Tuesday, June 15, 2010

EPILEPSY AWARENESS

We have 2 daughters with Epilepsy. Caitlin 19 and now Lucy 4. Last night Lucy had 1 Tonic Clonic seizure and several Myoclonic seizures. Our girls also suffer Complex Partial Seizures but the handling of that is the same.

After 19 years of managing Epilepsy you tend to take it a little in your stride. A quick squirt up the nose of Midazolam for Lucy at this stage and life long medication for Cailtin. This is except of course when they actually do need CPR but usually we just manage them at home. The Doctors advise seizures lasting more then 3 minutes require Ambulance transportation to the hospital. As parents with experience you tend to become excellent judges of what you can manage & what needs further assistance.

So 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. (Tongue swollowing is an old wives tale and do not try to force anything in to their mouth to hold their tongue) 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.

The list of forms or manifestations of Epilepsy is not narrowed to just these two. This is the two we mainly have to deal with.



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 Immunization Acquired Epilepsy (please do not email about this topic as I know it is a hairy debate & one I will not enter into in a public forum)and mine are.

* 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 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 are 4 but when they're about to get married and have to face this reality. It was a question I wish I had 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.

3 comments:

Kim said...

Is it all ok again in your house this morning - obviously it must be since you are blogging - but do you want me to take the girls or anything?

One of Tom's most frightening symptoms fron Tonic-Clonic seizures was that he had mild to quite severe memory loss for around 12 hours after the seizure - things like not remembering his siblings - what year it was and so on.

Donna said...

Yes the before and after effects are worse then the actual seizure at times. We knew something was coming because Lucy was just getting so foul. Just ask Roger about Tithing settlement. It was Monday night just a lag in blogging.

mtgg88 said...

Congratulations on your 1000 visits!