My son has epilepsy

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ny2ga67

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Hello everyone,
I am new to this site. I am a housewife and a mother of 2 wonderful boys. My younest son 9 has epilepsy. Juvenile Myoclonic Epilepsy (generalized). He started out with 20-30 seizures daily. He has had Several different medication changes and had suffered side effects with them all. He now takes 3 medications with minimal side effects and his seizures are down to 3-7 a day. Next month on June 8 he will go into the hospital for a evaluation and to see if he is a candidate for surgery. So needless to say we have been on this crazy rollercoaster. However, through it all we remain positive. In June we are doing the Magnolia walk/run for epilepsy. In July we are doing another fund raiser for epilepsy. I started a small local epielpsy support group with another mom. However, my proudest moment was a book that I had published. Through His Eyes is a educational childrens book on epilespy. I tell my son it is our job to help others out there that don't know too much about epilespy. We will see what June 8 brings us. No matter what we are a strong family and will get through this.
 
Hi ny2! Welcome to CWE. You'll find that we're a pretty supportive group. So feel free to ask questions, chime in, or just vent when needed. I'm sorry to hear that your son has had such a rough time with the seizures and the meds. Hopefully you find something that works for him. Just out of curiosity...have you done or investigated the dietary approach or EEG Neurofeedback? If not, there's info here in the library at this site. Good luck in June!
 
Hello! Good on you for all the work you are doing to raise awareness. We are still fairly new to this illness, both my son and I were diagnosed last year. I am currently fundraising myself but writing a book that's awesome! Hope everything goes well for you, keep us posted.
 
Hello!

My 4yo Katie gets myoclonic seizures, too. They are part of the many seizure types that come with Doose Syndrome (her diagnosis). Katie has tried 7 meds & they completely failed to control the 100's of seizures she was having a day - not to mention the side effects. On April 25, we tried the Ketogenic Diet. We weren't ready for surgery & had heard great success stories with it. The diet has already shown great promise for Katie. It is work & takes time but is worth every minute if it can bring us our Katie back!! Good luck with the upcoming procedures, I know those can be hard. PM me if you ever want to talk.

Kristi
 
Thanks for the advice-still trying

Thank you so much for your advice. I am going to keep an open mind and see what they have to say. Of course surgery is the last thing on my mind and even if it came down to that I would take him to another childrens hopital that specializes in the surgery he would need, just for another opinion. Till then I will just ride the highs and lows on the coaster. I am doing a walk in Georgia on June 20 to raise money for the epilepsy foundation. In July I am hosting a Glamourosity (purse Party) to raise money for the foundation. My book I wrote on epilepsy Through His Eyes those funds also go to the foundation.If everyone bought one book it would help out so much. Anyway I can try to help this casue I will. I even try to get in touch with some celebrities to see if they would be willing to help in someway. I figure if I don't try I never will get anywhere.
 
Hi there! Welcome to CWE, you have come to a great place for support. My daughter who is 9yo was diagnosed with complex partial sz's in March of 2006. She failed all meds, then had a grid surgery, 2 resections but the seizures still persisted. Then in November of 2007 we put her on the Ketogenic Diet. She has been sz free for over a year and now is AED free for over a month! I would highly recommend considering a nutritional alternative before you go surgical. I know I did the right thing for Rachel with the surgeries, she had a mass and if it had remained Keto likely wouldn't have worked, but sometimes I wonder...what if? I wish you the best with your efforts in raising awareness! They are to be commended and I'll be purchasing a copy for Rachel's school library! Thank you for writing it, I googled it and it looks GREAT!

Blessings,

Ann
 
Thank you for your kind words Ann and everyone who has replied. It means a lot to me to know that other people know exactly what you are going through. Surgery will be the last thing on my mind June 8. As for now we will just continue taking it one day at a time. This past Saturday he lost control of his bowels and wet his bed. Last month the same thing happend in school. So one day at a time is all we can do. Thank you again for supporting the book. I think Through His Eyes will help a lot of people. As you said I know a lot of people that bought the book that don't have epilepsy just to support the cause. They will be donating it to their library. Once again thank you for your support and kind words. Lisa:clap:
 
Katie has had incontinence episodes (both kinds) since February they are all seizure related and very unpleasant to deal with. You have my sympathy. So sorry to hear that it happened at school, too. I hope you can find some answers, soon! Very inspirational to hear about your book!! Keep us posted on how things go!!

Kristi
 
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