TO RACH GLEESON!!

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  1. bunny_hops

    bunny_hops Violet is shrinking

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    ive only been back in minis a few hours, i've just had a quick look back in your diary.

    My son has Perthes disease. I'm a Perthes expert, what stage are you at with it?

    My son had a an Osteotomy operation, having another op in 4 weeks...

    Louise
     
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  3. bunny_hops

    bunny_hops Violet is shrinking

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    Exante TS was using Xenical and eating low fat and low cal. Exante baby!!!
    To give you an idea of what happened..

    When my son was in reception, he started to limp on his right leg, he had pain in the lower part of his leg, never the hip. The pain and limping was every day, some days worse than others.

    The doctors put it down to growing pains, and playing and being a child! This went one for over a year. His gp sent him for an x ray of his ankle, showed nothing.

    12 months down the line,i quite literally went mad!! i demanded that he saw a orthopaedic doctor! I eventually got my own way, and went to a childrens hospital. The doctor examined my son for 5 mins sent him for xrays of the hip straight away, we came back and he was diagnosed with Perthes. That day was a huge relief to find out there was something wrong, but my world came tumbling down at the same time.

    He was 7 when he was diagnosed and his hip was in a bad way, he was the later age where things can be not so good.

    The doctor said my son needed immediate treatment.we were sent to a specialist orthopaedic hospital (some fantastic surgeons there, people were coming world wide to this hospital so i was pleased he was going there)

    3 weeks after diagnosis, he spent 2 weeks constantly in slings and springs, his legs were raised up off the bed and kept apart this was 24 hours a day, he came out slings and springs for intensive hydrotherapy twice a day. he stayed in the hospital for 2 weeks. (my mum stayed with him overnights as i have another child)

    He was then sent for a arthrogram. (a dye is injected into the joint space under general anaesthetic,the joint is pulled and moved under a special x ray to get very clear pictures of the joint)
    My son was so scared and i was in pieces he was begging me to go home, he had gas to calm him (my mum had to pin him down, this was in the anaesthetic room, i couldn't see this happen)

    after that the doctors said he would need an osteotomy (he was lucky he was diagnosed when he was otherwise he would need external fixator)

    the osteotomy involved, cutting a piece of bone, like a cheese wedge out of the femur, turning it round and pushing the femoral head into the socket, then placing pins and plates in the bone. he had that done in 2009.
    he was in hospital a week. he had an epidural and spinal block so he wouldnt feel pain after the op.he was non weight bearing for 8 weeks, had a wheelchair and childrens walking frame. he hopped on one leg,or i carried him. he slept down stairs in a bed as he couldnt get upstairs.

    he was off school for about 7 months, and had a daily tutor. he had weekly hydrotherapy and very intensive physio.

    i had to bed bath him, dress him etc.. he had a commode and bed pan..

    after 8 weeks non weight bearing he had to take 3 steps a day with his frame, and then non weight bear the rest, the steps were built up over the weeks...he then went to crutches, but still hopping a lot.

    it does turn your whole upside down!

    he has shortening of the leg, from where they took bone out and twisting so he has to wear a built up shoe. he limps and has pain, aches etc. he uses crutches for long distances can walk without for short distances, anything over 15mins walk and hes knackered and starts to ache.

    he's never played a game of football, he cant climb,run...so much he can't do. he cant get in and out the bath by himself.

    he is going back into hospital in 4 weeks time, to have a arthrogram, and to have the pins and plates took out. (they can't leave it in too long as the bones grows over it and can cause problems)

    i wont know whats to happen until after that..what i do know is that osteotomy he had done in 2009 will be re done again, so another 2 years of non weight bearing, physio etc etc, all what we've been through will have to go through that again.

    i was so glad he didnt have to have hip spicas though. have you been in touch with the perthes association? theyre the only association in the world to help..

