Surgery for DS with Perthes, SO scared!

[JellyBelly10]

MY DS (age 6) is going into hospital on January 13th to have major orthopaedic surgery. He has Perthes disease of his right hip and is having a femoral osteotomy...basically cutting the top of his thigh bone right off and replacing it at an angle and pinning/plating it together. It will mean a week's stay in hospital, 3 months in plaster casts and wheelchair (staying at home, no school) and a long recovery after that re-learning to walk...and all that with no guarantee whatsoever that it will have any positive effect on the eventual outcome of his Perthes... I feel so scared for him and so worried that he is going through such a major surgery so young. Just wanted to put it in writing really! Just REALLY scared for him and worried that this isn't the right thing to do...could cry every time I think about it (and generally do!)

Oh sweetheart . No experience of Perthes, but dd2 had surgery at just 2, and I was petrified - I think its the only way a parent can feel, very normal, even though I'm sure your ds is in safe hands (as my dd was). FWIW, my neice had major spinal surgery aged 6, and coped extremely well - far better than my poor sister, who felt just as you do! There were no guarantees for her either (she has spina bifida) but it had to be done - and there have been no regrets.

Hope you get more useful responses, and wishing you and your ds all the best for the 13th.

Jellybelly - so sorry to read this. It is a huge thing to face.

Have you seen the STEPS website? They have discussion forum where you may find support from parents who have been in the same situation and can offer support. http://www.steps-charity.org.uk/ Here

My dd has had lots of surgery - heart and ortho and I absolutely understand how you feel. The waiting is often worse than the actual experience though so hold on to that. And young children really do bounce back remarkeably well - things we would struggle with they just brush off and get on with it. Try to busy yourself with the practicalities - have you sorted out home tutoring for example?

Oops Here

JellyBelly - I had bilateral osteotomies aged 7, so I know what you are going through.

I didn't have Perthes, but inward rotating femurs, that got worse every year, so surgery was the only option of avoiding a wheelchair for life.

I won't lie - it was painful. I remember waking up in a recovery ward with a nurse telling me I wouldn't be able to sit up (Mums not allowed except at visiting times on wards then), and I also remember a HUGE cage of lights over my legs to dry the plaster out. I was in a spica frame from just below armpits to toes.

After cast was removed I had daily aquatherapy to get legs moving and had to re-learn how to walk (I had never had feet pointing forwards before!). I remember progressing from a walking frsame to crutches to sticks to free walking :)

The only problems I get now are muscular - as the bones were re-set in place but the muscles had grown round them in the old position. I can walk perfectly, and could from a few months after the op.

I believe now that the spica frames are more of a knee brace that also lock the hip position - I am 44 and my experience was a long time ago. However, I would do it again as I can walk and would not be able to without it. My Mum says she agonised over her decision, I am eternally grateful that she gave consent.

Best of luck :)

Thanks for all your replies. Milliways it's really good to hear your personal experience of surgery and the fact that you have no regrets that you had it done. It's really hard making the decision for someone else who is too young to really be involved in the decision at all. The cast he will be in is an A-frame or "broomstick" plaster where the legs (both legs) are in plaster from hip to ankle and are separated by a fixed bar between the knees to keep the legs abducted. We aren't too worried about the logisitics of living with the casts for a few months as he actually already spent 6 weeks in the exact same casts back in October/November without surgery (which we hoped would avoid having to have the surgery but here we are facing it anyway!). I suppose my main fear (apart from the risks of the GA and the fact that he'll be in so much pain afterwards) is that the op may actualy make things worse, which apparently is a risk...since the Perthes was first diagnosed last June he has not been allowed or able to run/jump/play football etc so his life has been really restricted and I feel he is just missing out on his childhood. gibbergabber I think I'm pretty much there with the practicalities, I've contacted the Local Authority about home tutoring and they are currently trying to line someone up in time for the tutoring to start a couple of weeks after surgery. We had already done things like get a ramp and urine bottles and adapted clothing etc when he was in the casts last time...the waiting is hard...just want it to be over!! Thanks for your comments...fingers crossed all will turn out fine in the end...I hope that by the time he enters Year 2 in September he will be able to walk and participate in school life fairly normally and all this will seem like a distant memory!

SOunds like my cast - but it went way above my waist.

I had a trolley that my Mum strapped me to to whizz around on the floor (provided by the hospital). She had to get a neighbour in to turn me over for going to the loo (embarrasing!). Hospital also provided bedpans. They also had to bring my bed downstairs into the lounge as I was too wide (& heavy) to get up & down stairs daily. My mum fixed a mirror on the wall so I could watch telly if I was on my back.

I had a teacher for the weeks I was in hospital, but we didn't do much, and at that age it doen't really matter. Boredom was the main thing when everyone else was at school though (daytime telly was non-exixtent!). My school teacher did visit though.

Once out of plaster I was on my bicycle loads as it was easier than walking, so used to cycle to school & everywhere :)

jellybelly, DS had this operation 4 years ago at 10, with the same recuperation time you face. If we had the time again, we would have made the decision even earlier so rest assured you are doing the right thing. If it helps, DS now plays sport (all sport, including full-contact rugby) every day ? he can even run cross-country and do all-day hikes ? and assures us he never has any pain from his hips whatsoever. Good luck.

Oooh mattelie that sounds promising...was your DS's op for Perthes too? So he's now 14 and doing fine...that's good to know! How soon after the op was he up to any sort of normal activities? ie was he able to walk fairly normally within 6 months of the op? Or was it much longer? When was he able to run? Does he have much of a leg length discrepancy due to the surgery and/or the Perthes? We were told that if the leg length discrepancy ends up being more than 1.5-2cm then DS will need leg lengthening surgery when he's about 12-14....Sorry for so many questions! If he has Perthes, how well did the femur head grow back and is it all grown back now??
So many questions!!

