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3 year old diagnosed yesterday ;(
GuestPostOctober 2, 2013, 11:22
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Normal topic3 year old diagnosed yesterday ;(

Hi, im new to all this so bere with me!
We've just spent 3 days in hospital after i noticed my daughter walking very strangely but with a temperature. We were admitted quite quickly as the concern was infection of one of the joints in her leg. Bloods were taken, which showed her inflammatory markers were up (high 20's) so an xray was ordered. After the x rays showed an abnormality in her left hip an MRI was next on the agenda, luckily she was a very good girl and didnt need sedation for this as she laid like a statue, which i was very thankful for. We waited over night for the results, her temp kept peeking 39 every 12 hours! Eventually we had the diagnosis of Perthes disease, although a cyst or sack of fluid on the base of her spine was also detected! We have been allowed home, but i think they wouldve liked to have kept her in for observation, but having 3 other children at home, i was needed. Thankfully ive only heard her complain a couple of times regarding pain in her leg. The next available appointment to see the specialist is not until next Tue (11/10)
After reading a few threads on here, i suppose im quite lucky i only have to wait a week, but im beside myself as i really dont know what the specialist is going to say or the next course of action. I know her being 3 is a good thing, but i cant believe my princess has this any advice would be greatly appreciated xx

GuestPostAugust 23, 2014, 10:41
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Normal topicRe: 3 year old diagnosed yesterday ;(

Hello Samantha. I have just registered on this site as my little girl was diagnosed with Perthes in May. So hard to accept as a mummy. She is partial weight bearing at the moment and has been doing so for 3 months. It is so hard getting her to do this - she is four and a half!!! We have two boys also and I feel like all my time is given to Olivia. Frightened what the future holds for her. She starts school this September. How is your little one doing?

GuestPostSeptember 6, 2014, 17:08
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Normal topicRe: 3 year old diagnosed yesterday ;(

Hi, I two gave just joined this site, my 4 and a half year old son was diagnosed just over a week ago so we are really still in shock.
Is your daughter using crutches or a walking frame to assist her?.
We are waiting for a further X-ray in 3 months time when we will hopefully find out what stage he is at and how severe it is, so worried for what the future holds for him

GuestPostSeptember 6, 2014, 21:11
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Normal topicRe: 3 year old diagnosed yesterday ;(

Hi Lorna and others ... We are 4 months in to this perthes thing now .. We've had 2 X-ray follow up appointments...Our son aged 4.5 has it in both hips, worse on the left, starting school on Monday! Also worried about the future but trying hard to live each day and if that's a happy and pain free one then we are winning! He currently uses a wheelchair to get around longer distances which we organised as he simply couldn't manage nursery without; we use it to slow him down as he starts school; it's very hard telling him to avoid impact , that's the cruel thing about it -he should be free to run as much as he likes - which was most of the day before this and now we have to restrict him... :-(( I think I must look so odd telling him to avoid jumping down steps or out of the car ... We use a burley 3 wheeler to get about at weekends so we can still do all the things we enjoy as a family. He swims 3x a week and cycles. It's a totally rubbish thing to go through but wouldn't change him for the world and it's part of who he is now. Just hoping to avoid surgery ... Happy to chat to anyone as feel it's pretty isolating once dealing with this after diagnosis ... So many worries and practical issues ... And no 'right' thing to do!

GuestPostSeptember 8, 2014, 19:09
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Normal topicRe: 3 year old diagnosed yesterday ;(

Thanks for your reply, has your son got worse over the 4 month period or was it this severe when first diagnosed?. My son started school last week and seems to be adjusting so far but that doesn't stop me worrying all the time!
It's so hard to restrict him running and bouncing around like a normal 4 year old!

GuestPostSeptember 15, 2014, 18:52
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Normal topicRe: 3 year old diagnosed yesterday ;(

Hiya sorry for slow reply I'm hopeless with all these passwords! He started off with a very intermittent mild limp which was hardly noticeable. Then he jumped off a train in a park like any normal 4 yr old and he got worse over next 24 hrs and that's when we took him for X-rays. His left hip has got worse over time since his diagnosis although his right hip is currently stable. He has good days mostly but because he's so active he's at risk of more damage so the wheelchair at school is very useful . Also we found that he was crawling a lot at nursery to avoid putting weight on his left leg so the chair helps this. How are you managing to limit your lad ? It's so very difficult.... Our boy still leaps off the sofa forwards onto his hands and then knees pretending to be a hippo...We don't go to park anymore or soft play as this is too tempting for him..we just swim and cycle a lot to keep him active and do some stretches... The severity of the condition depends on how much of the femoral head is involved... So far we are mild on the right and more severe on the left. It's seems like it's a very long journey until it gets better ... Years...and each X-ray is terrifying as if it's worse we may need op. But he's loving school so far :-))

GuestPostSeptember 15, 2014, 19:53
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Normal topicRe: 3 year old diagnosed yesterday ;(

Nice to hear back from u, we are doing ok thanks, have had to stop him doing football and have swapped this for swimming but forget how much of an impact just running over the park could have on him, especially when he has some good days and his limp is less noticeable. We have another X-ray in November so I'm hoping to find out more then, what stage he is at and how severe his case is.
Trying to read up as much as I can so I'm more prepared on what to expect over the next few years... He's doing really well at school although is very tired by the time he gets home and it seems to get worse when tired x

GuestPostSeptember 24, 2014, 21:50
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Hi my 5 year old son was diagnosed with perthes disease when he was 4 but was thought to of had it from a very young age but we never knew as he never complained of any pain and to us he walked fine anyhow we have not had much information on perthes disease, On his last xray in June we was told that his hip looks like it had started to grow back and what I would like to know is can it break back down again once it has started to grow as he seems to be limping more today and has said it hurts does anyone have any information on this as really can't find anything anywhere that answers my question very kind regards Alana x

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