Noah's Genetic Results
You all know that we've been doing biomedical treatment for Noah since he was 19 months old - but he is such a slow responder and we just couldn't figure out why. I mean, it seems we have tried everything and he just doesn't seem to respond as well as other kids.
Well, almost three months ago, we sent off for a Nutrigenomic test which takes Noah's DNA and lets us know how his methylation cycle works - which is basically his body's ability to detox. It's actually a bit more scientific than that, but I have a hard time getting my head around it all, so that's the easiest way for me to understand it. Anyway, we got the results back last week: 1 page of results and 78 pages of explanation. Now you know what I've been doing this past week.
I still don't understand it all, but basically the methylation cycle has a long way route and if it's compromised, then you take a short cut. Well, Noah's long way is compromised and so is the shortcut - which means he has problems in both of those areas. There's also a bunch of other things, too, but I'm only on page 21 and I've had to read the first 21 over and over just to finally get it all to soak in. But what it means is that we can give supplements to help overcome these mutations, but it's going to be a long and tricky and hard road. It could take several years - but we should be able to get his body working again. But one problem is that some of his mutations counteract each other. For example: he has a mutation that means he needs B12 more than anyone else, but he also has a mutation that fights against B12. So, his body is in desperate need of it, but if he gets it, his body also fights against it and causes all sorts of problems. So we have to go low and slow. We're talking uber baby steps here, but it is possible for him to get better.
It's heartbreaking, but it could be worse. I know of other kids who have worse mutations than Noah does. On a plus side - it does give us a blueprint to follow and steps to follow and lets us know that Noah's not going to wake up tomorrow and be fully recovered. This is a long process and he'll get better over time, but there is no magic bullet for Noah. And finally realizing that - after 3 1/2 years - is such a relief. It just takes off so much pressure - in a weird way. We'll just continue to live our lives and do therapies with Noah and supplement him so that he can get his body back together and start to detox - but knowing that genetically it's going to take years is helping us to relax a bit.
I was trying so hard for Noah to be recovered before he starts kindergarten next year. And, by the grace of God, I know it can happen - but without God's hand in that, he won't be recovered by next year. But a year from now, he'll be a year closer to recovery - and that's how we're trying to shape our mindset. It's no longer... "He HAS to be mainstreamed by Kindergarten". It's more of "Where is Noah going to be a year from now? 5 years from now? 10 years from now? 20?"
You know, I stopped doing some of Noah's educational therapies b/c I kept hoping we'd find the "magic pill" and he'd start talking and start learning. So, now, knowing that it's going to take years and years, we're introducing the PECS picture system of communication again. We're working on some life skills - like getting dressed and feeding with a spoon and fork. Noah can't do these things - so we're actively embracing it and making it a top priority. Instead of me doing everything for him, we're making him be accountable for things (as much as we can - which isn't much right now). He's not liking it one bit, but he is starting to do some things on his own now.
I'll keep you all updated on this genetics thing. Like I said, we're going low and slow. Financially and emotionally, we have to. Plus, Noah's body is still pretty messed up. He can't handle a lot at once. We are going to his Autism doctor today in Plano (who we haven't seen in about 7 months) and we're going to do do a CBC blood work-up, urine & fecal metals test, urine amino acids, urine essential elements, fecal analysis (for bacteria and parasites - yuck), and a urine Organic Acids Test. That should cover all the basics - it's been almost 3 years since we did some of these tests. I'm also looking for a new dermatologist b/c Noah's skin is NOT getting bed. Sigh.
