New here and a few questions!!

[Sara_K.]

Hi everyone,
My son is 3.5 and had his first seizure this past saturday. Because it was the first time he ever had one we went straight to ER. His seizure lasted for at least 25 min. He got an EEG done which showed that he has some abnormalities in his left brain (which was causing him to be turned to the right during the seizure). The doctor said he has Focal Epilepsy and he gave us Lamotrigine.
About the medicine, did your kids took Lamotrigine well? Any side effects? Also, the doctor said he will get 1/2 of 1 pill (25g) over the next 5 days in the evening, then I have to up it to 1 pill in the evening for 5 days and then after that 1 pill in the morning and 1 at night. This seems a lot to me to happen in such a short time... does anybody else had to this?
This all very scary for us.... and we are still shocked it happened.
Thanks in advance !

 

[C0urt]

welcome aboard, and sorry to hear about that.

 

[Bernard]

Hi Sara, welcome to CWE. :hello:

Everyone tolerates AEDs differently. You will always be able to find people who had serious problems taking drug X while others will praise it as a miracle. Treating epilepsy with drugs can be a bit of trial and error for a lot of people (ie. take it and see if the side effects are tolerable or not).

The drug schedule your doc gave sounds to me like a fairly typical ramping. AEDs don't work like aspirin - taking full effect a few minutes after ingestion. They have to be metabolized (usually in the liver, sometimes in the kidneys) and maintain a blood syrum level within a "therapeutic range". With many AEDs, you have to start slowly to build up the blood syrum level. Shocking the system with too much initially can cause big (serious in some cases) problems.

The same is true on the reverse - when weaning off the drugs. You have to ramp down slowly.

I highly recommend reading through the epilepsy 101 thread referenced in my signature below.

 

[chmmr]

Welcome Sarah. I have a 3.5 year old little girl with complex partial (focal seizures-right temporal lobe). She is currently on clobazam but we are likely going to switch to lamotrigine next week after her EEG because it is way less addictive.

You do have to ramp up slowly on lamotrigine (lamictal) because of the small risk of developing a severe rash related to the drug (if your little guy does get a rash, call your dr and have him seen right away).

What kind of seizure did your son have that lasted 25 minutes? So sorry to hear you all went through that for such a long time
Good luck! I hope it settles things down for your son.

 

[mdic870065]

also new here

I had a brain tumor removed in 1977 (non cancer) and last year put on coumadin have been on dilantin 400 mg a day for over 30 years and was wondering if the two interact have had 2 so called absent seizures in 3 months since being put on coumadin and was wondering if anyone else had any issues thanks for you time

 

[Sara_K.]

Hello Bernard! Thank you, I will def look into that. This is all very new to us and we never thought this is something our lives will be affected by. We didnt see this coming at all. I know when I was 6 month old I had a febrile seizure but thats it.

Hello chmmr! I am sorry you have to go through this too. How is she doing now? How long has she had it for? Does she have seizures regularly or did the drugs minimized them a little bit? So far my son is doing good with the drug, no rash yet but we have only been going for 4 days. On Friday I have to start giving him 1 whole pill.

Now I know his seizure started earlier than I thought. It happened a little bit after he woke up from his nap. I noticed he was a little bit off, like he was still sleepy. I put him on the couch so I could prepare his lunch and when I would ask him something he would just stare (absence seizure started) since I didnt know much about this stuff yet I just thought he was daydreaming so I went back in the kitchen. After 5 min I came back and I saw that he had his head turned to the right towards the leaning of the couch and he was making strange noises. (I thought he was just being silly again) I called his name but he wouldnt respond and thats when I saw he lost blatter and bowel controll (he was potty trained) so thats when I realized something was wrong. He was also making weird movements with his mouth, like he was eating or smacking. I called my husband and said I think he is having a seizure. One thing I knew about seizures though is that they usually only last a few minutes but after 4 minutes had passed and I didnt know for sure how long you are supposed to wait before its an emergency, I grabbed my 4 month old daughter and we left to go to the ER. The hospital was only 5 min away but there was sooo much traffic that it took us 10min to get there. He was also foaming out of his mouth and was really stiff, he was not really jerking to much. In the ER it took them another 5min to finally stop the seizure. It was really scary. He slept for a few hours because they gave him a strong medicine but afterwards he was doing fine and still remembered we were suppose to go to Wallmart after lunch right before the seizure happened so I was happy. His blood, urine, head scan was ok. EEG showed abnormalities in the left side so he will have a MRI on OCT 10. I hope we will find out a little more about the reason it happened. The doctor said sometimes you will never know and they will outgrow it. I truly hope so.....

