Hey guys! Life is just so full with three busy kids, I cannot seem to keep up with my blog. However, The recovery information here is absolutely still valid and helpful. So rather than needing to find the search button and type in the right words, here are the three recovery stories in order:
Tony's story
Grace's story
Kate's story
Click the links. I hope this helps!!
There are many other autism links and helps in my blog posts, but these are the starting point. Feel free to poke around and I hope this helps you on your journey. xoxo
Remember, recovery IS possible. Anyone who says otherwise needs to be moved to the side while you do what's best for your people. Also remember, recovery is a marathon, not a sprint. It takes time and you need to take care of yourself in the process.
Love and hugs to you all!
Wednesday, May 23, 2018
Tuesday, May 31, 2016
Like-minded moms
Whew! School is done for the year! YAY! Paperwork is filed, mailed and/or tossed out and it's done. My son has a full-time job, my older girl has a part-time job and Kate and I spend a lot of time in the car getting kids from job to job. It's not a thrill but she's pretty excited that I'm not making her bring school work with her. hahaha
Since I lost my job last year, our very kind Sensei has let me start cleaning the dojo so I could work off their fee, instead of having to pull them from class. This has worked out well. Cleaning someone else's toilets is not on my "favorite things" list, but it's a small price to pay for them to continue karate. With Tony now fully employed, Kate has been allowed to step into his spot. She is SO excited!! Her sweet friend has been such an encouragement to her, trying to help her learn new moves and smiling at her from across the room when it's hard. Her sister has been very helpful too, but I somehow forgot to get a pic of them two of them. Next time...
The kid's karate class is for homeschooled children. Our dojo offers many classes throughout the day, but Sensei offers two classes in the morning specifically for children who are homeschooled. It's very nice and a good way to meet fellow homeschoolers. Yesterday, after cleaning, I went outside to talk to a mom I hadn't met before. We had only talked for a moment when we both realized we have children recovered from autism. You should have heard the squealing and laughing!! Grace told me later that they could hear us all the way inside. Oops, but also lol! :) This mom and I almost immediately started chatting about GI problems and how getting a handle on that had improved brain function. Autism moms can talk poop, I tell ya! It's what we do because we KNOW that gut problems cause brain problems.
I have met many parents trying to recover their children, especially at conferences. Plenty of conversations online and over the phone. But meeting one in my own hometown is way exciting!! She has had the same experience we have...people can't believe her son used to be on the spectrum. I have watched him in class for months. You know, the kids don't just stand there like robots, they interact before and after class, they sometimes goof off during class; they're quite normal children, these homeschooled people. ;) I had no idea her son used to be on the spectrum. And she had no clue mine were either.
It's nice to be on this side of things. Recovery accomplished. And now we're able to help others do the same thing. What a privilege.
Since I lost my job last year, our very kind Sensei has let me start cleaning the dojo so I could work off their fee, instead of having to pull them from class. This has worked out well. Cleaning someone else's toilets is not on my "favorite things" list, but it's a small price to pay for them to continue karate. With Tony now fully employed, Kate has been allowed to step into his spot. She is SO excited!! Her sweet friend has been such an encouragement to her, trying to help her learn new moves and smiling at her from across the room when it's hard. Her sister has been very helpful too, but I somehow forgot to get a pic of them two of them. Next time...
The kid's karate class is for homeschooled children. Our dojo offers many classes throughout the day, but Sensei offers two classes in the morning specifically for children who are homeschooled. It's very nice and a good way to meet fellow homeschoolers. Yesterday, after cleaning, I went outside to talk to a mom I hadn't met before. We had only talked for a moment when we both realized we have children recovered from autism. You should have heard the squealing and laughing!! Grace told me later that they could hear us all the way inside. Oops, but also lol! :) This mom and I almost immediately started chatting about GI problems and how getting a handle on that had improved brain function. Autism moms can talk poop, I tell ya! It's what we do because we KNOW that gut problems cause brain problems.
I have met many parents trying to recover their children, especially at conferences. Plenty of conversations online and over the phone. But meeting one in my own hometown is way exciting!! She has had the same experience we have...people can't believe her son used to be on the spectrum. I have watched him in class for months. You know, the kids don't just stand there like robots, they interact before and after class, they sometimes goof off during class; they're quite normal children, these homeschooled people. ;) I had no idea her son used to be on the spectrum. And she had no clue mine were either.
It's nice to be on this side of things. Recovery accomplished. And now we're able to help others do the same thing. What a privilege.
Saturday, January 30, 2016
Specific Carbohydrate Diet
Recently, the SCD has come across my eyes and brain multiple times. I learned a long time ago that when a particular subject continues to come across my path, especially when I'm not looking for it, I need to look at it more closely. Let me tell you why...
Two years ago, I contracted a deadly bacteria, antibiotic resistant of course. It was after a time of extreme, prolonged stress & grief; during which I ate poorly and did not sleep for weeks. After running literally hundreds of tests with multiple doctors, all of who could find nothing wrong in spite of how obvious it was that something was wrong, I finally got a stool test showing that I had this horrible thing. The test was cultured so we could see what would kill it, so as soon as I got my test back, I set about killing it. I went from bed-ridden to functional in a few months. The road to recovery is often quite slow and I have struggled with how long it has taken. But this particular bacteria is known to kill people so I consider myself fortunate that we found it before it finalized it's work.
