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galestarr

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Hello,

Hi, my 4 ½ year old son was recently diagnosed with temporal lobe epilepsy with some rolandic features. It has taken us 2 and a half years to get him diagnosed, as initially they believed some of his symptoms were simple ADHD and other symptoms they ignored completely (acting as if I was imagining them or over reacting). Recently, his seizures progressed from staring spells to complex partial seizures (in his face) accompanied by Todd’s paralysis. Finally he was given a CT scan and an EEG and diagnosed. Now we seem to be on a medication roller coaster. To complicate things we are a military family stationed overseas. The neurologist only visits every four to six months and our regular doctors don’t seem to have a lot of specific epilepsy knowledge. I feel stressed and worried for my son. I feel like I need any advice that people are willing to give me, because I don’t even know what questions I should be asking at this point.

Thanks
 
hello galestarr

its terrible that you should have to go through this with such a young child but out of some of my researching I've done is that childhood epilepsy can often times be operated on when its in the temperal lobe, if you wish to do so. I know you said that you were overseas so this may make it difficult but it may also make it to be a life without seizure medicine. Thats an option open to you. Also some kids grow out of them my doctor told me, so you may just want to wait it out. I want to welcome you and hope you find some of those answers your looking for. :D
 
Welcome galestar

We are retired USAF living in Las Vegas. What base are you at?
I completely understand your delima with the doctors, are you given an option to use off-base medical? If that is not allowed then have them med-evac your son to a large US hospital for a complete work-up and get his meds straightened out.

The medication roller coaster is a nightmare. It is all trial and error and finding the right combination often takes a great deal of time.

I don't want to scare you but you need to understand that most AED's (anti-epileptic drugs) have side effects.

It would be a benifit for you to begin a diary on your son's medical care
You need to log;
  • each seizure
    the type, time and duration
    what meds he's taking

You will feel frustrated because military medical care of dependants sucks! And getting you baby on a workable thearapy takes time.

There is a ton of information at the EFA
http://www.epilepsyfoundation.org/answerplace/index.cfm

There are other options beside medication. The Ketogenic diet is very successful but must be strictly followed
http://www.epilepsyfoundation.org/answerplace/Medical/treatment/diet/

Don't give up hope, this is a rocky road you are on. Good luck and don't let those AF doc's bully you. You have options that are not available to civilians but have to go through the chain of command.
 
Thanks Birdbomb and Bunker1

We are stationed at RAF Lakenheath, UK, and you are not kidding about the medical care. You would not believe the hoops we have jumped through just to get to this point. We have been lucky to some extent because he is able to see a developmental pediatrician instead of the regular peds docs available. They have only 10 min. per patient and zero specialized knowledge. I was told that they have recently removed the medivac option for overseas dependents. If I want to go back to the States I have to do so on my own, and even a humanitarian PCS will mean that the kids and I go back without my husband.

I have been keeping a journal, and what has happened on the Trileptal is that on the low dose his complex partial seizures and some of what they are calling his "interictal behavioral problems" are better, but his simple and absance seizures persist, but when we raise the dose he becomes aggressive and seriously hyperactive. So now the doctor wants to put him on Depakote. From what I have read, that would be a bad thing. This doctor is not used to treating epilepsy, but prefers depakote because he has had good luck with his bipolar patients using it. The consulting neuro said he preferred Topamax but the he would be okay with us using Depakote.

Now I am very worried, I have agreed to the switch (before I knew the potential risks of depakote), but haven't done it. Has anyone here been on depakote? Is it terrible?

Also, how long does it take for medication side effects to lessen? I am wondering if we are moving too fast to a new medication. Maybe his aggression and hyperactivity will go away after a few more weeks?
 
Hi galestarr, welcome to the forums.

My wife, Stacy, completely eliminated absense seizures with EEG neurofeedback. It took a long time (5-6 months of sessions 3 times weekly), but it really made a big difference. Neurofeedback is also very helpful for treating ADD & AD/HD and is non-invasive and safe. If you can find a doctor (check with psychologists and psychiatrists too as they are the main practitioners of neurofeedback), I would highly recommend trying it.

Depakote may turn him into a zombie. That's how Stacy was when she took it - drowsy/tired and mind in a fog all the time. But, everyone reacts to drugs differently. You won't know until your son tries it. Just be sure that any drugs you try (or quit), you start and stop slowly. Always ramp up and ramp down. Never go full bore or quit cold turkey - AED's don't work like anti-histamines (taking effect within minutes of ingestion and lasting just a short while). They (AEDs) take time to establish the necessary (and constant) levels in the bloodstream.
 
Hi and Welcome-
I'm so sorry that you're having such a hard time. I have had seizures since I was a pre-teen. I have complex partial seizures like you son. If I can help in anyway please let me know. I would be more the willing to answer any and all questions you have about Complex Partial seizures, and first hand knowledge I have of a AED. But, you always need to keep in mind that everybody is diffrent and everybody gets diffrent side effects. What could be one persons miracle drug, could be another persons poison. I always like to know the "what if's ". So, ask away.

All the people that posted before me, had some very good advice for you.
Surgery is a very good option if it's possible. Although I would make sure you got to the US for that one.

Do his seizures come from just one side? Could they pin point them? Those are some of the questions you might ask.
What meds have you tried? I will tell you the ones that I think work the best on C.P. Seizures These would be the ones that I would ask about if you haven't tried them already.

Lamictal
Trileptal
Keppra
Topamax
Dilantin

These are the sercets that I learned, the slower you go starting on these meds the better. Even more so with children! Tell the doctor that you want to go twice as slow as they normally would. I have found over the years that the chances of side effects go down, if you give your body lots and lots of time to adjust, to the new med your putting into it.
Top three side effects of AEDs are ....
HEADACHES
DEPRESSION
DIZZINESS
then of course there is weight gain and weight loss. But, the top three that you as a mother need to asking and watching for are those.
I can't tell you the amount of meds that my mother pulled me off because of depression. Even as a pre-teen I didn't understand what was happening to me, and why I was feeling the why I was, but my mother did. Thank god I had her.

Like I said I truely understand what it's like to be a kid stuck with CP seizues. If you ever what to chat, feel free to email me [send a pm message for the email address]

Elisa
 
Sorry Elisa, it's really not a good idea to post a live link to your email on a message board so I removed it. Even with the best spam filters, I wouldn't recommend it. There is a PM button at the bottom of every post. Members may use that to send Private Messages where it is safe to pass along your email addresses or other contact info if you like.
 
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