Chilhood epilepsy Questions - Epilepsy Message Board

DavidTex · 08-27-2003, 12:34 PM

I have been reading some great responses to questions in regards to Epilepsy in Children. I have a 4 year old son that was diagnosed with Generalised epilepsy back in April. The doctor began him on Zonegran at a very low dosage of 2ml. He went fine without any seizures until June when we accidentally skipped a dosage while on vacation. He followed it with three seizures over the next two days. The neuro increased his meds to 3ml.
He then went fine until August 14 when he had a Sinus Infection and had a single seizure. Has anyone had a seizure break through when being sick? He then had three seizures that were more severe than before two days later. They also had changed is medication to 5ml when the single seizure happened on August 14. Since then has been a roller coaster of seizures from one on a day to four in a day. The four in the day was very unusual in the fact that he had never had seizures in the afternoon. They had all been in the morning when he was a asleep or just after he wakes up. Has anyone seen increased activity in seizures when the dosages were upped, even the small increments that his were?
We are also now on Depakote and have been using Clonepam to have a little control over the recent seizures. Does anyone have any ideas if the increase in a medicine like Zonegran can cause Seizure Aggravation? We are befuddled due to the fact that we went from very little seizure activity to multiple days of seizure activity in a short period of time. Are there things that we should be questioning our doctor about to get more answers. How much relevance is there between Tonic Clonic Seizures and delayed speech and some memory slippage? There are days that his speech is better than others and the same goes for his memory. Me and my wife are just trying to make sure that we are doing everything that can be done to make hime better and to get him the treatment for his speech problems.
Any responses from the great people that I have read from would be fantastic. I can continue to read items in the Internet, but it is reading postings from those that experience the same problems that make all the difference in the world.
Thanks
DavidTex

LisaGuthrie · 08-27-2003, 01:50 PM

Hi David,

Wow, I always tear up when I read of another family starting on this Journey.

First, welcome to the board. You have found a great resource of caring people with varying experiances regarding Epilepsy, and there are many parents here as well. Everyone has been great about giving my Lil' Guy a voice, they've helped me understand what it is he's going through.

My name is Lisa, I come to the board for my son Jake. Jake is 20 mths and has been seizing since he was 10 mths. He has TLE, mostly complex particals, there is some generalization and tonic/clonics as well as absent seizures.

Hope I remember all your questions.

1.) I don't have experiance with the drugs you had listed. Jake is on Trileptal, Lamictol and Tergratol -he was just recently taken off of Dilantin. So, at one point he was on 4 meds at the same time. This SHOULD be avoided if at all possible. It really leaves the our little guys messed up. Memory issues, speech, balance, just an over all general slowing of their whole being.

2.) Seizure breakthroughs - yes, with children they will have seizure breakthroughs for several reasons.

- Illness, esp. fevers - Jake has more seizures when he's cutting teeth. The neuro swears that they are not related, but my records show several new teeth during increased sz periods.
- Growth spurts, you may go for weeks or months without a seizure and bam - tons of them. They have gained wieght. This is easier for adults to avoid since they have their full growth.
- Rest and eating pattern disruptions can cause breakthroughs as well. Try and keep him on a pretty good schedule.

Speech and memory issues: YES, we have that as well. At 11 mths, he was only having seizures every couple of weeks and he was my most advanced baby talker (I have 2 older children as well) he could say, mama, dada, whers dada, boll (bottle) ki-ki (kitty, kitty) and Iney (Jenny, his sister)

Then in Jan he started having seizures closer and closer sometimes as many as 20 in a day. With the increase in seizures came an increase in drugs and a decrease in language and memory skills. He also forgot how to clap, wave bye-bye and give kisses. I'm still not sure if this was drug related, or seizure related and the neuro can't tell us either. Now, he can do most of those things, but his speech is not coming back like we had hoped. He is still only able to say momma.

David, I need to hop off and get back to work for a bit. I'll try and get back to this later tonight if the older youngens' don't have to much homework.

You and your family will be in my thoughts and prays. There is also a book that I recommend all newbies pick up. I wish I had a copy when we started this months ago. It's called Seizures and Epilepsy in Childhood, by Dr. John Freeman at Johns Hopkins (I've brought the earlier thread forward again if you want to check it out)

(((Hugs)))

Love and light

Lisa and Kids

[This message has been edited by LisaGuthrie (edited 08-27-2003).]

