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Kohlers disease.

Posted , 4 users are following.

jennifer05838
jennifer05838

To keep a long story short.

My 3 year old daughter was diagnosed with kohlers disease 10 weeks ago. Apparently it has been going on for sometime. 6 weeks ago after an X-ray we were told it appeared to be on the mend, she is still in her 'special boot' as she is in pain without it. We saw a different orthopaedic yesterday and obviously she had another X-ray done, he clearly didn't know much about kohlers as he had to Google and just gave information off there. I may not be a medically trained specialist, but even I could tell the navicular bone looks much worse from the previous X-ray. It looks like it's eroding and breaking off if that makes sense? Upon reviewing the previous X-ray and comparing it to the latest one he quickly rushed out the room to speak to the consultant and said we are to come back in 6 weeks. He never told us anything.

My question is has anyone ever had experience with kohlers disease? How long till your child made a full recovery? Did things start to get better, then worse then better again? If you could share any stories or experiences that would be fab.

Thanks in advance, Jen.

0 likes, 6 replies

6 Replies

  • martinarvelo
    martinarvelo jennifer05838

    Posted

    I hope your little girl soon recovers from this. . i have a similar complaint, osteochondritis dissecans, and what you say about the bone 'eroding and bits breaking off' is exactly what happens to my bones in the ankle.  Apparently, it is reabsorbed by the body . . However, from everything I'm reading on internet about Kohlers, children are expected to recover completely and have normal bone structure in the foot by puberty . . I do hope so. it seems so unfair when a little child has to suffer things like this!  good luck, . . 

    • jennifer05838
      jennifer05838 martinarvelo

      Posted

      Thank you for getting back of me. The man who diagnosed her with kohlers said if there is no improvement within 6 months she will more than likely have to see a paediatric foot & ankle specialist. He told us it could take a year or so to completely resolve itself & she should make 100% recovery however he cannot promise she won't experience some problems as an adult (which I suppose is understandable).

      I know it's not really a serious condition, people experience much worse, I just feel for her having to be in this boot, be in pain. It's not fair on her when we go to soft play, got to the park or even out for a walk whether it's in the street or on the beach, that I'm constantly telling her to slow down, be careful. She's a child & just wants to run, play, jump about, dance but is limited as we don't want to cause any further damage and/or pain.

      I've been browsing the internet in hope that people have shared there stories however I haven't came across any that have followed the progress from the beginning to the end which is a shame.

      Suppose we're just going to have to wait for the next X-ray and see what they say! One things for sure I'm going to write down some questions so I don't forget when I'm there.

  • jenna39324
    jenna39324 jennifer05838

    Posted

    My son has this and went undiagnosed until the navicular bone fractured and talonavicular joint dislocated randomly. I didn’t get anywhere with the NHS (they thought it was tendon and didn’t even notice the rest!) so we ended up going private after 4 months of pain. I’ve learnt quite a lot. The consultant had never seen this before so took a while for a diagnosis and to be able to explain why the bone seemed to randomly break (essentially he dead bone eroded away leave it so narrow that it broke so easily). His ‘accident’ was April 2017, he had a follow up appointment today and then another X-ray in 3 months as it can repair itself to some degree apparently. Long old journey but we have been told that he should have grown out of it by now (bones have all hardened) so shouldn’t happen again. Normally by 10 children should be ok. Fingers crossed she doesn’t get a break. 

     

    • jennifer05838
      jennifer05838 jenna39324

      Posted

      Thank you for getting back to me, it’s almost a year since her diagnosis and several appointments to check on her foot but things are starting to look good! She had an appointment today and the majority of her bone has mended, however the top half still isn’t how it should be so we are back in a Year’s time and by then they expect a full recovery! We had several specialists come in today to look through her X-rays because the condition rare and they have never seen a case before so hopefully should any child go through this our local hospital will be on the ball! 

      She is walking fine now and is in no pain however she does complain that her foot ‘gets very tired’ if we walk far or have had an active day. 

      Things are certainly starting to look up for her & I’m just pleased it never restricted her from doing what she wanted to do for very long!

  • jenna39324
    jenna39324 jennifer05838

    Posted

    That all sounds really positive for her  :-) it is good to know that the bone can heal itself. That’s my concern; not knowing how my sons will heal. Can the fracture mend and then the bone grow thicker again?! Hopefully the X-ray in May will be all good news. 
  • priya456
    priya456 jennifer05838

    Posted

    Kohler disease is a condition that affects a bone at the arch of the foot called the tarsal navicular bone. X-raysshow that this bone is initially compressed and later breaks into pieces before healing and hardening back into bone. It occurs most frequently in children between the ages of 5 and 10 years.
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