Tag Archive | epilepsy

Is it or isn’t it?

Do you wonder what a seizure looks like?  The fast and simple answer is: it’s different for every one.  Yea that’s not much help right?  Well the first think I can tell you is that in all the Tonic Clonic seizures BK has had none of them have looked like TV.  There are two reasons for this.  The first is it’s TV and they over-exaggerate the seizure.  The second is our little super star has passed her 2 years seizure free mark so all of her seizures happened at age two or younger.  The smaller someone is the smaller and weaker their muscles are.  So even though they classify BK’s seizures as convulsive, there is not much convulsing to be seen!  What you do see is her eyes are usually rolled to one side.  They are fixed.  Her head is usually drooped forward and in her case she draws her arms in as the seizure onsets, it’s just what i have seen over and over again, when her arm is braced for the IV to be in at the hospital that arm that no longer bends usually goes straight above her head.   If you touch BK during a seizure?  you would have no doubt, zero.  You can feel all her muscle fibers firing off at once but in no particular sequence.  This is what causes the “convulsions”  In larger people whose muscles are more developed or in people with specific types of seizures it can cause the TV version of repetitive jerking movements of the limbs.  But in BK’s case they said her body was just so small that there were not enough fibers all on the same rhythm to cause the jerking movements.

I have heard accounts from other moms that their child drools, that their child arches their back (BK has done this, but not always), some children have the jerking movement in the neck area so it looks like they are repeatedly shaking the head in one direction.  It all looks different.  The clues are going to be in the eyes, in the fact that they are unresponsive to you (yes even if you yell) and as I said, try touching them, what do you feel in those muscles?   Now I have no experience with febrile seizures, but in most cases that I have heard about they talk about the glazed look in the eyes, they will be fixed and often off to the side, like I described BK’s.  These kids also have a high fever usually over 102.  Febrile seizures tend to be short, but are very scary.  In some children they can be abnormally long, or they can be more complex.  Those are the ones you might have to worry about.  If it was your child’s first febrile seizure, I suggest calling 911 just like I talked about in my previous post.  But what you will find is that for a lot of kids they are told “its something kids out grow, no danger, just give a fever reducer any time the child’s temprature goes over 101”  and that is usually the end of it.  In rare cases rescue medications are prescribed and the parents keep them on hand at home just in case.  But what you will find talking to a large majority of parents who have children that have experienced febrile seizures this is not the case.

If you decide to call 911 what happens next?  In most cases by the time the paramedics arrive you child will have stopped seizing.  It’s up to you if you have them transported to the hospital, if you bothered to call though and you want them seen by a doc?  Let the professionals handle it.  That way should the child seize again they can provide appropriate supports en route, like oxygen.   Once you get there they will ask if the child has been sick?  Did they have a fever at home?  How high and go over medical history (long-term and that pertinent to the current illness).  Usually if your child has not seized again and the initial seizure was under 3 to 5 minutes most docs will set you free and send you home.   Should your child have a second seizure that’s when things get more serious.  It depends on the medical history and the particular doctor but CT scans, MRI’s, EEG’s and Lumbar Puncture are some of thing things that are often used in diagnosis.  EEG is short for electroencephalogram (you can see why people call it EEG!). It looks at brain waves and they are looking for specific brain wave changes that are indicative of seizure activity.  The MRI and CT scan are ways to look at the brain itself.  MRI is magnetic resonance imaging and can give some impressive details of the brain.  This is a good way to look for abnormalities called lesions.  BK has none, so I have not done much research on this area.  In fact the lesions they were looking for on her brain would have been indicative of  cerebral palsy.  If you read any of my earlier entry’s or you know BK, you know she developed her motor skills late.  So when at 7 months old she had her first seizure and could not even roll over unassisted, it was an obvious thing to look for.  Fortunately for BK, it’s not CP.   CT scan gives a more general look at the brain, they are usually looking for swelling or any indication of head trauma with this.   The lumbar puncture is looking for infection in the cerebral spinal fluid.  In BK’s case there was a Doctor who suspected Meningitis.   Her blood cultures and the fluid from the Lumbar Puncture did not show any evidence of bacterial or viral causes for her seizures.  So again, I didn’t look into it much.  I try not to scare myself  TOO much.