One of the lingering issues I have is digestive, of course. A common problem with dysbiosis is that the gut bacteria will continue to swing out of balance, even when you are doing all the right things. The microbiome is a complex system, so when one guy gets out of whack, they all do. That makes it so that often, getting rid of one bacteria simply causes other opportunistic bad guys (who cannot be killed by the thing you are taking to get rid of bad guy #1) to take over. This has happened multiple times in my recovery. I get rid of one bacteria only to find another make me sick in a different way. I have an advantage because I can see that happening without having to test every few months. My tongue tells the story of what's happening in my gut and 4 times so far it has cleared, only to show signs of imbalance within 2 days. It's quite a frustrating cycle but I am not a quitter (plus I have a ROCKIN' nutritionist/cheerleader!) so I continued to search for permanent solutions.
In my search I spent a week listening to the Gut Health Symposium. Many excellent, intelligent speakers on the cutting edge of how to heal the gut. Gut disease if an incredibly common problem! Almost everyone has indigestion, intolerances, allergies, gas, bloating, gut pain, constipation, diarrhea, heartburn...you name it, you probably know someone with it! In fact, children with autism are known to have gut disorders; so much so that ignorant doctors will ignore them because they are so common that they say such silly things as "Oh kids with autism just have that" - while not even considering that sometimes autism behaviors are a direct result of the pain the child suffers with in their guts. But I digress...
I first heard of SCD at the beginning of my autism recovery journey over a decade ago. At that time there were not good support groups available online. When I first started looking for online support after reading the book, I was told immediately not to bother doing it because of my children's allergies. One mother even told me "If you can't do it perfectly, just go away". So I did. And I don't regret it as I was lead to the Body Ecology diet, which is a wonderful healing diet and ended up being just what we needed. But I always did wonder about the SCD. As I listened to the Gut Health Symposium this month, I continued to hear that SIBO did best with the SCD. As that is one of the lingering things I struggle with, I had to investigate further. While I have a positive SIBO test, the traditional way to treat it is with antibiotics. Since I have finally gotten back on my feet after a fight with an antibiotic resistant bacteria, taking antibiotics seemed like asking for trouble. In addition, there is a 50-100% re-infection rate within 3 months after the antibiotic. Seems to me that it just wastes time! You get a little relief, but in the end, you still have it and it's worse since you made it mad with a dose of antibiotics that didn't work. I did not find that a worthy solution. I spent a great deal of time with my nutritionist, naturopath and homeopath, as well as plenty of personal research, looking at solutions. In the end, you can do everything right, but if you are eating the wrong things, it just won't bring complete healing. So I, with great sadness, said goodbye to my beans (a staple for me) and hello to meat. And my symptoms are starting to clear. I did not think beans could hurt me, but they were on the list of no-no's of the SCD, so I got off them and am seeing great progress! This is enough for me to embrace the SCD a bit more closely. But it is a complicated system of eating until you really get your brain wrapped around it. So I sought out an online support that I had heard about a few years ago. And that's right here. These boys aren't just doing a job, they're living the life. They had struggles of their own that brought them to this lifestyle of eating. Their advice is very practical. If you're a Facebooker, you can find their support group here.
So there you have it. If you struggle with ongoing heartburn, abdominal pain, that dreaded "can't stay awake after I eat syndrome"; if probiotics make you feel worse or you notice that starchy foods make you feel bad, look at this diet. You don't need to have a positive SIBO test to benefit from it. But it just might be the answer you're looking for.
Two years ago, I contracted a deadly bacteria, antibiotic resistant of course. It was after a time of extreme, prolonged stress & grief; during which I ate poorly and did not sleep for weeks. After running literally hundreds of tests with multiple doctors, all of who could find nothing wrong in spite of how obvious it was that something was wrong, I finally got a stool test showing that I had this horrible thing. The test was cultured so we could see what would kill it, so as soon as I got my test back, I set about killing it. I went from bed-ridden to functional in a few months. The road to recovery is often quite slow and I have struggled with how long it has taken. But this particular bacteria is known to kill people so I consider myself fortunate that we found it before it finalized it's work.
One of the lingering issues I have is digestive, of course. A common problem with dysbiosis is that the gut bacteria will continue to swing out of balance, even when you are doing all the right things. The microbiome is a complex system, so when one guy gets out of whack, they all do. That makes it so that often, getting rid of one bacteria simply causes other opportunistic bad guys (who cannot be killed by the thing you are taking to get rid of bad guy #1) to take over. This has happened multiple times in my recovery. I get rid of one bacteria only to find another make me sick in a different way. I have an advantage because I can see that happening without having to test every few months. My tongue tells the story of what's happening in my gut and 4 times so far it has cleared, only to show signs of imbalance within 2 days. It's quite a frustrating cycle but I am not a quitter (plus I have a ROCKIN' nutritionist/cheerleader!) so I continued to search for permanent solutions.
