Fighting For Understanding

Fighting for understanding 

This year for Migraine Awareness Week we have been focused on migraine in young poeple and how to many are left misdiagnosed and misunderstood, leading to them missing out. We spoke to Harriet about how her daughter, Jocelyn, has been affected by migraine and the struggles they faced in getting the right diagnosis. 

"My daughter Jocelyn had been complaining of tummy aches and feeling sick for as long as I can remember! She had an abdominal ultrasound when she was about 4 and a blood test, but nothing was found. Her GP first suggested migraine when she was about 5, though a formal diagnosis only came finally from a paediatrician when she was 6. When she was 8 we went for further help and it was confirmed again by another paediatrician. I was relieved on both occasions and she was referred for tests for chronic and coeliac which were negative. Abdominal migraine was diagnosed by exclusion.

We do have a family history of migraine with headache symptoms, but I had never considered it as I had never heard of abdominal migraine. I was shocked but relieved to be given a reason for her symptoms which had been going on for years!

Jocelyn hated going to the hospital and having all the tests and missing school. It made her feel different. Jocelyn’s school have no idea what abdominal migraine is. We have started to educate them and for the most part they have been sympathetic. But apart from the school nurse giving her a hot water bottle, allowing her to lie down or giving her calpol or calprofen and ensuring she isn't made to eat if she doesn't want to, there is little they can do. She finds it increasingly difficult as she gets older… asking if she will always have them... and why her. She was too young when diagnosed to really understand. She just wanted to stop feeling sick.

There seem to be no food or emotional triggers we have been able to identify, her attacks come out of the blue and can last up to about ten days. It comes in batches so she can be fine for say 6 months and then have attacks every 3-4 weeks that last 10 days. It becomes confounded by the fact that she also feels sick when she is hungry so we try hard to ensure we also have a snack and try to keep her blood sugar level stable. Calpol and Calprofen sometimes help but are not reliable. We are waiting to see a paediatrician to discuss whether she can give my daughter any medication when she has a bad patch."

Jocelyn said “I don't really mind talking about my migraines. My friends sometimes ask me about it but I am not embarrassed. They are curious and the girls are sympathetic....but the boys say it is weird. There is one girl who thinks it's stupid and talks about my 'stupid migraine'. Teachers are sympathetic but didn't know about it until we told them. It helped when they actually saw how pale I look when I have a migraine...as I think it helps them believe there is actually something wrong and that I am not pretending… more education is definitely needed.”

Harriet said “Migraine has really affected my daughter. When feeling sick she just sits by the toilet as she is scared of being sick. There have been two or three nights when she has spent the whole night by the toilet not sleeping at all. If at a party she will come and sit on my knee or sit by the toilet. She can't do anything when feeling sick. She has lost weight and is increasingly less interested in food as she associates eating with feeling sick now.”

We here at Migraine Action are working hard to support individuals all over the country just like Harriet and Jocelyn, by providing the information, advise and support so desperately needed to whole families. We want to help all those who are misdiagnosed, misunderstood and missing out to enjoy a normal childhood. Please show your support by donating to Migraine Action and help us fight back against migraine misconceptions. 

If you would like more information on migraine or would like to get involved contact us at info@migraine.org.uk or call us weekdays 10 am - 4pm on 08456 011 033


For further information on migraines in young people, for parents, teachers and schools click here > 

 

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