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Prevalence

Posted , 8 users are following.

bettye18599
bettye18599

I need an answer, or where to find it, please.​

​What is the prevalence of Perthes Disease and Autism/Asperger being comorbid, in other words, is there information out there somewhere that shows how many children with Perthes Disease also has Autism/Aspergers.

Does Perthes Disease affect the right or left hip more?

​My son is 35, had Perthes disease, and I am, within the last couple of months, suspecting Aspergers.  

1 like, 15 replies

15 Replies

  • tina00201
    tina00201 bettye18599

    Posted

    My son is 13 years old, he had severe Perthes from 3 to 81/2 years old, and was non weight bearing throughout all those years. After several years of fighting, at the age of nearly 10, he was also diagnosed with Autistic Spectrum disorder, Dyspraxia, Dyslexia, ADHD and learning difficulties. He does go to a main stream high school but struggles, especially with writing and comprehension, socially, etc.
  • bettye18599
    bettye18599

    Posted

    Thank you for a response. I hope more people come forward linking the two.

    ​Will you please tell me which leg, right, left or both.

    • tina00201
      tina00201 bettye18599

      Posted

      His right leg was affected, but his left hip has shown an abnormality on a recent X-ray so we are waiting to see/hear from Orthos to find out if it's a problem.
  • jolanda1970
    jolanda1970 bettye18599

    Posted

    Hi,

    I can't find any references right now, but I know that a few years ago I read a research that concluded something along those lines:

    - children with Perthes have a small but noticably bigger chance than average of being diagnosed in the autistic spectrum;

    - children with an autism spectrum diagnosis have a small but noticably bigger chance than average of developing Perthes;

    - the researchers have not discovered if there is a dirct causal relation. (In other words: we have no idea why)

    My son had Perthes in his right hip from about age 4 to 6.5 (thankfully not that long. He has also been diagnored with autism and ADHD.

    On top of all that he was born without fingers on his left hand and a permanent small bold patch on his head. And now we found out that h has a chronic growth delay in his bottom jaw. I actually ended up here while I was trying to find out if all of those things could be connected. In the meantime I'm curious to find out if more people answer your question.

    • tina00201
      tina00201 jolanda1970

      Posted

      It's strange you say about the bald patch on your sons head, my son was born with 2 bald patches (one on each side of his head) and a strawberry mark that goes inward on his crown, that grows dark hair around it very quickly, in fact when he was born he had a little pony tail around it. His bald patches have never grown any hair on them, which is annoying as it affects any hairstyles, he's very self conscious of them now and makes sure they are covered. Our children have been through so much, and still have so much to put up with, life can be cruel sometimes. 
    • bettye18599
      bettye18599 jolanda1970

      Posted

      Thank you for a response.

      ​If you find or remember where you saw the research, please let me know.

      ​Yes it would be wonderful if there was a way to find out which things could be connected. I suppose the list would be endless, but I would surely take my time to look. The list could possibly help to catch and treat one thing early that may cause many things if left untreated.

      ​If the autism had been caught earlier,  it could have maybe prevented the ADHD, anxiety and who knows, maybe the Perthes.

       

    • tina00201
      tina00201

      Posted

      Gosh, reading your reply was like I'd written it myself. My son was born with 2 bald patches (one on each side of his head) and a strawberry mark that goes inward on his crown, that grows dark hair really quickly and was born with a pony tail, which we still have in a little box. My son is very conscious of his bald patches and is restricted on hair styles. He was diagnosed with severe Perthes when he was 3 and spent the next 5 years in a wheelchair completely non weightbearing, we were also aware of him struggling socially, academically etc but no one listened to us and it took 5 years of fighting to get him diagnosed with ASD, Dyspraxia, ADHD, Dyslexia, Hypermobility and learning difficulties. He's 15 now but struggling at main stream high school. I'm hearing more and more of Perthes children having Autism or other learning difficulties and it does make you wonder if there is a link. 

