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Just Thinking: A parent of an epileptic child

Since I joined the group Philippines Moms for Marijuana, a lot has changed. I gained friends from fellow parents, became chat buddies for the purpose of learning how our children’s drugs affect them. Before I joined, I thought I was the only one, I was desperate for answers, for support.

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And then I saw a lot who are in the same plight as I am. Other parents wouldn’t understand us. One person even blurted out,

“Ano ba yan, mag 3 years old na anak mo di pa nakakapagsalita?” (Your child is turning three and she doesn’t even talk?) What’s worse is, even if I explain the developmental delay, they don’t seem to understand the condition. I guess I should be the one to understand.

I am writing this because I want to give you a glimpse of just one of those scenarios that puts me off. 

What I liked about sharing thoughts with other moms, is that there are stuffs I learn that doctors won’t mention to you. You’re lucky if you’ve got one who actually takes careful notes, won’t forget your child’s case, but those are rare. Maia’s neuro session only takes about 5-10 minutes. And that’s it, your money goes that fast. I found out other parents have been testing their children with ‘phenobarbital assay’ or ‘depakene assay’, and I was like , “What is that?” This mom that I had a convo said that is helpful in determining how the drug levels are in the blood, so you know if it’s toxic or not. And so I wondered, why didn’t Maia’s doctor suggested for an assay before? My daughter’s been taking medication since she was 3 months old and never had that assay. And so, we as parents the ones who really have to source all info out there, study each drug’s characteristic, and even check on diet. I asked the neuro before on what food should Maia stay away from, and she said nothing. But then fate favors you and you meet people who will say, this food will trigger seizures, refrain from it. It’s a little disturbing that a neuropedia won’t even say something.

My daughter is now on Keppra and Phenobarbital. Even with these pharma drugs, her seizures come as they like. I don’t want to try more and more pharma drugs that would breed again another type of seizures. It is a trial and error program, plus monstrous side effects. Financially, it is hard.

I just want to say, I hope politicians see our day to day life. It would be helpful if they give us legal access to medical cannabis. Some of the little hopefuls from Phil Moms already succumbed. We actually don’t have TIME.

You can never bring back time. We want our children off pharmaceuticals! 

Maia’s mom,

CEL

 

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7 Comments

  1. Oh wow, glad you commented on my blog so that I could find yours! I was thinking about some of what you said above just this morning. I totally hear you. Looking forward to following your story. Your daughter is beautiful!

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  2. As a mother, I feel for you too. I know it’s difficult to stay away from negative people/vibes, when it’s there. Just ignore it. And I know too how difficult it must be to find the right doctor in our country. Talking to other moms, especially the ones who are in a similar position will help a lot. As for the doctors, don’t hesitate to keep asking questions, even if they will find you “makulit”. And if they do, perhaps, they are the wrong doctor for you and your daughter. A good doctor should be able to answer ALL your questions patiently. Will keep you and your daughter in my prayers. All the best, D.

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  3. This breaks my heart. To see a mother and child experiencing what you have shared here.

    We face the same situation in the United States. My husband has only one eye. He has glaucoma and also some other eye conditions. They give him all of these different drops that have horrible possible side effects such as congestive heart failure, and kidney stones. Marijuana is helpful and does not have those bad side effects, but only a few states in our nation permit the use of medical marijuana. We live in a state where it is not legal. We are hoping that will change some day.

    Blessings,
    Theresa

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    • mariqia

      Yes MMJ is good for glaucoma..it’s sad when the first med they prescribe are pharma drugs. Thanks T as always. ♥

      Like

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