Use of steroids in 9 year old girl to treat flare up

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Need to decide whether or not to start my daughter on steroids. Nothing else is working. How severe are the side effects? How long does it take for them to start showing etc? How effective are they? She's quite worried about being bullied in school. Any advice welcome and appreciated.

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  • Posted

    I started on 20mg at 3.30 yesterday and have only cat napped all night.  The other side effects take a bit longer.  At least it has stopped me sweating and the pain us beginning to ease.
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    • Posted

      I have only to take them for a month, hopefully.  Last time I was on for longer.  If she gets well she will most likely be weaned off them.  My 'team' are very careful to minimise any of the drugs they put me one.  I am lucky I have two Crohns nurses and three rheumatology nurses and two consultants that talk to each other.  I hope she has a specialist paediatric doc who is well versed in Crohns.  They are few and far between but worth finding. CICRA is worth looking at.  They are very helpful as are CCUK.
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  • Posted

    Hi,

    I know nothing about the effects of steroids on children but am assuming the your Dr wouldn't be prescribing them if he didn't think they were safe for your daughter. From an adult's proint for view  I've found that both prednisalone and IV hydrocortisone to be both fast acting and effective in dealing with Crohn's flare ups and I've not experienced any unpleasant side effects. Some people do, but remember just beacause some people experience side effects it's by no means certain that everyone will. Different people will have different responces and your dtr may be absolutely fine. I do wish you and your daughter well. I was just  a few years older than she is now when I first suffered with Crohns (over 50 years ago!) and can still remember how horrible it was but if it's any help, for most of the past 50+ years I've lived a pretty normal life. My advice would be trust your Doctors and follow their advice.

    Best wishes

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  • Posted

    If we work backwards, I imagine your daughter because of the Crohns is feeling very weak and needing to go to the loo lotsu, so it will make her an ideal target for the bullies. Steroids will help her feel better and give her a strength that she hasn't had. OK I know from a parents point of view Steroids sound frightening, but it really is the only thing that will help her for a while. I have had Crohn's for 50 years diagnosed when I was 21, so unfortunately your daughter is young to have been diagnosed, but they are making good progress and in time they will develop something that will soften the effects. They have made such progress in my time alone. They really don't know how Steroids work, but they seem to make their way to the bad parts and help. Not ideal, but your daughter will benefit from not feeling so poorly. I took Steroids for 15 plus years and weaned myself off them eventually, because your own body makes Steroids as well. Just took time - over 2 years actually and my Specialist said that I may have to take short sharp sessions when I get bad attacks, but I did it. So the good and most important point is that your daughter will start feeling better, and it will be monitored stringently. There are now far worse drugs on the market that people have to take basically because Crohn's affects the anti immune system, Better to take the Steroids and get the condition under control now, so that  your daughter can be spared the crippling stomach pains which come with it, she needs to experience a better quality of life, so the fact that she may have arthritis when she is my age is immaterial. They are working on this now and have already got additives in place to help prevent this. She has been extremely unlucky but who knows, with the Steroids she will get her life back and grow into a fine young woman and hopefully be successful in having children, and with that she may lose the Crohn's all together. I know this sounds like a flight of fancy, but it was proved sometime ago it will go into remission. You are obviously a caring parent, but think about her quality of life and if they have suggested Steroids the medical people feel this is the right way to go.

    If I can help any further, please get in touch. Sheila           

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  • Posted

    Hello again!

    At the risk of repeating myself, I'd like to agree with the reply from 'sheila51371'.

    Having Crohns at any age isn't good, but as a child it really is horrible. I was about 12 or 13 when I first became ill but my Crohn's wasn't diagnosed until I was 15 and had to undergo my first bout of emergency surgery. Because of my illness I lost a lot of time off school, was constantly weak and tired, could'nt get involved in games or sports or do any of the other things young lads do; consequently I didn't have many friends, became a bit of a recluse and life was generally pretty miserable.At that time there wasn't really much in the way of medication to treat IBD but once I'd had the operation (a re-section) I got my life back on track and was able to make up for lost time! I went on to get to university, marry, have two children and a happy, and reasonably sucessfu,l career. 

    Steroids won't cure your dtr's condition (there is no 'cure' for Crohn's) but they will greatly relieve the symptoms, stop the pain, and allow her to lead a much more normal life.  They can, hopefully, bring about a full remission during which she will be completely 'symptom-free' and feel perfectly normal. These periods of remission can last anything from months to years (I've recently undergone my third operation following a flare up some six months ago, but pror to that had had no problems for about 15 years!)

    In  my experience, steroids are usually taken as a 'short, sharp' coures of treatment for a period of no more than a couple of months and I'm sure that in the case of someone of your dtr's age she will be closely monitored. Steroids (typically Prednisalone) are the 'entry level' treatment and (with adults at least) usually start with a fairly high dosage and then taper off over a period of 6 to 8 weeks) and they can (and I hope will) make a huge difference to her quality of life.

    Once again I wish you and your dtr all the best  and if you have any questions you think I can help with, please get in touch.

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    • Posted

      Hi, I am so pleased to see your reply to Nigelmf,particularly as we appear to have gone through the same sort of thing over the 50 years of being diagnosed. The only difference  being that I was 20, and you  appear to have had it since you were 14/15. It is a horrible illness, but like you, having had various re-sections and eventually a colostomy I have enjoyed a relatively good life and Steroids did help with achieving this. I hope that this very caring parent will have found help with his decision when he got the various replies and will get the courage to agree with the medics to use Steroids for his 9 year old daughter. Unfortunately, I think there is a tendency to muddle up what people think of Steroids as the illegal tablets that can miraculously increase sport performances and make people look musclebound which causes a lot of concern. Also, I think unless you are lucky and get a Dr who is happy to explain everything to you. Glad to have met you through these various discussions. Best wishes. Sheila 51371    
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  • Posted

    Today I have not fallen asleep during the day.  I can get up and downstairs easily and have only had a couple of mild sweats.  The improvement after two doses is remarkable.  If the doc recommend it for your caught then don't wait I am sure it will help her.

    i was very lucky I was not diagnosed until 5 years ago. I did not have it as a child. I now know I have had it for much longer but managed the symptoms - not even going to the docs. I am 73 years old. ( don't shout about that ) .  

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  • Posted

    It is ok If she's going to be on it from short period of time. But will not be ok If it's going to be on long term.

     

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