Sunday, 27 April 2014

My poorly boy part 5

Well I have been so busy with all that has been going on I have not been able to keep the blog updated. Since the last post everything stated below has happened.

My son has been to see paediatric cardiology team under Dr Till at The Royal Brompton. After he was admitted as a day case patient for a scan of his heart. See previous blog.

When he was admitted for his scan, an echocardiogram, we were given a bed and he had an ECG done, these are not his favourite things but he is getting used to them, now that he has had so many. After the nurse did this I was told there would be a bit of a wait before we were called in for the scan.

A short time later we were taken by the nurse to the room where my son would have his scan. They use an ultrasound scanner, the same equipment that is used to show a pregnant women her baby, to scan his heart. My son really does not like laying on hospital beds but he was really well behaved, bribery of a new toy car did the trick. The scanning lady put some gel on his chest and began scanning him. I watched the scan pictures while my son watched a film that was on a TV screen on the wall at the bottom of the bed. It was interesting to see my son's heart, not that I knew exactly what was being shown. I could make out the valves but that was about it really. This procedure was over in about 15 mins.

I then took my son back to his bed and we had to wait for the doctor to come and discuss the results with us.

The two doctors didn't take long to come and see us. We were told that the scan was normal so that was a relief. While I was trying to listen to the doctors my son was running round causing mayhem, and he promptly climbed up on a chair and fell off. It was a good thing he was wearing his helmet which my mum got him or he might have had yet another bump on his head!

So the plan was to put an event monitor on him for two weeks and hopefully he would faint and the doctors would be able to see what was causing all this to happen. We went and had this monitor put on. See photo below. After leaving the hospital we went back to my mums to wait for my husband and daughter to come and pick us up after she finished school for the day.

Now unluckily for us we all came down with the winter sickness bug! My son started with it first which seemed to stop him from fainting, I think mainly because he was laid down all the time. Then two days later I came down with the bug and within two hours so did my daughter.  My poor husband had to look after all of us taking two days off work with only one paid as emergency leave the other he had to take as holiday!  

But lets get back to my son and his fainting.
The monitor was on my son for 10 days and in that time he fainted 4 times. With the last faint being on the day we went to see Dr Till's team. We got there early and my son had to have another ECG, this is normal practice when you see a cardiologist.

After a little wait we went in to see the doctor who introduced himself as Dr Roses-Nouguer. He asked all sorts of questions regarding Paul's medical history and also mine and my husbands all the way back to our parents and our uncle's and aunt's. My sister is also being investigated as she is now fainting too, her doctors currently think she has a very mild form of Vasovagal syncope. 

After all this the doctor said that they also run a gene clinic and he would like to have us tested to see if there is a genetic link causing this, it will not help us but could help others in the future. The doctor thinks that my son also has Vasovagal syncope due to the history and the fact that the EEG came back normal. 

Now all we are waiting for is the results from the event monitor which will decide whether my son will be put on medicine or needs a pacemaker. 

He will need a pacemaker if he has any heart pauses or significant bradycardia. If not he will be put on medication, one of which I am currently taking myself. 

Our next appointment is in June and on the same day I am also seeing my consultant as I am having chest pains with pins and needles going down my arm. They come on suddenly last for about 10 minutes then go away just as quickly as they came. I have been to my GP while having one and the ECG has come back normal. So we are putting it down to stress but I have been told that if I get anything more painful or feel really unwell with them I must got to A&E.

So there you are, some eventful few months since my last post.


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