Been to see Consultant today with my daughter of 12 years old thing haven't got worse but no better too she's on cyclophosphamide infusion every 3 weeks she's had 4 of these so far but nothings changed so far. Today her Consultant mentioned once again about her having a steroid injection straight into her eye now . I just don't know what to do.

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  • After having been diagnosed having the BD some thirty five years ago I was hospitalized for trial to adjust the doze of Cyclosporin to be administered. Meanwhile I had injection directly into my eyes almost on daily basis. After a year of the same treatment in the same hospital, I almost lost my left eye and was getting tired of the hospital. I decided to leave the hospital against my doc advice who thought that I should stay until the following spring when temperature is slightly warmer. I thought since I was going blind I should prepare myself for career of acupuncturist, which did not happen. A friend wanted me to work for his company. I was allowed to visit the hospital for emergencies at anytime. I thought of myself being very lucky. I decided to eat well and keep myself very warm and enjoyed my work even though I had to rush to the hospital for steroid injections. After a while the inflammations completely stopped. Although I still have skin inflation and about two weeks ago pain in feet's joint. I still keep the fight.

    My advise is never allow your daughter to give up, keep her active whenever possible, always keep her warm (buy her silk underwar. I always wear silk underwire in all season to protect me from the elements and sudden temperature changes) and keep always faith in her and in her ability to fight. This is not a medical advice, but that what always helped to carry on with minimal amount of medications an active life even though I have retired from work last year.

    Best of luck

  • I agree. Is she in school? Can you pull her and do tutoring so that she may rest as much as she needs? what is her diet like?

  • hi yes she his in school full time the school are really good with her if she needs a power nap they have a room she can use. Her diet is healthy and balanced . she does rest when she needs too .

  • Who is looking after her - is she at a Centre of Excellence?

  • hi no she's at Sheffield Children's Hospital they have regular meeting to discuss her and they are in contact with Centre of Excellence about her and what might help .

  • I can only be absolutely honest with you Zoe. I would want her with Claire Pain and Robert Moots at Alderhey or with Farida Fortune in London - I would want to know directly what they suggest - not via any other team

  • I'm sure everyone has already done so, but maybe a 2nd opinion just to put your mind at ease that it either is or isn't what needs to be done. I'm so sorry for your despair. As Solbs said stay positive, active and healthy. Enjoy the good days.

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