These pictures were taken over two months ago, but I've waited until now to put this post together. Why? Because I didn't want to tempt fate.
When Martha Grace went into Atrial Fibrillation last November we were told in no uncertain terms that she would be prescribed Amiodarone for the rest of her life. It is used to slow down the patients heart rate; Martha needed 20j from the Cardioverter Defibrillator to return to a sinus rhythm that day - the hope was that by tweaking the settings of the pacemaker and prescribing Amiodarone we reduced the risk this happening again.
It became part of our routine when we finally brought her home, it was added to her 8pm feed and was just one of medicines we gave her throughout the day. We were just grateful to have her home. She needed 22mg but the lowest dose tablet made is 100mg.
We would have to crush the tablet down with the pill crusher the add 5ml of water and mix together. We would then draw back 22ml of the solution and add it to her SMA High Energy feed at 8pm. It became part
of her daily drug routine.
of her daily drug routine.
Dr Ian Sullivan wasn't available for her 1st outpatient appointment in March, we were seen instead by a Cardiac Registrar who had looked after Martha countless time during her 10 week stay. Karina said she was reluctant to make any decisions about taking Martha off the Amiodarone without first running it by Dr Sullivan. We were a bit taken aback because we had previously been told she was would be on it forever; but Karina said it wasn't good for Martha Grace to take it for an extended period. You only have to read the side effects on the leaflet that comes with the tablets to see why...
Very common side effects (probably affecting more than 1 in 10 people):
- Blurred vision
- Sensitivity to light
- Feeling sick
- A metallic taste
Common side effects (probably affecting fewer than 1 in 10 people):
- Slow pulse
- Disturbed sleep patterns
- Liver problems (enlarged liver, jaundice, liver failure)
- Shortness of breath
- Thyroid problems
Uncommon side effects (probably affecting fewer than 1 in 100 people):
- Difficulty balancing and walking
- Muscle pain and weakness
- Irregular pulse / dizziness
Very rare side effects (probably affecting fewer than 1 in 10,000 people):
- Very slow pulse
- Chronic liver disease
- Progressive blindness
- Vertigo (dizziness)
- Skin rashes
- Hair loss
- Scaly and flaky skin
- Inflammation of the veins and problems with the blood (you may notice bruising and nose bleeds
You are also warned to AVOID drinking grapefruit juice whilst on treatment with Amiodarone Tablets. Grapefruit juice contains some substances that can change the way these tablets work.
Your probably reading all this and wondering what the hell we were doing allowing Martha Grace to be prescribed this medicine for as long as she was? I thought the same thing when I'd read other peoples experience of the drug on online forums...but there is one thing that almost everyone said - that their Consultants wouldn't have put them on it if there weren't any benefits of taking the drug - and if the benefits didn't outweigh the side effects.
When we took Martha Grace for her outpatients appointment, the results of the 24hr holter were reviewed and it was decided that Martha didn't need to take Amiodarone anymore; rather than take her off completely in one go we had to half her dose for four weeks and then stop it completely. That was on the 11th October and I'm pleased to report that Martha has been doing fine since.
A year on from the most frightening time of our lives, our little Hero and CHD Warrior - is 100% drug free.
I appreciate that there are some people for whom Amiodarone will not work. I know that for some people the side effects are so severe it has to be discontinued. But in our experience - Martha coped brilliantly with it; please don't be put off by the side effects if your child does require Amiodarone.
The purpose of our blog is to raise awareness for Congenital Heart Defects and offer hope to families who are about to begin their journey. If it can happen to us then it can happen to anyone. Please consider sharing this post using one (or more) of the social media icons at the bottom of this post - it might reach someone very much in need. Thank you xx