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Boy left frail after being wrongly treated for cystic fibrosis for years

Hazel McCallum calls for changes after son Ryan is wrongly treated for the genetic disease for more than seven years.

27 January 2012 16:53 GMT

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A mother is calling for improvements to be made after her son was wrongly treated for cystic fibrosis for more than seven years.

Doctors told Hazel McCallum that there was a "high likelihood" her toddler son Ryan suffered from the serious genetic disease.

The Dundee boy underwent gruelling treatments for seven-and-a-half years before doctors realised their mistake.

Boy left frail after being wrongly treated for cystic fibrosis for years

Ryan, who is now 11, has now been left frail and under-developed after the years of treatment, which included him being fed through a tube.

His mother said: "All the medications, the physiotherapy, the feeding overnight, all the stress and the upset that Ryan's gone through, the whole family's gone through, it's just been horrendous.

"We're still fighting a battle every day with Ryan. He's unwell a lot, we're back and forth to the doctor and he's missing a lot of schooling which we're really worried about.

"It's just everything and we've never had a sorry."

She is worried that her son may not be the only child who has been misdiagnosed, and is calling for NHS Tayside to improve their testing procedures for cystic fibrosis.

She said: "They should have made sure that they'd done every test because if it wasn't cystic fibrosis then he's had all this medication for nothing.

"For over seven and a half years now this family's been messed up and it's just so hard.

"We just want an apology, we just want them to stop this now and not do this to any other family."

NHS Tayside say that due to patient confidentiality it's inappropriate for them to comment .

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  1. Default avatar

    1. 27 Jan 2012 18:01kz said

    They just be thanking god that their son does not have cf...

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    2. 27 Jan 2012 18:01kz said

    *should*

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    3. 30 Jan 2012 16:29cacafiss said

    Our family is going through the same as Ryans family.My granddaughter is now 16 and was told she had cf at the age of 4,on her last visit to ninewells she was told to go home there was nothinng wrong with her.She has been left with an unsightly scar on her stomach as she was tube fed like ryan.So i say to you KZ YES WE ARE THANKFULL

    BUT THESE MISTAKES SHOULD NOT BE MADE.

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    4. 01 Feb 2012 18:27Angel73 said

    Hi, we have went through the exact same as this family, in fact I am lead to believe that our son was the first person that the consultant reviewed and undiagnosed the CF.

    KZ it is very easy for you to say that we should just think ourself lucky that he doesnt have it and yes we do but you had no clue about the bigger picture involved. Firstly we were told that our 3 year old son had CF and was very very poorly and he had to have all sorts of very strong medicines including intravenous anti-biotics every 3 months. That meant administering 3 doses of IV drugs very early in the morning and then the last dose at midnight. He was on lots of physitherapy and oral medication all day every day. We had rehome one of our pets because he wouldnt be healthy to have it in the house. So we go through this for 3 years relying on these drugs keeping infection free and at the end of the day, kept him alive. Then like a bolt out of the blue we are told actually he doesnt have the CF we have been treating him for and he can stop taking the drugs. So then they started to take him off the meds that we were led to believe was keeping him alive, do you know how difficult that is to be a parent and have to watch them stopping all these meds and treatments we have been so dependant on keeping our son well. He also had a portacath inserted in his chest for IV medication to be administered and then later another general anaesthetic to have the port removed when they realised it wasnt needed but like cacafizz said that has left a scar that will fade eventually but not in the near future.

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  5. Default avatar

    5. 01 Feb 2012 18:28Angel73 said

    3 years on our son is still having problems at school, he is still seeing a psychologist, he has a problem now with attention defict as he is used to one to one attention and now he has to adapt not having that, we also had to re-adjust his diet, a CF diet is full of fat and carbs etc and we had to retrain his body into eating more healthy foods and not a McDonalds everytime he felt like it. He is also having problems remembering things that he learnt at school in that period and we are still trying to bring that forward in his mind.

    So KZ yes we are pleased that he doesnt have CF but let me assure you the undiagnosis of CF is definately NOT the end of any problems that our son and us have. So perhaps you make snap comments like that you should think about the whole picture not the first thing that comes into your head.

    I would like to say as a final point that at all times the CF team at Ninewells Hospital couldn't have been nicer or more helpful to us both before AND after the undiagnosis, we cannot fault them in the least and they were a huge support to us and our ordeal would have been so much harder without them. Donna x

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