I haven’t shared much about the last three weeks because, to be honest, I was so deeply affected by it that I didn’t know what to do or who to turn to. Three weeks ago Charlotte began some very odd seizure-like behaviour where her whole body would twist and contort to the left side and her mouth would clamp shut, preventing her from taking a breath. As her body relaxed she would then need to take a huge gulp of air. It was very very scary, for her and for us. They were happening every one to two minutes and sometimes could last up to a minute and during that minute she was unable to breathe.
They began on a Monday morning. I phoned her GP who told me to take her to A and E. Considering the last time she was taken in for seizures by an emergency ambulance (ie we hadn’t been the ones making the decision to take her) the staff at the local A and E questioned why she was there at all, neither she nor I wanted to go this time. However, they were worrying to watch and we didn’t have a clue what was causing them. So off we went. This time was very different. The triage nurse didn’t even triage us. Charlotte was taken to a cubicle straight away and after her blood pressure and heart rate were taken, she was quickly taken to resuss. Her blood pressure was 173/150 and her heart rate was through the roof. But nobody had a clue what was going on. They did various tests on her, but to no avail. And three hours later she was discharged, still having seizure like contortions. All they could say was that it wasn’t epilepsy. Yes. Thank you. We know that. Knowing that does not make these whatevertheyares any less scary. Wasn’t there anything they could give her to stop them, or at least decrease their frequency? But no. Any meds available would have worse side effects than the symptoms they would treat. Sigh.
I can not even begin to express the frustration and the sorrow at watching a beloved daughter get iller and iller and yet not be able do anything to help her…or even get anyone else who might be able to help her.
Reluctantly we took her home. Once home, she was still contorting and breath holding and had absolutely no control over her body. We took a video of her over ten minutes. In those ten minutes she had ‘seizured’ ten times, and stopped breathing for over a minute at a time in places. Literally one ended, she took a deep and desperate breath and then another began almost immediately. Gary and I were at our wits’ end. In sheer desperation we sent the video to the neurologists at St George’s, just needing some reassurance that she wasn’t going to die. This was over the Easter period and we heard nothing back.
After three days they began to change in nature. The clamping down of the mouth stopped, although the contortions continued. But they were confined to her head and neck. She was in an enormous amount of pain. Then she began doing these peculiar hand motions, like knocking at the door, or wagging her finger at us. She had no control of her arms. These motions became more pronounced over time, and she began making actions which were based on whatever we were talking about.
For example, at one time somebody said something about an elephant and she made an elephant trunk movement. Another time, it may have been swimming and she began making swimming motions. Then these were being repeated three times. Charlotte said she could feel a feeling in her tummy just before she made a motion and compared it to having an itchy nose that a sneeze then relieved. It was obvious now that these were tic like movements. For about a week we didn’t know whether to laugh or cry. Laugh because Charlotte has such an amazing personality and her tics demonstrated that in a very comical way. But we also wanted to cry because if this was going to be the rest of her life then her life was going to be unbearable for her.
Over the space of about a week, these tics got worse. She managed to suppress the need to make verbal tics, but this suppression made her physical tics worse. At one point she would need to do a tic three times to get relief and this increased to three times three so she was feeling a compulsion to do each tic nine times. At this point, we were not getting any medical help at all, and at times things felt helpless.
I did my normal research, trying to find solution to a problem we didn’t really understand. From what I could tell, treatment on tics focuses on trying to suppress the feeling. So we encouraged her to do that as much as she could. Tic like behaviour quickly becomes habitual, so I thought if she resisted it would at least not become habitual. I also took her off gluten as I read that it can make tics worse. Throughout all of this Charlotte was amazing. Ads, her boyfriend, was incredibly strong, resilient and stoic in the face of such absurdity, and remained firm in his love for her. I think poor old Lillie was affected the most. And both Gary and I were wondering how much more our family could take.
Over the following week (which was last week), Charlotte learnt to suppress the urge to tic to such an extent that apart from a few tic attacks each day, she has got them pretty much under her control. Given that at its worse she was tic-ing up to 1000 times a day, this was brilliant and gave us all hope for the future.
Yesterday, Charlotte had an appointment with a top neurologist, a Professor Edwards, at St George’s. She had been told that there was a long waiting time for the FND (functional neurological disorder) clinic, but she was seen within two weeks. He was AMAZING! He did a really thorough examination of her history dating back to her birth, and including all of her health problems in the last four years. He believes that all of her conditions are interlinked and that they all originate from a problem in the wiring of her brain – that the brain is sending electrical impulses which are causing the movement disorder. He said that everything she has experienced can be put down to this and that he would be following her care until she had been fully rehabilitated. And he believes she will be fully rehabilitated in terms of not just her movement disorder (the FND) but also from the ME and the Fibromyalgia. From what I understand she will be under the care of a neurophysiologist, a neuropsychiatrist as well as other health professionals from the FND clinic. He will be chasing up all the referrals and making sure she is seen quickly so that she can get back to the ‘business of being a normal teenager!’ And if she doesn’t see an enormous improvement in her symptoms in a fairly short time frame he will organise for an interdisciplinary team to work along side each other with Charlotte, which he will oversee.
Best of all, he emphatically reassured Charlotte that this was not in her head, it was not psychogenic and she was not making a big deal over nothing. This was a physical disorder that originates in her brain.
At last. She needed to hear that probably more than anything else. We have seen two other neurologists. The first said it was psychogenic seizures and they would go away at some point and the second said we just needed to do our own research and cure her ourselves (I kid you not). We have gone from one appointment to another without hope. Professor Edward’s has given us hope. He is absolutely sure that she can be rebooted and that her brain can be retrained to respond in a more regular way.
I don’t know what the future holds but I do know that Charlotte will face it all with courage, spirit and an irrepressible sense of humour. As for Gary and I, we have aged about fifty years in the last three weeks and I have taken up gardening. Enough said.