My 6 yr old son was just diagnosed....

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jonsmom01
New Member


Date Joined Dec 2007
Total Posts : 1
   Posted 12/9/2007 9:53 PM (GMT -7)   
Hi, my son was just diagnosed with Epilepsy.  He had his first seizure the day before Thanksgiving.  Of course, that meant we got to be in a hospital bed at the children's hospital, no turkey for us.  He had three seizures that day.  How scary!  I'm not sure what the difference between petit and grand mal seizures are yet, but they keep saying they are generalized, because it affects his whole body.  I guess they don't want to use the word grand mal with me yet, i don't know.  He only has them when he's sleeping though.  Is this odd?  He's on Keppra right now.  Actually he started it on Thanksgiving, and then the following Saturday he had 5 seizures, which brought us back to the hospital for a few days and more tests, EEG & MRI, all that fun stuff.  They found out that the pharmacy messed up his dose.  He was supposed to be taking 2mls twice a day, 200mgs.  They had him taking 2 teaspoons twice a day, 2000 mgs.  So, they believed this caused those seizures.  Hopeful that he was not going to have anymore, sadly came to a screeching halt when he had two more yesterday morning.  The first one lasting 2 1/2 mins long, and then he followed up with another one this morning.  So, I get to call the neuro tomorrow and see if they are going to adjust the keppra.  This breaks my heart that I can't fix it for him.  So, anyways, I have a couple of questions that I hope someone can help me.  He doesn't seem to remember any of his seizures, again he only has them when he's sleeping.  How do I help him adjust with this if he doesn't realize it's going on.  How do I help my two other children deal with this as well.  They are feeling slighted by me, because I have my son sleep with me now, until I can get his room moved downstairs by mine.  I'm trying to keep things normal, but everyone's schedule is off.  My son has not been back to school yet.  Tomorrow is his first day back (he's in Kindergarten).  I'm scared to death.  I know the workd is cruel, and kids are even worse.  He's such a sweet little boy, and now his whole life is altered, possibly for the rest of his life.  Any suggestions?

djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 12/10/2007 5:44 AM (GMT -7)   

Hi there and welcome to HealingWell,

I want to try and clear up a few of your questions, ask a few of my own and also give you some advice (All in one post! lol) Please bear in mind that there are always exceptions to the rule but what I say generally goes for 95% of seizures and that my advice is not a substitute for medical advice from a doctor.

The difference between petit mal and grand mal is an easy one. Petit Mal are seizures where the person seems to lose their connection to the world but does not (generally) fall to the floor. They often stand staring at a particular point and are unresponsive. Grand Mal is what people stereo-typically think of as Epilepsy. Grand Mal seizures often involve the person losing muscular control, they fall to the floor and shake. The term generalised means that it affects the whole brain (and therefore the whole body). The alternative is localised which is where a particular area of the brain is affected (and therefore not the whole body is affected)

The mess up with the Keppra, I agree probably caused the seizure. It seems backwards that an anti-epileptic (AED) can cause a seizure but when you mess up the dosage, it can happen.

How can you help your son and your other children? This is something that I think can be helped by not making this a mountain of a problem. Including your children in what to do when your son has a seizure is a good way of making it seem more normal. Depending on how old your other children are, perhaps a little home first aid training? (Im not talking artificial resus here... just how to deal with seizures!) As for your son, he is highly unlikely to remember the seizure itself since the brain does not function properly and he is unconcious. Does he get (what we call) an aura? This is a feeling or sensation just prior to the seizure. It can be a smell, a sound, a feeling or something visual. I dont have aura's but my mum smells burning almonds. If he has an aura, he may have time to put himself somewhere safe.

The best thing you can do for your son is to research epilepsy and learn about it together. There are many websites in the resource section of our website which you may find helpful. The main thing is not to make epilepsy seem like a huge thing. Although epilepsy generally stays with you for life, you can get periods of remission (which can last decades). So although it looks scary at the moment, there is still hope. I am assuming you live in the US so I cant advise you on driving restrictions, but epilepsy does not stop you driving. You have to complete a set period without a seizure and this is different across states. In the UK it is 1 year and I get the impression that this is a long time compared to the states.

