Son just diagnosed...

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

C

CandyJ

New
Messages
4
Reaction score
0
Points
0
Good evening. Let me start by saying thank you...I don't know where else to turn.

My son, age 7, was just diagnosed with epilepsy.

My son has been having partial seizures for the past several months, I think the Neurologist called them simple (or was it complex?) partial seizures. They were at first confusing, but as they increased in frequency and intensity, we asked the pediatrician for a neuro referral. Last Thursday (a week ago tomorrow) he had the largest seizure to date, the one that made the Neurology department move our long-awaited first appointment forward by nearly two months...

After the EEG and MRI, the Dr. said that it is "benign" epilepsy of unknown etiology. He suggested that growing out of the seizures is within the realm of possibility as my son grows up. On the heals of the diagnosis, literally within minutes, the Doctor told us that we had two medications to choose from, Keppra and something else that started with the letter "T" (and required regular blood work). We chose the Keppra, although I cannot really even remember most of the conversation.

Thus far, my son is not yet up to the theraputic dose (which will be 2.5 CC twice per day), which begins on Friday. Thus far, no side effects, although we were warned about acting out (misbehaving), talking back and potty mouth (those were the Dr's words). These behaviors, if exhibited, would represent a 180 degree diversion from his typical mild-mannnered, decided non-aggressive, well-behaved and overall happy disposition.

We have had no seizures since starting the meds last Friday (however, I should note that his seizures were "only" about once a week, and it hasn't been a week since the last one.)

I am COMPLETELY OVERWHELMED and don't know which end is up. Right now, I am working on rescheduling his summer (we were told no swimming, for example) and trying to make the adults around him "aware" of his diagnosis. Gratefully, he is handling it all well.

I don't know what questions I should be asking the Doctor, what additional therapies I should be pursuing, what non-medicinal support he could take advantage of, etc.

I don't know what support I can provide my son (non-medical) other than keep calm and reinforce to him that everything will be OK.

[Side note re: dietary changes -- I have seen some, tonight, re:high fat ketosis inducing diets. My son cannot be on a high fat diet as he has a metabolic condition requiring a low-fat and and generally high carb diet.]

I am open to all input, suggestions, and ideas. I don't really know where to start, to be frank. This is all SO NEW...
 
Hi CandyJ, welcome to CWE!

The early part of an epilepsy diagnosis can definitely be overwhelming and confusing. You're doing the right thing by asking questions -- information is your friend and can help make the coping process easier.

If your son's seizures involve partial loss of awareness, then they are most likely complex partial seizures. Complex partials are a bit like sleepwalking in that respect. (Simple partial seizures are like migraine auras -- unusual sensory disturbances, but no loss of consciousness).

My guess is the other medication you were offered was Tegretol. In addition to Tegretol there are a variety of meds out there if the Keppra doesn't work out. The behavioral issues your doctor mentioned are well-known, but not every one who uses Keppra experiences them. If you do start seeing them, ask the doctor about adding a B-6 vitamin supplement -- it can help mitigate that particular side effect.

Medication is the default treatment for epilepsy, but there are non-medical approaches. One of them is diet -- though as you've noted, the most successful ones are high-fat/low carb, which would be inappropriate for your son. Is there a possibility that your son's metabolic condition could be making him more vulnerable to seizures, given the limitations to his fat intake? Just a thought.

Another approach is neurofeedback. It has shown a lot of potential for treating epilepsy, but unfortunately is rarely covered by insurance. More info here: http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/

One of the best ways to help your son is to be a close observer -- look for patterns or seizure triggers or changes that might be due to side effects. Keeping a journal can help. Other good general info can be found here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

You might want to ask the neurologist about how to get in touch if you have any questions or concerns -- as you are discovering, there are a lot of things that are confusing about epilepsy. And I hope you feel free to ask questions here and post at any time -- CWE members are a great resource to exploit.

Best,
Nakamova
 
Hi Candy. Welcome. You have come to the right place. Cannot really add much to what Nakamova has already replied except sleep and stress can be triggers that many of us are affected by. So regular sleep, low stress, and balanced meals are just routine. If possible try to bring a friend with you to his appointments to review afterwards.

Take care
Mary
 
Hello and welcome!

I'm going to parrot Nakamova and restate the importance of keeping a journal. It's extremely useful because it will help you identify triggers, which can then be avoided so that seizure activity hopefully happens less often. :)

Best of luck to you, your family, and your son! We're here for you! :)
 
"mommy, I just want to hit something"

So, here it is just over 1.5 weeks that my 7 year old has been on Keppra, and my son's behavior is becoming increasingly difficult to deal with.

I have heard that he wants to hit something...is angry at mommy and daddy for no reason... He had increased irritability and off-the-charts anxiety. He has the SHORTEST fuse now. Most if this behavior, other than the anxiety, is new!

I will call the Dr. tomorrow re:B6 vitamin supplement as someone suggested.

Can the medicine be causing this so quickly? It hasn't been two weeks yet.

Can someone tell me that it may get better?
 
The Keppra could definitely be causing his behavioural/mood issues. If you can be patient, there's a chance that things will even out after he's adapted to the Keppra, and/or with the addition of the B6. But it's also possible that Keppra might be too problematic -- it's your call to make when you've had enough. Definitely ask the doc about what your options are if the Keppra is a no-go.
 
We are new too! I have a four year that was recently diagnosed and I totally understand how overwhelming all of this can be. I don't know what questions to ask either. And as a mother it is really frustrating. I am going to my very first support group meeting on 6/24/12 and I am looking forward to just being with a group of people that know what I am going through. My thoughts are with you :)
 
You must log in or register to reply here.
Back
Top Bottom