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Rhabdomyosarcoma: Part One | The time before diagnosis | Signs and Symptoms

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I am not going to write about what a Rhabdomyosarcoma is, because there are experts who have done a far better job than I ever will. Please click on the above link if you would like to find out more.

What I will tell you about are the months, weeks and days leading up to my son’s diagnosis. Yes, it took a long time to get a proper diagnosis.

One reason why I try to raise awareness is so that other families may get a diagnosis sooner.

I had noticed that my son had a cough which was worse at night. Then, when he was at nursery school his teachers made the observation that he was sometimes a bit breathless when he was running around. So, I took him to the GP, and he was prescribed an asthma inhaler. That was the first misdiagnosis.

As the months progressed, so the runny nose began. Just a little at first and I just put it down to colds, hayfever and generally being a child. Second mistake!

The runny nose got a lot worse and there was just so much mucus. It was like a never ending elastic band. The doctors gave him several courses of antibiotics, which did nothing. Third mistake!

In the few months before he was properly diagnosed I noticed that there were times when he didn’t have very much energy at all. Looking back, he had also lost a bit of weight, but I had put this down to an upwards growth spurt. The nasal discharge was getting horrendous. He had started complaining of earache too. The doctors were now talking about an ENT referral to check his tonsils and adenoids.

In some ways this was the biggest mistake of all. Once they had that idea in their minds they became so blinkered.

So, in the weeks leading up to when he finally had a scan, the first very serious symptom was his noisy breathing, which became much worse when he was asleep. He saw another GP and she noticed that there was something not quite right about his mouth. She hand wrote a letter and sent us with it to A&E. The letter clearly stated her concerns about the shape of his mouth.

When we got to A&E they sent us up to the children’s ward and bleeped a paediatrician. To this day I can’t remember if the doctor we saw was male or female. I was so distressed by them that I have blanked it out of my mind. They were incredibly rude! I was accused of being a fussy Mum basically. They said that my son was on the waiting list to be seen by ENT and that we should just sit it out. They came to this conclusion just by looking at him. They did not take any bloods or do any other observations. I left the ward in tears. Fifth mistake!

The next day I had a phone call from the nurse who had been on duty when we had gone to the hospital. She had taken the approach that ‘mothers know best’ and I have no idea how she wrangled it, but she had got the ENT appointment brought forward.

So a few days later I took him to the ENT appointment, full of hope that I would be listened to. Unfortunately, the man who called himself a specialist was also very rude to me. He did a bit more of a thorough examination but still failed to see what was really going on. He put my son on a ten week waiting list to have his tonsils removed. Then again, told me that I was being too fussy and more or less to go away and be quiet and to stop wasting their time. I do remember him very clearly, and we did meet again. More about that another time maybe. Sixth mistake!

The main event that brought about the correct diagnosis was that my son developed sleep apnoea (pauses in breathing while asleep). He was holding his breath for frighteningly long periods of time and the snoring between times was the loudest I’ve heard.

I made an urgent appointment to see the GP. We were lucky that we saw our family doctor this time. Up to this point we had only seen different locums. He listened to the whole story, looked in my son’s mouth and saw “the lump”. He sent us home with the promise that he would be making some calls for us and that he would be contacting us as soon as he had something sorted out. The following lunchtime we had a phone call from him and we were asked to attend the children’s ward again. I dreaded going back to the place where they had been so uncaring before.

However, this time it was totally different. They were expecting us and we were greeted by a lovely nurse and seen by an equally lovely senior consultant. They took bloods and they arranged for an immediate CT scan. We then waited for the results, which came that very same day …

23rd December 2005.

My world fell apart.


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  1. Pingback: Rhabdomyosarcoma: Part Two | Going to Great Ormond Street | Waiting for a biopsy – Marie-Céline

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