    Welcome to the Perthes Association — Perthes Association website
     
  4. bunny_hops

    bunny_hops Violet is shrinking

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    I know what you're going through, and it's hard. If you want to ask anything to me, or how my son dealt with things, feel free.

    One of the hardest things i've ever had to do was to look away from my son.. he was on the hospital bed,scared, crying begging me to take him home, my instincts were telling me to protect him, to take him home and make his tears go away, to fight those urges and to be cruel to be kind took some doing... you have to be cruel to be kind, you will get through it!
     
  5. Rachgleeson

    Rachgleeson Gold Member

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    omg, i had tears in my eyes reading that, i am so sorry for what your son has been through and you. I know how hard it is watching a child in pain!! I only heard of this disease early last year when Ruth was diagnosed. She started with the limping and the pain in the knee, my doctor suspected Perthes straight away and sent her for an xray. The last xray she had which was thursday is unbelievable, most of the ball has dissolved now ( i am no good for medical terms) and her hip is coming out of its socket, it was coming out in the one she had done in november last year, and is now ten times worse. One of her legs is longer than the other, but still the consultant will do nothing, he just said to get a heel for her show to even it all out!! I had a doctor in America look at the xrays and he will be looking at the latest one shortly, he was very concerned because of her age, and that there was what he considered whole head involvement, with the hip becoming displaced!! I find it so upsetting and also Ruth is getting very frustrated and angry too which i think is associated with the pains she gets, some nights she would be rolling around the bed in pain. Breaks my heart!! I cant believe all your son has been through, cant imagine how it must feel to have watched him go through what he is and what he still has to come!! I dont know what the future holds for Ruth, but i have now got her referred to the childrens hospital in Dublin, hoping they take us more seriously!! I felt so alone with this when she was first diagnosed as no one knew anything about Perthes!! I have made some great friends on facebook who have experienced Perthes one way or another!! I have been warned by some of these friends that she could need the osteotomy, as her hip is so bad, if they could see this why couldnt a doctor!! I have been told she isnt to run, hop, jump etc, i just dont know how you stop a 5 year old from doing these things!!

    I can only hope Ruth doesnt have to go through what your son has had to endure, how has he coped with all this going on? he must also get angry at times!! As must you, frustrating that you cant do anything as such, only give him the love and support he needs and the kisses and cuddles when needed! I was in touch with the perthes association asking if they knew of any specialist here, but they had no list and said they had heard stories from Ireland like mine and they had to go to london or paris to get treatment!! Thank you so much for posting this, its always good to talk to someone who knows what my family are going through!!
     
  6. Kes

    Kes Gold Member

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    my god,
    my heart goes out to both of you, and i have tear streaming down my face... im not a mother, so i have no idea what its like to have a bond with a child as close as you have, but it breaks my heart to hear what you are both going through...

    im always here (although i know nothing about it,) if you ever need help or support. :)

    im so glad you both found each other
     
  7. bunny_hops

    bunny_hops Violet is shrinking

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    :cry::cry:

    Thanks Kes..!.. gawd, you've got me blubbing now lol... the way i look at it is, when it all started i was convinced he had bone cancer, and to find out it wasnt, was a wait of my shoulders.
    When he was in hospital,on the childrens ward there were kids who had cancer etc and even though my son was in pain, i wasn't going to loose him to that, even though being in the anaesthetic i always say goodbye likes it's the last time as thats how that room makes you feel..

    I am truly lucky!
     
  8. bunny_hops

    bunny_hops Violet is shrinking

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    Exante TS was using Xenical and eating low fat and low cal. Exante baby!!!

    Remember that the femoral head (the ball) it's still there and hasn't gone,it's just deflated.. that's what they mean by involvement..the head coming out of the socket, is a problem and thats where the ostetomy helps.

    The idea is, when the femoral head grows back, to function properly in the joint it has to grow back round, and it wont do that if it's coming out of the socket, the pins and plates force it together, it's all very unnatural positioning but it works..

