Seizures

800 seizures a day: our epilepsy story

Posted on Nov 14, 2014 | 3 comments

800 seizures a day: our epilepsy story

This week on the Firefly Garden, bloggers from around the world are sharing stories about their children and epilepsy. I suppose our story makes for pretty grim reading. But years later, with May’s seizures down to 1 to 2 a day and causing her very little distress, we feel it is a triumph. Here is the post and make sure to click on the links at the bottom to read other parents’ stories: My daughter, May, was born with a severe brain injury. She had seizures every day, from birth. She has taken, at various points, anti-seizure medications including Phenobarbital, vitamin B6 (Pyridoxine), Pyridoxial Phosphate, Topiramate, Sodium Valporate, Lamotrigine and Clobzam. The last four she is still on every day, twice a day. Even with those drugs, May still has seizures at least once or twice a day. But, when she was a baby, they were as frequent as three times every five minutes. That is 864 every day. Did I just write that? May had over 800 seizures a day? While you mull over those numbers, consider this: those were only the ones we saw. Some seizures don’t manifest themselves physically. It is a horrible thing to say, but May’s seizures were so frequent when she was a baby and toddler I’d discuss them as casually as the weather. People would stop to ask if she was shaking from cold or fear, and I’d respond, “Oh, no need to worry, it’s only a seizure.” They looked at me like I was insane. Most asked if they should call for medical assistance. “No, it’s fine,” I’d say. It’s a wonder no one called Social Services on us. 864 seizures a day. And yet, we never experienced any of the torment other children and their parents do: unconsciousness, urgent administering of emergency medicine, ambulances and hospital stays. At first they manifested themselves in a twitching of her arms and facial muscles – usually she’d continue on as if they’d never happened. If she was laughing when she started, she giggled through it. The doctors didn’t think the seizures would damage her brain any further. But, the seizures did interrupt activity and so we were told they could hurt her long-term development. So, how did we get from 864 seizures a day to 1 or 2? In short: medication. The long story: Read more at the Firefly Garden… And for more stories about epilepsy at the Firefly Garden click below: Sebastian’s journey with epilepsy Epilepsy: The Forest...

Read More

Where is the shock and anger?

Posted on Apr 27, 2014 | 13 comments

Where is the shock and anger?

I’m the mother to May, a severely disabled little girl, and I’m opening today’s post with a controversial statement: Your prayers are not enough. Thank you for praying for us. And for the 800,000 other families in the UK who are raising a child with disabilities.* It’s not that we don’t appreciate all the goodwill sent our way. But what about a prayer combined with a lasagne? We could really use a lasagne. Or a few hours off on a Saturday so we could do our shopping. Or for you to sign a petition calling for the end of welfare cuts. Or for more shopping malls to install changing places alongside their disabled toilets. Being able to change May’s nappy without lying her down on a pee-soaked floor – that would be helpful. Or, as Barbara Ellen suggested today in her Observer column: “Perhaps what disabled children and their carers need is not the expected reservoir of genuine but toothless public sympathy; rather, it is the return of shock and anger.” And where is that? When only 16% of mothers of disabled children can return to work and only 3% full-time, compared to 61% of mothers without disabled children: where is the shock? While at the same time, we witness the destruction of the welfare system that would support these full-time carers (and imagine how much unpaid, full-time carers save the country): where is the anger? When there is no ring-fencing of public funds for disabled children or carers – and the government cuts drastically the money local councils are given, the result is going to be an end to services. The end of speech and language therapy. The end of equipment. The end of respite care. Where is the anger? It is accepted these days for the country to take on the chin the idea that the government has to make “difficult decisions” in hard economic times. That “hard working families” deserve more. A year ago, we were preparing to take May into the hospital for major surgery. In the months leading up to it, my husband and I had been lying with her all night long while she screamed in pain. Held her day and night as her exhaustion sparked a series of seizures. “We never know. When she goes into these marathon sessions of pain and fevers and fits, I don’t even know for certain she will pull out again. Instead, I am literally inches from her while she screams every waking moment – now going on five days – and all the while the dishes pile up, cartons of Chinese food litter the kitchen and my schoolbooks sit in front of me never marked. In between worrying over how I will ever complete anything again because May refuses to let me put her down, I wonder if this day is going to be the day that she never comes back to us.” I would argue no family works harder than those where one parent stays awake half the night, every night to make sure they don’t have a seizure. No family works harder than those getting by on half an income, because no workplace is able to accommodate the sudden and frequent trips to the hospital they have to make. No family works harder than those with parents struggling with fatigue, bad backs and aching arms lifting their child from seat to walker to wheelchair. Hard working families do deserve more. Thank you for your prayers. Thank you for your kind thoughts. But, maybe also start with a lasagne. And then, together, we can tackle the rest. Where is the shock and anger? Comment to tell us what you think. A huge thank you...

