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Where can I find the best consultant for my son?

Just in case any medics read this blog, can anyone please tell me where I can find the best consultant for my son so he does not have to have surgery on his face?

I’ve mentioned our visits to Great Ormond Street Hospital to treat David’s chronic osteomyelitis in his jaw. He will  be 17 next month, he will soon be too old to continue being treated there, and I’m afraid he is still in pain, though the pain is successfully being managed.

At his last appointment in April, it was decided to take him off his medication, a very strong antibiotic called Doxycycline which he has taken for about 20 months and is turning his bones yellow. We wanted to see if he could manage without it. Unfortunately, the pain returned with a vengence, waking him at 4 in the morning, and he was forced back on them. David has got used to the pain and often doesn’t even tell me, hiding the paracetamol packet so I don’t worry. He is a happy and easy going boy.

The only alternative to medication is surgery on his lovely face. I can’t bear that thought.

David’s consultant at GOS has been superb and we are heading there for an appointment this morning. I recently spoke to the registrar at GOS who said they had only seen three or four similar cases before, they are baffled about how to treat it, they say it will just take a long time.

I have been thinking about where we should go next as David is getting too old to continue being seen at GOS, though his consultant was hoping to successfully conclude David’s treatment before signing him off. I called the Royal Orthopaedic Hospital at Stanmore, but they don’t deal with bone problems involving the face. I need a brilliant maxillofacial specialist. I know our GOS consultant will have some ideas on this, but it’s always worth asking.

The reason we ended up at GOS was because we were referred there after I asked for a second opinion. Even my GP couldn’t suggest where we should go, so I suggested GOS as it is the top children’s hospital. David was instantly given a bone scan which correctly diagnosed the problem.

David had been suffering agonising pain and swelling for well over a year before this and the consultant we had been seeing at Addenbrooke’s kept asking him if he was happy at school as the tests came back inconclusive. David was even recommended for cognitive therapy when his jawbone was visibly protruding and was once told that pain was good for him. I was at my wit’s end. It is believed all this started from an abscess in the root of a tooth and he had to have a perfectly healthy molar removed. It’s all been a terrible ordeal for David over the last four years, and is not yet over.

So where to next? I would be immensely grateful for any suggestions.

*I shall be heading off to Headway Cambridgeshire and wearing my trustee’s hat when I return from London, so I will catch up with you later this evening.


27 Comments

  1. Hi Paula,

    My last update was posted this week here:
    https://elleeseymour.com/2007/10/09/we-get-davids-biopsy-results-today/

    Your daughter’s cause sounds worse than David, poor thing, I am so sorry, so very sorry she is suffering so much. I would suggest you ask for a referral to Great Ormand Street Hospital. David sees a maxilofacial specialist called Peter Ayliffe, he is also based at the University College Hospital. It will be worth the journeys and travelling expenses.

    David’s latest biopsy results came back clear, which is wonderful news. Because his latest bone scan showed he still had infection in the jaw, he will be referred to a specialist who deals with bone infections in the bone, someone called Dr Novello. It’s probably your time your daughter saw somebody like this.

    We are hopeful that David will not require surgery. I suggested he stops taking his medication to see whether it flares up again. We tried this earlier this year and I’m afraid he was in a lot of pain and the jawbone did swell.

    In the past we have been told that David has chronic osteomyelitis and fibrous dysplasia. The latest biopsy did not show signs of this. David is not a text book case. I’m so glad his consultant is being thorough and asking for another expert to see him. I wish the same could happen to your daughter.

    As I said, I would recommend asking for a referral to GOS.

    Good luck, and please stay in touch and let me know how your daughter progresses.

  2. Ellee,
    I have been reading all about your son.I can relate as we have a daughter that is 11 and for the last 7 years has had osteomyelitis of her jaw bone.She has had 5 surgerys and has been on a rediculous amount of drugs.We deal with an oral surgeon.

    Did your son recieve his results from his biopsy?How have they decided to treat him?