In my search I spent a week listening to the Gut Health Symposium. Many excellent, intelligent speakers on the cutting edge of how to heal the gut. Gut disease if an incredibly common problem! Almost everyone has indigestion, intolerances, allergies, gas, bloating, gut pain, constipation, diarrhea, heartburn...you name it, you probably know someone with it! In fact, children with autism are known to have gut disorders; so much so that ignorant doctors will ignore them because they are so common that they say such silly things as "Oh kids with autism just have that" - while not even considering that sometimes autism behaviors are a direct result of the pain the child suffers with in their guts. But I digress...
I first heard of SCD at the beginning of my autism recovery journey over a decade ago. At that time there were not good support groups available online. When I first started looking for online support after reading the book, I was told immediately not to bother doing it because of my children's allergies. One mother even told me "If you can't do it perfectly, just go away". So I did. And I don't regret it as I was lead to the Body Ecology diet, which is a wonderful healing diet and ended up being just what we needed. But I always did wonder about the SCD. As I listened to the Gut Health Symposium this month, I continued to hear that SIBO did best with the SCD. As that is one of the lingering things I struggle with, I had to investigate further. While I have a positive SIBO test, the traditional way to treat it is with antibiotics. Since I have finally gotten back on my feet after a fight with an antibiotic resistant bacteria, taking antibiotics seemed like asking for trouble. In addition, there is a 50-100% re-infection rate within 3 months after the antibiotic. Seems to me that it just wastes time! You get a little relief, but in the end, you still have it and it's worse since you made it mad with a dose of antibiotics that didn't work. I did not find that a worthy solution. I spent a great deal of time with my nutritionist, naturopath and homeopath, as well as plenty of personal research, looking at solutions. In the end, you can do everything right, but if you are eating the wrong things, it just won't bring complete healing. So I, with great sadness, said goodbye to my beans (a staple for me) and hello to meat. And my symptoms are starting to clear. I did not think beans could hurt me, but they were on the list of no-no's of the SCD, so I got off them and am seeing great progress! This is enough for me to embrace the SCD a bit more closely. But it is a complicated system of eating until you really get your brain wrapped around it. So I sought out an online support that I had heard about a few years ago. And that's right here. These boys aren't just doing a job, they're living the life. They had struggles of their own that brought them to this lifestyle of eating. Their advice is very practical. If you're a Facebooker, you can find their support group here.
So there you have it. If you struggle with ongoing heartburn, abdominal pain, that dreaded "can't stay awake after I eat syndrome"; if probiotics make you feel worse or you notice that starchy foods make you feel bad, look at this diet. You don't need to have a positive SIBO test to benefit from it. But it just might be the answer you're looking for.
Tuesday, December 29, 2015
Favorite healing diets
Food is one thing none of us can get away from. Some of us LOVE food, others hate food, others don't give a hoot about food. But what we eat matters.
Why you might ask?
What we eat turns into nourishment for our cells. Our cells MUST be properly nourished for healing to occur. People do not get well while eating garbage, no matter how many supplements they take. Supplements can be a great bandaid and are often needed in healing to give the body extra help; but in the absence of nourishment, a bandaid is all they are.
I did not understand food when I was young. I don't guess many people did back then. It was still the era of microwave dinners, right? I thought it was just something to keep the stomach happy; I never once considered what the purpose of food was. I'd like to think I would not have eaten straight sugar from the bowl if I understood food back then but who knows? I also thought I was invincible and nothing bad would ever happy no matter what I did, so I might not have done anything with that knowledge.
The first thing I learned when looking into autism recovery is that food matters. The internet is FULL of specialized diets. There's Paleo, Veganism, Body Ecology, GAPS (Gut and Psychology Syndrome), GFCF, SCD (Specific Carbohydrate Diet), the Low Histamine Diet, the SIBO diet, the Auto-immune diet, and so many more. But the thing is, these diets don't just work for autism, they are worth exploring for any disorder of the brain or body. Food has a much more profound affect on us than most people realize. Do you know someone whose hands hurt after eating peppers or potatoes? If so, you know someone who suffers a disorder because of food. I encourage you to research which foods can do what in the body. It's quite interesting and may lead you to some answers for your own health.
I thought I would touch briefly on some of the diets listed above, and where to go for guidance with them. Some are specifically geared toward autism but almost all will work for other disorders as well.
Let me just remind you that your doctor or your child's doctor probably cannot speak much into diet. They learn so much while in medical school, but nutrition is not on their list of heavily taught subjects. So do your own research and educate yourself. I cannot even begin to tell you how many parents were told by their doctor "Diet won't help", and yet those very same brave parents did make dietary changes and saw positive results from it. I am not saying doctors cannot help you, I'm just saying you're the one that lives with your child...do your own research. You're much more invested in their health than a doctor is, no matter how fabulous they are. :)
Body Ecology Diet is the one I did with my children and myself so long ago. We still adhere to the principles of the diet even now, we are just loose with the foods because we can be to some extent. The best place to go for help is the BEDROK (Body Ecology Diet Recovering Our Kids) website and blog. (Yes, my children are some of those adorable creatures you see on the main page). The page is moderated by a mother who is 14 years in the trenches of recovery and has so much valuable wisdom to share. You can also get support here if you're a Facebooker. If you're not on Facebook, get there. Many private forums are filled with experts and nutritionists who really understand autism and can help you understand it too.
