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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Not aibu but need the extra views as I'm beside myself...

40 replies

Kidworries · 05/07/2019 19:23

Hi all
We are awaiting an MRI for my son. He has suspected Perthes disease and i am beside myself with worry. I have done a bit of research and due to his age (6) he is more likely to need an operation depending how bad it is. That and it's taken about 9 months to get a referral for them to even mention an MRI.

Anyone have any experience with Perthes disease as i read it's not very common about 1 in every 9000 babies and mostly boys.

Tia

OP posts:
walkingtheplank · 05/07/2019 19:44

Hi @Kidworries.

My son was diagnosed with Perthes when he was 5. We were fortunate my husband has health insurance through work so we didn't have to wait 7-8 months to see the NHS consultant.

There are different approaches to treating Perthes. We were fortunate that our doctor took an holistic approach and saw the boy both as a body but also a mind. Research is inconclusive as to the best approach. It not certain that the surgical approach improves outcomes. Therefore we agreed to do nothing surgical (he thought having him in a wheelchair for no guaranteed gain was wrong) but to restrict his activity - no running, jumping etc. The school had to insure that everyone who worked with my son knew this - which wasn't always followed. 6-monthly x-rays confirmed that the femoral head went through the fragmentation stage (painful as a mum to see) and then re-ossified. It took a few years but he is back to 'normal' now. The 2 hips aren't exactly the same, but he walks normally and plays a lot of sport now aged almost 11. You really would never know although he will probably have arthritis in the hip when he's middle aged but by then hopefully technology will help.

I found the Perthes Association helpful: www.perthes.org.uk
Actually their Facebook page was better and more supportive: www.facebook.com/perthes.org.uk/
I'd really recommend taking a look at it.

6 years old is still young to have Perthes so surgical intervention may not be necessary.

I was 'beside myself' too. It's rotten seeing you baby like that and thinking what they might have to go through. Good luck!

Original poster
Kidworries · 05/07/2019 19:50

Oh my goodness thank you so much for your message! He's very sensitive and the idea of an op would scare him endlessly regardless as to how we approached it.

Can i ask how you treated it? Did it just sort itself out in the end?he has a really noticeable limp and drags his foot. Wakes at night with pain

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MrMakersFartyParty · 05/07/2019 19:59

My mum had this in 1964, she was about 3 and was hospitalised for 2 years as that's what they did back then, think she had the bad leg in a cast.
Anyway she had no op, nothing, and is now 60 and has had no issues with it.

Original poster
Kidworries · 05/07/2019 20:07

Thank you Mr makers

I need to stop googling as i have just seen the broomstick casts! And he would be heartbroken if he can't run around as hes quote active. He doesn't have much pain though only at night for some reason

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walkingtheplank · 05/07/2019 20:27

We literally treated it by doing nothing other than stopping activity that put sharp pressure on that leg - easier said than done with an active boy.

My son did have a limp - that's why we went to the GP originally - but he wasn't in pain so perhaps he just had a milder version.
I think generally doctors are tending towards non-invasive treatment these days. I thin the broomstick casts are quite rare now, especially for a 6 year old.

Just remembered there is a support page too for the Perthes Association: www.facebook.com/groups/PerthesSupport/

EKGEMS · 05/07/2019 20:28

My son was in double straight legged casts for a while after orthopedic surgery (for cp not the disease you mention) but he sure adapted well and did fine! Kids are really amazing. Couldn't crawl or walk so he figured out rolling was just as good

user1471514872 · 05/07/2019 20:38

My nephew had it. I think he was 6 or 7 when he was diagnosed. He had surgery and intensive therapy before and after. He was in a full body cast for some weeks after the surgery but now at 12 he's fine albeit with a slight limp.
He was living in Israel at the time so treatment may be different there. He did have the benefit of a brilliant rehab hospital where he was an inpatient and then outpatient after surgery.
He was also diagnosed after having severe pain.

