Ragdoll Mummas share epilepsy home truths

Why is this happening to my child? Why can’t they get a break? Will this shit storm ever end? If you have a child with epilepsy you’ve probably asked yourself these very questions and many more. As Ragdoll Mummas our list of questions is long. Some of our questions can’t be answered, but we have started a Q&A list we’d like to share to give you some insight into the life of a Ragdoll Mumma. We will be featuring a regular Q&A series on our blog. We’d love it if you too would share your answers to our questions in the comments.

So here goes (dramatic quiz music playing in the background), Ragdoll Mummas your questions start now….

WHAT WAS YOUR CHILD’S FIRST SEIZURE LIKE?

Ragdoll Mumma Kelly:  Unimaginable…I had no idea that it was a seizure. He was cold, blue, drooling, lifeless, eyes open gazing at the ceiling, unable to respond to my desperate pleas, he looked like he had had a stroke, and he struggled to breathe. I remember when I picked him up and held him, he was floppy like a ragdoll and then he began to shake. It went on and on. An ambulance came; a doctor came and gave him rectal diazepam. He was rushed to the nursing post that was 40 minutes from our home. He remained unconscious.  The RFDS (flying doctor) transported him to our capital city 600 kilometres away where the children’s hospital is located. He remained unconscious. There was another ambulance ride from the airport to the hospital where he was stuck in a cubicle in the emergency department. A doctor came to assess him. She quickly left and then he was rolled into another room where doctors and nurses clambered around him with distressed looks on their faces. I thought he was going to die.  I have never cried so much as I cried that day. Almost 12 hours after it began, the seizures stopped and he started to come round. He spent five days in hospital. We were sent home and told to get on with our lives and that it may have been a “one off”.  No medications and no recovery meds were prescribed. It took him almost three months before he could talk properly again. We noticed he’d become very clumsy and was falling down more often. He was diagnosed with epilepsy three months later. In hindsight, all the times he had fallen asleep during the day or flopped head first into his dinner, that we just put down to a kid who just needed extra sleep, were probably signs of seizures.

Ragdoll Mumma Zoe:  Okay I’m going to attack this question with three seizures, two we had no idea that’s what they were. The first one we heard Lizzy vomit in bed and we realised she was choking and going blue. Scott picked her up and took her into the bathroom and Scott had to clear her mouth out. She started breathing and then went floppy and then came round. We put that one down to being at a party that day and eating too much food. The signs were all there we just didn’t realise it. The second time Lizzy woke from a sleep and was sitting next to me on our bed she was chatting away then went quiet and floppy, her breathing and colour changed and then she projectile vomited. We drove her by car to hospital and were told it was gastro. Again the signs were there we just weren’t reading them properly. The one I class as her first because it was when we realised what was going on. Lizzy had gone to sleep and I had popped up to the shops while my father in law looked after her. I walked in 15 minutes later, walked into her room and found her sitting up and floppy she looked like she had a stroke. I was saying over and over again as I carried out of her room “Lizzy, Lizzy, Lizzy,” but she wasn’t there, lights on but nobody home. I rang the ambulance and as I did she projectile vomited like the exorcist all down our hallway and she was still out of it. Eyes deviated, breathing altered, pale and floppy like a “ragdoll”. I placed her on our bed into recovery position and the ambos arrived shortly after, the female ambo took one look at her turned to me and said she is “post ictal” that’s when it clicked they were seizures. The seizure lasted 30 minutes in total. That was the beginning of a wild ride of status seizures that followed over the next year. Status in some way or form has been Lizzy’s foe for many years.

IS THERE ANYTHING POSITIVE ABOUT EPILEPSY?

Ragdoll Mumma Zoe: Hmmm Epilepsy is positively fucked! And I suppose I would add that it made our whole family stronger and we have met the most amazing children and families over the last eight years.

