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  • Macau

      23 November 2018

    As some of you may know, we were now in Macau and seek more doctor advise in Hong Kong. We will stay there until January 2019.

    The doctor in HK suggested we should drop Ketogenic Diet as this doesn't reduce his seizure activity and lack of protein. Also, suggested one of the medicine can be reduced to have less side-effect because Tenoch had some developmental delay due to the side-effect.

    This journey is not easy for us, requires huge expenses but thankfully my in-laws support a lot and the money you donated had helped a lot too. Here's some of the summary.

    In HKD approx:

    1. Doctor appointment in HK ($5000+$2500+$2000)

    2. Medicine to help Tenoch sleep better ($3000)

    3. Chinese Medicine ($2000+$2500)

    4. Transportation to HK a few time to seek the doctor ($4000)

    5. Study material to help his development a bit faster ($3500)

    6. Some classes that Tenoch can continue learning ($8000)

    We also want to bring Tenoch to explore more interesting things, to widen his border to not just living in his world of rainbow and train. Also, he had missed all the tasty food for this last 2 years due to the Ketogenic diet. We want him to try the different type of foods.

    We are still observing his progress, sometimes we still think Ketogenic diet still help a little bit to the seizure aftereffect. However, he is much happier, heavier and more energized, so getting rid of keto probably is a good decision to make.

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  • Tenoch situation

      8 March 2018
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    His situation is pretty much the same, having multiple seizures after about 7 to 10 days seizures free, seizures happened when he slept.

    This is becoming a regular pattern of our life, kinda get used to it, but indeed we prayed that he can be healed. Tenoch is growing slowly, at least we can see improvement, but the medication and seizures really make him hard to learn.

    Our family had made a huge decision of planning to go back Hong Kong and Macau for about 6 months time, so that we will have more time to seek for experience neurologist in Hong Kong.

    It is a huge step for us, and surely requires lots of commitment. Hope that they can diagnose a better solution for Tenoch.

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  • Tenoch's situation

      14 November 2017

    In this past few months, we experienced a pattern that Tenoch is seizure free for about a week or two and then having multiple seizures within one day.

    This time, Tenoch have 20 days seizure free, it was very encouraging for us, and we kinda think that he is improving and start to have some time to make a good plan for Tenoch's development and for the family. However, he had multiple seizures again within a day. Even worse, he have seizure during the day while he was awake too (He don't normally have seizure when he is awake for quite awhile), so he fall to the ground few times while standing. Luckily he didn't bump into anything. Everything just flash back to about 2 years ago.

    All the hard work we tried for this 2 years seem didn't help Tenoch at all. It is very discouraging and really no word can explain our sadness. We want our son to have a happy childhood that he can play, eat, and have fun with other kids, but end up he had no strength to play, he can't eat normal kid food, and being different with other kids. I really hope that he can get better.

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  • Bought two shoes and Keto strips

      7 November 2017

    Due to Tenoch's seizure, he have alot of work need developed. One of them is for his walking, I don't know is it because of seizures, his hand and feet often stiff inward, especially when he is nervious. Saw a specialist and suggest him to wear a special designed shoe pad to twist his feet into a better position, therefore we have to bought two identical shoes in outlet store for his indoor and outdoor use. Hope this will improve his walking.

    Also, I don't know why, our prescription for the Keto strips is always not enough for us to use for a month. Therefore, we need to buy this as well, those strips are not cheap.

    Thanks for your support!

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  • Seizure continue

      20 October 2017
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    We didn't see a major reduction of seizures after we started the ketogenic diet. Each month he had about 20 seizures and most of them appears multiple time a day.

    Thanks God he is recovers well, past 2 months we have seek through different therapy for his language, muscle development. Hopefully he will improve abit faster.

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