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Perthes disease in 8yr old son!!!!

Posted , 5 users are following.

michelle50486
michelle50486

Hi. My 8yr old son started limping in march 2016 out of the blue but said he hadnt done anything but it was hurting all around his calf... took visit to docs who done a knee and hip examination to find he was very restricted with movement in his left hip so was sent for xrays. After waiting a life time and limping getting worse off we went to a and e. After 6hrs of waiting we was told a bed was being arranged up on the ward for him (as you can imagine at this point im shocked and confussed at what the problem could be) we were met by a doctor who confirmed it was perthes disease. From then on he was monitered quite frequently with xrays and regular check ups with the surgeon he also went through weekly courses of physio in and out of hydropool but nothing improved. We had appointment for an athrogram (where surgeon injects a die around the area to get a better vision of what is actually going on) for the 31th august 16 after attending the pre op the day before he took one look and said we are operating tomorrow. (SHOCKED)..Had a baby in the april and my son starting high school the following day. It was madness.... so for the operation he had a osteotomy which involved making a cut in his groin about 3inch to push his bone out of cut about 12cm down his left side they broke the bone and held in place with plates and screws. He will eventually have to have these removed. His left leg is currently 2cms shorter than the right and is waiting for his trainers to come back from orthotics as they are placing a wedge in the sole of it to even him out. After op he was non weight bearing for 3weeks and used a walker to get around since then he has been on crutches. He has had physio ever since the opertion.

I know this is long but hope it helps you to get a better picture on things if your child is going through similar also i would like any feed back on dla as i applied but they declined straight out right so i re applied and now they have asked for a medical report... ive also applied for a blue badge waiting on decission on this also.

0 likes, 8 replies

8 Replies

  • tina00201
    tina00201 michelle50486

    Posted

    My son started limping when he was 3 years old, we took him to the Drs and were referred to the hospital but despite the doctor doing an urgent referral, the appt we received was for 24 weeks later, while we were waiting the limping got worse, he couldn't go up the stairs and could barely walk more than a few steps. So I became a pest of the Secretary to the Consultant we were due to see and after numerous calls, we were seen within 8 weeks. The consultant was disabled himself and elderly, but knew what it was before XRay, once he had the X-ray the consultant told us it was good we had pushed for him to be seen, the bone had disintegrated so much he was just about to start wearing into his growth plate and if that had happened his leg would have stopped growing for good. We were told he had to stop walking immediately, for about a year, and would need a wheelchair but there was a 9 month wait for NHS wheelchair, luckily my husbands company have a charity that bought him a custom made chair. Over the following months he suffered great pain and was admitted to hospital several times for 2 weeks of traction and eventually we took him home on traction. He had lots of complications and his pain was horrendous and needed heavy meds, and what should have been 1 year in a wheelchair turned into 5 years, it took 5 years for his blood supply to return to his hip and the bone to start to regenerate. It finally grew back to a third if the size previously but it was rounded and stays in the socket. During this time, because if his pain levels being abnormal for Perthes, he had several MRIs on his spine which has shown a Syrinx (cyst) in his spinal cord at base of his neck, which doesn't cause the pain, but this may develop later and could paralyse him, so would need emergency surgery if he gets any symptoms. He also has ASD, Dyspraxia, ADHD, Dyslexia and Hypermobility. He's 14 now and at main stream high school with help. He still gets pain from his hip, and can't manage all PE, he has to avoid contact sports, to avoid breaking the hip. we get DLA for him and gave done since he was 3, the only advice I can give you to help your application, is to include copies of all hospital letters, doctors letters, any documentation to prove his condition and how he struggles. If you have a good doctor, once you've filled in your application form, take a photocopy of it to his GP and ask them to do a letter confirming his condition and treatment, and they can refer to the form to know what you have put down, my doctor always does this for us and it makes a huge difference. Sometimes, if they have all of this documentation they don't need to contact anyone and will accept the claim just with what you provide them with. I hope this helps you. X  

    • michelle50486
      michelle50486 tina00201

      Posted

      Hi tina... thanks for your reply. I am currently fighting other symptoms of my son and fighting the the local council for a statement. He is so behind on his level of learning compared to others his age and i personaly think theres something there. School are trying to blame it on his glue ear as a baby that didnt get noticed for a while but as his mum i think there is more to it. He has regular one to one in school and has just started to see an educational pyscologist. Hes had speach therapy in the past, he doesnt eat that much just certain things (was under a dietician) and just little things he does that like he wont put his tops on until hes put his trousers on 😯 hes makes a humming noise whislt doing things like playing or watching tv. He would rather play on his own than with others.. as his mum i truly believe theres something there. His confidence is shot to pieces too he doesnt like change.