JellyBean, I can't answer many of your queries, but WHY can't your DS go to school in his wheelchair? The school MUST make reasonable adaptations. Even if that means providing 1:1 assistance for him.

Children are amazingly resilient, childrens orthopaedics is incredible as they tolerate things that adults would never cope with.
Where is he having it done?

Children are amazingly resilient, childrens orthopaedics is incredible as they tolerate things that adults would never cope with.
Where is he having it done?

Lougle when DS was put into the plaster-casts and wheelchair for 6 weeks back in October/November to immobilise him, stop further damage to his joint and also to see whether the position of having his hip permanenetly abducted could be tolerated long-term (as that's what the surgery will effectively do on a permanent basis)he went back to school. The school were brilliant and gave him all the support he needed to return to school. There were a few incidents of over-zealous children in the playground pushing him around too roughly or too fast and in fact on two occasions he was tipped (accidently!) out of his wheelchair ! But it was different then as he didn't have any additional pain other than the usual pain caused by his Perthes. But this time, post major surgery, he will be in a lot of pain, the bone (having been completely cut in half and then pinned together) is going to be pretty fragile and apparently it's just advisable to keep them at home for the duration of the casts being on as the care needed while they recover from this pretty major surgery is much greater than just when he was in a wheelchair with the casts on. So the school would be more than happy to have him back I assume, but the few other parents I've met through the Perthes Association (support group) whose children had this surgery at the same hospital we are under (Royal National Orthopaedic Hospital) stayed at home and their LA's provided home tutoring...TO be honest my plan is to see how things go after say 4 weeks of recovery and then perhaps take him to schoola few mornings a week and stay with him (while my other DS is at nursery) just so he isn't totally forgotten about by his friends! I'm assuming the school would be happy with this but will see how things go after the surgery and once the post-surgery pain has lessened.

unfitmother I just cross-posted with you and actually answered your question without even knowing you'd asked it! So it's the Royal National Orthopaedic HOspitala t Stanmore we are at. It's not our local hospital, we were originally at Reading as we live in Berkshire but I did my research and realised that RNOH have lots of experience with Perthes which is quite rare (only about 1 in 20,000 children get it) and as the surgery is so major we decided we wanted it done by someone who is more of a specialist. We are REALLY happy with the RNOH....just wish we could wave a magic wand and make the whole problem go away!!

RNOH is great, I did a six months there doing a course. They certainly know what they're doing and see Perthes

Sorry......
all the time.

Sorry......
all the time.

Hello, just wanted to say my daughter (3 yrs old) is going into hospital for an operation on the 13th too (at GOSH) for a max-fax operation. It is not as major surgery as yours, but I am still worried. Can't bear it but it's all I can think about. Also worried about her going back to pre-school tomorrow and catching something that will mean we would have to postpone the surgery. Aaargh.

4pudding I am worried about my DS catching something and it all getting cancelled too! The wait is long enough without it getting postponed any further! My DS went back to school yesterday and is going today but tomorrow we have to go to the hospital for his pre-op assessment, so although it's a day away from the germs at school I suppose he could catch something there at the hospital anyway!! And I've semi-decided (although not sure how the school will take it) that next week I will keep him at home on Monday, Tuesday and Wednesday to minimise risk of him catching something just before the op. He's going to be off school for 3 months so I can't really see that 3 more days matters! Good luck with your daughter's op, hope all goes well.

My son, now 10, had a femoral osteotomy last spring. It was a 4 month recovery - almost 2 months in a body cast and another 2 months relearning how to walk. I have a blog for him that details this experience. He is now doing fantastic, way better than we had dared to hope. I hope all goes well with your son. Here's his blog's address:
firecrackerflyers.typepad.com/jackinator/

On the right-hand side is a section called 'Looking Back'. If you click on Surgery, that'll give you our hospital stay, and then March, April, May & June detail his recovery.

I also created a blog, called Perthes Pals, for kids with Perthes to connect with each other. Seems there's lots of support groups for the moms but nothing for the kids:
firecrackerflyers.typepad.com/perthes_pals/

Good luck!

?was your DS's op for Perthes too? was he able to walk fairly normally within 6 months of the op? When was he able to run? Does he have much of a leg length discrepancy due to the surgery and/or the Perthes??

Sorry, not able to get online yesterday. To answer your questions, not Perthes but bilateral femoral osteotomies (like milliways had) but the actual operation and recuperation is pretty much the same. Walking stiffly after about 5-6 months, freely by about 8-9 months. Sport after about 1 year, gradually. We had an advantage in that I am an orthopaedic physio so DS got lots of intensive treatment.

No discrepancy in leg length, no, and no pain in hips since he had the metal work removed about 18 months after it was inserted.

Hi JellyBelly10,

I know your post is from a long time ago but I have a 6 year old with Perthes whose case sounds exactly like your sons. He is due to have a femoral / pelvic osteotomy in just over a week and I'm so worried about whether we're doing the right thing?! Like you, I'm worried that we're putting him through major surgery but have been told it may not help or may even make things worse! He's not been in any pain so far and I'm so scared he'll end up in lots of pain afterwards and I'll regret ever having it done. If there's any way you can reply to this and let me know how your son got on and how he is doing many years later I would be so grateful!! It would be great to know the outcome of someone who was in the exact situation I am in now. Or anyone else who has been through this. Thank you x