I live with my partner Mike, daughter Aleysha who is undiagnosed and my son Jensen in South Wales.
Aleysha has had migraine episodes for three years now always between October to March. The paediatrician diagnosed her with chronic migraines and they are really debilitating. They are like a virus with flu-like symptoms. The paediatrician and neurologist haven’t been able to give an explanation for them.
When she has these migraines she can’t wake up and it’s as if she’s been drugged. She can’t move or remember anything and her behaviour changes, like she’s a little child. She’s not aware of anything after she comes round; it’s a bit like a hangover.
Aleysha also has asthma, allergies, constipation and a generalised anxiety disorder. I suffer from migraines too and have fibromyalgia. I also have hypermobility syndrome and I think she has it too. She has laxed joints, suffers from hand pain and problems with her legs – they give way and she fell down the stairs twice at the beginning of the year.
Her condition has a big impact on her because as the only diagnosis she has is migraines, people think that she can just take medication and go to school. She is allergic to ibuprofen so that makes it harder in terms of pain relief. Her heart goes fast – they say it’s anxiety but she’s not anxious when she gets them. Her school have been brilliant as she is always on top of her work but the welfare service can be difficult because of Aleysha’s attendance – when she has the migraines they can last for four to five days at a time spaced out. Her brother Jensen has had to miss some school too when she has migraines. Jensen is autistic and I can’t always focus on him I have to focus on Aleysha because I don’t know what’s wrong with her.
Having an undiagnosed child is challenging as we always have services on our backs. Sometimes people make me feel like I’m making things up as we don’t have any evidence. They say if there is nothing written by a professional it’s only my word. I’m trying to fight to get the right support and it’s hard when people are on your back as it’s more pressure.
We don’t know what is wrong with Aleysha but we can see the way it’s affecting her. We have taken videos and if you see her on a good day she’s not the same person as when she is suffering. A diagnosis would make things easier. She’s such a smiley person and professionals look at her smile and don’t see behind it. They think she’s fine but she isn’t. Currently Aleysha only has yearly appointments and we are still waiting for an overall diagnosis.
Aleysha is a bubbly smiley, happy kid, always does her best and takes a lot of pride in her work. Even when gets migraine episodes she smiles through them. She loves art and reading. She is also involved with young carers, which is a good confidence boost.
When Aleysha was in Royal Glamorgan Hospital for a night I saw a SWAN UK poster in the waiting room. After googling SWAN UK I phoned up and joined. As a member, I can post in the Facebook groups and I know I’m not on my own. I’ve been bowling with some SWAN UK members and felt comfortable. It was the first time I’d spoken to anyone about what I’m going through and with people in similar situations.
Before I was on my own but now I have more support.