That's it for today. I'll post next time about another diet and where you can get some support to learn more.
Why you might ask?
What we eat turns into nourishment for our cells. Our cells MUST be properly nourished for healing to occur. People do not get well while eating garbage, no matter how many supplements they take. Supplements can be a great bandaid and are often needed in healing to give the body extra help; but in the absence of nourishment, a bandaid is all they are.
I did not understand food when I was young. I don't guess many people did back then. It was still the era of microwave dinners, right? I thought it was just something to keep the stomach happy; I never once considered what the purpose of food was. I'd like to think I would not have eaten straight sugar from the bowl if I understood food back then but who knows? I also thought I was invincible and nothing bad would ever happy no matter what I did, so I might not have done anything with that knowledge.
The first thing I learned when looking into autism recovery is that food matters. The internet is FULL of specialized diets. There's Paleo, Veganism, Body Ecology, GAPS (Gut and Psychology Syndrome), GFCF, SCD (Specific Carbohydrate Diet), the Low Histamine Diet, the SIBO diet, the Auto-immune diet, and so many more. But the thing is, these diets don't just work for autism, they are worth exploring for any disorder of the brain or body. Food has a much more profound affect on us than most people realize. Do you know someone whose hands hurt after eating peppers or potatoes? If so, you know someone who suffers a disorder because of food. I encourage you to research which foods can do what in the body. It's quite interesting and may lead you to some answers for your own health.
I thought I would touch briefly on some of the diets listed above, and where to go for guidance with them. Some are specifically geared toward autism but almost all will work for other disorders as well.
Let me just remind you that your doctor or your child's doctor probably cannot speak much into diet. They learn so much while in medical school, but nutrition is not on their list of heavily taught subjects. So do your own research and educate yourself. I cannot even begin to tell you how many parents were told by their doctor "Diet won't help", and yet those very same brave parents did make dietary changes and saw positive results from it. I am not saying doctors cannot help you, I'm just saying you're the one that lives with your child...do your own research. You're much more invested in their health than a doctor is, no matter how fabulous they are. :)
Body Ecology Diet is the one I did with my children and myself so long ago. We still adhere to the principles of the diet even now, we are just loose with the foods because we can be to some extent. The best place to go for help is the BEDROK (Body Ecology Diet Recovering Our Kids) website and blog. (Yes, my children are some of those adorable creatures you see on the main page). The page is moderated by a mother who is 14 years in the trenches of recovery and has so much valuable wisdom to share. You can also get support here if you're a Facebooker. If you're not on Facebook, get there. Many private forums are filled with experts and nutritionists who really understand autism and can help you understand it too.
That's it for today. I'll post next time about another diet and where you can get some support to learn more.
Tuesday, December 8, 2015
Homeopathy
Disease is an imbalance in the body. There are many ways to address imbalances. You already know my biggest passion is nutrition, but there is biomedical and homeopathy as well as herbs and more. I first learned of homeopathy when someone handed me a copy of Amy Lansky's Impossible Cure. I was riveted. Homeopathy had been alluded to in previous years but no one could explain it to me and I honestly thought it was made up bc I couldn't understand it. This book explains it in real people language. Not to mention she CURES her son with it!
Now by the time I read this book, we were done with autism, but we still had/have immune dysfunction and massive allergies. So I'm always looking to see if there's another thing I can do to help the small peoples (oh golly, if you know me personally, you know my son is now taller than I am. He's still a small people to me though). I found my way to a homeopath who taught me so much and gave us much healing. She is a teacher at heart so she also taught me how to help my family through minor illnesses such as colds and flus. When her family went through a trauma, she became unavailable so I switched to another homeopath. She is excellent as well, although less of a teacher, which I miss. Homeopathy is truly amazing, working with the body to give the body the correct energy signatures so it can heal itself. COOLEST thing, really.
Recently my son has discovered the world a little bit more. He joined Theatre class this year and has loved it so much. But of course, any group of kids involves food. My fear of social activities always revolves around food bc food has been our nemesis for so long. I love the people, hate the food. But my husband reminded me that the kids have got to learn how to live in the real world. I told him, "Fine, you take him out to the real world. I'm going to stay here with my girls". Super mature moment for me. So he took him to Chick-fil-a. Or as otherwise known to allergy families, "Are you insane, the place is coated in peanut oil!". But the day before his cast party, my bestie took him there and just sat with him, chatting and being in the building without stress. She saved my sanity! So by the time Tony had his social gathering after their performance, he and I were both prepared. My husband went with him and sat away from the group of teens so as to avoid being "that parent", but watched him for reactions. He did not eat the food there bc that would be stupid, but he sat at the table while others around him ate. Know what happened?
Nothing.
The kid had not one reaction.
Sixteen years of being unable to touch certain surfaces bc of the anaphylaxis that would ensue. And now he can sit in a stinky restaurant (that I can guarantee you is not mom-standard clean) without reaction.