  3. Jude, I am very sorry to hear that Bronwyn is suffering so much, that she is in so much pain. If you feel you need a second opinion, please don’t hesitate to ask. If you can make the trips to London, why not ask for a referral to GOS like I did.

    Finding the right pain relief is so important, but it is not a cure, that is what we are looking for now with David. We go to hospital next week for the results.

    Good luck, and do keep in touch.

  4. Hi

    Went to our consultant and he was running an hour and half late so was not very good appiontment, she is going back to the pain clinic to have her tablets altered and see if that helps, Bronwyn is not in a good place at the moment she is having a lot of pain and not much sleep on about 3 hours a night so is very sleepy and grumpy with it had to take her to our doctors today as she has got another infection in her toe so on anti biotics again now the weather is starting to change will find it harder to get her out as the cold seems to affect her.

    Brownyn has to be home tutoured at the moment so again this makes her life hard to keep in touch with her friends other than on a computer on text. I try to keep positive but it is hard at times, going to start part time work in 2 weeks to see if I can try and get her in a more stable place.

    Hope all goes well next week with david at the hospital

    Jude

  5. Hi Jude,

    How wonderful to hear from you and share this news. We return to Great Ormond Street hospital on 9 October for David’s results. I do wish you well, and your daughter, with your appointment. Please do stay and touch, let’s help each other if we can.

  6. Hi

    I just thought I would introduce myself as my daughter who is 14 has just been diagnosed with the same as your son, we live in North Lincs but are under Childrens in Sheffield it has taken 14 months to get this diagnosis and we are lucky that I have kept pushing to get it and the consultant she eventualy saw specialises in this disease. We are off on Tuesday this week to see him her first appoiontment with him so hope we can find a lot more out about it and what her future holds as life has been very bad for her for the last year in constant pain with no real relief!

    just thougth it might be nice to chat to some one who has and is still going through the problems I am

  7. And good news today, David will be admitted to the University College Hospital on 9th Sept for a biopsy the following day. The hospital lost his referral, so I rang and chased it up for David after not hearing anything three weeks after being told that David would be admitted as a priority case.

  8. Bad news today. David has just returned from GOS where he had a bone scan, which involves using nuclear medicine to highlight his hot spots. And sure enough, he still has a large, active hot spot in his jawbome, or mandible, as the medics call it. We return next week to discuss this with his consultant. I shall be researching and checking out every comment in this post and taking them with me. Thank you again, thank you a hundred times. I will print off anything I feel is relevant. I’m worried that his consultant may not like it very much, but I have to do what I can for David’s best.

    His consultant works at the Eastman Dental Hospital as well, btw, he is listed there, I checked it out.

  9. I agree that Eastman Dental Hospital is the place. don’t know any names however.

  10. Like Jean-Luc and Bel, I can only send you both love and support from Sicily. I do hope you find a consultant who can really help.

  11. Wishing you the best, Ellee. This is not an area I know much about, but I am happy to see that others on this thread are giving exceedingly useful information.

    Kind regards,
    Bel.

  12. I am sorry to say I have no suggestion, but I am sending my support.

  13. I hope you have success in finding the right person; not something I can help with this time.

  14. I’m afraid this isn’t my area at all, but it looks like some others on this thread are onto it, so I’ll just wish you guys all the best with this. David’s certainly got a great mum on the case for him anyway.

  15. Q9, David takes 100mg of doxycycline each day, this is the antibiotic that helps control the pain.

    I have never heard of the Eastman Dental Hospital, I will look them up. It’s difficult to keep chopping and changing, so hard to know which way to turn for David’s sake.

