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Old 02-18-2005, 05:48 AM   #1
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Join Date: Dec 2003
Location: Howard, PA
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lbstover HB User
Son Just DX

Our12 year old son was just DX on Wed, 2/16/05. This was a huge shock becuase his first seizure was Sunday night around 10:30pm. My 15 year old son found him having the seizure. We had no idea what was going on so we call 911 and they rushed him to the Emergency Room. They did some test and sent us home after spending around 5 hours there. They wanted us to follow up with our doctor the next day.

We saw the doctor the next day and the referred him to a Neurologist. He was scheduled an EEG for. During the EEG he experienced another seizure. (I guess that was as good of time as any) We saw the Neuro immediately after the EEG and he had no doubt in him mind that our son was epileptic. They put him on Tegretol XR.

I would appreciate any information anyone can give me regarding this. I am still in shock. My husband and I are having a hard time going to sleep at night. My 15 year old is afraid to be alone with his brother for fear of him having another seizure.

Thanks in advance for any and all information
Betsy

 
Old 02-18-2005, 08:24 AM   #2
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Location: St Cloud, MN
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Travis from MN HB UserTravis from MN HB UserTravis from MN HB User
Re: Son Just DX

It may be good for you "as a family" to sit through a tape on epilepsy.

You will need to know when to call 911 and when NOT to.

WHAT to do in seizures CORRECTLY, if anything. (sometimes nothing {watching} is just fine rather then trying to force the patient to move)

Call your local Epilepsy Foundation office and see what they can do in your families case. They may provide information for you to educate you.

I've had seizures since I was 5. Relatives tend to freak out. My family knows what to do basicly from time. One rule I told my friends in the cities (due to NOT having good coverage) was unless it is a BAD Grand Mal, DON'T CALL for an ambulance. by BAD I mean MINUTES in length; or "cluster" seizures (one after another); THEN call. Of course they knew if I was gushing blood to call no questions asked. I would follow the same guidelines for others until they were back to being able to communicate and THEN tell them what happened if they didn't know, and ASK if they wanted to go to the hospital or not.

The reason for NOT going... the hospital charges are VERY high. Ambulance transport alone is atleast 500. All the hoispitals do is OVERDOSE the patient that comes in identified as epileptic, having or just had a grand mal. Thats typical hospital procedure anyway... Take it from a person who has been down that road a few times.... NOT FUN. They don't like it when YOU THE PATIENT are correcting them on the drugs they want to administer.

The hospital ER on multiple occations (different hospitals) gave me a drip of Dilantin to try and prevent more grand mal's. the PROBLEM was they gave me 1800mg or 2100mg's (thats's 6 or 7x what my DAILY dose was!!!) in less than one hour. Talk about an overdose... or so it felt.

Thats one of the reasons I push education on the parents and patients so they KNOW about the medications and possible sideFX. We need to be alert and try to keep in step with the Dr's. Sometimes you need to avoid specific foods with medications (can alter the drugs level). Other times it's as simple as the med makes you more sensitive to sun (or can make you should I word it).

--Travis

 
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Old 02-18-2005, 09:00 AM   #3
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twozeds HB User
Re: Son Just DX

hi there. I've been having seizures since I was 12 years old just like your son. When I had my first seizure, I had just called my mother to come pick me up from school and as soon as she arrived, I seized.

I have two younger siblings who have been witness to numerous seizures, and they've always been calm about it. I spoke to them myself and asked them not to worry; worrying only makes me feel more scared about it myself.

Like the previous poster suggested, sit down as a family and talk about it. This should be something that can be spoken about openly. Talk about your fears and hopefully something good will come out of it.

Good luck!

 
Old 02-18-2005, 09:13 AM   #4
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buliem HB User
Re: Son Just DX

Hi Betsy,
Sorry this is happening to your son. My 10 year old has grand mals (tonic clonic) too. He started with petit mal (absence) and was officially diagnosed in September. In November he had his first grand mal but it was very short and mild so I didn't call 911. We think he had a couple smaller ones in his sleep too since he wet the bed. In December he had a massive one while we were out of state visiting a friend. It lasted a lot longer than the other and the tonic phase (the stiff part) was really scary. He turned blue and all. That is normal for a tonic clonic as the blood is pulled away from the skin to go to the brain as a protection mechanism. After the jerking (clonic phase) he passed out completly and only responded to pain. It really lasted a long time so we called 911. Travis is right, ambulances are expensive. The bill just for that was over $900.
I don't mean to seem callous but you will in some ways get used to them. Your older boy will too. They still scare me but I have to remain calm. If they last less than five minutes and he doesn't hit his head or anything the doctors generally say you don't need a trip to the ER. I now know how they affect my son and how he is after. Sometimes I think the passing out(post-ictal) part is now the scariest since he takes a long time to revive.

