5 year son diagnosed 2 weeks ago, so scared.

[ranna32]

Hi

I just joined this site after searching for any and all information.

My 5 year old son was diagnosed with benign focal epilepsy exactly 2 weeks ago today. I received a call from his school informing me that he appeared to have a seizure. Took him to the hospital, they said a neurologist would call me in 1-2 months.

Then they happened that night, again and again, ended up from one hospital to another via ambulance. It's been a nightmare.

The scariest part is that he's now on medication #3 because the first two didn't work, and every day he is getting more and more and closer together.

We have a wonderful team of neurologist who want to keep us out of the hospital (3x so far) and contacting us regularly. It's so hard to wrap my head around it all, because 15 days ago he never had a seizure and now I can't sleep because I'm checking on him.

Anyways, just wanted to vent and introduce myself

 

[Nakamova]

Hi ranna32, welcome to CWE! I'm sorry for the circumstances, though. :hugs:

It's terrific that you have good neurologists working for you -- that can be half the battle in diagnosing and treating epilepsy. Hang in there, and feel free to vent all you like.

Best,
Nakamova

 

[qtowngirl]

It's terrific that you have good neurologists working for you -- that can be half the battle in diagnosing and treating epilepsy. Hang in there, and feel free to vent all you like.

:agree:

welcome ranna32,
best place to be when dealing with epilepsy. arms are always around you on here, and it's rare to have an issue or concern or question without someone here knowing the answer.
nak couldn't be more right re: neuros, many of us have gone through useless doctors who do nothing and precious time is wasted, or are smart but very rude and don't work alongside you. good right off the hop - that is so awesome to hear. (((hugs))) to your son and keep us posted

 

[jonsmom1212]

I know exactly how you feel. I just joined too. My son just turned 4 was diagnosed a few months ago and we are going on to our 4th medication. Your not alone, stay positive. Good luck to your little man.

 

[chop456]

Welcome to CWE. I turned to CWE as my first line of help when my daughter was diagnosed almost 2 years ago. From one mom to another, welcome and please know you are among a wonderful group of people.

 

[stein.dan]

You sound like my parent's when I was diagnosed with epilepsy. But like them you also have a good team of neurologists. And even though there will be bumpy rides from time to time, things do look up. I was diagnosed with epilepsy when I was six months old. I am now 43 years old. I have a driver's license and can manage to hold down a career. So with both a good team of neurologists and lot of family support, you can smooth the bumps in the road. I also believe both you and your son(if not other family members) will develop an inner strength you never realized before.

 

[grcg71]

My son had his 1st seizure at 8 years old. It was not much of a surprise since my husband and I are first cousins and we had an uncle who had epilepsy. We also knew that there are instances of epilepsy being inherited. Still the sight of my young son having his first seizure was traumatizing to say the least. He had quite a few afterwards until he reached puberty when the occurrences diminished considerably, but not totally.

For a long time, each time he had a seizure, time stood still for me. I could feel my heart pounding, my thoughts becoming erratic, all signs of someone being very very scared. I was acutely aware that I was not much help to my son when in such a state but there was not much that I could do about it. Then came a day, I can't remember when exactly, when it dawned on me that what I was scared of was *being scared*. I don't know whether that makes any sense but it did to me. That's when I asked myself: "OK, what is it that you are scared of? Really!" Once I confronted that fear, I was able to be more calm and supportive. I now have what I call "anxieties" that I believe is normal, but I am no longer scared.

My thoughts are with you and your family. I pray that your son's medical team soon find the right medication for him. That should be the first order of business.

 

[WhitneyLB]

Hi ranna32,

I'm no mother (yet), but when I first started having seizures the one person who was there for me the most was my mother. I was diagnosed at 12, and just like your son I started having seizures at random. It just hit me one day. My mother was obviously terrified, we all were. I have the best nuerologist on my side, I will forever be grateful to him. Not only that, but I am able to live a relatively "normal" life. I'm 26 now, have my license, a job, and am getting married soon.

It's vital for you to know that your son can still have a life, that his life won't always be about epilepsy. I've always said "I have epilepsy, but it's not who I am". The best of luck to you and your son, don't be shy about this journey!

 

[talley_valley]

My daughter was diagnosed May 2013 and we have had issues with finding the right combination of medications. I would recommend reading the book "The Cleveland Clinic's Guide to Epilepsy" by Dr Elaine Wyllie. It is a good place to start for information on the condition and is written in a way that is easy to understand. Good luck with your son. Hope you see improvements soon.


Sent from my iPhone using Tapatalk

 

[valeriedl]

Has your son tried 3 different meds in only 2 weeks?

I was diagnosed when I was 27. It took at least a month or longer to figure out what a medicine was going to do for me. Some of the medicines might have caused more seizures or had side effects that I couldn't handle. Others worked but they needed to find out which ones worked together and what dosages that needed to be used. It took around 2 years to figure out what worked well together but even now every so often things my need changed. Don't give up yet about that.

As many people on here have said they were diagnosed at a young age and now leave a normal life. Don't think that just because he has epilepsy means he's going to have a seizure every five minutes. Give your son support in what he's going through.

Good luck!

 

[stein.dan]

hi there

It is good that you have a great team of neurologists. You can use all the support you can get from them. You are also on the right track using this website. I don't know if you have joined any local epilepsy foundations, but you may want to look into one of them. Best of luck to you and your family.