You guys!!! If you are an allergy parent, you know the victory there. If you are friends with an allergy parent, you get it too. :) It still makes me a little teary-eyed. Of course, now the kid thinks he needs to go to every social event around so I am learning a LOT in letting go of control. Sixteen years of tight control is hard to let go of, but I am working on it. I expect sometime within the next decade I may have that figured out. haha
I came across a mom blog the other day and wanted to share it here. This was so encouraging and I hope it is encouraging to you too! A child who was allergic to his own tears?? Gosh, I can only imagine the pins and needles you would live on in that situation. It's so exciting to see another family healing with homeopathy.
If you are dealing with a disorder of any type, I encourage you to continue looking at options and solutions. Our bodies want to heal. They can go through much abuse and still be healed. Seek out a qualified homeopath and get started on your healing journey. You won't be sorry! My son is so thankful we continue to look for answers for him. And his social life is all the gratitude I need.
Now by the time I read this book, we were done with autism, but we still had/have immune dysfunction and massive allergies. So I'm always looking to see if there's another thing I can do to help the small peoples (oh golly, if you know me personally, you know my son is now taller than I am. He's still a small people to me though). I found my way to a homeopath who taught me so much and gave us much healing. She is a teacher at heart so she also taught me how to help my family through minor illnesses such as colds and flus. When her family went through a trauma, she became unavailable so I switched to another homeopath. She is excellent as well, although less of a teacher, which I miss. Homeopathy is truly amazing, working with the body to give the body the correct energy signatures so it can heal itself. COOLEST thing, really.
Recently my son has discovered the world a little bit more. He joined Theatre class this year and has loved it so much. But of course, any group of kids involves food. My fear of social activities always revolves around food bc food has been our nemesis for so long. I love the people, hate the food. But my husband reminded me that the kids have got to learn how to live in the real world. I told him, "Fine, you take him out to the real world. I'm going to stay here with my girls". Super mature moment for me. So he took him to Chick-fil-a. Or as otherwise known to allergy families, "Are you insane, the place is coated in peanut oil!". But the day before his cast party, my bestie took him there and just sat with him, chatting and being in the building without stress. She saved my sanity! So by the time Tony had his social gathering after their performance, he and I were both prepared. My husband went with him and sat away from the group of teens so as to avoid being "that parent", but watched him for reactions. He did not eat the food there bc that would be stupid, but he sat at the table while others around him ate. Know what happened?
Nothing.
The kid had not one reaction.
Sixteen years of being unable to touch certain surfaces bc of the anaphylaxis that would ensue. And now he can sit in a stinky restaurant (that I can guarantee you is not mom-standard clean) without reaction.
You guys!!! If you are an allergy parent, you know the victory there. If you are friends with an allergy parent, you get it too. :) It still makes me a little teary-eyed. Of course, now the kid thinks he needs to go to every social event around so I am learning a LOT in letting go of control. Sixteen years of tight control is hard to let go of, but I am working on it. I expect sometime within the next decade I may have that figured out. haha
I came across a mom blog the other day and wanted to share it here. This was so encouraging and I hope it is encouraging to you too! A child who was allergic to his own tears?? Gosh, I can only imagine the pins and needles you would live on in that situation. It's so exciting to see another family healing with homeopathy.
If you are dealing with a disorder of any type, I encourage you to continue looking at options and solutions. Our bodies want to heal. They can go through much abuse and still be healed. Seek out a qualified homeopath and get started on your healing journey. You won't be sorry! My son is so thankful we continue to look for answers for him. And his social life is all the gratitude I need.
Thursday, August 6, 2015
Microbiome
Sounds like a made up word, doesn't it?
The dictionary definition of microbiome is:
the totality of microorganisms and their collective genetic material present in or on the human body or in another environment:
The dictionary definition of microbiome is:
the totality of microorganisms and their collective genetic material present in or on the human body or in another environment:
The wide diversity of species that make up the microbiome is hard to fathom.
Yep, it still sounds made up. ha! But it's not. In short, the microbiome consists of what's living in your gut. The good guys, the bad guys, the indifferent guys...all the bacteria, the organisms, goodies and baddies, all work together to create your unique microbiome. Studies have shown that the microbiome can affect your mood, your weight, and obviously your health.
I am excited about the many up and coming studies about microbiome. I believe a great many illness we suffer from are influenced by our gut guys. Which is GREAT because that means we can potentially change our illness with what we eat. I'll keep you posted on new research as it comes my way.
Friday, July 31, 2015
Goodness, time flies!
Hey everyone! I know it's been a long time. I recently got laid off and have more time on my hands for blogging so you'll see me here a little bit more. :)
Well the kids are so big now. My little one just turned 10! All double digits in this house now. It's incredible how time has flown. I'll catch you up on them later.
Life has been full of ups and downs lately. I am recovering from a year long illness. I contracted a pathogenic, antibiotic resistant bacteria last year. Fortunately, with the good help of my fantastic nutritionist, and the grace of God, I am on the mend. There is still some healing to do but I am able to function now and that's a huge blessing.