Original poster
Kidworries · 05/07/2019 20:39

Thank you everyone

OP posts:
LoisEinhorn · 05/07/2019 20:53

My son had it and my nephew. He might not need an op, my son was about 4 and came out of his brace at 6.
He had an Atlanta brace, with the bar across, and it never stopped him doing anything. He could run around like any other child. I heard about a child who came in with a broken arm from falling out of a tree. Kids adapt and find ways of carrying on with what they enjoy.
He had regular xrays and once the ball of the hip grew back he was able to come out of his brace.
I'm talking about 20 odd years ago but we got DLA for him and a blue badge because although he could get around he couldn't walk long distances.
The only lasting effect he has is that one leg is very slightly shorter than the other.

TiggeryBear · 05/07/2019 21:16

My brother was diagnosed as a kid (aged 5?) Our parents decided to go down the non-surgical route so my brother used a wheelchair to get around. His primary school were very supportive & were keen to involve him as much as possible in sports / p.e. as he wasn't allowed to participate in any "weightbearing" activities (swimming & cycling were permitted & encouraged). He was by no means confined to the wheelchair, in that no particular special arrangements needed to be made regarding access in & around the school as he was able to walk short distances (to the toilets, school hall for assembly etc) as I recall he underwent regular x-rays (I think every 6-12 months?) To check the progress but otherwise no real "treatment".
He was cleared to take up sports again when he begun secondary school.
He's now in his mid-twenties & doesn't seem to be suffering any ill effects.

Original poster
Kidworries · 05/07/2019 21:40

Thank you everyone I'm hoping we go down the no surgery route

OP posts:
Original poster
Kidworries · 06/07/2019 19:53

I can't believe it i just checked the referral letter they keep referring to his left leg. Ilbut it's his right leg! Good thing i checked otherwise they would have scanned the wrong leg! Wish us luck for tomorrow!

OP posts:
LoisEinhorn · 08/07/2019 12:42

How did you get on?

Toddlerteaplease · 08/07/2019 12:56

We occasionally put children on traction for a couple of weeks. Taking the pressure off can improve the shape of the femoral head.

Original poster
Kidworries · 08/07/2019 16:08

Hi he had his MRI he was great was done in 20 minutes. Been calling all day to make an appointment with the consultant but shock horror no one answers the phone! If it was put in traction would that be a cast?

OP posts:
LoisEinhorn · 08/07/2019 18:01

A cast is plaster isnt it?. When my son was first diagnosed he spent a week on traction to release the muscles that had gone into spasm. Then he went into his brace.

Original poster
Kidworries · 08/07/2019 18:50

Thank you Lois. What exactly is traction? Would he have to stay in hospital for this?

OP posts:
Anna713 · 08/07/2019 18:59

Two of my three sons had perthes disease when they were five. Both were in traction for a few days and then wore a brace. This is over 25 years ago now and although my youngest had quite a severe version they are both absolutely fine now. No limp or pain. Both play football and are very sporty. I understand how worrying this is for you and I wish your son a speedy recovery. Although very worrying at the time if you saw my sons now, both over 6 foot and the picture of health I am sure it would reassure you.

Original poster
Kidworries · 08/07/2019 19:26

Thank you anna it really does! I hope they just answer the phone tomorrow as if we can get the hard parts done in the summer holidays it would be great!

OP posts:
Original poster
Kidworries · 08/07/2019 21:26

Will have to keep calling tomorrow and hope their secretary will finally answer the phone!

OP posts:
LoisEinhorn · 09/07/2019 21:39

Traction is like this. It's just a weight to pull the leg down. Held on with bandages so nothing invasive.

Not aibu but need the extra views as I'm beside myself...
checkmaid · 09/07/2019 21:51

I spent a couple of weeks on traction for a similar issue (significant lump, dragging my leg) when I was 4yo. I've not had any problems since - couldn't even tell you which side was the problem!

Original poster
Kidworries · 10/07/2019 09:35

Thanks guys. Finally got an appointment! The number he gave me was for his secretary who left 2 months ago...hence why no one was answering

OP posts:
IncrediblySadToo · 10/07/2019 09:45

I’m glad you got an appointment - when is it? Have they suggested anything you can do in the meantime?

Lots of very reassuring stories on here, im sure in further years you’ll be posting one too🌷

Original poster
Kidworries · 10/07/2019 09:47

Thank you. It's on Monday at the fracture clinic... I think that's the only day he is at this hospital as he does private work too. Not happy he gave me the number for his secretary who left though when he said we have to call as soon as the MRI had been completed. But there we go... If you're not private you're not a priority i think.

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