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  1. Stephyjane

    Advice on peak flow meter?!

    Hi, Ella has been having a lot of chest tightness amongst other things, she has constant nose problems Allergic rhinitis which then becomes infected. We are on our second course of antibiotics within 2 months and then Ella will start using a Beconase nasal spray. I always put her chest pain...
  2. Stephyjane

    Scopes tomorrow!

    Hi everyone, I thought I'd do an update on where we are with Ella. She has been on 8 weekly infliximab schedule for the past 9 months, her last one was Jan 2014. Due to Ella having lots of additional problems, such as joint pains, skin problems, dry eyes etc, which does seem to follow her...
  3. Stephyjane

    Could this be a reaction to Infliximab

    Hi, my daughter had her Infliximab infusion last Wed 8th Jan, she has been having them since last May and after the initial loading doses is on an 8 week maintenance. Ella previously had 3 loading doses starting Oct 2012 but they were discontinued due to possible joint pains ( the doctors never...
  4. Stephyjane

    What can be causing this right sided pain?

    Things have been going pretty good for a few weeks, occasional abdominal pain and constant constipation issues. Need to do disimpaction regime with Movicol every 2-3 weeks, even though I have Ella on maintenance dose of movicol, she just seems to start backing up. But still that has been good...
  5. Stephyjane

    Thickening in T I

    Well I had a telephone call today from G I at Oxford. He has a very strong accent so was quite hard for me to understand everything be said. He has had the report of my daughters MRI of her abdomen. He says there is a 3 cm thickening in her Terminal ileum. He thinks it may be inflammation and...
  6. Stephyjane

    Vaccinated children and Infliximab

    Hi, just a quick question to put my mind at ease. My daughter is due to have a sleepover at a school friends tomorrow. Her friends baby brother has had an MMR vaccination this week. Is it ok for my daughter to come in close contact with him. She is on Aza and Infliximab. Having a paranoid momma...
  7. Stephyjane

    Rash getting worse on chin!

    Well spoke to the dr about red rash on Ella's chin which is starting to spread a little round the sides of her mouth. She didn't really know what it was so we are to try a Steroid/ Anti fungal cream Daktacort for one week then if it doesn't help go back to the GP for a Steroid/ Antibacterial...
  8. Stephyjane

    Broken sleep driving me bonkers!!

    Does anyone elses children suffer with broken sleep. For the past 3 weeks or so my daughter either can't get to sleep or wakes up because of abdo pain/clicky joints etc Eventually she settles down an hour or so later, but then I can't get back to sleep, so lay there silently going...
  9. Stephyjane

    Rash on chin Infliximab reaction?

    Hello all, Well I'm here again looking for all your pearls of wisdom and advice. Ella has had her 3 loading doses of Infliximab again since coming off it last year due to side effects. We are nearly 4 weeks after her last dose, so halfway until maintenance at 8 week intervals. Ella is still...
  10. Stephyjane

    An update on Ella

    Hi everyone, I thought I'd give an update on Ella and just wanted to tell you I check the forum everyday to see how you are all doing. The last time I posted Ella had been taken off her meds due to neutropenia, that was finally resolved by March with Sulfasalazine being the culprit. Since then...
  11. Stephyjane

    Could this be a flare?

    Hi, A little update on Ella, beginning on Dec Ellas wbc dropped and her neutrophils were severly low, so she has to come off her meds. She was on Infliximab, which she is not having again due to side effects. 100mg Azathioprine a day and 4 x 500mg Sulfasalazine a day. Unfortunately Ellas blood...
  12. Stephyjane

    Thank you for your support

    :ghug: Just wanted to say what a wonderful group of people you all are. Thankyou for answering all my qu's regarding Ella. I haven't been on for a little while as it all got a bit much so we escaped to my parents for a few days. Ella has had a second Infliximab and is having a Rheumatoid and...
  13. Stephyjane

    Infliximab side effect?

    Hi, first off thank you so much for all of your support for Ella and myself,you truly have been a lifesaver. Well Ella had her first Infliximab infusion last Fri and everything was fine until Tues when Ella had a pain in her right leg from the knee down. As the days have past it is now...
  14. Stephyjane

    Infliximab tomorrow!!

    I thought I'd start a new thread as tomorrow is a start of a new treatment for Ella. After deciding to put Ella on TPN the big doc in Oxford has said no way. She is to start infliximab tomorrow, I've lost count of how many pills thèy have her on at the moment and have said if she doesn't start...
  15. Stephyjane

    Symptoms back :-(

    First I feel I must apologise as I seem to just ask advice from others, yet don't have any advice for anyone else. So new to this I just don't feel qualified to answer others qu's yet. Ella has been becoming quite unwell over the last week or so. Her dr wanted her off of the Pred as she had...
  16. Stephyjane

    Bright red cheeks!

    Hi, I know this ones a bit strange, but the last couple of nights my daughter has gotten really hot red cheeks, she also has a slight sore throat that has been hanging around for about a week and feelings of nausea. There has been no temperature. The only thing different meds wise is an increase...
  17. Stephyjane

    Newly diagnosed daughter on pred

    Hi, I'm new to this forum, my daugher was diagnosed with Crohn's disease just before her 10th birthday in June this year. She was started on a 9 week course of Prednisolone, starting at 40mg, and Azathioprine. When she had her scopes they found extensive Crohn's through her entire tract. We are...
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