DavidTex · 08-27-2003, 03:01 PM

It is so great to hear from you. I also have a daughter that is going to be 8 years old and just as healthy and smart as ever. She keeps me busy with softball and other school activities.
I can not believe having 40 in one day, I have hard time making it through one or two a day. What has concerned us most is that we went from mainly Focal Seizures several months ago to the tonic/clonic type seizures that last between 90 seconds and two minutes. We are also currently looking at seeing a second doctor for a second opinion. We feel that this will put us at a little more ease if we can get confirmation from another doctor.
One other thing that we have is he can now throw some great fits. Great fits that I have not seen from him since he was younger. It is normaly when he is on his Clonepam.
Have you had any problems with any of the medications that is being taken? It just makes me wonder if my son is having seizure aggravation due to the increase in the Zonegran that will be phased out over the next few weeks, we hope.
It is always great to hear from someone else that experiencing the reservations and problems that we are having. It is just beyond terrible that children should actually have to go through the seizures. I will comment more as we hear back from the doctor. I look forward to other postings from yourself and KittyMom and the others that I see a lot of postings from. will check back either tonight from home or first thing in the morning.
David

May God Bless and Protect all of our children

LisaGuthrie · 08-27-2003, 07:37 PM

Hi David, really long - sorry

I sent the below to another woman on the board. It's something that you may want to think about...

We have had problems with meds. He was toxic 3 times on Dilantin and had slightly elevated liver counts and lowered white blood cells. He also had a lot of hair growth and gum issues. Does your son have any developmental delays? Right now they have Jake classed as Globally Delayed. He's made tons of progress since going off the Dilantin, but we're still unsure what the future hold for us? It's scarry, but - we will get through it.

Talk to you soon, I need to do some chores before calling it a day.

* * * * * * * * * * * * * * * * * * * * * * * *

He was taking his meds twice a day at first it wasn't a real big deal because the doses were low, but as they increased so did the disruptive junk that came withit. He acted drunk or really drugged a big part of the day. It was so bad that he couldn't even sit up well in his highchair to eat. Each new drug made it worse... and his seizures were getting worse as well.

After they started him on the 3rd med. We asked if it was possible to break up the doses. The same amount per day, just spread over a longer period of time. I started getting up earlier and giving him meds at 6AM, he got more at 10AM, 1PM, 8PM and 10PM. This has really seemed to help! He stopped getting the shakes. He was sitting up better. It was about this same time that he started pulling up as well.

I can't tell you if it's helped control the seizure activity or if it's the add of the new meds. I wish I could I just know he acts like he feels better, more energy, he is more coordinated and he started saying Momma about this time as well.

The book that I'm reading right now has a whole chapter on what is called half life and steady states of seizure meds. I think that Jake wasn't processing the high doses well giving it to him only twice a day. He was showing toxic signs for several hours and would sometimes seize before time for the next dose.

By breaking it up he was able to hold a steady state of levels for longer periods of time. He didn't have the big peaks and valleys between.

OK, I think I'm rambling and not sure if it's making real sense.

But the other thing you should ask yourself is, if you thought a drug as working, but you had side effects (not the rash - the Lamictal had to go but say the Trileptol. Was it being taken in two large doses causing the side effects? Did your Dr give you a long enough time to get levels high enough to control the seizures? Did he try and split up the doses before going to a new med?

I know that I'm playing the Devils Advocate... But, Dr Winesett, Jake's first neuro told me the first night that what I needed to do to best help Jake was to LEARN, then WATCH and RECORD what we were seeing. He also told us to question his treatment at any point. That treating seizures is not so much a science but a gut feeling, with lots of trial and error. IT's the error part that really sucks!

We have tons of notes on his seizures, how he acted with each new drug, each increase. I know that the Trileptal made him act more aggresive for the first 2 weeks when we first started it, and then with each increase he did this for a few days until he adjusted. I understand that this is easier for us since we are not the ones seizing. It would be much harder to record how one presents and length for yourself...

**************************************** ************
David, get a second Dr. as well. Most Dr's if they are worth anything understand a parents need to get a second oppinion. Dr Winesett actually contacted a second Dr for us. The second Dr also teaches neurology at USF. The second Dr keeps Dr Winesett in the loop and he's asked that we take Jake back to him from time to time just to get a second set of eyes so to speak. It's a team effort and you as parents are the coach.

Love and light

Lisa and Kids

BTW Steve is 17 and a Sr in HS, Jenny is 14 and a Frosh. Life is sweet, please don't lose sight of that

L

DavidTex · 08-28-2003, 07:57 AM

Thanks for the reply. He does have some developmental delay in his speech. He has been tested by a Speech pathologist and he has Severe Articulation Disorder. I am having a hard time getting the insurance to pay for the therapy that he needs. We are also going through our public school to get him started on his therapy. He also gets very frustrated at times because we have a difficult time understanding certain words that he is saying. We are hoping that the therapy will work. we are also hoping that the depakote that his began taking will help some with the moodiness. it is a drug that they also use for manic depressants to help stabalize them.
Also, let me know what other suggestions the second doctor may have some up with that the first doctor did not think of. I am always curious if they each have different theories behind the different things.
Gotta go for now and do a little work. I will check in later and look to see if I get any new responses from others out there in regards to their children and ideas that they might have.
David