Hello...my name is Becky and my son Joaquin was diagnosed with Epilepsy this past January.
We have had quite an emotional journey since January and are still learning as much as we can.
My husband had petit mal seizures from age 4 to 14. It was something they didn't talk about in his family. They are from a small town and it's just something that was not known to a lot of people.
When our son was diagnosed, we decided to get involved and created a website to help spread awareness.
He was first diagnosed as Generalized and it seemed that the medication was not helping him. After a week in the hospital, they were able to determine that it is a localized epilepsy, but it spread so quickly to the rest of his brain, that he seems to have two different types of seizures.
We are trying to find the best path for our son and feel we have a great neuro that does have his best interest in mind.
We are looking to learn from other parents/friends of epileptic kiddos. Please feel free to contact me with any suggestions/comments. We feel we can never learn enough on our son's conditions.
Have a great day!
Welcome Becky!
Arlene Martell here. So glad you find my site - especially since Joaquin was so newly diagnosed. I am sure your head must be spinning with all the information that is available.
I know what an emotional toll this can take on a family. There are no easy answers because every case responds so differently to treatments available. You did not mention how old Joaquin was or too much about what the doctors have tried.
The reason I built this site, was for moms like you! You can read more about my son Adams story. We were one of the unlucky ones where the medication did not work, the side effects were terrible and he had multiple seizure types. Today, thankfully, he is drug and seizure free because I was not willing to give up on him.
The first piece of advice I can give you is the advice that I wished someone had shared with me when our journey began. "If the first medication does not work, there is only a 15% chance that the second one will work, then the percentages decrease from there". I was really upset having heard this after Adam was subjected to 6 different medications. I felt like I was playing roulette with his life.
The second piece of advice I would like to share, is that there are alternative treatments which are highly effective, and most neurologists will not recommend until a last resort. The Ketogenic diet is one of them. If would have done anything to have started Adam on this diet instead of trying drug after drug. Today he is seizure free because of the diet - but also suffered some brain damage because I did not find it soon enough.
Listen to my podcast with Jim Abrahams about the ketogenic diet. There are also two more podcasts about the diet from a mom and a medical doctor. They are eye-opening programs.
I wish you the very best and congratulate you on getting out there and doing research for yourself. YOU are the best advocate for your child!
Warmly,
Arlene Martell (Mom of Adam above)
Publisher, EpilepsyMoms.com
Joaquin Fimbres's diagnosis and current treatment
Joaquin is 3 years old, he had his first seizure 1 month before he turned 3.
He had his first seizure in October 08 and then we say none until January 09. This past Feburary, he started to have multiple seizures a day.
His neuro put him on Depakote and after 3 weeks it didn't seem to keep the seizures at bay and then he was put on Keppra...at the end of Feburary, he went from having seizures in the early morning to anytime during the day or night. He was hospitalized for a week, had a 24 hour EEG and an MRI done to see exactly where his seizures where stemming from. While in the hospital, he was put on Lamictal and his "longer" seizures have stopped. He started to have small head drops in the morning and is taking Zonisamide for them.
We are in the process of weening him from the Keppra and Zonisamide and will be trying to just use the Lamictal for his seizure control and Klonopin for Emergency.
His neuro feel that we can get these episodes under control within the next few months and our "big" goal is to get him seizure and medicine free within the next two years. Fingers crossed, it will take some time, that I understand. I also have a reserved apprehension, I know it may not go as planned. His neuro has also mentioned that we may have to try the ketogenic diet as an option, so I feel that she has his best interest in mind.
Thank you for your interest, I will be sharing your ebook and report with my husband and will continue to fight the good fight against epilepsy!
Becky Fimbres
Thanks Becky
Thanks for the update. I wish you well with your upcoming appointments. It sounds like your neuro is trying many options and it will be up to you to report on how you feel it is progressing. Don't be afraid to try the diet. You will not know who it works until you try.
Please keep me posted on your progress. I know these things seem to get drawn out and it takes so much time to make little changes but keep positive and take it one step at a time.
Warmly,
Arlene Martell (Mom of Adam above)
Publisher, EpilepsyMoms.com
My story
My beautiful son was diagnosed this past Jan.09 with epilepsy. His first seizure was in Oct.08, he had a 5 minute seizure. My husband had epilepsy as a child, so our pediatrician had us see a neurologist right after. His EEG showed sign of Generalized epilepsy. No seizures, no starring spells, until January 09.
Towards the end of the month, he experienced a 2 minute seizure in his sleep, and then another one a week later ...lasting 5 minutes. He was then put on Depakote and we were doing okay for about 3 weeks. Then towards the end of Feb., we had our first seizure during the day.
All of Joaquin's seizure up to this point had occurred in the early am between 2 and 6am. After the 1st daytime seizure, we started to experience drop attacks and he was put on Keppra and off of Depakote. It didn't seem to stop them and our neuro decided that he needed to be seen by a neuro closer to us. We moved from Phoenix to Tucson almost 2 years ago and we still kept our pediatrician and so when we had the first seizure, we saw the neuro that she wanted us to see.
So in order for our son to be seen immediately by a neuro here in Tucson, he was admitted into the hospital and was given a 24 hour EEG. They were able to record 4 good seizures while we were there. He was put on Lamictal and it seemed to stop the longer seizures.
On our follow up, with our new neuro, she explained that he has a localized epilepsy that generates from the top left hemisphere of his little noggin. She feels that we have him on too many medications and we are in the process of weening him off of the Keppra and also the zonisamide that he was given to help stop his morning seizure activity he has... We are still increasing his Lamictal and weening him from the Keppra and will continue to work on weening him from the rest of the medications.
His prognosis is good, his neuro feels that within the next few months, that we should have him down to 1 daily medication and one for emergencies and within the next 2 years to have him seizure and medication free. We are very optimistic, but also know that we could spend the rest of his life fighting this condition.
As his mom, I will not stop trying to find the best treatment for him. He's an amazing little boy, who isn't letting this slow him down...and he gives me the strength to keep fighting!