New and Need Answers

[BensMom]

Hi everyone,

My name is Rebecca and I am mom to a beautiful bright-eyed 6 year old boy named Ben. He was diagnosed with absence seizures when he was 4 ½ (every few seconds the monitor would spike with a seizure during his diagnosis EEG) and was put on Lamictal. He is now on 200 mg a day but there is so much going on with him and my Dr. is of NO HELP. I feel very alone so I am glad to have come across this board.

Thank you for reading and I look forward to learning more.

Rebecca

[TeeTees]

Hi BensMom,

Welcome to CWE

I'm sure you'll find more answers on this site than any Doctor can have knowledge of.

Ask away when you're ready

[RobinN]

Hi Rebecca... pretty name. It is the one I chose for my daughter.

Our doctors in the beginning were of no help either. I was extremely thankful that I found information online. I call it the University of Online Research. Bernard linked me here, and I have not left since. Other forums just do not compare.

My daughter has Tonic Clonic seizures. Soon I hope to change has... to had.
We went on the "anti-seizure" med route for 1.5 yrs and had terrible side effects. Absolutely no way we were willing to live with them. My daughter is currently doing neurofeedback therapy and has had no Tonic Clonic seizures since beginning the treatment. We also have created a healthy nutritional plan for her, and she is supplementing with a variety of vitamins and minerals that support brain health.

Welcome to CWE. I hope we can fill in the gaps where your conventional doctor is lacking. Or at least give you a lot of questions to ask on your next visit. Make yourself at home.

[Mr. Pibb]

Glad to have you visit CWE I have been visiting for a shrot while and feel very at ease. Here the people are great and the answers to you questions are often found here, as this is the meeting grounds for those questions that we just can't find the answer for a great group of people
Jerry

[tinasmom]

Welcome BensMom - We are on our 3rd doctor, this one really listens to us. It didn't take us very many visits with the other two to know that we just didn't feel comfortable with them. I did a lot of research on doctors nearby and also talked to a lot of people about their doctors. If your insurance allows you to, see another doctor and another until you find one you like.

[hawke86]

Welcome to forum.

[Bernard]

Hi Rebecca, welcome to the forum.

My wife completely eliminated her multiple, daily absence seizures over 12 years ago with EEG neurofeedback. It's worth looking into.

[hawke86]

Does anyone experience mood changes? If you do how long does it usually last. Does anyone expereience it that often? With me it can last for months or longer. Has anyone experienced PTSD ? I can say it's no fun.

[nana1]

Hello! welcome to CWE! This is a good place to be. i have only been on for short time, but has helped alot, has helped in letting me vent and getting questions answered. I do talk about meds with other people. Hope you enjoy stay here,




nancy

[PurpleAngel]

Welcome!! My Daughter is 8 ands was diagnosed in November of 2004 when she was 4, although I am sure she had been having seizures for at least a year prior. She mainly has multiple absense seizures daily. Her latest EEG showed abnormal activity approx. 15 times an hour, which is much better than when we started.

We are on our 3rd Dr. The first two were adult Dr's and in my opinion didn't care about her. It was just push meds upon meds, never mind that she was sleeping 18-19 hours out of the day. I found a pediatric neurologist 2 years ago and she is great!! Kater makes appointments difficult as she refuses to cooperate, talk or perform any of the tests she is asked. (very head strong lil girl!)

[alivenwell]

OOOHHHHHHH! Sounds familiar! I was always headstrong. It sounds like she'll cope quite well with this disorder.

We have to be determined to get past the stigma, side effects, and other 'stuff' that comes with epilepsy.

It's great you swapped adult for pediatric neurologists. I was on a heavy duty medication as a kid that really made a zombie out of me. And, our regular physician took a look at that med and could not see why a neurologist actually gave that stuff to a kid!

Kater probably remembers bad experiences from her past. Hopefully, she'll build a good rapport with the pediatric neurologist as time goes by.

Maybe some form of persuasion in the form of trading a wanted toy for participative behavior would be in line for her? I used to shop with my kid when he was really young. He agreed to tolerate staying with me while I shopped for my 'mommy toys' like clothing.
He would get his turn for his toys as well.

As she gets older, she'll realize you actually cared for her health.

[RobinN]

Something that was suggested to me when my son was small and I needed special behavior from him. Go shopping and buy something that is only used during doctors visits. It can't be played with at any other time.

It worked for me. When mom needed to be on the phone for extended time, there were phone toys, and then put away after. I had no interruptions.

[PurpleAngel]

At her last appointment I did bribe her, with of all things a bag of pretzels. She asked for them as soon as we walked through the door. I told her if she could behave, act like a human, listen to the Dr., and do what she was told she could have them. If not she would go without and have a snack when we got home. IT WORKED!!

Then this past March she had to find someone to ask about their career, where they had gone to school, when they decided what they wanted to be as an adult... I asked her who she wanted to ask, and she said her Dr. so she could know her better. I was blown away, but helped her write the letter. She was beyond thrilled when her Dr. wrote back to her, herself. So maybe that she has realized that her Dr. is really just another person (with a whole lot of schooling) she will be better at cooperating.

[RobinN]

At her last appointment I did bribe her, ...

I like the term "reward". I just think one has to be careful with rewarding with food. Good to hear that she has made some positive connections to her doctor.

[PurpleAngel]

I as a rule don't use food as a reward. It was just something that was happening anyway. Whenever we walk into whichever medical office we are at I am bombarded with "May we get pretzels or fruit snacks, please?!? Since it was only her with me on that day I had one of those "llightbulb" moments, and thought she really should only get a treat if she can behave.

For the last appointment she knew that she needed to act like her normal self or I wasn't going to stop at the store for her to use her birthday gift card.

[RobinN]

I know... some days it is what ever works.
Definitely have been there myself.