I hope that this general information is helpful to someone.  The point is there are so many variables in what a seizure will look like, how a doctor will proceed with treatment and even in the cause.  But very few parents ever have to be witness to a scary event like this.  For that I am thankful.  I would not wish it on anyone.  Maybe now that you know a little bit more you will be able to stay calm if you are ever faced with a person having a seizure in your future.  And I pray to anyone who read this blog and has children that you find the strength needed to advocate for your child for any medical problems they face.  You know your child best and you are their best advocate.  Educate yourself, learn to speak the language of the medical professionals, it will serve you well.  I am frequently asked if I am a nurse or if I work in a medical field.  The answer is no, I just have had to learn a lot in 6 short years to be the best advocate I can to 3 little people who I love, even with the medical drama they bring.


Pretending you drive an ambulance is not the way to go

I read a blog post today that I don’t even want to bother linking to.  Why?  Because while the point to the blog was to educate about febrile seizure, the actions of the mother are ones I find appalling.  I have a child with a seizure disorder.  BK had her first known seizure sitting right in front of me in my kitchen.  I snatched her up out of her high chair and confirmed what I thought I was seeing and the very next action was to CALL 911.  Unless otherwise directed by your doctor to stay in place and treat a seizure another way, calling 911 is the best thing to do when anyone, child or adult has a seizure.  Some people with a seizure disorder have “rescue” medication that can be given via nose or rectally, and obviously if you know about those medications they should be administered.  But even in the case of those medications, unless you know otherwise the safest thing to do is call 911.   So why should you call 911 and not put your child in the car (or keep them in if you are in the car at the time) and just zoom off to the hospital at top speed, with your flashers going and your horn honking?  You are putting you, your child, any passengers in your car and any drivers on the road in danger.  You child is more at risk without someone monitoring their condition.  And lastly chances are an ambulance can arrive faster than you can get to the hospital.  Once they do arrive they can assist your child by providing oxygen and monitoring her vital signs while they are en route to a hospital that is equipped to care for a child.  In our case when BK had her first seizure the hospital 3 minutes from my front door did not treat young children, they had to take us over 20 minutes to another town that had a larger hospital.  There she was stabilized and transported to a major city that had a hospital with pediatric Neurologists and a Pediatric Intensive Care Unit (PICU).

I am very glad that the little girl from the other blog was safe and got appropriate medical attention.  But urge anyone who encounters a seizure to call 911, do not self transport!  If the child has a fever use cool (not cold!) cloths or a tepid bath to cool them while you wait for paramedics.  Request transport even if your child is awake when they arrive, it is your right.  Some times people who have seizures go in to what is called a postictal state following the seizure, they can be very sleepy and disoriented, this is normal, but is important to know about.

And here is a list of seizure first aid procedures for Tonic Clonic seizures.  These are the type you see on TV, with full body involvement and jerking movements.

When providing seizure first aid for generalized tonic-clonic seizures, these are the key things to remember:

  • Keep calm and reassure other people who may be nearby.
  • Don’t hold the person down or try to stop his movements.
  • Time the seizure with your watch.
  • Clear the area around the person of anything hard or sharp.
  • Loosen ties or anything around the neck that may make breathing difficult.
  • Put something flat and soft, like a folded jacket, under the head.
  • Turn him or her gently onto one side. This will help keep the airway clear. Do not try to force the mouth open with any hard implement or with fingers. It is not true that a person having a seizure can swallow his tongue. Efforts to hold the tongue down can cause injury.
  • Don’t attempt artificial respiration except in the unlikely event that a person does not start breathing again after the seizure has stopped.
  • Stay with the person until the seizure ends naturally.
  • Be friendly and reassuring as consciousness returns.
  • Offer to call a taxi, friend or relative to help the person get home if he seems confused or unable to get home by himself.

The above list is from Epilepsyfoundation.org

My own addition to this is that if you don’t know this person and they do not have a medic alert jewelry indicating they have epilepsy, calling 911 is always a good idea.  If the seizure lasts more than 5 minutes I would also call. Especially for a child.

I am not condemning the woman whose blog I read today.  I know that in the heat of the moment some times your head is not on straight.  But I want to make it very clear that while getting prompt medical attention may have saved her daughters life, getting her to the hospital safely is important and next time she may not be so lucky.  The safest thing to do in any emergency that you don’t feel you can remain calm is to call 911 and if time is not on your side 911 is even more important.  The wonderful first responders who will come to  your aid are trained to drive in stressful situations, they have a vehicle that others know to move aside for and equipment to help you or your loved one arrive safely for further medical attention.