Read More

When there is no answer

Posted on Feb 28, 2014 | 5 comments

When there is no answer

A couple of weeks ago, a professor running a vision clinic drew my attention to my daughter’s eyes. Her beautiful, big eyes. “She has very large corneas,” he said. “Do you know what happened to May? Has she been seen by the geneticists?” She has. In fact, she’s had two MRIs, many brain scans of various types, three lumbar punctures to her spine, blood tests (hundreds?), genetic photographic testing (where they examine her facial features) along with tests for Strep-B, infection and vitamin deficiencies. They’ve revealed nothing. “How was your labour?” the professor asked. “It was protracted,” I said bluntly. “68 hours.” “That’s probably it then. But, I could refer you on if you wish.” “Let’s say I did take May in for further genetic testing and they found something. Would it help her now? Would that information benefit her in any way?” “No. It probably would just give us more information.” “Then, I’d rather we didn’t. We’d be testing her for our own curiosity. It wouldn’t be right to put May through that.” I had another conversation with another doctor, a neurologist, three years ago after an overnight stay in a hospital to trial her with a new seizure medication. We’d been testing her for a year and a half at that point and had found no answers. I asked him: “How long do we go on testing May? How many tests are there?” “We could continue to test her forever,” he said. “New tests come out all the time. As doctors, we are always searching for the solution.” “But, will it help May? If we find out?” “Probably not.” “Then, I’m done. I’m done testing her. I’m done putting her through this.” Sometimes there is no answer. Sometimes life just deals you a bad hand. These doctors meant well, they really did – and it makes no rational sense. In life, we expect answers. But, the truth is they don’t always exist. There is no solution. There is only a little girl with half a brain. People are always asking me why. Why is she crying? Why is she having seizures? Why isn’t she sleeping? The definition of unbearable should be: when you don’t know why your daughter is in pain. More information isn’t the answer when no answer exists. It is an awful truth. But, I’ve come to think of it as the only sane approach. Acceptance isn’t about fixing the problem. It is about accepting the problem. I could shout and scream about it. I still want to demand answers. But, in the end I hope someone will lead me back to my  little girl. That she will be enough. They will take my hand and place it on her head. My little girl with half a brain, a half brained beauty. She is the...

Read More

My two-year old knows something’s wrong with May

Posted on Nov 25, 2013 | 5 comments

My two-year old knows something’s wrong with May

A few mornings ago, my husband was taking a shower and so didn’t hear May have a seizure. She cries in a thin and tremulous voice, and it is filled with terror. She still has at least one seizure like this a day, which is much better than it used to be. My husband was letting me sleep in, so I didn’t hear it either. Very softly, there was a knock at my door. “Mama?” a little voice said. “May-May’s crying.” I rushed out and held her in time to comfort her. Later that morning, Ieuan made himself shake. Just like May, his arms went rigid and his fingers wide. He made a crying, tremulous sound. He stopped, then started again. “You don’t need to do that, honey,” I said gathering him to me. “You are fine. May gets upset like that, but you don’t have to.” Ieuan knows something is wrong with May. He wants to comfort her. He brings her toys, her bottle and other things he knows she likes – but May can’t hold them or use them without assistance. The other day I found him in the living room feeding her a bottle as she sat in her chair. I find this both sweet and unsettling. He is old enough to know something is up, but not old enough to make sense of it. That will come though. We will walk a fine line throughout his childhood of allowing him to care about her and not asking him to take care of her. I used to think I wouldn’t have him help at all, to preserve his childhood. But he loves May, and I don’t think he can help but want to take...

Read More

What do you think of our theory about May’s pain?

Posted on May 11, 2013 | 7 comments

What do you think of our theory about May’s pain?

May started giggling last night. A frothy, snorting childish giggle that bore no resemblance to the screams of late. It was wonderful. But, May’s troubles were not over. My husband and I escaped for a few hours today, but only down the road to a coffee shop. I wasn’t there long before May’s careworker phoned. “She’s having seizures,” she said anxiously, “and they don’t stop. They last 45 seconds and then stop and start up again.” I raced home. It wasn’t seizures – to which our careworker apologised over and over again but, like I told her, this is the kind of situation where mistakes are welcome. It was the pain. May’s screams sliced through our afternoon. She stiffened and thrust out. Tears rolled down her cheeks. I sat with her alone in our front room. During one enormous scream, I glanced inside her mouth. Blood. May’s right upper gum was leaking blood out of her back molar. I set her down and grabbed some teething gel out of the kitchen. I rubbed a drop on her gum. One – two – three – four – silence. Silence. A little sniffle as May’s considered the absence of her pain. Her tongue darted in and out of her mouth, partially numbed by the gel. I breathed. A couple months ago, we received a letter from the specialist dentist that sees all the kids at May’s special school. At the time, she had two tiny nubs acting as molars at the back of her mouth. The dentist wrote to inform us that all of May’s teeth had come in fully. He was wrong. Now she has one tiny nub, and one fully formed molar. What I would have given to know that there was a possibility that May’s teeth had not fully pushed through her gums. Teething is an awful thing for all babies. But, it is worse for special needs kids who 1) can’t tell you what is wrong so you can help them, 2) can’t chew on things to accelerate the process and ease the pain, and 3) as a result, slow the whole process down taking years rather than months for the teeth to come in. Over time, babies’ gums harden. May is four years old. This leads to agonising pain: vomiting,  seizures, screaming… What I would have given to know this a week ago. Of course, we are only 85% sure this is it. We will never know for certain because May can’t tell us. We can only hope we are right, and hope we catch it next time if the other molar wants to pop through too. (UPDATE: We have since found at least three ulcers/cold sores the inside of her bottom lip, probably also a result of her teething as she has been grinding her teeth a lot. They look very nasty and are also being seen to.) Here is May (and me) an hour after her teething gel was applied. Photos really do speak volumes (click on the photos to enlarge):  What do you think of our theory about May’s...

Read More