Last year my 15-year-old grand-daughter had an episode of seizures for two weeks and after much testing it was said she was having ‘pseudo-seizures’ so basically, they were saying it was psychosomatic. Since then she hasn’t had any more seizures but this year, we’ve had a couple of more problems. One, eating and drinking – she couldn’t swallow water without bringing it up. Having had many tests, again it was psychosomatic – there was nothing actually wrong with her. Then recently, about a week and a half ago, she had these awful stomach and leg pains, absolutely crying. Is this something that other people with Noonan Syndrome or family members have experienced? It seems to be about coping because although the symptoms are very real, the causes aren’t real?
There are quite a few psychological problems that sometimes occur in Noonan Syndrome. With any child who has symptoms that we can’t find an organic cause for, people might say they are psychosomatic. It’s very important to be aware that they could be a symptom of quite marked psychological distress for whatever reason, and if she’s had three episodes in a fairly short time then it might be worth getting a psychologist to see her. People need to remember that behaviour that’s perceived as bad or difficult is usually a symptom and with this type of illness, particularly as she’s had these three episodes, you just need to be confident there isn’t something underlying and distressing going on. The fact that there’s no organic cause for it and it’s been labelled as psychological doesn’t make it any less real. You have to bear in mind the impact it’s having on her and the people around her and psychology is a well-recognised area of medicine. We all have psychological issues on a spectrum so it’s learning how you can manage those things. What you need to be careful of is the fact that although she’s had three different areas that have been attributed to psychological issue you still need to be very sure that there wasn’t an organic cause for each of those in turn. We need to be careful that we’re not putting everything in the same basket as a psychological issue and failing to address something that does need treating. I think getting psychology input is something she has clearly demonstrated that she needs and you should try and push this with your GP or your local paediatric team. Clinical psychologists are available although waiting times are quite long.
Question asked and answered at our family’s day 2018