I am another newbie that is trying to get some emotional support. My wonderful 13 year old son had his first seizure last year and in March seizures started to be a regular thing around here. To this date we have had 20 seizures. They are the full blown Tonic-Clonic (Grand Mals) and they are just as scary as the first. My normal looking boy is not normal and today we had to enroll him in school as a child with disabilities. A huge pill to swallow. Our local primary doctors put him on dilantin and the Nuero told us that this was a huge mistake. We are on the weaning process but it is a roller coaster. I just need a place to vent, cry and bounce ideas off of.
Another Newbie-Loving my son
- Thread starter gfoxx
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Hi! I am a Mom to an 11 year old beautiful girl who has had seizures since April. She struggles in school some but we have her on an IEP to accomidate her so she can be in a regular classroom. What do you mean by your son is not "normal"? Children with a seizure disorder (Epilepsy) are no different that a child with Diabetes, a heart condition, Asthma and are considered normal to me. A health condition doesnt define them. Why does your Neuro think Dilantin was a mistake? You would think treating the seizures would be a good thing. Are you weaning to try another med? Glad you are here. Alot of people to help and listen 
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Hi gfoxx, welcome to CWE!
I'm glad you've found us -- CWE's a great place for venting, crying, and idea-bouncing. There's a lot of information, advice, empathy, and support to be found in the different forums here. I hope you feel free to jump right in.
Did your neurologist say why the Dilantin was a "huge mistake"? It's actually a fairly common first-line medication for seizures -- it's inexpensive, well-tolerated, and you can get up to a therapeutic dose very quickly. I was started out on Dilantin, and it had the fewest tangible side effects of all the meds I've been on. Unfortunately, it can sometimes cause long-term problems with gums and with bone loss, so I eventually made the switch to another med (currently Lamotrigine). All the anti-seizure meds come with pros and cons. I hope the new med your son's neuro favors will do the trick.
Best,
Nakamova
I'm glad you've found us -- CWE's a great place for venting, crying, and idea-bouncing. There's a lot of information, advice, empathy, and support to be found in the different forums here. I hope you feel free to jump right in.
Did your neurologist say why the Dilantin was a "huge mistake"? It's actually a fairly common first-line medication for seizures -- it's inexpensive, well-tolerated, and you can get up to a therapeutic dose very quickly. I was started out on Dilantin, and it had the fewest tangible side effects of all the meds I've been on. Unfortunately, it can sometimes cause long-term problems with gums and with bone loss, so I eventually made the switch to another med (currently Lamotrigine). All the anti-seizure meds come with pros and cons. I hope the new med your son's neuro favors will do the trick.
Best,
Nakamova
I am the mother of 5 and this is the first child with a medical condition. This is something I can't fix and it feels weird to me. I am just saying that people that look at him would think he is just fine. This is a hidden illness and I am afraid at any given moment he will have another seizure. We were at a park this last seizure and people looked at us like we were freaks. I just wish people were more educated that my son just has a condition. Dilantin is an emergency seizure medicine and is not good for long time use. It causes bone loss and mouth decay. Both Neuros that we have seen said to get off the med. My son is now on Keppra, Dilantin and Lamictal. Each time we step down from the Dilantin we add a higher dosage of Lamictal. We were also given the emergency med of rectal Diazepam. This condition does define him. Unlike diabetes, heart condition or Asthma I have nothing to look for. There are no triggers. He is a 13 year old boy that got his first quad. Last year he got his scuba certification. He can't climb trees, play video games, play on the computer, go to a school dance because of the strobe lights or even drive a car until he is 2 years seizure free. He is a big time hunter with his dad and now we have even had to curb that because of the cliffs and rocks. This is a life defining time that we will deal with as a family
I guess after having a step back for a moment, my son's condition does define his condition. What he does with his condition defines him. I will not pretend everything is fine and let him lead a life of a regular 13 year old but we will find our normal.
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Welcome to CWE. You'll find this to be a very supportive community.
Janus
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Hi, I feel for your son because he is still the brilliant child he was before. Now it is just a question of getting the meds right and learning 'triggers' and stuff. We all share about our experiences and we all found different kinds of triggers and have experience with med trials etc. For many a diet change helped a great deal. There are other moms on here with the same kind of story so I hope you read their stuff. Best, ~D
My Son is in university (last year, took a year longer but he is in final year), he is doing work experience currently, plus study, and works the weekends, headed off to Australia last year for 6 week tour, boats, planes, surfing (the works)….he living the life of any young man and like your Son, he has T/C….
Suggest you keep a seizure diary and note everything out of the norm (simple notebook left on table would do it, other family members could also write in it if they see something out of the norm). Keep track of every single seizure, this helps to analyze triggers and deal with doctors, you may be amazed to find there ‘may be’ what was a hard to spot trigger.
What do his EEG and MRI results show?
My Son takes one med and together (as a family) we have fought tooth and nail to keep the dosage low (he hates the meds), he has made lifestyle and mega diet changes), we never stop looking for the potential trigger, closely watching his diet, sleep, rest, stress, emotional upset. He uses a lot of supplements to combat med effects because not only are people with E often short in overall vit and mineral levels, these meds drain them, and he is undergoing brain training (neuro- therapy /bio feedback). I could go on.