  16. Hi Elle, what antibiotics is David on?
    and which others have they prescribed previously.

    PS – He should be referred to the Eastman Dental Hospital (London) on the NHS, and they should be able to diagnose the problem for free
    But you may need the cheque book to get the specialist to ‘treat’ him in his private clinic

  17. Philipa

    I’m so sorry this has happened to your boy. It must have been incredibly frustrating and my heart goes out to you both. I hope you find a solution v. soon. x

  18. Can Osteomyelitis be Treated?
    Osteomyelitis can be treated . It is important that you are treated. You doctor can prescribe medication (usually antibiotics) for you. If you are not treated bone destruction may occur.

    It wasn’t until almost a year before doctors suspected osteomyletis, they were clueless about David’s condition which is why it went untreated for so long and has probably worsened considerably as a result, it was simply dealt with simply by pain control.

  19. P.S. We do have private health care, we are with BUPA thanks to my husband’s employers. We can follow that route if need be.

  20. Q(, David was never offered antibiotics or a bone scan at Addenbrookes, those only happened when we were referred to GOS. All they did at did at Addenbrookes was prescribe paracetomal and diclofenic to manage the pain.

    It was’t a smooth extraction, I feel so upset it to this day as I can remember it so clearly. David has never in his life had a filling, and here he was being forced by an incompetent dentist to have a perfectly healthy molar removed. The abscess was never drained.

    Nobody understood why David had so much pain – and swelling. At least they believe him at GOS. We will see what the results of the next bone scan show us. They are talking about trying out the oxygen chamber, I shall certainly print off Dave Allen’s comment about pamidronate, that’s a new word to me. I will certainly not let them use my son as a guinea pig.

    Thank you, thank you, thank you, everyone.

  21. Hi Elle,
    we definitely need to get our heads together.
    If only I’d known about this before, I’ve been trying to raise the standard of services at Clinic 8 in Adenbrookes since 1999/2000. Without much success I may add.

    I presume the Consultant at Addenbrookes will next refer your son to the Eastman Dental Hospital (if he hasn’t already done so) – I’m dismayed to hear all this may have started started from an abscess in the root of a tooth and that he had to have a perfectly healthy molar removed. And even more dismayed that your son may have been treated so insensitively

    However best have your cheque book ready and be prepared to pay for treatment from a private maxillo-facial specialist or consultant/surgeon.

    Causes of Infection?
    Bacteria or fungus may cause the infection. Infection usually occurs through open fractures, penetrating wounds, or surgical operations. Infecting microorganisms may also reach the bone via the bloodstream, the most common means of bone infection in children.
    When infection occurs, pus is produced within the bone. The pus might produce a bone abscess. An abscess will deprive the bone of its blood supply.
    Can Osteomyelitis be Treated?
    Osteomyelitis can be treated . It is important that you are treated. You doctor can prescribe medication (usually antibiotics) for you. If you are not treated bone destruction may occur.

    There is no ‘guarantee’ that antibiotics will not worsen the problem, or that bone will not be destroyed (then you’ll need a bone graft). However if I read well nbone erosion or bone loss is not David’s problem, his jaw bone is actually protruding?

    PS – My deepest sympathy to David. It can be so painful, One can feel one is going mad when the pain is there and yet neither GOS or Addenbrooke’s offer you a soluytion, when the problem should be obvious and well known to any competent Consultant.

    And it does not go away with antibiotics, nor is paracetamol sufficiently strong for the acute and referred pain. Keep me informed of where you David is referred to next.

  22. I really wish I could help you, Ellee. I can only send a message of support to you and your son.

  23. David and Courtney, how excellent and extremely kind of you both to have dug around and come up with these links, I shall study them closely. And thank you for your support too Kevin. I keep telling David how lucky he is not to have spots, I certainly did.

    The latest is that David will have another nuclear bone scan to identify his “hot spots” in his mandible, and then they may recomment a quick blast in the oxygen tank. Other than that, there is the chance he could be used as an experiment, it would involve the use of chemicals to change his bone formation, I’m not too keen on the sound of that.They are keen to do everything to avoid surgery.

    The good news is that our consultant can continue seeing David at GOS, he has an adult clinic there too, and if there was a problem, we could continue seeing him at the University College Hospital nearby.