I'm also finding out that neuros will often just try to get you to take your child to the ER just because they are too busy to see them. This happened to us this past Monday. My son had two grand mals (one in the morning Sun and one in the evening) he fell out of bed on the second one. I called the neuro to see if he wanted to up meds. My son was really out of it (normal for him after one big seizure, let alone two) and the doc wanted him to go to the ER. He was afraid he may have hit his head and had a concussion. I fought that as the last trip cost $1200 as it was Jan. and we have a $2500 deductible. All due to a bad reaction to too much meds. He agreed to see him in the clinic this time. He was of course fine. When you are the mother of an active boy you know what a concussion looks like. I just think the neuro had to make a special trip to that clinic and he didn't want to. He was really flip when I told him we have a deductible. He said we just need to get it out of the way. Doctors making 100s of thousands of dollars a year are certainly out of touch. More than the money though I didn't want to spend 7-10 hours in the ER. I loath the ER.

Anyway I will be keeping you in my thoughts and prayers. I know this is so very much to handle. Keep in touch. This is a great place for support. You are not alone in this. It may not get better at first but it may get easier to deal with. The initial shocked feelings lessen after time.

 
Old 02-18-2005, 09:19 AM   #5
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lbstover HB User
Re: Son Just DX

Thank you all for your insite. We have been talking very openly about the diagnosis and it does help. Its just a scary situation for right now because we don't know if the medicine will work. Our Neurologist said that at our visit in a couple of weeks he has videos for us to watch and some brochures to give us.

I am going to put in a call to the Epilepsy foundation and see if they have any information they can send us. I am also going to look for a support group in our area.

Betsy

 
Old 02-18-2005, 09:21 AM   #6
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buliem HB User
Re: Son Just DX

One more thing Betsy. Do you have a baby monitor for you son's room? That way you could maybe get some sleep. Our son's room is right next to ours so we just sleep with the doors open. To be honest I don't sleep as well anymore either, but maybe a monitor would help you. I'm usually up 2-3 times a night checking him and my husband jumped out of bed this am because he thought he heard something. He was fine. Don't know if that part will get better. Sigh. I feel like I have a newborn again. Checking if he's breathing and all.

 
Old 02-18-2005, 10:00 AM   #7
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Travis from MN HB UserTravis from MN HB UserTravis from MN HB User
Re: Son Just DX

Betsy, don't worry about the meds working when just starting. Ramping up, or the technical term, "titrating" is something we learn. Make sure he feels OK on his dose when he reaches the "destination dose". Ask if he feels "off" in any way and if he can describe how he feels how it is **IF** if he feels "off".

I was LUCKY and mine worked from age 5 until after highschool.

Around age 19-20 I started having problems and my "rollercoaster" started when they needed to try other meds. I ended up going through 8 different meds, at times bad combos (usually 3 at a time max; worst was 4).

HOWEVER having said that, the first med does not always work. He may have to go through one or two medications to try and find the one that will work for him. But give it time. You can't give it one week and say this does not work in MOST cases unless the RARE reactions (what I call "red flags") show up.

Most Doc's try to go 3-6 months on a medication until they will change a patient; unless seizures control is not improved.

Other items to do USE A CALANDER (weekly/monthly/pocket) to "log" the seizures and medication changes. You'll need to find abreviations for GM=grand mal, SP=simple partial, CP=complex partial, A=aura... you get the idea...

Dr's LOVE it when when patients log the seizures. Mark the TIME of the seizures if you can, and the approximate length if you can. Another item to make notes of is the pre or post seizure symptoms. If recovery took a while, if the patient was confused, any drooling during the seizure... it all helps. The more information you can give the Dr the better.

--Travis

 
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