Worried Mum

I live in Australia and have noticed a few members are from Australia too. My daughter (now 10)started with Trigeminal Neuralgia at the age of 5. Presented with the usual facial pain on one side of the face, in the side of her nose then travelling up around the eye socket. Following the nerve. This took 2 years to diagnose then after a reaction to Tegretol, called Stevens Johnson Syndrome which was frightening, with no medication the pain returned. We flew up to see a neurologist in Sydney who put her on Gabapantin then she went on a trial of Vitamin B12. Both helped but caused ulcers, so we thaught. My daughter is a brilliant little athlete but had to give up running as her ancles was painful. The neurologist descided that there was more to the ulcers and sent us to the children's hospital in Melbourne. Little did we know but he had diagnosed her with Behcet's. But no one listened.

For six months she looked sicker as she was having 3 TN attacks per day. She had lost weight and looked terrible. The immunologist said her immune system was hyper sencitive but it would settle down.Her TN was worse during the winter months, so we went for a trip to Queensland by car. The morning we were to leave she had a mouthfull of ulsers, going down as far as I could see. I rang the Dr's but they said we all needed a break and she would improve with rest. Half way up (1 day's drive) she mentioned her bones were breaking, holding her joints at all different points of the body. My gut was screaming this is not right and once in QLD she ended up in hospital.

We flew home after sores started over her arms and legs, then face and up nose. Her joints were all painful and the ulcers massive. She had double vision and pain in the back of the left eye. Bruises were popping up all over her legs, like finger marks. We were sent home only to have her collaps on us at home and we went straight back down.We left hospital two and a half weeks later with my once perfect daughter, looking like something out a horror movie. In a wheel chair unable to walk and the burns unite had covered all the sores as her skin had slothed off, the burns unit words. BUT we had NO answers. The rhumatologist mentioned Behcet's and a few other names that I had never heard before. With twice a week physio for one month, my daughter went onto crutchers then another three months she began to walk. She was so brave and we were so proud. But now we were on the merry go round of, what is it and could it be diatry etc. We have worked out ourselves, not to cover the skin ulcers just let them heal. My daughter feels them tingling after about 1 week, then they run with blood. Then they will fully heal after about 3 weeks this seems to be her pattern.

At 9 and living in pain she began to also have ulcers down below on her vulva. If things weren't bad enough. By the end of the year she was also having abdominal pain and experiencing neck stiffness. Just before christmas we went to the dermatologist where I wasn't leaving without something for her to feel painfree. He wasn't happy but she was given a small dose of prednisolone. I couldn't believe how scared I was after demanding it, but how relieved I was when she was able to run and play as all 9 year olds need to. We finally had the diagnosis in May 2012, four years after it's begining. Not long compared to others I have read about.

Now 10 the last five months have been hell. In hospital for five days, home for two weeks. Weekends are best at home unless we trully have to be there. The start of November her left eye became swollen, tearing, red and painful behind the eye. Uveitis had started, then the next week she ended up in hospital again. The Dr's descided to look at the eye and it had increased pressure in it. The week leading to christmas, she had a endoscopy to see if there were ulcers in tummy, but no thank goodness. X -ray showed no calcium at all in her bones and her bowel pain ended up being feacal loading. She didn't poo for ten days. In the end she was screaming and now has splits in her bottom. Too many things. Her meds have increased dramatically as they try to help. She is now on, lactulose 20ml. Omperazole 20ml, Caltrate plus 1 tablet, Azathioprine 85mg, Prednisolone 25mg, Celecoxib 100mg. For the left eye, Prednefrin forte 1 drop x 6 hourly and Timoptol0.5% 1 drop x 2 daily.

I think we are still so lucky to have our beautiful and extremely strong daughter. The sheer exhaustion this leaves her with is debilitating as she has had to give up all sport, parties and a great deal of shcool. I know things could be worse, as we see from other sick children in the hospital but it is all just so unfair for you all, including my daughter.

Dr's have descided the medication Azathioprine a failure and are considering an IV treatment soon. Just another stress, but I hope it works.

7 Replies

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  • Hi Michja

    And I'm whinging at 50+ I'll private message you.

    Regards Lesley

  • Hi Michja,

    I'm so sorry to hear the terrible time your daughter has endured. I'm also from Australia and I wish her all the best and hope that things improve quickly for her.

    Regards

    Vicki

  • Hi Vicki,

    We are in Ballarat Victoria. I had no idea there were others in Australia, I feel for you all and wish you all good health.

    Regards,

    Michelle

  • Hello Michja;

    Behcet Syndrome Behcet's Disease Association, and welcome aboard brought us together with the same feelings and thoughts. Disease is characterized by sudden attacks show that insidious course. Here you have a very warm and sincere partnership, I feel sorry for your daughter, I wish you and your daughter a speedy recovery. Share your thoughts with sincerity, you know. We're with you all the time.

  • Hi Sunset,

    I would like to thank you for your message as it trully helps know other BD suffers have advice but more importantly support. I'm so greatful my husband made me contact you all as I feel free to voice my concern. Do you all put up a fight NOT to go to hospital or is it my daughters age?

    Regards,

    Michelle

  • Poor little girl!! I hope hope her treatment settles her symptoms soon!!

  • Hi Michja,

    I wish I had one of those really soft fluffy comfort blankets in bright barbie pink that I could just cuddle your lovely daughter up in and stroke her hair while she slept. She has a fantastic carer in you and I'm sure the only person she wants to be cuddled by is her mum. When I hear stories like you and your daughters, I have a tear in my eye. This disease is so cruel to adults but for children doubly so. I know this horrible illness hurts you too and you feel relatively powerless to protect your child from it. It must be heartbreaking for you Hun. Please keep in touch with us all on this forum, any little support we can offer you has got to be taken as well meaning from people who really DO care. Take care and look after your little one, big hugs from me xx

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