Oh! I also have to go to Whole Foods in Dallas tody to buy... get this... organic maxi pads! We can't take a urine sample on Noah to save our lives, so someone suggested getting a cotton organic maxi pad and sticking it in Noah's diaper before bedtime. In the morning, we have to stick a syringe to the pad and syringe Noah's pee out of it. Gross!!! I have NO idea if this is going to work. I guess organic maxi pads don't have those "triple layers of protection" if you can actually syringe pee out of it. Who'd want to use it then? Give me the Walmart brand anyday and I'll concentrate on saving the planet by buying organic apples. :-)
Noah's Mom
Well, almost three months ago, we sent off for a Nutrigenomic test which takes Noah's DNA and lets us know how his methylation cycle works - which is basically his body's ability to detox. It's actually a bit more scientific than that, but I have a hard time getting my head around it all, so that's the easiest way for me to understand it. Anyway, we got the results back last week: 1 page of results and 78 pages of explanation. Now you know what I've been doing this past week.
I still don't understand it all, but basically the methylation cycle has a long way route and if it's compromised, then you take a short cut. Well, Noah's long way is compromised and so is the shortcut - which means he has problems in both of those areas. There's also a bunch of other things, too, but I'm only on page 21 and I've had to read the first 21 over and over just to finally get it all to soak in. But what it means is that we can give supplements to help overcome these mutations, but it's going to be a long and tricky and hard road. It could take several years - but we should be able to get his body working again. But one problem is that some of his mutations counteract each other. For example: he has a mutation that means he needs B12 more than anyone else, but he also has a mutation that fights against B12. So, his body is in desperate need of it, but if he gets it, his body also fights against it and causes all sorts of problems. So we have to go low and slow. We're talking uber baby steps here, but it is possible for him to get better.
It's heartbreaking, but it could be worse. I know of other kids who have worse mutations than Noah does. On a plus side - it does give us a blueprint to follow and steps to follow and lets us know that Noah's not going to wake up tomorrow and be fully recovered. This is a long process and he'll get better over time, but there is no magic bullet for Noah. And finally realizing that - after 3 1/2 years - is such a relief. It just takes off so much pressure - in a weird way. We'll just continue to live our lives and do therapies with Noah and supplement him so that he can get his body back together and start to detox - but knowing that genetically it's going to take years is helping us to relax a bit.
I was trying so hard for Noah to be recovered before he starts kindergarten next year. And, by the grace of God, I know it can happen - but without God's hand in that, he won't be recovered by next year. But a year from now, he'll be a year closer to recovery - and that's how we're trying to shape our mindset. It's no longer... "He HAS to be mainstreamed by Kindergarten". It's more of "Where is Noah going to be a year from now? 5 years from now? 10 years from now? 20?"
You know, I stopped doing some of Noah's educational therapies b/c I kept hoping we'd find the "magic pill" and he'd start talking and start learning. So, now, knowing that it's going to take years and years, we're introducing the PECS picture system of communication again. We're working on some life skills - like getting dressed and feeding with a spoon and fork. Noah can't do these things - so we're actively embracing it and making it a top priority. Instead of me doing everything for him, we're making him be accountable for things (as much as we can - which isn't much right now). He's not liking it one bit, but he is starting to do some things on his own now.
I'll keep you all updated on this genetics thing. Like I said, we're going low and slow. Financially and emotionally, we have to. Plus, Noah's body is still pretty messed up. He can't handle a lot at once. We are going to his Autism doctor today in Plano (who we haven't seen in about 7 months) and we're going to do do a CBC blood work-up, urine & fecal metals test, urine amino acids, urine essential elements, fecal analysis (for bacteria and parasites - yuck), and a urine Organic Acids Test. That should cover all the basics - it's been almost 3 years since we did some of these tests. I'm also looking for a new dermatologist b/c Noah's skin is NOT getting bed. Sigh.
Oh! I also have to go to Whole Foods in Dallas tody to buy... get this... organic maxi pads! We can't take a urine sample on Noah to save our lives, so someone suggested getting a cotton organic maxi pad and sticking it in Noah's diaper before bedtime. In the morning, we have to stick a syringe to the pad and syringe Noah's pee out of it. Gross!!! I have NO idea if this is going to work. I guess organic maxi pads don't have those "triple layers of protection" if you can actually syringe pee out of it. Who'd want to use it then? Give me the Walmart brand anyday and I'll concentrate on saving the planet by buying organic apples. :-)
Noah's Mom
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