Infrequent Seizures

[LyLMyssChaos]

Hi everyone, I am new to the world of seizures, but so far my child had what we now believe to be a petit mal seizure on January 19 and then 3 more seizures (2 petit mal and 1 tonic-clonic) within an hour on February 23. We are seeing a pediatric neurologist tomorrow and so far, no one is discussing meds because his seizures are not frequent enough (which I think is good.)

My question is this; how do you get those involved in your child's life to take the condition serious enough to heed the safety measures the doctor's ask for? I don't want to restrict him too much, but I want them to understand that he does in fact have a medical condition that requires a certain level of extra precautions to be taken despite the fact that he is "ok" the majority of the time. I'm concerned about that little part of the time when he is not "ok."

 

[Rae1889]

depends on who those involved are. Daycares, Schools etc must listen to any written recommendations your doctor gives them. Such as no gym class. They cannot fail him because he does not participate, but instead can get him to do written assignments.

A daycare should listen to all needed advice. Write down seizures that occur, what to do during a seizure (all types) when to call an ambulance and when and how to admisiter emergency medication.

 

[LyLMyssChaos]

Actually, the school has been awesome about it. He can return to school once we have a plan of action in place.

The problem is family members. I work outside the home and he is cared for by relatives (his grandmother and grandfather) and he visits his dad every other weekend. Thankfully, I have been trained on first aid for seizures and how to do CPR because of my job (I work with adults with developmental disabilities.) I plan to teach his grandparents and his father (and girlfriend) how to handle a situation should it occur while in their care. I have instructed my other two older children what to do should they be with their brother when he's having a seizure. I am just scared at the prospect of putting him in the care of others whom have a history of ignoring medical needs(my oldest is gluten intolerant and can't have gluten, yet they feed her a great deal of it) due to the child "seeming ok."

 

[Rae1889]

Well, if it were me, I would see if I can find alternate places for my kids to be looked after. See if another friend or relative will take them.

Also education. tell them the severity of what could happen if they dont listen to your advice. Prolonged seizures can cause alot of damage and even in rare cases, death. (in respect to the GI of your eldest, sometimes eating too much gluten can cause a seizure as well) They need to know that this is not something that they can ignore. That the whole misconception of epilepsy is that we "seem okay" even when we arent. If the seizure isnt an obvious tonic clonic (shaking on the floor etc) most people will not recognize it or do anything.

Are your parents familiar with Dr. Oz? He has many great videos on Epilepsy and I found that using a person that your parents find interesting is a good way to make them listen.

 

[LyLMyssChaos]

I did not know about those videos. I will definitely look into that. You made a very valid point and that's what scares me. Out of the 4 seizures he had, only 1 was an obvious seizure. The other 3, we just thought he had fainted or stumbled and fell. I realized they were seizures only after seeing how the tonic clonic started. Also, he seems to have an aura, so I have told him that if he feels "tired" again that he needs to tell the closest adult and then lay down where they can see him.

 

[Rae1889]

Yes. He may also be experiencing other seizures (simple partials) that he doesnt know are seizures, so it might be good to start educating him as well. Try to use proper terms with him this way if he is anywhere without you he knows how to alert someone properly, as most adults will usually think that a child who says they are tired or dont feel good, are simply bored.

Have you thought about a seizure alert dog? they can be trained to pick up on small seizures, this way someone can be alerted if your son cant alert them himself.

 

[LyLMyssChaos]

You make a very valid point. In fact, his first two seizures this week happened while we were waiting in line somewhere and I even blew off the fact that he was telling me he was "tired" and wanted to be picked up. I just need him to be familiar enough with what exactly he is feeling so he can appropriately tell us.

I just learned that there was even such a thing as a seizure alert dog and it is definitely on our list of possibilities. We'll know more once he sees the neurologist tomorrow. This has caught us completely off guard and so there is a lot of steps to go through. Right now I am just trying to get things somewhat stabilized(getting him a bracelet and informing everyone of his needs) so I feel comfortable returning to work.

 

[Rae1889]

One thing that I do want to suggest is to not watch him too much. It is really hard feeling like you dont have any independance anymore. no matter what age you are. you can try buying a baby monitor so that when he sleeps alone or plays alone you dont have to worry, or you can even come up with a code word that he can say if he "feels one coming". If he is young enough you can make it into a game, as well as turning into a learning game for his sibling(s)

You can make a song so they remember how and when to call 911 and what to do if he has a seizure and they cant get to an adult right away (please remember that even though you have told them, they may panic and not want to leave his side for fear he is dying. its the sad truth but they may not want to go get an adult if it means leaving him alone for any length of time)

 

[Endless]

A doctor's note outlining what must be done is often useful in getting people to listen and adhere to needed precautions. Some docs appreciate a draft to work off of, they have it typed up, and then they sign it.

 

[tase37]

my baby has seizures rarely now..now its been almost a month since the last one..she is on meds but is coming off them in a months time and most probably won't get any new meds BUT the neurologist did say that she will be started on a new med if the ystart up again..sorry I might be tired (lack of sleep with little baby) and I am very new with all of this but why won't they give him meds?

 

[LyLMyssChaos]

The neuro at the hospital didn't think it was necessary at this time since he "only has had a few seizures." We see a different neuro tomorrow, so we'll see what they say. He had no prior history of seizures until January when he had 1 probable seizure and then the 3 he had last week. The neuro at the hospital said "some kids can go a year between seizures, so I see no need for medication, just eat healthy, avoid preservatives and keep him from climbing things."

 

[tase37]

very true..I agree if possible then why use meds I'm hoping too that our situation will stay calm and we won't have to start on new ones after this one.. I just thought at first that the neurologist was denying meds from your child

 

[LyLMyssChaos]

I posted this in my thread in the foyer too, so forgive the repost if you read it there:

I feel 100 times better after this doctor's appointment. She read to us what the EEG showed and apparently he had high waves in both the central brain and temporal lobe on both sides of his brain. She said that she wants further testing so he is going to back in two weeks to have an MRI and extended EEG, both while under sedation. The doctor also prescribed Diastat and said if he has a seizure that lasts longer than 3 minutes we are to administer it. She also said that although he could be medicated as a result of his EEG, she wants to wait until he either has another seizure(at which time he will be put on meds) or until we see what the next round of testing shows. The doctor was great about answering all of our questions and giving us a clearer picture of his condition.

My son was given the all clear to return to school once we have the proper paperwork and procedures in place.