Posts Tagged epilepsy

Back home

Our last ABR trip ended last thursday, since then we’ve been trying to get used to our new daily rutine. Everything is so different now! The good thing is that non of the new exercises requires us to stand up in one foot for an hour our more, jijiji, this is great. The even better thing is that we brought the ABR machine with us! We are really happy about it and lucky for us our daughter likes it.

We’ve been ding ABR for a year now and the changes we’ve seen are amazing. I dont have pictures yet, but they are truly amazing. We almost cried when we saw pictures of her first evaluation… What a skinny girl she was! Now she has a big back, a beautyful belly and she bears some weight on her arms, she is starting to sit, hold her head, talk… We love ABR.

Another interesting thing is that we spoke a lot with the trainners about our alternative treatment for our daughter abnormal braing waves (for me she doesnt have epilepsy). I love the fact that we are on hte same path here with ABR. They understand seizures very different from regular medicine (if regular doctors understand seizures at all…). The trainner have talked to Mr. Blyum about our treatments and they are nothing but supporting, for them is this kind of stuff that works. Not the meds, the meds only make things worst. Reeeaaaaally worst.

FYI, our alternative treatments are:

  • special diet without casein (milk protein) and sugar (she eats a little bit of gluten, the one of the highest quality).
  • One ABR exercises that helps her with brain fluids circulation
  • Mud helmet for circulation also
  • Cold frictions, that are a very useful natural treatment. Is like doing a ‘reboot’ to the body. If she has a seizure again, this is what will stop it.
  • Tons of herbs to ‘feed’ the nervous system

And all this results in a clean and normal EEG almost inmediatly. With no side effects, just a happy, awaken and healthy girl.

So we have several reasons to be happy with ABR. Is nice to work ‘with’ someone and no ‘against’. Besides, all the kids we know in ABR are doing so much better, they’ve had an amazing progress. Our daughter not so much for the last period, but… She was hospitalized 3 times in 5 months, she was really sleppy with the epi meds and because of them she even had kidney issues that made her really sick. So this period has been really hard for her. To do justĀ  ‘as expected’ and not ‘great’ like last time, ir more that we can ask for. Is another thing that we love about ABR, that if you do the hours, you’ll see changes no matter what.

I hope next time will be different. Now that she is much better and that we have the machine, we are positive she’ll be much better.

Advertisements

Leave a Comment

GFCF and vegan!

So It’s been a while since my last post. Last seizure turned our world upside down. She was until then taking 2 drugs for her ‘epilepsy’ (I don’t think she is epileptic, it’s just another symptom of her brain damage to me). When she first sized, almost 3 months ago, doctors put her into a coma… And she has never been her self again. The epi drugs she is in makes her really sleepy, she is not as happy nor as active as she used to be. With this second seizure doctors gave her another epi med, one that makes her even MORE sleepy and absent of this world.

I’m not settling for this. I’m not putting my daughter to sleep for months or even years. I’m just not!! But… doctors love drugs, it’s all they can do. So we started to search for our options. And we found a lovely one: the GFCF diet. No, it’s not only for autism. It can also work for other neurological disorders such as epilepsy. Googling around I found out Dogtor J recommendation of this diet for epilepsy, and many success stories. So we were sure, we had to go GFCF and give it a shot!

Then I found out that a vegan doctor that has treated my mother and grandmother for almost 20 years, also happens to be a neurologist. So I though he could help us getting her off the meds as soon as possible. And as early as tuesday, just a couple of days after the second seizure, we had our appointment with him. And it went GREAT! He told us he couldn’t just treat the epilepsy because it was a part of her brain damage (ding!) and then explained us his theory about seizures: a circulation problem. So he gave us some tools to improve her circulation along with a great diet full with nutrients for her brain and nervous system.

And guess what? I wrote to ABR about our new treatment and they were so excited. Turns out they see seizures the same way!!! I was so happy to read this! It reassured me we are doing the right thing!!! The trainer said doctor’s explanation of seizure activity follows along the same line as theirs. He was so happy that we’ve found this doctor, he said his excellent approach and very open mind to the entire situationĀ  will be of great value for us. I agree!!!

So on wednesday we bough all we needed to start her new diet (just her’s for the moment) and on thursday we started. Just a week before it all started. So I’ve been busy!!! But guess what… The very first day she slept all night. She hds never done this before!! We’ve had so many sleeping issues… And now she has slept every single night since she is not eating cow milk. Can you believe it? Four years not sleeping, four days sleeping. Is this working or what?

Comments (3)

She seized again.

I hate it. For the second time in her life, my daughter seized. What a horrible feeling!! Absolutely horrible. I think ‘cerebral palsy’ is much easier to accept that the ‘epilepsy’ diagnose. With cerebral palsy you start a new and different life after saying goodbye to a lot of preconceived ideas. So it hurts a while, but life goes on. But epilepsy means she can seize at anytime, it’s a permanent fear. On friday, her backpack was all set up for preschool, it was a normal and happy day… Then in 1 second everything was upside down.

She woke up weird of her nap. She was able to talk and move, but she just wasn’t herself. So it took me a while to say ‘Ok, this is a seizure’ and to apply the prescribed antidote (Pacinax). And now I know that if the seizure lasts longer than 20 minutes, then it’s arbitrarly called a status epilepticus and she has to stay in the hospital for observation. So, imagine my guilt… But she was even talking! Talking enough to say ‘yes’ when asked if her arm was bothering her.

It hurts so much. It kills me that she has to go thru all this. She is a f***ing child! She is MY child and I still haven’t figured out how to help her. Sometimes I think: she is tough girl, she’ll be better… But no child should have to live thru this! It’s a lot to ask. Doctors are just filling her up with drugs that are not even working, so I’m looking for an alternative way. Tradicional medicine is just lost when it comes to the brain.

Comments (3)