Our ‘warrior’ this month is the lovely Tristan, his story is told by his dad Adrian, who is now one of our network of regional parent ambassadors. It illustrates why our focus at UKIST is on raising awareness within the medical profession to speed up diagnosis – as delayed diagnosis affects long term outcomes.
Tristan was born normally at full term and was perfect in every way. At first he was developing well, starting to roll and hold his bottle. At 2 months old we noticed some strange movements followed by constant crying. We took Tristan to see his GP and were told he may have a milk allergy and the movements were due to reflux. The GP then referred him to a dietician and we were told to try different milks and bring him back if he didn’t improve but give it a few weeks.
After 4 weeks of the movements getting stronger, constant screaming and multiple trips to the surgery the GP agreed something may not be right and referred him to a paediatrician but said the appointment could take up to 3 months to come through. We also enquired about the dietician and were told to expect a 3 month wait from referral.
Tristan got his referral appointment at 6 months old and the paediatrician picked up that his development was way behind his peers. She put a referral through for a MRI scan as she agreed something wasn’t right. As parents we felt a sigh of relief – we were told that we wouldn’t be getting the appointment for at least 2-3 months but finally we were going to get results.
During this waiting period Tristan was getting more and more distressed to the point where you couldn’t comfort him. At 8 months old we decided after seeing the UKIST awareness video on YouTube that his movements looked similar and we followed the advice given to take him to A&E. He was admitted and the doctor on the ward picked up on what we were seeing straight away. Tristan was sent for an EEG the following day.
We received a phone call the same night as the EEG from a neurologist who said we must take Tristan into to Queen’s Medical Centre as he needed urgent treatment. Tristan was kept in for a week and diagnosed with West Syndrome (Infantile Spasms). He started a course of prednisolone and we were given a plan to wean him off this and onto a course of vigabatrin.
Tristan is now 2 years old and has been IS free for nearly 6 months but it has left long term effects and he now has other types of epilepsy. He is a happy boy but his development is so far behind his peers.
Never ever let doctors persuade you that your intuition is wrong and be prepared to fight when you know something is wrong with your child.