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Original poster

Anyone know anything about Perthes?

27 replies

pinkchampagne · 07/03/2007 20:29

I am posting on behalf of my friend Tessiebear, who cannot get online atm.
She has had an awful few days of hospital trips & worry with her DS2, who woke up Saturday morning (after being poorly with a bad D&V bug) in a lot of pain, saying he couldn't stand on one of his legs.
TB rang the doctor on call who immediately advised her to take him to be checked out at hospital, which she did.
Anyway, after a very stressful weekend of hospital trips involving countless blood tests & scans, she has been told there is a possibility her DS is suffering from something called Perthes, which is basically where the hip & the top of the leg don't knit together properly.
She is out of her mind with worry as she knows little about this condition, and she is having to take her poor little chap back for yet more blood tests next Monday.
He is feeling a bit better now, but she has been told to keep him as still as possible, which is proving pretty difficult as you can imagine!
She has asked me if I can start a thread on here for her, to see if anyone has any experience of this condition, as the consultant hasn't given her an awful lot of info yet & she is understandably pretty worried.

OP posts:
Original poster
pinkchampagne · 07/03/2007 20:38

bump

OP posts:
Original poster
pinkchampagne · 07/03/2007 21:48

Anyone??

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Saggarmakersbottomknocker · 07/03/2007 22:02

Bumping this for you pinkchampagne. Have no experience of Perthes (although dd has leg and hip issues). I assume they have excluded the possibility of irritable hip? It's basically soreness and pain in the hip after a viral infection.

Original poster
pinkchampagne · 07/03/2007 22:16

Thanks, SMBK. Not sure if irritable hip has been mentioned, but I know that he has had lots of blood tests & something has shown up in his bloods.
They also did a scan which indicated he had fluid around his hip.

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imaginaryfriend · 07/03/2007 22:30

pc, dd had this about a year ago when she was nearly 4.

It's called Perthes Syndrome and means that the tissues between the rolling hip bone and the hip cavity don't renew themselves so that, in effect, the hip bone begins to grate on the cavity.

Dd woke up one morning, got out of bed and fell over. Unlike tessie's ds she had no pain which I discovered was a bad rather than a good sign because pain is generally associated with other less worrying things like post viral irritable hip. I took her to the GP because she literally couldn't walk, she started crawling in fact or trying to drag her leg along behind her. The GP totally freaked me out saying it might be something neurological and we were rushed to A&E. They did x-rays and various neuro tests and thought neurologically she was fine but she did have fluid on her hip. They drained the fluid and we went for several follow-ups but it seemed to resolve itself. If it hadn't they would have put in some metal pins which they leave for about 6 months then remove because the problem does tend to rectify itself.

It's apparently most common in boys between the ages of 5 - 7 but obviously as dd had it it falls outside those boundaries.

Tell her not to worry. The very worst case scenario is the hip pin op. which is relatively minor. And there are no known long-term problems from the condition.

Having said that I fully sympathise with her as I was worried totally stupid by this at the time.

If she'd like to email me, that's totally fine. and wish her lots of luck.

HTH

cat64 · 07/03/2007 22:41

This reply has been deleted

Message withdrawn

Original poster
pinkchampagne · 07/03/2007 22:41

Thanks a lot for that info, Imaginaryfriend. I will pass it onto Tessiebear.
How is your DD now?

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Original poster
pinkchampagne · 07/03/2007 22:45

Thanks, cat64. Tessiebear was lead to believe it was quite rare, so interesting that you have seen it 3 times!
She was told there is a 1 in 10 chance that this is what her DS has.

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imaginaryfriend · 07/03/2007 22:45

pc, she's totally better. In fact she's better than she ever was. She used to be a very slow walker, slow to climb etc. and I now wonder if she didn't always have a little weakness in that leg. Because once she had the treatments and therapy she was able to move around much better and now she's like a little monkey, climbs everything in sight, leaps and jumps all over the place.

imaginaryfriend · 07/03/2007 22:46

pc, I was also told it was rare. The consultant who suggested it in A&E was poo-poohed by his colleagues at first!

Original poster
pinkchampagne · 07/03/2007 22:55

Blimey, really??!

Really good news that your DD is doing so well now, IF, that's going to be very reassuring for Tess to hear.

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imaginaryfriend · 08/03/2007 12:02

pc, she's truly much more physically able than she ever had been before. It was like a new lease of life. It took a while though, it wasn't like she had the treatment and suddenly sprang from the floor, she went back and forth for about 6 months, then she did suddenly improve.

Original poster
pinkchampagne · 08/03/2007 18:29

That's really great to hear, IF.

I have spoken to Tessiebear today, and have read out your replies to her. She is feeling a little better about it all now.
Thanks.

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imaginaryfriend · 08/03/2007 20:18

I'm glad to help, pc, I was very worried at the time and having a child who couldn't walk around was very difficult, so I feel for tessie. Has her ds had it definitely confirmed? How is he doing? I'd love it if you kept me posted ...

Original poster
pinkchampagne · 08/03/2007 22:55

No her Ds hasn't been definitely confirmed yet, IF, but his blood results showed something & she feels the symptoms of Perthes fit her DS perfectly.
He had a similar episode when he was 3 apparantly (he's 6 now), so she is thinking there is a good chance he is suffering with the condition.
He is back in hospital on Monday for more blood tests.

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imaginaryfriend · 09/03/2007 10:25

wish her luck, pc, and do keep me posted?

Original poster
pinkchampagne · 09/03/2007 12:43

Will do, IF, thanks for posting about your DD.

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Original poster
pinkchampagne · 09/03/2007 18:14

TB has just rang me & asked if your DD had to have an op of any kind, IF.

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imaginaryfriend · 09/03/2007 20:37

No she didn't but they told me she might have to. I think it's to put some metal pins into the hip which stay for about 6 months (I'm not sure I'm remembering that totally correctly) then get removed. She got better with the physical therapy and she had some anti-inflammatory medication to get the fluid off her hip. Is tessie worried her ds will need the op? How's he doing? Any change at all?

Original poster
pinkchampagne · 09/03/2007 22:15

I think Tessie is worried about the possibility of her DS having the op & being in traction for a period of time following this.
Tessie's DS is doing ok atm. She claims he is much better & frustrated with not being able to be as mobile as he would like atm!
She returns to hospital with him on Monday for more bloodtests & scans.

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imaginaryfriend · 10/03/2007 13:40

I hope he'll be ok. Let me know how he gets on on Monday?

Original poster
pinkchampagne · 10/03/2007 15:11

Will do, IF, thanks.

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izzybiz · 10/03/2007 18:32

I was in hospital with perthes as a child.
I remember having awful pain to the point that i couldnt walk, i was kept in on traction for a week to drain the fluid.
I havent had any trouble since, hope your friends Ds is better soon, it really does hurt.

Original poster
pinkchampagne · 10/03/2007 18:48

That sounds pretty horrible, Izzybiz. I am glad you no longer have any trouble with it.

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imaginaryfriend · 13/03/2007 11:00

How did it go yesterday pc?