Being so ill really helped me prioritize. Until then, I was busy being busy. Doing and going and running myself and my children ragged. My illness forced me to slow down and in the slow down, I learned a great deal about trusting God. Allowing myself to release control of some things was hard, but so necessary. This time also increased my knowledge about the body, how it works and how to heal it in a HUGE way. So that's what I plan to share with my readers in the coming months...
In the meantime, I hope this finds you well. I'm looking forward to reconnecting with you guys!
Well the kids are so big now. My little one just turned 10! All double digits in this house now. It's incredible how time has flown. I'll catch you up on them later.
Life has been full of ups and downs lately. I am recovering from a year long illness. I contracted a pathogenic, antibiotic resistant bacteria last year. Fortunately, with the good help of my fantastic nutritionist, and the grace of God, I am on the mend. There is still some healing to do but I am able to function now and that's a huge blessing.
Being so ill really helped me prioritize. Until then, I was busy being busy. Doing and going and running myself and my children ragged. My illness forced me to slow down and in the slow down, I learned a great deal about trusting God. Allowing myself to release control of some things was hard, but so necessary. This time also increased my knowledge about the body, how it works and how to heal it in a HUGE way. So that's what I plan to share with my readers in the coming months...
In the meantime, I hope this finds you well. I'm looking forward to reconnecting with you guys!
Wednesday, August 28, 2013
Update
Hey everyone! Life has been so busy, and time has flown so quickly, that I was shocked to realize how long it has been since I last posted. :)
But it's good actually. It means life has been busy and it's the fun kind of busy. When I began this blog, a friend told me she was encouraged to see what life beyond autism recovery looks like so I'll try to be better about updating now and then; but no promises. ;)
These children are growing like weeds. Tony is in 8th grade, Grace is in 6th and Kate is in 3rd. When did THAT happen??? We continue to homeschool and are trucking right along. I had to quit the folder system we had going on; it just wasn't working for me at all! I think because we do not use a set curriculum, but rather pick and choose, that system is just not a good fit for us. Now we have a list of what everyone needs to complete each day and they check it off as they finish. It works well for us and it allows them some flexibility over their school schedules.
Tony takes karate now and that's the highlight of his life these days. He started cranial sacral therapy a few months ago. As you read in his recovery story, he was a vacuum assisted delivery. His head has always been slightly egg shaped from this experience, but not horribly so. A practitioner we started working with in recent years mentioned that cranial sacral would help correct that birth trauma so we have been doing it for some time. I don't understand it well enough to really say what has improved but I see the shape of his head becoming more rounded and normal and believe this to be a sign of good things going on inside. Anytime we can help the central nervous system function better, I am for it.
He did experience some regression into hyperactivity in the last year. This is not unexpected as puberty hit and it has been completely manageable. Between the CST and homeopathy, we are helping him achieve balance once again.
He has written another book and is waiting for his very busy mother to finish editing so he can publish. This book has improved so much over his first. His use of language is incredible and it's amazing to see what stories are in his head. :)
Our Youth Group at church recently gave him quite the gift. The boys in the group came to me repeatedly and asked if we would let him join. Now up to that point, the group was characterized as mostly just a large eating machine. lol Every time they asked, I reminded them that he could not be around the food they ate. They all assured me they would give it up if he could join. After much discussion with my Spousal Unit, the leaders and the kids, we decided to give it a try. The group has been amazing. Truly amazing. You cannot imagine what a gift it is to be able to take him each week and know that not only is he safe, but that TEENAGE boys have made it that way. Although one young man has complained more than once that he is not a fan of the new snack foods (apparently fruit it not a big hit with young men who have grown up on chips. haha), the group is adjusting very well to the whole new food choices. My best friend's daughter, who also happens to be my babysitter, joined the group as a helper. She is my other eyes and ears when I am not there. Tony REALLY likes being in youth group and I REALLY like that he can go without me and be safe. This is a very big step in letting him out of my sight and him being responsible for himself. Growing up with allergies to TOUCHING things is sooo hard. Learning how to live in a food-obsessed world safely is a massive challenge to all of us, but with the incredible people around me, he is doing it. :) Our youth group is such an amazing, incredible group of people.
Grace is such a gentle spirit. She is a perfect older sister for Kate and she's quite the peacemaker. Perhaps because she's a middle child? Who knows, but she is a pleasure to be around. She's letting her hair grow VERY long so it can be braided and made into beautiful arrangements. She also has quite the affinity for animals and plants. Just recently a hummingbird has discovered her and likes to hang out around our window looking at her and peeping. She will be taking botany in co-op this year as she loves plants. Her love of all things fairy continues to grow and she changes her fairy gardens out on a regular basis. She likes to save her allowance to buy plants for her garden. Her most recent addition is a beautiful air plant.
Kate is still a fun-loving, impish little squirt. Fun is what she is and does. If there is fun going on, Kate's probably in there somewhere. Her imagination is fantastic and she hums under her breath a lot, which is so precious to hear. She and Grace are quite the pair and can play for hours and hours together. Kate is very good at wheedling her way out of school work or unpleasant chores but she's learning to be more responsible, one day at a time.
