3 year old just diagnosed with epilepsy.

[kristyEallen]

hi, my name is kristy and my 3 year old was recently diagnosed with epilepsy. i guess i can give his history... he was born 6 weeks premature but only had to stay in the NICU for 2 weeks due to his weight and the fact that he was not eating. he had to be tube fed. he was breathing room air from birth. at 15 months old he had a nasty throat infection and had fever. he had 2 febrile seizures in one day. i was told it was "no big deal". it literally took me almost a year to NOT freak out everytime he had a FEVER, lol. anyway, on february 27 of this year he had another seizure but no fever this time. he has focal seizures where his eyes and head turn completely to the left. we went to the ER where they did a catscan. the catscan showed an area in his brain where one of his ventricles was smaller than the rest. the ER dr assured me that this could be completely normal. his pediatrician reffered us to a pediatric neurologist and an MRI and EEG were done. his EEG showed abnormal activity and the MRI showed that the area in his brain that looked different in the catscan was in fact NOT normal. he as PVL (periventricular leukomalacia) it's something that normally happens in extremely premature infants....it happens either during pregnancy, birth or 2 days after delivery. blood flow did not get to that area of the brain for some reason and the white matter around that area died. normally they detect this 30 days after birth, not 3, almost 4, years later. the neurologist did not feel the need to put him on medication at that time (we saw him on march 31). this past wednesday night he had 4 seizures back to back. we were back in the ER and he had to be given versed through an IV to stop the seizure. he was put on keppra yesterday. i'm scared to death and have so many questions. i know this was long, lol, and i apologize.

 

[Oneboss302]

hi, my name is kristy and my 3 year old was recently diagnosed with epilepsy. i guess i can give his history... he was born 6 weeks premature but only had to stay in the NICU for 2 weeks due to his weight and the fact that he was not eating. he had to be tube fed. he was breathing room air from birth. at 15 months old he had a nasty throat infection and had fever. he had 2 febrile seizures in one day. i was told it was "no big deal". it literally took me almost a year to NOT freak out everytime he had a seizure, lol. anyway, on february 27 of this year he had another seizure but no fever this time. he has focal seizures where his eyes and head turn completely to the left. we went to the ER where they did a catscan. the catscan showed an area in his brain where one of his ventricles was smaller than the rest. the ER dr assured me that this could be completely normal. his pediatrician reffered us to a pediatric neurologist and an MRI and EEG were done. his EEG showed abnormal activity and the MRI showed that the area in his brain that looked different in the catscan was in fact NOT normal. he as PVL (periventricular leukomalacia) it's something that normally happens in extremely premature infants....it happens either during pregnancy, birth or 2 days after delivery. blood flow did not get to that area of the brain for some reason and the white matter around that area died. normally they detect this 30 days after birth, not 3, almost 4, years later. the neurologist did not feel the need to put him on medication at that time (we saw him on march 31). this past wednesday night he had 4 seizures back to back. we were back in the ER and he had to be given versed through an IV to stop the seizure. he was put on keppra yesterday. i'm scared to death and have so many questions. i know this was long, lol, and i apologize.

Kristy,

Let me first say I am sorry to hear about your Son. Also PLEASE don't feel bad about asking questions. That is what we are here for.

My son was diagnosed at age 2 (he is now 6) and we have been through it all. the endless nights in the ER, the Ketogenic diet, the EEG's. I know just how scared you are and how hopless it seems simetimes. Please feel free to ask ANY questions you need answered. and NEVER give up! We will find a cure for this one day!!

 

[Sevenup]

Kristy..

Welcome, I'm new here too. I'm sorry about what happened to your son the other night. I have a 4 yr old son with epilepsy also. (((hugs)))

 

[kristyEallen]

Kristy,

Let me first say I am sorry to hear about your Son. Also PLEASE don't feel bad about asking questions. That is what we are here for.

My son was diagnosed at age 2 (he is now 6) and we have been through it all. the endless nights in the ER, the Ketogenic diet, the EEG's. I know just how scared you are and how hopless it seems simetimes. Please feel free to ask ANY questions you need answered. and NEVER give up! We will find a cure for this one day!!

thank you so much! i guess my first question is about the diet change. i've heard about this but don't know anything about it. does your son still have seizures? i remember being told when he had his febrile seizures that he would grow out of it and that was really reassuring, lol. now...i'm wondering if this is something he will deal with for the rest of his life.

 

[Oneboss302]

Well as far as the Diet change, I assume you are talking about trying the Ketogenic Diet? We tried that with no results. But dont get discouraged!!! The night we were admitted to the hospital to start the diet, the doctor introduced us to a little girl who was also starting the diet that night. At first her body totally rejected the food, and My Son had no problems adjusting to it. About 7 days later, the girl who was not adjusting at first was now fairly seizure free. Although Anthony had no problems adjusting to the diet... it wasnt working for him. All I can say try try try. It cant hurt to try.