If you have ANY questions, please feel free to ask. There is no such thing as a stupid question if you dont know the answer. Dont let epilepsy control your son... Allow it to be something that he can control.

Best Wishes

Darren


Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
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Co-Moderator - Depression Forum
 
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Another Day
Veteran Member


Date Joined Mar 2007
Total Posts : 1055
   Posted 12/10/2007 8:58 PM (GMT -7)   
jonsmon,
 
I also want to welcome you to HealingWell.  I am 56 and was diagnosed about 15 months ago.  I was lost before I found this site and had loads of questions as Darren can tell you.  I'm sure some other parents will come along soon who will be able to give you some answers and comfort also.  We are like one big family here and do our best to help each other.
 
I'm sure your other children are feeling slighted because life is sort of focused on Jon right now.  You just have to do the best you can do for now.
 
My prayers are with you and your family,
 
Carla

Moderator, Allergies/Asthma
 
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Epilepsy, asthma, GERD, depression, hypothyroidism, tinnitus


mamason
New Member


Date Joined Mar 2008
Total Posts : 3
   Posted 3/10/2008 7:38 PM (GMT -7)   
I have a 8 year old who was diagnosed a year ago- we have been through lots of tests and changes in the year but I have always tried to help him feel like this is just a bump in the road and we get up and do what it takes to stay on the path/ road moving forward.  We did put an Individualized Education Plan in place options for schools are protection under 504 plan- health disability/ this is not special education but protects rights if needed and keeps everyone communicating, also you can get an IEP / Special education services under Other Health Impaired/ and this can be set up according to needs and changed as needs come up or change- minimum services can include nurse education/ school awareness.  You can also just initaite health plan- having things in writing is helpful.  Even though it is during slep it will be important that the schools are aware of medications and seizures.  Medications can cause changes in school performance and so can siezures/ my son looses skills for days to weeks when his seizures are not being controlled by the medications/ we often have to adjust it as he grows and weight changes.  Also if he has siezures he is tired and his work production is low so we have a deal to do things spread out or at home/ It doesn't hurt to research your options and know your rights/ epilepsy.com is great resource.
 
As far as the mom thing- it is never easy to watch your child suffer in anyway but I have found that the more strength and resilence I have the more he has the more I keep a positive outlook the better he looks at it and then I go in my quiet corner every so often and cry and pray!  On the outside I show him that nothing can keep him down he can be anything he wants to be with hard work and perseverence, and then I allow myself and him those few moments of tears and why us but then we get back up and fight!
 
Reason for edit:
 
I have had to take out one of your links since it clashes with rule #4 (http://www.healingwell.com/community/default.aspx?f=46&m=106997) Darren

Post Edited By Moderator (djdaz_1985) : 3/11/2008 7:23:08 AM (GMT-6)


Zonne
New Member


Date Joined Mar 2008
Total Posts : 14
   Posted 3/21/2008 8:05 PM (GMT -7)   
I received my first seizure when I was a 12 year old boy in sixth grade (14 yrs ago now). So, while I was a little older here are a few suggestions from my experiences.

1) The biggest thing that I hated was to be different from everyone else. My Mom and I agreed to let the teachers, principals, and others know, but who I let know throughout the fellow students was up to me.

2) Make sure you don't do all everyday tasks for him (baby'ing). I grew to hate the fact that I had to lean on everyone to do things for me. (I still feel this today.)

3) Family...I know that I could never have survived as a kid without the entire family behind me. I have one sister and she is 4 yrs younger then me. She was actually there at the table when I had my first seizure. I don't really have any suggestions on how to include them, but I know from experience that I really appreciate it, and I know that my sister is there just as much as my parents if I really need her.

4) I definitely agree with mamason on having a personal meeting with the specific teachers. My parents and/or I had a side meeting with them to let them know how to handle it, some details on how often it had showed up lately, etc, etc.

To both mamason and jonsmom1:
Never give up...no matter how much your son complains about tests, drugs, and other stuff. I would have never survived my 14 yrs with seizures now without the support and knowledge that if I called my parents or sister in the middle of the night saying that I needed them, that they would jump in the car at 1 am and drive and/or fly to me immediately. It took me until I moved out of the house to fully appreciate everything my parents did for me. So, even if the appreciation is not shown right away please stick with everything. A bump in the road is a great way to look at it. :-)
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