    Don't be afraid of the operation, i know it's easier said than done, but it's the way forward. From what you have told me, i think your daughter is going to need that operation. Is she having any physio or hydrotherapy? Have they talked to you about slings and springs or hip spica casts?

    Sometimes they don't do the operation but go for casts instead. It may be a good idea to look up the hip spica casts and get familar with them, because if they go down that route it wont be such a shock plus you'll have ideas of how to adapt things to suit the casts.

    Now that you have been referred to a childrens hospital you may get action. Different areas do treat differently. With regards to the leg shortening, if she does have an op it will shorten a bit more.
    My son has to walk on tip toes on his right food without shoes on. He was very unbalanced before he got the shoes built up and it made pain worse and being lopsided. I spoke with his surgeon and physiotherapist and told them he needed help with that, they referred me to orthoptics and they said they could build up his shoes or they could make him a pair from scratch and thats what he has.
    He still limps with them, but at least his hips are level when standing.

    It is hard to restrict kids from activities, swimming is excellent for Perthes! My son swims weekly, he is being taught properly and can swim very well, my son gets a lot of relief from being weightless in the water.

    My lad does get angry, frustrated, scared some days are worse than others, but he has learnt to live through that and kids are so adaptable that it effects us as parents more in some ways.

    Wheat bags are great for aches and pains, you heat them in the microwave. My son uses them and it does help, especially in cold months! You can get them from Wilkinsons, The Works..i don't know if you have those where you are.

    From where we are now, he will require another Osteotomy and then the chances of a hip replacement early in life is quite high and he will develop Osteoarthritis early.
    I've not had his pre op come through yet, but his bed is booked in 23 days time for the removal of the plates, i guess we'll know more then.

    You do know Pixie Lott's brother has Perthes :)
     
  9. Rachgleeson

    Rachgleeson Gold Member

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    Thank you Kes your kind words mean alot :D

    No physio or hydrotherapy treatment, no mention of casts or anything else along them lines, they have done absolutely nothing, The consultant didnt even say where to get the heel from for her shoes or anything, he just doesnt seem that interested at all, he doesnt even seem interested when we are asking him questions, feels like he is brushing us off all the time. I know alot of the doctors like to just wait and see but i am concerned that could cause more trouble for Ruth in the long run!! Like your son she walks on her tip toes, has done for a while now, i am worried this is causing problems with her back as a couple of times she has said to me her back is sore!! Does your son ever complain his back is sore!! She normally has P.E in school today and i feel terrible that she has to sit out :( I just wanted everything sorted now before its too late, i dont want her hating me for not getting her the treatment she needs, and i dont want her to be in pain any longer than she has to be!! Like you i have been in the hospital, it was with my son as a baby he also had many operations for something entirely different, but the children we saw there it would break your heart to see what they are going through, we were near the buns unit one year, i could of cried when i saw some of the children there and then you would see young cancer patients walking around and you would realise how lucky we are really, although our children are suffering its not life threatening. but it is hard to watch them go under the anasthetic - very upsetting!! I have tried the wheat bags on Ruth but she hates them doesnt like the heat of them on her, so on bad nights i lie next to her after giving her the medicine and rub her leg and we talk untill the pain subsides, if i could take her pain i would in a second!!
     
  10. Rachgleeson

    Rachgleeson Gold Member

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    i did an online perthes chat with dr standard from america last night, he recommends ruth have treatment as soon as possible, this is what he said :-


    Dr. Standard: rachgleeson- a shoelift is not needed- the leg length discrepancy is coming mainly from the contracture of her hip joint- aggressive treatment for hip containment is needed- I would recommend very aggressive treatment to maintain a viable shaped femoral head with soft tissue releases and external fixation application
    Dr. Standard: Perthes is a progressive disease- although things do not change overnight, treatment needs to be instituted soon- I would begin with aggressive range of motion exercises and find a new doctor

    I am really hoping the re-referral gets sorted soon!!
     