They all still struggle with food allergies. No one has needed an epipen this year but we carry them anytime we leave the house anyway. We have discovered some homeopathic remedies that work very well when their reactions start and have been able to keep them from becoming severe. We do still have to be very careful when out in public so it's not all kittens and rainbows in that area but I do believe we are continuing to heal their auto-immune disorder each day as we feed them healing foods and work with knowledgeable practitioners who understand the body as a whole.
So that's that. Hubby and I will be celebrating our 20th wedding anniversary soon. We'll have a small ceremony on the beach and he has promised to DANCE with me. I have been trying to get that man to dance with me for 20 years. He said that he will that day. I can't wait. :)
But it's good actually. It means life has been busy and it's the fun kind of busy. When I began this blog, a friend told me she was encouraged to see what life beyond autism recovery looks like so I'll try to be better about updating now and then; but no promises. ;)
These children are growing like weeds. Tony is in 8th grade, Grace is in 6th and Kate is in 3rd. When did THAT happen??? We continue to homeschool and are trucking right along. I had to quit the folder system we had going on; it just wasn't working for me at all! I think because we do not use a set curriculum, but rather pick and choose, that system is just not a good fit for us. Now we have a list of what everyone needs to complete each day and they check it off as they finish. It works well for us and it allows them some flexibility over their school schedules.
Tony takes karate now and that's the highlight of his life these days. He started cranial sacral therapy a few months ago. As you read in his recovery story, he was a vacuum assisted delivery. His head has always been slightly egg shaped from this experience, but not horribly so. A practitioner we started working with in recent years mentioned that cranial sacral would help correct that birth trauma so we have been doing it for some time. I don't understand it well enough to really say what has improved but I see the shape of his head becoming more rounded and normal and believe this to be a sign of good things going on inside. Anytime we can help the central nervous system function better, I am for it.
He did experience some regression into hyperactivity in the last year. This is not unexpected as puberty hit and it has been completely manageable. Between the CST and homeopathy, we are helping him achieve balance once again.
He has written another book and is waiting for his very busy mother to finish editing so he can publish. This book has improved so much over his first. His use of language is incredible and it's amazing to see what stories are in his head. :)
Our Youth Group at church recently gave him quite the gift. The boys in the group came to me repeatedly and asked if we would let him join. Now up to that point, the group was characterized as mostly just a large eating machine. lol Every time they asked, I reminded them that he could not be around the food they ate. They all assured me they would give it up if he could join. After much discussion with my Spousal Unit, the leaders and the kids, we decided to give it a try. The group has been amazing. Truly amazing. You cannot imagine what a gift it is to be able to take him each week and know that not only is he safe, but that TEENAGE boys have made it that way. Although one young man has complained more than once that he is not a fan of the new snack foods (apparently fruit it not a big hit with young men who have grown up on chips. haha), the group is adjusting very well to the whole new food choices. My best friend's daughter, who also happens to be my babysitter, joined the group as a helper. She is my other eyes and ears when I am not there. Tony REALLY likes being in youth group and I REALLY like that he can go without me and be safe. This is a very big step in letting him out of my sight and him being responsible for himself. Growing up with allergies to TOUCHING things is sooo hard. Learning how to live in a food-obsessed world safely is a massive challenge to all of us, but with the incredible people around me, he is doing it. :) Our youth group is such an amazing, incredible group of people.
Grace is such a gentle spirit. She is a perfect older sister for Kate and she's quite the peacemaker. Perhaps because she's a middle child? Who knows, but she is a pleasure to be around. She's letting her hair grow VERY long so it can be braided and made into beautiful arrangements. She also has quite the affinity for animals and plants. Just recently a hummingbird has discovered her and likes to hang out around our window looking at her and peeping. She will be taking botany in co-op this year as she loves plants. Her love of all things fairy continues to grow and she changes her fairy gardens out on a regular basis. She likes to save her allowance to buy plants for her garden. Her most recent addition is a beautiful air plant.
Kate is still a fun-loving, impish little squirt. Fun is what she is and does. If there is fun going on, Kate's probably in there somewhere. Her imagination is fantastic and she hums under her breath a lot, which is so precious to hear. She and Grace are quite the pair and can play for hours and hours together. Kate is very good at wheedling her way out of school work or unpleasant chores but she's learning to be more responsible, one day at a time.
They all still struggle with food allergies. No one has needed an epipen this year but we carry them anytime we leave the house anyway. We have discovered some homeopathic remedies that work very well when their reactions start and have been able to keep them from becoming severe. We do still have to be very careful when out in public so it's not all kittens and rainbows in that area but I do believe we are continuing to heal their auto-immune disorder each day as we feed them healing foods and work with knowledgeable practitioners who understand the body as a whole.
So that's that. Hubby and I will be celebrating our 20th wedding anniversary soon. We'll have a small ceremony on the beach and he has promised to DANCE with me. I have been trying to get that man to dance with me for 20 years. He said that he will that day. I can't wait. :)
Sunday, April 15, 2012
Kate's recovery story
So I am finally getting down to the business of writing Kate's story. I have put it off because I just don't like going back to those dark times but alas, this story needs to be told too.