As far as growing out of it. I cant comment on that obviously because im not a doctor and every child is different. Just because 1 med works for someone, it dosent mean that it will work the same in another. I was told that there was less than a 4% chance of my son ever growing out of his seizures. At out last visit, his EEG showed only minor slowing (unusual brain waveform activities) and ZERO spikes!! the doctors were literally Amazed and gave Anthony the nickname "Miracle Child". As far as the Meds hes on, they dont want to change anything right now because they are so well controlled. I was told that if we took him off the meds and he goes back to having the seizures, that there is no guarantee that going back on the meds would work the same as they are now. Unfortunaly hes going to have to be on the meds for his entire life.

 

[kristyEallen]

Kristy,

Let me first say I am sorry to hear about your Son. Also PLEASE don't feel bad about asking questions. That is what we are here for.

My son was diagnosed at age 2 (he is now 6) and we have been through it all. the endless nights in the ER, the Ketogenic diet, the EEG's. I know just how scared you are and how hopless it seems simetimes. Please feel free to ask ANY questions you need answered. and NEVER give up! We will find a cure for this one day!!

thank you so much! i guess my first question is about the diet change. i've heard about this but don't know anything about it. does your son still have seizures? i remember being told when he had his febrile seizures that he would grow out of it and that was really reassuring, lol. now...i'm wondering if this is something he will deal with for the rest of his life.

 

[kristyEallen]

Well as far as the Diet change, I assume you are talking about trying the Ketogenic Diet? We tried that with no results. But dont get discouraged!!! The night we were admitted to the hospital to start the diet, the doctor introduced us to a little girl who was also starting the diet that night. At first her body totally rejected the food, and My Son had no problems adjusting to it. About 7 days later, the girl who was not adjusting at first was now fairly seizure free. Although Anthony had no problems adjusting to the diet... it wasnt working for him. All I can say try try try. It cant hurt to try.

As far as growing out of it. I cant comment on that obviously because im not a doctor and every child is different. Just because 1 med works for someone, it dosent mean that it will work the same in another. I was told that there was less than a 4% chance of my son ever growing out of his seizures. At out last visit, his EEG showed only minor slowing (unusual brain waveform activities) and ZERO spikes!! the doctors were literally Amazed and gave Anthony the nickname "Miracle Child". As far as the Meds hes on, they dont want to change anything right now because they are so well controlled. I was told that if we took him off the meds and he goes back to having the seizures, that there is no guarantee that going back on the meds would work the same as they are now. Unfortunaly hes going to have to be on the meds for his entire life.

thank you for that information. i was told that there are 2 problems with the keppra. 1.) it doesn't work on every child and 2.) it could cause SEVERE personality change. if it does, we'd have to try a different medication. they say the odds of it happening are pretty low, but we're low odds kinda people. i'm on my daughter (my youngest) was conceived with an IUD. she's going to be 2 in july. i JUST found out sunday night that i'm pregnant AGAIN....and once again had an IUD. LOL!

 

[rackelsmom]

Wow, you do know how to beat the odds don't ya! Congratulations on your impending new one...

Keppra can be a very good drug. As long as there is no "Keppra Rage" and it works, I would stick with that.

My daughter is on the Ketogenic Diet, she is 8yo and 100% sz free for over a year. If your son fails several drugs, it would be my suggestion. We failed all the drugs and had several brain surgeries so Keto was our only hope, Praise God it worked!

Did they send you home with Diastat? It's a rescue med for just in case. Even after a year sz free I still won't leave home without it. Some fears die hard.

I'm so glad you found us here. Never hesitate if you have questions, just want to vent or want opinions.

Blessings,

Ann

 

[Dutch mom]

Welcome Kristy, I wish I would not have to welcome you here, but as you are here now: it's a good thing to be here so soon after your son was diagnosed. It's important as a parent to educate yourself about E. to understand what's happening to your child and top get a voice in his treatment. So do ask all your questions, express your fear, doubt and anger and share with other parents of (special needs) kids in the Nursery.

Me and my family live in Holland/The Netherlands. My eldest boy (age 10 in July) has developed severe braindamage due to non ketonic hypoglycaemia shorly after his birth. His first MRI as a small baby didn't show any abnormalities, but as he developed very slow both physically and cognitive, we knew something was (very) wrong at age one. At age 1,5 we saw his first seizures which were very similar to your son's (eyes, face and body all turned to his left side.) At age two a new MRI showed cortical braindamage and his EEG showed epilepsy. Suddenly he was a special needs, double handicapped kid instead of just 'delayed'. Unfortunally the epilepsy developed into the intractable Lennox Gastaut syndrome with all types of seizures between age 3 and 5. He has been on many meds but none of them worked. Finally his seizures were controlled for 90% thanks to the ketogenic diet. He started the diet allmost 5 years ago and in these 5 years the epilepsy hasn't been his (and our) biggest problem anymore.

Welcome in our home, make yourself comfortable, there are a bunch of nice people here willing to help you where we can. Conmgratulations on you pregnacy! I became a mom of twins (100% healthy boy and girl, what a gift!) when my eldest was 4 (which was not his best period...) We had a very busy first year...