Ragdoll Mumma Kelly: Really, who thought up that question?  (Oh it was us!) No, there is nothing positive. I’ve met some incredible and amazing people because of epilepsy, but I would gladly give up the friendships for epilepsy not to be part of our lives.

HOW MUCH SLEEP DO YOU GET?

Ragdoll Mumma Zoe: Sleep, oh how I miss thee. Well in the first couple of years I didn’t get any or if I did it was in small increments. Lizzy would sleep next to me while I watched late night television and then dozed all night. We got a baby monitor and I got a bit more sleep and now eight years down the track my body is so used to lack of sleep that I still don’t get much. I do recommend a nanna nap whenever you get the chance.

Ragdoll Mumma Kelly:  Sleep??? Bahahaha. Snort! It can be anywhere between four and seven hours a night (with interruptions). My son also has sleep apnoea and uses a cpap machine to help keep his airway open at night. So I do tend to check him during the night. Fatigue is a seizure trigger for him too. So when the shit gets real it’s normally when he’s waking up or falling asleep. Unlike Ragdoll Mumma Zoe, I don’t do nanna naps (Snort! Aren’t they for old people?)

HOW HAS IT IMPACTED ON YOUR KIDS?

Ragdoll Mumma Zoe: It could be a three page essay on how it’s impacted on my kids, but I will keep it simple. For both girls it has opened their eyes way too early to things they didn’t need to understand or have to learn to do. Answering doors for ambulances, watching a sibling have seizures, having important days that kids look forward to like birthdays, sports carnivals and performances taken away because of seizures. Being attacked when your sibling is out of control, listening to a sibling screaming for hours and not being able to do anything about it and coming second best when every night involved seizures. If I was to pick three words to explain the impact on the girls they would be unstable, stressful and consuming. The impact has also given them qualities they will take into adulthood, they both have empathy, resilience and a never give up attitude.

Ragdoll Mumma Kelly:  For our child with epilepsy it has been tough, he often feels excluded and different (in a bad way) because of epilepsy. It has also been completely crap for our other kids who I feel have missed out while we’ve had to deal with our son’s ongoing medical and social issues. No child wins in an epilepsy family. No child should have to watch their baby brother have seizures and see him karted off in an ambulance not knowing whether he’s going to be okay. Epilepsy has made them all a bit tougher and more caring than most kids their age.

WHAT’S THE MOST FRUSTRATING THING ABOUT EPILEPSY?

Ragdoll Mumma Zoe: Another Essay……..? On a personal level it’s frustrating because of the unpredictability of seizures and how you always feel on edge even when things are good. My big picture frustration is the lack of epilepsy awareness and how significantly it can impact on both a family and individual’s life. Other conditions seem to get the limelight or are better understood by the general public. I also think that the allied services that are needed to support a child with uncontrolled epilepsy eg physiotherapy , occupational therapy and speech should form a holistic approach to management of a child’s health and wellbeing and they are not funded appropriately or it’s a postcode lottery on what you may be able to access for your child.

Ragdoll Mumma Kelly:  There is no cure. I just want to take it all away from my son and tell him that it’s gone forever, but I can’t.  Kids aren’t supposed to be brave and strong. They are supposed to be out having fun and being kids. Epilepsy robs them of a “normal” childhood. It’s not fair and frustrates me beyond belief. No one has an easy answer or cure for epilepsy and the treatment plans are trial and error. My son shouldn’t be a guineapig. It’s also frustrating there seems to be a lack of support and services for epilepsy. The waiting times to see a neurologist privately or publicly are long. The neurology support services are even longer – we waited almost a year for our son to see a psychologist through the public system, he sees an occupational therapist every three months and we had to find and pay for him to see a speech therapist. It’s just not fair.

And the STUPID things people who don’t know anything about epilepsy say (Yes there will be a separate post on the ridiculous comments made!)

*PLEASE SHARE YOUR ANSWERS IN THE COMMENTS. TAKE CARE, Z&K.


Image courtesy of samuiblue at FreeDigitalPhotos.net

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