  11. bunny_hops

    bunny_hops Violet is shrinking

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    Exante TS was using Xenical and eating low fat and low cal. Exante baby!!!
    I would agree that the osteotomy is needed to keep the femoral head in the scocket, otherwise it won't grow back round, it needs to be round for range of movement. When they do a osteotomy a piece of bone is took out, almost like a cheese wedge shape, that causes leg shortening, usually a few cms, and it can be sorted with a built up shoe, it really makes all the difference.

    The soft tissue he's talking about is the thin muscle in the groin area.. they were going to cut my sons to give a better range of movement, however i decided against that, and went with the agressive physio instead.

    He is very stiff in that are and the range of movement is limited, but that has a lot to do with the hip being trapped in the joint with the pins and plates.. its a bit of a vicious circle, the thing they do to fix the proble, causes a load of others...and you do find yourself back at square one again..

    I just can't believe she's never had physio! I really hope you get the referral soon.
    My sons pre op came through, the end of the month... :sad0071:
     
  12. Rachgleeson

    Rachgleeson Gold Member

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    I am so glad the pre-op came through for your son, so will the op its self be next month sometime? What is it he is having done this time?

    Ruths consultant told us to do some exercises with her, but too be honest i am nervous about doing it as he has never explained any of it properly to us, i am afraid i would hurt her or make things worse. I would definitely be happier if she was seen properly for physio!! No word on an appointment as yet, fingers crossed it will be soon!!

    How does your son cope with school, any problems there?
     
  13. bunny_hops

    bunny_hops Violet is shrinking

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    The actual op will be just over 3 weeks time. He will hopefully be having the pin and plates removed, thye may have to replace it but all depends what they see when they open him up.. he will have another arthrogram before they open him up, depending on the results from that, will decide what op they do, i'll hopefully know a bit more at the pre op.
    I'm going to speak operations once my lad has a general check then get him out of the room,i don't want him to know too early on.

    It's very basic and simple exercises, just lifting the leg up and down a few inches, and outwards a few inches, she probably does this herself without knowing, but the physio is more of a controlled movement. The physiotherapists usually do games with them with balls and balance, if she gets the chance to have hydrotherapy she'll love that! They play water basketball, splashing games it's a lot of fun.. hopefully once you get a referral they'll send off a physio referral too. :fingerscrossed:

    When he was in the hospital, there was a daily school session with teachers that bring laptops etc to the beds and they teach your child all sorts and they make things, they did, all the children of school age have it. When he came out of hospital because he couldn't do anything for such a long time, he had a tutor 3 times a week, for 3 hours a day.

    When he was getting a little more active, he went to school in the mornings until 12pm, then as time went on we made it longer and longer until he could do full days. The school were very good, they just wanted him to come to school and try and get him back into the swing of it, he had no uniform (couldn't wear the trousers as they irritated him on his wonund and scar and he couldn't stand and fiddle with trousers at the same time) the school didn't mind. They got an Ocupational Therapist woman and a special need co ordinator in the school to take a look at the environment he would be in, and to see if they could make adaptions to help, like hand rails, or a ramp etc etc

    The Occupational Health are the ones that get you a portable toilet, wee bottles, frames, bath steps etc etc and they can really help at the school.

    He's never had any bullying or anything hurtful said towards him because of his limp or when he was in the wheelchair and using his crutches. I think that was because he had been limping and been in pain for such a long time, the other kids at the school had noticed and they'd sort of become used to seeing him that way.

    I do worry about when he's to leave and go to middle school, which is still 2 years away yet, but they won't know him etc and that's a bit of a worry.

    Last year i noticed that he was sqwinting his one eye and his eye was doing weird things, when he would look at me, the eye wouldn't focus like the other, he has to wear glasses full time. (may need a op on the muscles at he back of the eye) he's never had any problems with kids about that... i did worry at first, a limping kid with glasses... but he actually looks really cool!

    I've got pics of his x rays, scar etc i'll find them out and put them up :)
     
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