 

[kristyEallen]

Wow, you do know how to beat the odds don't ya! Congratulations on your impending new one...

Keppra can be a very good drug. As long as there is no "Keppra Rage" and it works, I would stick with that.

My daughter is on the Ketogenic Diet, she is 8yo and 100% sz free for over a year. If your son fails several drugs, it would be my suggestion. We failed all the drugs and had several brain surgeries so Keto was our only hope, Praise God it worked!

Did they send you home with Diastat? It's a rescue med for just in case. Even after a year sz free I still won't leave home without it. Some fears die hard.

I'm so glad you found us here. Never hesitate if you have questions, just want to vent or want opinions.

Blessings,

Ann

oh yeah, they gave us diastat....i just hope i never have to use it. i keep one in my purse and one in my top dresser drawer at home.

i'm so sorry about your daughter. i can't imagine having to go through brain surgeries. but it's wonderful that you've found something that works. i'm worried about the medicine or no medicine for that fact not working.

thank you all so much for being supportive and giving me a place i feel comfortable to ask questions!

 

[kristyEallen]

Welcome Kristy, I wish I would not have to welcome you here, but as you are here now: it's a good thing to be here so soon after your son was diagnosed. It's important as a parent to educate yourself about E. to understand what's happening to your child and top get a voice in his treatment. So do ask all your questions, express your fear, doubt and anger and share with other parents of (special needs) kids in the Nursery.

Me and my family live in Holland/The Netherlands. My eldest boy (age 10 in July) has developed severe braindamage due to non ketonic hypoglycaemia shorly after his birth. His first MRI as a small baby didn't show any abnormalities, but as he developed very slow both physically and cognitive, we knew something was (very) wrong at age one. At age 1,5 we saw his first seizures which were very similar to your son's (eyes, face and body all turned to his left side.) At age two a new MRI showed cortical braindamage and his EEG showed epilepsy. Suddenly he was a special needs, double handicapped kid instead of just 'delayed'. Unfortunally the epilepsy developed into the intractable Lennox Gastaut syndrome with all types of seizures between age 3 and 5. He has been on many meds but none of them worked. Finally his seizures were controlled for 90% thanks to the ketogenic diet. He started the diet allmost 5 years ago and in these 5 years the epilepsy hasn't been his (and our) biggest problem anymore.

Welcome in our home, make yourself comfortable, there are a bunch of nice people here willing to help you where we can. Conmgratulations on you pregnacy! I became a mom of twins (100% healthy boy and girl, what a gift!) when my eldest was 4 (which was not his best period...) We had a very busy first year...

i was assured that the PVL would not progress, which was my main concern, and to think of it as a scar. his neurologist also said that PVL is usually bi-lateral but damon's is just on the right side of his brain and very small. he said he didn't see any difference in the function of the left side of his body than the right and that he's developing normally. i was also scared because everything i researched said that PVL was one of the main causes of cerebral palsy. i couldn't find any answers to my question if that could still happen. thank goodness it can't. it would have caused it when the PVL occured at birth or whenever it occured.

thank you for the congratulations....this was a completely NOT PLANNED pregnancy but we are so excited. this will be our 4th child. i never imagined myself with ONE kid, much less FOUR! =)

 

[skillefer]

Hi Kristy! Welcome to CWE. Yes, keppra can cause personality shift. Usually, it shows up as being really irritable. Here in the US, they call it kepprage. If it happens, vitamin b-6 supplements usually help. But definitely keep an eye out for it, and tell your neuro. You'll find that there are lots of parents, as well as patients, at this site. So feel free to ask questions, chime in, or just vent when needed. Also, congratulations on the pregnancy.

 

[kristyEallen]

Hi Kristy! Welcome to CWE. Yes, keppra can cause personality shift. Usually, it shows up as being really irritable. Here in the US, they call it kepprage. If it happens, vitamin b-6 supplements usually help. But definitely keep an eye out for it, and tell your neuro. You'll find that there are lots of parents, as well as patients, at this site. So feel free to ask questions, chime in, or just vent when needed. Also, congratulations on the pregnancy.

thanks! =)

i was told that the personality change would show up within a week sometimes within the first few days. we're on day 3 of the meds and so far he's been himself.

 

[tripletdad]

Welcome!

I hope that you find this board a great resources. I was diagnosed nearly 32 years ago when i was almost 9 and have led a normal life and I know how lucky I am. I have also seen great advances in the meds and the choices out there.

I am on 3000 mg of keppra but have been on a lot of meds since I was a kid and they have all had different side effects, some worse than others. The important thing to know is that ramping up or down from a anti seizure drug is a delicate balancing act, as is finding the right amount or combination so be patient. There is no perfect treatment, but if you are PROACTIVE with your doctors (dont hesitate to get multiple opinions) and monitor your child's health you and your child will get through this.

I think the best advice I can give is to restate that being proactive with your drs and getting 2nd or 3rd opinions is vital, as it has made a big difference with me.