Hi all, my daughter has yet again had a very bad dose of tonsillitis, we took her to the out of hours doc at 6am this morning, and she was given antibiotics, while there the doc asked her if she knew that she had to stop her cellcept while on antibiotics or it could kill her, anyone else been told the same?? Also written on her notes unbeknown to us, that when she was 1st ill at the age of 17 she is now 25, she was in hospital seriously ill for 5 weeks, and on her notes at the hospital the doctor said to my daughter that also was she aware that she went into cardiac arrest while she was very poorly, nobody not one person ever told us this, I'm absolutely disgusted that we were left in the dark and not told, now i just cant seem to get this out of my mind, how does one cope when being told this kind of news?? x
Antibiotics and Cellcept: Hi all, my daughter... - Behçet's UK
Antibiotics and Cellcept
Oh my goodness, what a dreadful shock! What reason did the doc give for his advice re it would kill your daughter if she didn't stop cellcept whilst taking the antibio?
I think one way to cope might be to get on the case - ring the BD Consultant or at least speak to his Secretary tomorrow and tell her about the antibiotics and advice you were given about stopping Cellcept. You need expert advice about this urgently.
Regarding the cardiac arrest - I would get a copy of the notes. You could also ask for a copy of any correspondence between the hospital and the GP at that time, as the hospital may have written to him/her about this. It would be surprising if they hadn't. That throws up the question of why didn't the GP tell you either of course, but I think it's more important to look forward than back - find out more; what do they think caused it, what, if anything, needs to be done now. It may be that it was a one off, nothing more to worry about incident, but you need to know.
Hi tamirra
Whilst on cellcept I continued to get chest infections and had to take antibiotics, I was advised by my Bd nurse that I could not take cellcept I was not advised about the danger of taking both though, I have to say that's very frighting to say the least.
I am sorry you were not advised of your daughters cardiac arrest, that in its self is very concerning and very worrying. But I am not surprised, when I was in hospital having a major operation my lungs went into spasm which was a result of a major chest infection and very little oxygen, it wasn't until 4 weeks later after leaving hospital I found that out after reviewing my letter detailing my op and results.
Take care and best wishes to your daughter.
Sue xx
Yes i reckon this needs looking into, i know its the passed but if we had not demanded that my daughter was moved from a side room to the mail ward then this would not have been picked up, it was purely that she was moved that something was done quickly. x x
Hi Tamirra
I think you'll find that the Centre of Exellance has a nurse you can ring and get advice and discuss your worries. The contact numbers are on this link
behcets.org.uk/london-centr...
Hope this helps
Andrea
Excellent advice 
We are under the COE at St Barts in London, i could email Prof Fortune for advice. Thanks. x
It may be better to phone and speak to someone. An email may not be answered as quickly.
Yeah your right tigerfeet, will get onto it first thing tomorrow. x
The nurse will talk to the doctor for you. They are medicly trained and know a lot about Bechet's. Plus they have your records there.
Good luck
Andrea
What a shocking revelation.
You can ask for copies of all notes but you may be in for a bit of a struggle. I have found that their default is to ignore you, then place obstacles in your way, thinking you are gathering information for legal action against them. If the request comes from your GP with a firm care angle, you're much more likely to be successful. Good luck.
If you haven't done anything about this yet, another option is to have look at the website of the Hospital in question. They should have information about getting copies of records.
Under the Data Protection Act 1998 you are entitled to view your own medical records.
I think you are right Tigerfeet
I have had to ask the hospital I am under for full copies of everything in my medical file to ascertain what has gone on before in my care.
It does cost money but in the long run it saves relying on other Dr's to obtain the info for you.
I have realised all sorts of things I didn't know before by doing this and this has helped me a lot.
very annoying that you have to go to such lengths though
Andrea
I have emailed the hospital in question to ask for copies of all medical notes from 2005 up to now. Wonder what there answer will be. Thankyou for all your help.
tamirra - sorry to hear about your daughter's difficulties, hope she feels better soon. In relation to obtaining the notes, the GP can refuse to give you copies of notes which might cause distress, if this is likely to happen then make sure you let them know you wish to see all notes and not edited version. Good luck.
Thank you, i will do .x
child aged 11 
My niece was diagnosed with neuro Behçet’s, she is only 5 years old, does anyone have experience with children? She had seizures and fever
Full diagnosis. 
From the mouth's of babes !