    We are up against time now as David will hopefully be starting uni in September 2008 and it would be good to have this resolved by then.

    Now off to my Headway meeting in Cambridge. Thank you again, everyone.

  24. Oh bless, Ellee. Nothing worse than having your child in pain – you’d rather it yourself than them.

    Good luck to you and David and may I say that he is such a handsome young man that even with surgery (if that is the worst outcome) his looks will have to be very badly affected for his handsomness to be diminished. I was covered in spots really terribly at that age, so disfigurement does matter to a young lad.

    Well done to David and Courtney for that research – you’ve certainly impressed and heartened me.

  25. Hi Ellee,

    I found this and this, hope it helps you out in some small way.

    Best of luck.

  26. David Allen

    P.S. Ellee, it seems that this problem is especially common in Korea, hence most of the research on it comes from there/ Japan. The results they are obtaining from a particular kind of surgery seem to be superb _ I have another paper on this published last September, which I can email you seperately, rather than post here. Contact me at david.allen@lancet.com

  27. David Allen

    Hello Ellee, sorry to hear you have both been put through this _ it must be very worrying. He is a good-looking boy (takes after his mum!) and must be keen to avoid surgery if possible. I have just done a quick search on ScienceDirect on ‘chronic osteomyelitis mandible’ and see there are a few articles. Here is a quick summary of an article which might be of interest
    “Remarkable response of juvenile diffuse sclerosing osteomyelitis of mandible to pamidronate

    Yutaka Yamazaki DDS, PhDa, , , Chiharu Satoh DDS, PhDa, Makoto Ishikawa DDS, PhDb, Ken-ichi Notani DDS, PhDc, Katsuhiro Nomura DDSd and Yoshimasa Kitagawa DDS, PhDe
    aInstructor, Department of Oral Diagnosis and Medicine, Graduate School of Dental Medicine, Hokkaido University, Sapporo, Japan.
    bLecturer, Department of Oral Diagnosis and Medicine, Graduate School of Dental Medicine, Hokkaido University, Sapporo, Japan.
    cAssociate Professor, Department of Oral Diagnosis and Medicine, Graduate School of Dental Medicine, Hokkaido University, Sapporo, Japan.
    dChief, Department of Dental and Oral Surgery, Tomakomai City General Hospital, Tomakomai, Japan.
    eProfessor, Department of Oral Diagnosis and Medicine, Graduate School of Dental Medicine, Hokkaido University, Sapporo, Japan.
    Received 27 December 2005; revised 25 September 2006; accepted 27 September 2006. Available online 2 January 2007.

    We report a juvenile case of diffuse sclerosing osteomyelitis of the mandible that showed a favorable response to pamidronate, a bisphosphonate derivative. Although conventional treatments had been ineffective for 5 years, pamidronate administration brought about conspicuous improvement both clinically and radiographically. Severe adverse reaction was not found except for low-grade fever and lassitude on the day following administration. During the course of the treatment, however, nonsuppurative osteomyelitis of the right humerus also occurred, leading to the established diagnosis of chronic recurrent multifocal osteomyelitis. Pamidronate therapy was again performed successfully with near disappearance of clinical symptoms. Both bone-specific alkaline phosphatase (bone formation marker) and pyridinoline cross-linked carboxyterminal telopeptide of type I collagen (bone resorption marker) showed a marked decrease with pamidronate therapy, suggesting that pamidronate is useful for the treatment of chronic recurrent multifocal osteomyelitis with inhibitory effect on bone turnover.”

    So, I would ask the folks at GSOH if they have yet heard of pamidronate as a drug therapy for this problem. Pamidronate is normally used to combat metastatic lesions (2-ary tumours) of the bone in people with breast cancer for instance. However, these chaps in Hokkaido have clearly found another use for it. Of course, it could be completely inappropriate in David’s case _ in which case, my apologies for raising false hopes. But it may at least be worth asking them about ths.

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