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The Action Duchenne website aims to offer a unique forum for sharing information and ideas in the search for a cure and better medical care for Duchenne and Becker and will at all times attempt to ensure postings are accurate, scientifically peer reviewed and not offensive to individuals. Action Duchenne, however, cannot take responsibility for personal opinions, information and the content of links to other websites. It is essential that you always contact your clinician or GP before taking any course of medication, therapy or supplement.
Steroids and Ulcers
It is with great sadness that we have to report that a 7 year old boy in Wales with duchenne muscular dystrophy undergoing steroid treatment died suddenly on 27 April 2008. The thoughts of everyone at Action Duchenne goes to his family at this time. The family have asked Action Duchenne to bring to parents’ attention the circumstances surrounding his death.
He had been completely well until the Friday evening when he developed a viral stomach bug, that a number of his classmates had experienced that week. He saw a GP on Saturday who confirmed it was a viral stomach bug and no action was necessary. In the early hours of Sunday morning the pain became more severe and he died on the way to hospital, 36 hours after first experiencing sickness. The cause of death has been confirmed as a perforated stomach ulcer. The family are awaiting the results of the post mortem. The Coroner is currently considering whether the steroid treatment, Duchenne or other factors contributed to the outcome. This report will then be passed to Francesco Muntoni's team at Great Ormond Street Hospital.
This would appear to be a very rare incident. But as many young people with Duchenne are regularly taking steroids Action Duchenne feels that parents should be reminded of procedures when dealing with a young person with Duchenne who might be taken ill very suddenly.
We know that steroids such as prednisolone have a real benefit for young people with Duchenne. But we also know that they have side effects. These are well documented http://www.treat-nmd.eu/soc/eng/dmd/ .
It is important to know that steroids can increase the risk of stomach upsets and ulcers. Steroids can also mask symptoms of viral or other illness and so the usual associated high body temperatures for example might not be recorded. In other words a child might be very seriously ill but not showing the normal symptoms.
It is important that families err on the side of caution and act quickly if your child with Duchenne is taken ill.
We strongly advise you to:
• Contact your GP immediately if you are concerned about stomach pains or other signs of distress
• Get your child to hospital immediately if the symptoms appear to be worsening or are severe
• At all times contact your specialist Duchenne clinical team and ask for advice and keep them informed
We send our small words of comfort to the family who have sadly lost such a beautiful little boy.
6 Comments
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- Paul Ackroyd
- May 22nd 2008
- 14:20pm
This is just awful and our thoughts go out to this little lad's family. I am sure many of you, like me, will be wondering whether to continue with steroid treatment. None of us want to give our children drugs of any desription let alone steroids. However, having thought long and hard about this, Heidy and I have decided to continue to give Edward this medication (Deflazacort). We have had to take into account the considerable difference we have seen in Edward since starting steroids (in April this year at age 4 1/2 years), the energy and increased strenght they have given to him to enjoy his life. It is vital that appropriate medical advice is on hand. I would say that the arrangements we have in place are a slightly different. We would prefer to refer straight to the A&E, we do not go via the GP. We had already managed to get our local Consultant Paediatrician to liaise with one of the senior A&E Consultants so that if ever there was an issue with Edward's well being the medics know what to expect and look out for. It is worth remembering that the A&E Department may not have a lot of experience of dealing with Duchenne. Unfortunately my experience with the GPs has led me to make these arrangements and what Nick has reported sadly reinforces my view in relation to medical care generally. Try to obtain the mobile number of the Paediatric Consultant if you can (our Consultant offered this from the outset). I have used it to raise concerns at various times and she does not mind. The other thing we have done is to make sure the school/nursery report any change in Edward's well being to us by mobile so we can take the decision as to what medical advice to take. I wondered whether I was being over protective of Edward doing these things but this sad situation fully justifies it. I also think that people generally don't seem to appreciate the seriousness of the condition when the children are younger, when their appearance may not suggest significant disability. I suspect this may be true of some medical professionals as well. A medic friend has repeatedly told me, if in doubt get him checked out. It is sad that it seems that this little lad was taken to the GP and sent home. We have to get the message across to medical practitioners that Duchenne and the treatment is serious and the care and advice tailored accordingly. They need to know the potential side effects of medication even the rare problems, such as stomach ulcers. I hope this gives further food for thought. Paul Ackroyd
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Rhys was one truly special little boy. His smile gave light to every person who met him. Research in Holland has found problems within the smooth muscle of the intestinal tracts of boys with Duchene, My own son has not used steroids but had to undergo major surgury for a ring block and whilst in critical care nearly died from an arterial ulcer. We were told only 1% of people developed this after surgury. unbelievably a week later the same thing happened again. I belive there is already a risk with duchene boys to develop arterial ulcers and truly believe if my son had not a. already been in hospital and b. been on steroids would not be here now.
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Its very sad, my heart and thoughts goes out to the family and the little boy! I honestly think that it may of had nothing to do with steroids because Kate Bushby and her team had done clinical trials on steroids - which none of the tests shown that this could happen! It has to be checked out I agree, but nobody else on steroids have died from this tragedy before and lots of boys are on them. Maybe if the doctors treated his ulcer earlier this wouldn't of happened! "steroids can increase the risk of stomach upsets and ulcers" Yes that is true but if he was given treatment for ulcers and his steroid treatment, it may of helped! Plus remember you can't just come off steroids because your body naturally makes steroids.
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We, as a DMD family in California, are extremely sad to hear this news. Our hearts and thoughts go to the family of this beautiful boy in their difficult time. More information and research is necessary for parents and patients internationally to know how best to care for their sons. Our son's diagnosis is recent and we didn't even realize ulcers from steriods were on the list of things to watch for. There is already too much to deal with, what more can there be? ps pardon my American spelling
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I feel very sad after knowing this sad news. Tears comes in my eyes.why God not listening any of dmd patient's mothers voice.Where is he having so big heart ? God please help us do some miracle.
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I have to echo Paul Ackroyd's sentiments and suggest that GPs - who have a sound all-round knowledge of the whole medical spectrum but not necessarily a detailed understanding of DMD- may not be the most appropriate point of contact, if you are concerned. I am so saddened to hear of this news and hope the family concerned know that the thoughts of the Duchenne community remain with them.