Cardiology FAQ
Is it common to have an issue with a child regulating his body temperature – starting to go blue after 5 minutes swimming but so hot in bed at night he can hardly be touched?
The issue with body temperature is seen in neurological conditions such as CFC and Costello and sweating seems to be quite common in Noonan Syndrome but it does seem to diminish with age.
Question asked and answered at our family’s day 2015
My fifteen-year-old granddaughter has hypertrophic cardiomyopathy and has very heavy periods. Can she be given progesterone or the contraceptive pill to help with the period problems taking into account the hypertrophic cardiomyopathy?
This would need to be checked with her own cardiologist. It’s true that there are certain heart conditions where the oral contraceptive pill is contra-indicated and that’s because in some situations there’s an increased risk of stroke. There are some other treatments for very heavy periods that may be considered but again you may have to be guided by specialists such as a gynaecologist.
Question asked and answered at our family’s day 2018
My son bruises very easily when he falls over and the bruises last a very long time. He’s unfortunately got both pulmonary and aortic valve problems so he’ll need an artificial valve when his heart deteriorates to a certain level and then he’ll have to go on blood thinners. What considerations would there need to be regarding his bruising issues.
There has been a fairly large study of clotting factors in children with Noonan’s which found that there were occasional issues with factor 8 clotting agent but usually these were not causing serious bleeding although they did cause bruising more easily. In rare cases of post-operative bleeding, it was relatively easy to correct that with fresh blood which did contain the clotting agent. If it did come to an operation for the child in question, the specific needs would be looked at carefully and there were options as regards blood thinners as new ones were being developed, although very few were licenced for use with children at the moment. There are artificial valves which don’t require anti-coagulation but as in most cases, it very much depended on the individual case and there would be very detailed investigation before a decision was made. There had however been several cases where Warfarin had been used with children with Noonan’s.
Question asked and answered at our family’s day 2015
A lot of NS children have had open heart surgery for pulmonary stenosis. Will future developments in technique mean a less invasive treatment?
Less invasive techniques were available for more straightforward cases to open up a pulmonary valve but this “balloon” procedure didn’t work as well when the valve was very thick or abnormally formed. In these cases, surgeons often choose to go for open heart surgery as the result is likely to be better first-time round. But in many individual cases of children with NS it was possible to do the less invasive balloon dilation technique and hopefully that these techniques will improve in the future.
Question asked and answered at our family’s day 2015
What are the chances of my child with pulmonary stenosis who had open heart surgery in the past having more surgery as she gets older?
It’s very variable. It depends on the initial condition and the initial procedure performed. It’s not unusual for individuals who’ve had particularly surgery to the pulmonary valve for that valve in time to become leaky and often that does require further procedure. It’s not universal by any means and it depends on the shape and the look of the valve – the morphology of the valve and the procedure that was performed. It is well established that anyone who’s had an intervention to their pulmonary valve should have lifelong follow up. There are adult congenital heart services around the country which would provide that sort of follow up.
Question asked and answered at our family’s day 2016