Developmental dysplasia (or dislocation) of the hip - a more recent term, to reflect the fact that there are cases that have apparently normal hips at birth, but develop the problem in the first year of life

I had heard of hip dysplasia but didn't know there were different types.

As far as I know nothing was wrong with her hips at birth, they did the usual tests when she was born and at her check ups with the HV.

Got to get dinner on now, need to 'try' to take my mind off this for a while, don't want DS2 picking up on my worries. He's a sensative one, it's not easy hiding things from him, he knows his mum too well!

I am sure it was something like that..since the physio also noticed something up with her hips, and one leg shorter than the other....it is understandable that you would worry, but it doesn't sound too ominous IMO.

Just wanted to say i have been following but not posting. My DD (who is now 5) could not weight bear or walk/stand till she was 2. She sounds similar to your little one, with problems with bowels and constipation (doc said 2 werent linked?!)

Hugs to you and hope its better news than you hope

she'll also spike a temp of 40 without a reason. God they make you worry

(((lena))) totally understand the worrying. Not a lot to add, really (my first thought was hip dysplasia, too) but hope you get reassuring news fast.

My dd, as I said, is nowhere near walking or even standing, but no constipation or bowel problems. She does have a floppy larynx, though - am wondering if she has other parts slow to 'harden' too, now: probably very unscientific thinking, but

Hugs, and good luck keeping ds2 chilled - I know how it is to have a sensitive child who worries about the other one's health, even without the heartbreaking circumstances of past experience. xxx

lisa - is your DD absolutely fine now with her walking and motor skills?

Elibean - my DD also had a floppy larynx, which she outgrew at about 12 months!

HCTG, mine is still under hospital team at 14 months - due a review soon, but they reckoned it would get better around 18 months. She's still on reflux meds and very squeaky at night

she walks fine now but throws one leg out when she runs, and falls a little more often than her friends, but does ok.
She still has some problems with her bowels and get terrible "growing pains". But yeah she's pretty good now

Eli - sounds awful - we were told my DD had it very mildly and it could have been a lot worse. I'm sure it will improve lots soon.

Lisa - We were told our DD might be slightly "clumsy" when she is older. Sounds like your DD has caught up wonderfully well though. I don't mind as long as my DD can walk!

she is slightly clumsy, normally when she is rushing but dh is dyspractix (sp??) so not too worried. She started ballet this week, hopefully that will help too
Was/Is your LO late walking? My DD1 never crawled, she shuffled everywhere on her bum .

Please let us know how it goes tomorrow. One of the families here lost their little boy to cancer just before Christmas, its so heart breaking, your doign well to hold it together hun [hugs]

My DD is nearly 15 months and is yet to stand properly or pull up - she has had no interest in standing. She is starting to bear weight on her feet better now and has crawled since 12-13 months.We have been told that she has slightly low muscle tone (she was born at 36 weeks) but her movements are normal, she is just taking a while to do things. I don't worry TOO much about it, except when I see 12 month old babies everywhere, walking!!!

Just spoken with Mr Sharif, he has told me that dd has Congenital dislocation of the hip, also known as Developmental Dislaocation of the Hip, or DDH

Rather than explain it, i've found this link:

www.drhull.com/EncyMaster/H/hip_dysplasia.html

He has assured me that Mr Dassey is the most qualified and best surgeon in this field in th UK and he will look after us.

At last, I know what's wrong but hell, two completely dislocated hips! No wonder she can't stand up or walk!

It sounds promising that they have caught it before 18 months, from reading that website. And its also good that they have found a treatable reason for her not standing. Hope you get an appointment quickly to discuss everything!

That's good news.... kind of! At least you have something to work on now!!! Good luck!

hctg, it would be promising that they caught it before 18 months IF I COULD ACTUALLY GET SOMEONE TO TREAT HER!

I'm fuming. Since Friday I have been chasing people, only to discover yesterday thet the referal was 'lost'.

Mr S's secretary has been great, she instantly faxed through the referal and rang me back, saying that Mr G's secretary would phone me that afternoon. That was yesterday.

I had to phone again today, as I still hadn't heard anything to be told she has an outpatients clinic appointment for MARCH!

By this time, she will be 18 months.

She is increasingly distressed and frustrated trying to stand up, she is waking in the night, she can't sit in her highchair anymore because its uncomfortable, she gets upset in her carseat, I can't go shopping now because she can't sit in a trolley and they want to make her wait until March.

HCTG - Has your DD had hip xrays?