Hello, Donna here from Flowers’n’ Plaid Homeschool in Brisbane Australia. We have 6 children and 2 of our daughters have Epilepsy. Caitlin 19 and Lucy 4.
This is our story.
Both girls have Tonic Clonic combined with Myoclonic seizures. Our girls also suffer Complex Partial Seizures but the handling of this is the same. Epilepsy is a common chronic neurological disorder characterized by recurrent seizures. The list of forms or manifestations of Epilepsy is not narrowed to just these two. This is just the two we mainly have to deal with. There are over 40 different types of epilepsy and each type of epilepsy presents with its own unique combination of seizure type.
After 19 years of managing Epilepsy you tend to take it a little in your stride. A quick squirt up the nose of Midazolam when seizing for Lucy at this stage and life long medication for Cailtin. Most times, the proper emergency response to a generalized tonic-clonic epileptic seizure is simply to prevent the the girls from self-injury by moving them away from sharp edges and carefully rolling them into the recovery position to avoid asphyxiation. Timing the seizure is important as the longer they are seizing the more at risk they are of permanent damage to their brain due to lack of oxygen.
If a seizure lasts longer than 3 minutes, or if the seizures begin coming in ‘waves’ one after the other – then Emergency Medical Services should be contacted immediately. Prolonged seizures may develop into status epilepticus, a dangerous condition requiring hospitalization and emergency treatment. Lucy has required CPR as her breathing and heart stopped due to a prolonged seizure.As parents with experience you tend to become an excellent judge of what you can manage & what needs further assistance. Epilepsy is usually controlled, but cannot be cured with medication.
Important Thing to Remember
Objects should never be placed in a person’s mouth by anybody. That is an old wives tail that a person can swallow their tongue. However, it is possible that the person will bite their own tongue or inner cheek during a seizure so don’t panic if you see blood coming from their mouth. You are probably thinking ‘don’t panic’,if you were there you would already be panicking!! Another important point if you are faced with this . Take a deep breath yourself. I know when Lucy required CPR I was on the phone with 000 (911) and i just wanted to totally freak out!! But I was all she had at that point and it was a case of freak out and she could die. So deep breath.
What Am I Talking About:
Tonic Clonic
This type is what most people think of when they hear the word “seizure.” An older term for them is “grand mal.” As implied by the name, they combine the characteristics of tonic seizures and clonic seizures. The tonic phase comes first: All the muscles stiffen. Air being forced past the vocal cords causes a cry or groan. The person loses consciousness and falls to the floor. The tongue or cheek may be bitten, so bloody saliva may come from the mouth. The person may turn a bit blue in the face. After the tonic phase comes the clonic phase: The arms and usually the legs begin to jerk rapidly and rhythmically, bending and relaxing at the elbows, hips, and knees. After a few minutes, the jerking slows and stops. Bladder or bowel control sometimes is lost as the body relaxes. Consciousness returns slowly, and the person may be drowsy, confused, agitated, or depressed. My girls usually just go to sleep.
Myoclonic (MY-o-KLON-ik) seizures are brief, shock-like jerks of a muscle or a group of muscles. “Myo” means muscle and “clonus” (KLOH-nus) means rapidly alternating contraction and relaxation—jerking or twitching—of a muscle.
Even people without epilepsy can experience myoclonus in hiccups or in a sudden jerk that may wake you up as you’re just falling asleep. These things are normal.
In epilepsy, myoclonic seizures usually cause abnormal movements on both sides of the body at the same time. They occur in a variety of epilepsy syndromes that have different characteristics.
WHAT DO YOU DO? First Aid Seizure Poster
WE NOW KNOW
* While everyone’s experiences with this is different and saving their life is paramount, my experience has been over the almost 20 years that the tune most Doctors are singing now to me is “We Now KNOW”.
*We now know that some children are genetically predisposed to Immunisation Acquired Epilepsy and mine are.The world of Science are slowly chipping away at genetics. (please do not email me about this topic as I know it’s an emotional debate & one I will not enter into in a public forum)
* We now know that some of the medications given as standard treatment cause infertility. If you are heading down this road with your young child ASK THIS QUESTION. I didn’t 20 years ago and now have to watch my daughters chances of having babies seriously slipping away. I didn’t make that mistake this time round. I have hindsight on my side with Lucy. Ask this question!! It may seem silly when they’re 4 but when they’re about to get married and have to face this reality you will have wished you asked. I know I sure wished I knew to asked.
* Research your options. There’s a lot of research and work going on out there in Medical land. Check it out and don’t be afraid to ask the hard or silly or what if questions. I have hindsight, you may not, God willing, get that chance.
~Donna
Yep – ‘we now know’ – the three most annoying words a doctor can say. All good advice -but the thing you didn’t write that you do best of all is making sure that the girls lives are not defined by epilepsy but by all that they are.
Thanks for the great information!
Great post! My son has tonic-clonic seizures and the more info people have about them, the better!
Also, my other son has bipolar…where can I find “This is not my mind – Living with bipolar”? Sounds like some good reading!
I submitted it to Or So She Says.. before the Epilepsy post. They haven’t run that one so if they decide not to run it I will on my blog. Just ask Or So She Say’s…?
*I wrote both the articles with Cait’s permission.
I heartily agree with Kim – do not let epilepsy define your child or more importantly, your elationship with your child. My brother was diagnosed at around 11 and his relationship with my father became totally defined by “Did you take your medicine?” This has gone on for past 27 years and shows no sign of changing.
Understanding is a key. Each person has different actions, and reactions. I am just over 5 years into a child with seizures. It is part of life, as you said taking in stride. We do not limit or stop our 13 year old daughter from anything. We include ourselves to keep her save. I just wrote about her on our blog. thank you for a great article.
Melissa