  • jennifer36360
    jennifer36360 bettye18599

    Posted

    Hi I've found this conversation as a result of trying to find an answer to the same question. I have 3 kids the oldest and youngest diagnosed very young as being asd...youngest who has just turned 7 developed perthes in his left hip last September.  Thankfully it is very mild and did not need any medical intervention...talk of a external brace for four 4 months was on the cards.  He has been discharged from consultant in relation to his perthes...will be getting tendons cut in about 6 months as tippy toe walker.  However our consultant repeatedly states the prevalence between perthes and asd. He's not the type that you get to ask too many questions. My point is with 2 boys with asd and the large asd community I am exposed to with, parents, ot's, slt's, play therapists, psychologist etc etc...not ONE had even heard of perthes before..let alone perthes and asd....so personally I'm not seeing the "link" between asd and perthes.

  • zz8919
    zz8919 bettye18599

    Posted

    Dear all,

    I am 27 years and have had Perthes since I was 10 years old. I have never had any difficulties with learning nor did I have difficulties with finding friends or any social aspect of my live. I finished university and a master. Als I have Perthes on my right hip.

  • joseph95958
    joseph95958 bettye18599

    Posted

    I'm 45 and was diagnosed with perthes in my left hip when I was 10. I have had several surgeries on it including 2 hip replacements. I am currently in the process of getting an assessment for ASD namely Aspergers.

    I am highly functioning with a high IQ so nothing was ever questioned relating to this until we have had to seek support for our daughters and I have noticed numerous similarities with myself. They also have minor bone issues. I've been able to have friends and a job etc but never felt like I fit in.

    I will try to update you on the results when I get them.

    I hope this is of some help.

    • bettye18599
      bettye18599 joseph95958

      Posted

      Thank you for a reply. Trying to get down to a cause and cure. 

       My son was born in 1980. In 1980 the prevalence of Perthes was 1 in 10,000. In 1980 the prevalence of ASD was 1 in 10,000. Boys are 4 times more likely to have ASD and Perthes. I was so hoping that detecting one or the other earlier would be a way to avoid one or the other.

      ?Did any of your folks, parents, grandparents have Tuberculosis? There is a Tuberculosis Hip that looks exactly like Perthes hip, its name was changed to Perthes. My husbands mother had TB, so I have questioned that TB could be a start of it all.

      ?Please let me know the steps you take to get an assessment for the Asperger's. I believe the hallmark symptom is a powerful desire for loneness.

      ?May God bless you and keep you and your family in His care.

      ?

    • bettye18599
      bettye18599

      Posted

      I believe the hallmark symptom of Aspergers is a powerful desire for  "aloneness." correction

    • tina00201
      tina00201 bettye18599

      Posted

      In my experience having a child with Perthes and ASD, plus other special needs, he definitely prefers his own company but that isn't because he's a loner it's more because he can't cope with the stimulus of others around him. He prefers to socialise with people through his Xbox live, he has numerous friends all over the world and they spend a lot of time talking to each other and playing games together, but when he's had enough he's able to walk away/turn off and be quiet.

      Through the years before we had a diagnosis, he used to be repetitive with his toys arranging them in perfect lines, time after time, would stick to the same routine of play over and over again. He struggles with outside stimulus, noise, smell, crowds, tight spaces like shops packed with clothing etc

      His diagnosis didn't come til he was 9 years old, but now he's 15, he still has the same difficulties and hates going out and will avoid anything that will overstimulate his senses. 

    • SeamusC
      SeamusC joseph95958

      Posted

      Hi, Joseph,

      I am 45 too and was diagnosed when I was 9/10 years old.

      Had surgery called various osteotomy in my right femur.

      I have never been assessed or diagnosed for ASD.

      Current personal challenges and psychological depressive episodes have made me challenge my mental health.

      But I had never, ever thought of a link between Perthes and any other underlying neuro-cognitive condition....

      Interesting angle...

    • bettye18599
      bettye18599 SeamusC

      Posted

      When I was looking at a possible aspergers diagnosis, I was advised to first read a book on trauma. Of course the Perthes could cause trauma. Trauma can cause depression, and so many other conditions.
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