 

[jyearta]

Welcome to CWE.

Your child is lucky to have a mother wanting all the infom. so she can help her child.

I learned more on this forum in 2 years than 42 years since diagnosed.

 

[chmmr]

Hello Bernard! Thank you, I will def look into that. This is all very new to us and we never thought this is something our lives will be affected by. We didnt see this coming at all. I know when I was 6 month old I had a febrile seizure but thats it.

Hello chmmr! I am sorry you have to go through this too. How is she doing now? How long has she had it for? Does she have seizures regularly or did the drugs minimized them a little bit? So far my son is doing good with the drug, no rash yet but we have only been going for 4 days. On Friday I have to start giving him 1 whole pill.

Now I know his seizure started earlier than I thought. It happened a little bit after he woke up from his nap. I noticed he was a little bit off, like he was still sleepy. I put him on the couch so I could prepare his lunch and when I would ask him something he would just stare (absence seizure started) since I didnt know much about this stuff yet I just thought he was daydreaming so I went back in the kitchen. After 5 min I came back and I saw that he had his head turned to the right towards the leaning of the couch and he was making strange noises. (I thought he was just being silly again) I called his name but he wouldnt respond and thats when I saw he lost blatter and bowel controll (he was potty trained) so thats when I realized something was wrong. He was also making weird movements with his mouth, like he was eating or smacking. I called my husband and said I think he is having a seizure. One thing I knew about seizures though is that they usually only last a few minutes but after 4 minutes had passed and I didnt know for sure how long you are supposed to wait before its an emergency, I grabbed my 4 month old daughter and we left to go to the ER. The hospital was only 5 min away but there was sooo much traffic that it took us 10min to get there. He was also foaming out of his mouth and was really stiff, he was not really jerking to much. In the ER it took them another 5min to finally stop the seizure. It was really scary. He slept for a few hours because they gave him a strong medicine but afterwards he was doing fine and still remembered we were suppose to go to Wallmart after lunch right before the seizure happened so I was happy. His blood, urine, head scan was ok. EEG showed abnormalities in the left side so he will have a MRI on OCT 10. I hope we will find out a little more about the reason it happened. The doctor said sometimes you will never know and they will outgrow it. I truly hope so.....

Sara i had a febrile seizure as a child too, but no family history of epilepsy.
Our daughter first had her suspected episode in the dr's office at 4 weeks old. Fast forward through many EEG's (i think next week is #9), an MRI, lumbar puncture, genetic tests, bloodwork, urine samples, continuous video monitoring, you name it we did it. No answers other than that her EEG was always abnormal in that it showed spikes in the right temporal area (so focal seizures). We went back and forth with the docs and they put her on meds at 6 months old for about 8 months, then decided to take her off and we thought everything was mostly good until a "routine"EEG at 3 years old and realized it was much worse than before. We became more alert to things and realized she was having complex partial seizures every couple of months. Then this past friday she had a cluster of at least 5 seizures in 12 hours and was put on meds again. Since then she has had two more so we are waiting on the EEG and then will decide where we go from there. Long story short, the really hard thing with epilepsy is that sometimes there are no answers (which ironically is a good thing sometimes-if there are no abnormalities seen on the MRI, it is much more likely they will grow out of it)



Crossing my fingers for you that the meds do their job and he stays rashless and seizure free and you get the answers you are looking for.