The big news this week is that we finally have a concrete diagnosis of Charlotte seizures and hallucinations. We have had a few over the past three months, but none which explained all her symptoms. She has seen a neurologist privately who diagnosed her with non-epileptic seizure disorders; a psychiatrist who said her eeg showed myoclonic jerks and that he thought she might have a sleep disorder; and a general neurologist twice who just kept reiterating that she did not have epilepsy, but said the only thing for Charlotte to do was research and cure herself (!). After pushing him and insisting that Charlotte couldn’t possibly live this way indefinitely, he referred her to a specialist team at St George’s in London.
Thank God he did, because Charlotte had a video appointment with the team leader on Wednesday. It was SUCH a good appointment. He was calm, interested and most importantly took her seriously. He is redoing all her tests himself just so he is confident that nothing else is going on, but he is pretty certain that she has Functional Neurological Disorder. This covers both her seizures and the visual and auditory hallucinations. He is referring her to a specialist physiotherapist to help her to learn to retrain her muscles and gain control over the jerks (she often hits herself on the head, and jerks her neck and head without any control or ability to stop herself) and a neuropsychiatrist team to help her control the hallucinations. Her hallucinations are different to ‘normal’ hallucinations because she knows they are not real even as they are happening. The specialist she saw on Wednesday said that her disorder is treatable with the right help and support.
I am in two halves – one part of me is so incredibly grateful and happy and relieved that we can finally start the process to get Charlotte well again. The other part of me is absolutely exhausted. I can’t even begin to express. It’s like I’ve held it together for so long (barely!) and now I am going to be sharing the responsibility for Charlotte’s care with many health professionals. I am so relieved. Never have I felt so impotent or so completely and utterly out of my depth. And lonely. Not for company, but for support. Watching a child get iller and iller and not being able to do anything about it is terrible, horrible, no good…
For the first time in a long time, I am optimistic about her future. Yes, she has three diagnosed disorders (CFS, Fibromyalgia and now FND) which is not good, but we do at least know what we are fighting against now. We are not groping around in the dark, trying to get to who-knows-where destination. There is a plan. And people in the know are helping us to implement the plan.
We are not alone.
If any of you have children who are ill or you feel are not quite right, fight for them. Fight with all your might. Do not be fobbed off by doctors who do not know. If a medical professional does not know then ask to see someone else. Ask for a second opinion. And don’t give up until you feel comfortable with the answers the medical team are giving you.
The three diagnoses she has are often seen in someone with Fibromyalgia. One begets the others.
Charlotte is a new girl today. She has been heard. She has been understood. All those weird symptoms are not so weird when they are finally presented to the right professional. Suddenly everything makes sense. I do not need to fight anymore. I can breathe.
I know we have a long journey ahead of us, but all is well. Charlotte is one of the strongest people I know. Ironically we named her Charlotte because it meant ‘strong woman’ (after she had a horrendous birth, nearly dying). She said to me today that she feels she has maybe suffered this much over the past four years so that she could help others in some way. And I am sure she will, too.
Charlotte has always had a voice, and she has never had any problem using it 😉