There is so much that can be done to further educate the family in Epilepsy.
Suggest you keep a seizure diary and note everything out of the norm (simple notebook left on table would do it, other family members could also write in it if they see something out of the norm). Keep track of every single seizure, this helps to analyze triggers and deal with doctors, you may be amazed to find there ‘may be’ what was a hard to spot trigger.
What do his EEG and MRI results show?
My Son takes one med and together (as a family) we have fought tooth and nail to keep the dosage low (he hates the meds), he has made lifestyle and mega diet changes), we never stop looking for the potential trigger, closely watching his diet, sleep, rest, stress, emotional upset. He uses a lot of supplements to combat med effects because not only are people with E often short in overall vit and mineral levels, these meds drain them, and he is undergoing brain training (neuro- therapy /bio feedback). I could go on.
There is so much that can be done to further educate the family in Epilepsy.
gfoxx, I can relate. I have 5 kids also and this is my first and only one with a medical problem. Makes me sad. I dont want her to be treated differently by anyone or embarassed of her condition. I still let her do most things kids do (I didnt at first) I just make sure shes wearing a helmet while riding bike, life jacket while swimming, and every adult she is in care of I make sure know of her condition and what to do if necessary. You are right, the fear of never knowing when a seizure may occur is hard to live with. Hugs to you Mama. You are not alone
chop456
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Welcome to CWE! You have found a beautiful place on the web for information and support! I, like you, have a child diagnosed with epilepsy. Paige is 14 and we are in month 8 of medication - still working on getting control of her morning myoclonics. Paige started high school this year and we transitioned her to high school with a 504 plan in place. If your son does not need academic support but you still would like to see some type of plan in place, I would suggest looking into a 504 plan. I am also a teacher and pretty versed on this-so if you need help or have questions, please ask.
Hi
Welcome to cwe ! I have a 5 year old with epilepsy,ADHD and austistic traits who I had to change from mainstream schooling to a education support school and I fretted for a while before the change . I am very glad that I did and the school sat with me and discussed the best way for the school to help him.
Epilepsy is definately a hard condition to deal with and the only way that I can help my son is by being upfront with him when the time comes and if he can be confident in himself and accept the epilepsy as a life change then other people may then be more accepting of him.
There will always be the looks and believe me I have had plenty of them but you would also be surprised how many people have offered me assistance or have shown interest when some of my sons behaviours were explained.
Chin up things are hard right now but you have great support in this forum.
Hugs
Welcome to cwe ! I have a 5 year old with epilepsy,ADHD and austistic traits who I had to change from mainstream schooling to a education support school and I fretted for a while before the change . I am very glad that I did and the school sat with me and discussed the best way for the school to help him.
Epilepsy is definately a hard condition to deal with and the only way that I can help my son is by being upfront with him when the time comes and if he can be confident in himself and accept the epilepsy as a life change then other people may then be more accepting of him.
There will always be the looks and believe me I have had plenty of them but you would also be surprised how many people have offered me assistance or have shown interest when some of my sons behaviours were explained.
Chin up things are hard right now but you have great support in this forum.
Hugs
Thank you for all the warm welcomes. Today may son had his 21 seizure since March. This time we were in the middle of a major store. The tonic stage lasted 3 minutes and the clonic was barely anything. I just wanted to scream. I think it is time for a siezure dog.
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gfoxx
I am sorry you are going through this. Its hard looking at a loved one go through this, but know you are doing everything. Your normal looking boy is as normal as you or anybody else, he just has more to cope with, and he does not have disabilities he has epilepsy and there is no reason that blame can be given. All you can do is love him and help him and I think you have shown that.
I am sorry you are going through this. Its hard looking at a loved one go through this, but know you are doing everything. Your normal looking boy is as normal as you or anybody else, he just has more to cope with, and he does not have disabilities he has epilepsy and there is no reason that blame can be given. All you can do is love him and help him and I think you have shown that.
Hi Gfoxx,
Welcome to CWE. As the others have posted this is a great forum.
I was glad to read that you had to rethink about you son.
He can do most anything, we just have to find different ways, and I think that is true of so many people.
I worked for over 22 years, with people telling me I should file disability. I refused to do so, I lived my life the way I wanted (with seizures and meds. side),!
Welcome to CWE. As the others have posted this is a great forum.
I was glad to read that you had to rethink about you son.
He can do most anything, we just have to find different ways, and I think that is true of so many people.
I worked for over 22 years, with people telling me I should file disability. I refused to do so, I lived my life the way I wanted (with seizures and meds. side),!
Hi your story is so familiar. I just joined also, my 10 year old has had 21 seizures in the past month. I don;t think the Keppra is working and the dr won;t prescribe anything else. It's so hard. He hasn;t been to school in a month. So hard to see him. He's gained over 5 lbs. I just WANT to cry everytime I see him I just wosh they would stop!
Hi Jeannie! Welcome! Im sorry about your son. My daughter is 11 and been having seizures since April. Why wont your Dr prescribe anything else? There are several different seizure meds to choose from. Keppra didnt work for my daughter either, but does help some people. Dont give up. Push for a change in meds. What kind of seizures is he having?