I cant tell you how happy I am to have found you all

[Chaz1]

My son who is now 26 was diagnosed end of 2009 with Epilepsy, no referral to the type, just he has Epilepsy now take the pills and go live with it. Wow, was I shocked to see that medication start working….scary business. Well, as for take the pill and go live with it, we won’t be doing that. My son has in fact suffered with Epilepsy undiagnosed since his puberty, makes me feel like a bad parent, why didn’t I know!. He is now taking Depakine (valproic acid) and though he was controlled for a year and a half he is having some major breakthrough seizures these days, due to I believe stress of new relationship and simply managing life - at the prime of your life. His seizures used to be nocturnal T/C only but are now progressed to daytime, scared the life out of me. After his fist day time T/C I signed him up for Neurotherapy and am praying this will give him some inner peace, he has had +/- 10 sessions so far, still had some breakthroughs but I see hope there, his neurologist said he never heard of Neurotherapy, yeah, yeah, what kinda scientist is that..!....We have now found a Epilepsy specialist center that he will attend soon, that I pray will help my child live WELL and manage his Epilepsy. I am to be honest broken at this stage, having had to do so much research myself and try introduce various alternatives to a young man who for the 1st 2 years could not utter the word Epilepsy, but he is now opening up . I can’t begin to tell you the support I have felt when reading each and everyone’s stories and am so inspired to not giving up and to helping my son live a full life despite Epilepsy. My son will never be a number in a neurologist dairy. I am going to share with you our journey, because without you all - I just might have gone insane..THANK YOU..

 

[Nakamova]

Kudos to you for hanging in there and being persistent about finding ways to help your son. Let us know if the neurotherapy makes a difference -- how many sessions will he be having overall?

 

[Chaz1]

due to have 20 then another EEG to access, Ill keep you posted...want to push for as many as possible..because reasearch shows, it takes time. they said if that does not help then we can try conjunctive behavioral therapy... He is also taking Omega 3, Vit E and Vit D and now working on (trying to teach him) content of foods (like MSG) All of which the neurologist said nothing...sorry to be dogging on these neurologists. I guess you can see I am angry..but WE remain positive and on the look for self help where possible and safe.

 

[StarfishRae]

Hi - its so nice to hear a mother being so supportive. You're an inspiration to many. I hope your sons therapy goes well. I've never heard of it but I'm new to epilpesy so keep us updated.

 

[Chaz1]

Hello, thank u so much…you and I joined this wonderful forum today so we will have the same anniversary.. I am so sorry it’s taken so long to get any diagnose for you, if I may suggest a wonderful read to you, I have no doubt it will lift your spirits..it’s called Epilepsy: A New Approach - What Medicine Can Do, What You Can Do for Yourself" by Richard, Adrienne..
we can be glad we joined this crew, they tell it like it is and give much, much inspiration (so read and read), its so important to offload the burden sometimes, share what we learn be it good or bad result, the dilemmas (and boy we all have them), and well, if even offloading only.. I can’t begin tell you what solace this wonderfully honest forum has given me..I will be watching for your updates..and you can count on seeing mine…

 

[Chaz1]

this morning we will go see my son's current neurologist and to bid farewell to him, though this may come as a surprise to him....we will thank him for his services and will not be too harsh on him, after all he is a busy man, far too busy to have any real time to look at my son in a human light, the whole person...But he too is only human so we make sure to leave him with dignity. Look forward to the new chapter at the Epilepsy specialist center..where hopefully my Son can receive overall care from people who understand and are compassionate about E and are open to the alternatives..the overall well being of my son Joshua.

 

[RobinN]

6.5 yrs ago my then 14 yr old began having seizures. Most all were tonic clinic and at the worst, she had six per month. Fast forward, by not leaving a stone unturned she has just celebrated a year seizure free (and med free for about 4 yrs). She is now 20, going to college, working, and dating.

You can read our journey which is linked in my signature.

 

[Chaz1]

Robin, thank you! His neurologist was kind and gracious this morning and told my son he could come back anytime... But he did recommend an increase of meds, that my Son refused saying he wanted to carry on with Neuro therapy as he believed it was helping him find peace within in his head. Normally I would( have to) do most of the talking at the nuero but not this time, my Son took charge and I listened in awe. His neurologist fully recommended the new Epilepsy specialist center for my son, thank God.. I am so glad it all went well, both for my Son and his neurologist (who I know cares in his heart, just does not have the real time) that they could part ways in kind humane manner...the guilt that I carry for ‘carrying the torch’ is heavy at times, but will just need to grin and bare it because when I read what you wrote about your daughter I am so hopefull….WOWOWOWOW!! I’ll be reading your journey - all of it. Thank you Robin, thank you..

 

[MuayThaiFighter]

Thank you for your story, it is very inspiring for me. I am glad that your son is having some progress and that he has a good parent helping him find the light of health. I am 24 and have had to advocate my own health. So dealing with it alone is very difficult but has made me much stronger. Stay positive and your son will get strength from that. God bless.

 

[RobinN]

MTF - I hope you know that you are not alone now. CWE is extremely supportive, with a wealth of information to browse and discuss with your doctors.

 

[Chaz1]

Hello MuayThaiFighter, thank u for your kindness. At CWE I feel the warmth all around me... I am a newbie member here to, but before I joined Id been reading this forum for some time. Have learnt so much, like in conjunction with meds, there so so many safe alternatives that are worth considering. Please share your ups and downs with us, we can all learn so much from each other.Keep coming back...I’d love to know how you are getting on; I have deep admiration for your positive spirit.

 

[Greg Johnston]

Nice to meet you. This is sorta my reintroduction. I'm relatively new here too. I'm glad I found this forum, and am learning everytime I read it. My last post was right after I had my first known Tonic Clonic seizure, in July 2009, but I had so much to deal with since them, that I was reluctant to post anything, and perhaps feeling ashamed ( I know I shouldn't have), about all the unfortunate situations that I had to deal with in the past 2.5 years. It's really nice to know that there are great people here we can talk to.

 

[Chaz1]

Hello Greg Johnston, so nice to meet you. I read your reintroduction and was simply put, stunned and royally disappointed in society; read it more than once with a sad heart If we are honest that’s what we are up against so better know it and know our rights. I learnt a lot reading you story, thank you for being so honest, I can prepare my Son better for the real world. My son had T/C this morning; I coached his lovely girlfriend via phone, for 1st time she did not call the ambulance. He is having many breakthroughs at the moment, life stress - but you know all about that. He is in neuro therapy/ bio feedback as well as taking meds.He said he recovered faster than ever after this morning’s T/C, he believes the neuro therapy/ bio feedback is playing a big roll so outta of the negative comes the positive? Keep sharing please…

 

[Nakamova]

Chaz1, sorry to hear about your son's seizure, but good news that it seemed less traumatic. It would be great if the biofeedback is playing a positive role. I hope to try neurofeedback myself one of these days.

 

[Chaz1]

Thank u Nakamova. Yes looks like someting is shifting so that alone brings hope...I have felt your warmth from the minute I arrived, thank u. I do hope and pray you will have the opportunity to try out neurofeedback.