      I have 3 children 2 boys aged 12 and 8 and a girl aged 10mnths... i say my 8yr old drew the short straw bless him it always seems to be him.

    • tina00201
      tina00201 michelle50486

      Posted

      I completely understand what you're going through. From what you describe, it sounds like your son is displaying Autistic Spectrum tendencies. I had exactly the same with my son, from the age of 4 he was behind and when he started school, he was behind everyone. From the age of 5 we kept asking for him to be assessed but they just kept blaming it all on him being in the wheelchair, which is ridiculous how the hell does that affect his academic or mental ability, we even had a SENCO tell us he was just lazy. We kept pushing every year for help for him, but got nothing, when he was nearly 8 we paid for a private Dyslexia assessment which confirmed he had it but they also told us they thought he had Dyspraxia and possibly ASD, we took their report back to the school but they wouldn't do anything. We then moved a few months later, to a new county, his new school were amazing and completely shocked that he didn't already have a Statement, so they referred him to a Paediatrician and applied for a Statement. Within 5 months we had all his diagnosis and Statement, he was given loads of help and his anger and frustration calmed down massively at school. He's now at High school which is a battle again, I'm having to constantly remind them what they are meant to be helping with.

      He is very repetitive with things that he does, he always strips his clothes off when he comes home, down to his boxers (he hates the sensation of clothing), he's very picky with his foods, he struggles to shower or bath on his own, he can't do his own shoe laces, shopping is a nightmare with him and we have to pick the right shops for him as he hates being enclosed, his writing is virtually illegible so has to use a laptop at school and for exams, he doesn't have friends, he prefers to be alone but with me around or he will panic, he's too frightened to go upstairs on his own etc.

      I hope you manage to get what you need for your son, keep pestering the relevant people, especially the school as they will try everything they can to not have a child on Statement. He will need an assessment by the Educational Psychologist and a referral to a Paediatrician who can assess him for the possibility of ASD or anything else, but if or when a Statement (Or EHC plan as they are being changed to now) is applied for it is a slow process and can take a good 6 months or so.

      I really hope that they help him soon, my son was nearly 9 before he was diagnosed and I often wonder what would he be like, if they had diagnosed and helped him sooner. X 

       

  • SeamusC
    SeamusC michelle50486

    Posted

    I am 45 years old now and had Perthes when I was 10 yrs old (various osteotomy, pins and plate inserted and then removed 6-9 months later).

    Last year, in April 2016, I had total hip replacement.

    I don't have a huge recollection of my experience back then and have no idea about DLA and blue badge application, so sorry that I can't be of help.

    However, I did just want to say thank you for sharing your stories and experience. I hope it helps others. And I hope it helps each of us realise that we are not as alone as we might think.

     

  • anna1600
    anna1600 michelle50486

    Posted

    I'm 16 and I've been recently diagnosed with perthes disease which apparently is odd in my age group😂 but I had congenital hip dysplasia as a baby and ive had multiple surgeries leading to the hip socket on the side with perthes being smaller but hopefully I won't have to have surgery 😕thanks for sharing that because its given me an idea of how things may go if I do have to have surgery x

    • tina00201
      tina00201 anna1600

      Posted

      I'm sorry you've gone through so much already and now Perthes as well. What I've learnt during the sons long journey through Perthes disease, is that different Consultants treat in different ways. Our son was stopped from walking immediately upon diagnosis, and remained so for the next 5 years until his hip healed, but other Doctors would have let him continue to walk and restrict him from running and doing sports and others may do surgery. In our experience, after speaking to other parents and doctors, we learnt that the reputation of our sons Consultant was held very highly and his methods were found to be very successful. The main reason I wanted to tell you this is so that you can be more informed around treatment, and this may help you to ask questions of your doctor to be sure and happy that you are getting the best treatment for you. I hope your recovery will not be too long. X 

  • eleanor25383
    eleanor25383 michelle50486

    Posted

    Hi Michelle, I am now 29 years old. I was diagnosed with perthes of the right hip aged 7. I did not have surgery (apart from the growth plates taken out of my left leg to stop there being too much leg length difference). I have managed to live a relatively normal life but am now looking at a full hip replacement. The main reason I wanted to reply was to say one of the things that has allowed me to lead my life has been having a blue badge, so fight for this! I was not elligible for dla, but my life up to now would have been very different had I not had a blue badge and car to get me around.
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