DH was deployed during a portion of my pregnancy so the big kids and I went to live with my mom and dad; I was too sick to function well on my own and their diet made it so others could not help much and my parents are pros with our allergies. Incidentally, this stay was when my parents realized just how much I wasn't exaggerating when I said there was something really wrong with the big kids. It was nice to know it wasn't just my parenting or perception but that someone else who lived with them saw what I was seeing...
Life went on and when DH got home, kids and I came back too. The rest of the pregnancy was pretty standard...not eating well and feeling horrible all the time but other than that, pretty uneventful. During my pregnancy with her, I knew I should avoid dairy & nuts but I was so sick I just ate whatever I could keep down. So she really didn't have a healthier beginning than the others. After her birth, she had very high billirubin and had to stay in the hospital for 5 days under a light. The pediatrician there did not agree with my decision to delay vaccines and made life as miserable for me as he could. At this point, all I knew about vaccines was that you shouldn't give them to people with auto-immune disease and both my older kids had auto-immune so clearly, waiting to see about Kate was just common sense. To me, anyway...not so the doctor. (Note: anaphylactic food allergies are considered an auto-immune disease)
The day before Kate was born, DH & I got a new house on base. He had been promoted and with that promotion came a house up-size; so on the day of her birth, he spent only a little time at the hospital and came home to make the place ready for us to arrive. My mom was with me at the hospital but I was really out of it for a day or two (anesthesia is not my friend) so I felt alone. I wasn't alone, I just felt that way...being bullied by some pediatrician I didn't know b/c of choices that I felt were right for my children, unable to hold my newborn b/c she had to live under those lights, unable to nurse (she never did get the hang of that), hubby preoccupied with moving things from house to house...it was pretty horrid. I was glad to get home once her billirubin levels went down far enough to leave!
As I mentioned, Kate was never able to nurse. She had allergies right away in the hospital but we were prepared this time and had brought our own diapers and didn't let them slather anything on her, nor did we allow any bottles. They did end up giving her a bottle of sugar water b/c I was so drugged up that I could not nurse her right away. Her food allergies were so severe though that we quickly learned she could not tolerate a single formula out there, so I had to modify my diet to make my milk safe for her. I'll get to that later but in the meantime, you should know she NEVER did get the hang of nursing. I spent hours and hours with lactation consultants. She wasn't tongue-tied, she wasn't lip-tied, she wasn't anything wrong that anyone could figure out, she just couldn't nurse. This was a real problem for me b/c that meant I had to spend a LOT of time pumping to get enough milk to fill a bottle. I used the hospital-grade pump for a bit and then hubs bought the best we could find at the store so I could spend the next 14 months pumping several times every day. I didn't hate it too much b/c I was just glad that she could at least have MY milk! But it did eventually grow tedious.
This time at the pump also gave me a ton of time to sit and read. My big kids were off in their own world and as long as we had all the locks locked and the chains chained and the alarms on the glass door, I could reasonably sit for an hour at a time pumping. Our house was autism-proofed so they were safe there. Kate liked to sleep a lot and was pretty happy if I was eating right for her, so it was easy enough to juggle her needs with my pumping schedule. I say that now but I wonder if my mom and husband would remember it that way...might be wishful thinking that it was all that smooth. There is a lot I don't remember from those days.
As I mentioned she had a bunch of food allergies right off the bat. And hers were bad. I mean B.A.D. Anaphylaxis is terrible, of course, but for her to be covered in hives within minutes of eating my "broken down and pre-digested" milk was a sign of a child whose gut was in great distress. If I ate the wrong thing, she would shoot brown sludge across the room while I changed her diaper (what is it about air on the rear that makes a child go??). I would have the kids leave the room if I was changing Kate b/c she could shoot them from 100 paces with horrifying accuracy. The stuff that would come out of her was just all wrong and it smelled like baby poop should not smell. Dead cow...that's the smell...and she was just a newborn. Docs gave us the standard answer of "That's normal" so they were no help at all! Something was clearly wrong with her but all I knew was food allergies so I worked hard to discern her allergies. It was tough for both of us!
About 6 weeks into her new life, a friend who had been watching my older kids for a very long time, finally braved the subject of Kate's allergies. She shared with me about candida, a systemic yeast infection, and how it had affected her life and wondered if it might be a problem for my kids. She was so sweet; I'm sure she KNEW it was a problem but she also knew I had to arrive at that conclusion for myself. She pointed out that every time I ate something that feeds yeast, Kate's allergic reactions would flare. After talking with her, I went home and sat at the computer during one of my pumping sessions and looked to see what candida was and what you did about it. I not only saw my children listed in the symptoms, I saw myself. I didn't want to though. There was no way on earth I wanted to think about taking more food away from my kids...I mean they were already SO deprived (I felt) with the lack of dairy, soy, nuts, pineapple; I couldn't possibly take away more foods could I??
However, that information was now in my head and I started to put 2 and 2 together with my baby and me.
Now you must know, I used to eat sugar straight out of the sugar bowl. I know, it's shocking, go ahead and gasp. But you wouldn't believe how many others do the same thing...and you know why? Because our systemic yeast calls for it. We CRAVE it like a smoker craves a cigarette or an alcoholic craves their next drink. It is a real craving that will wake you up at night so you can satisfy it. Some people dress their sugar up as candy or cakes or ice cream or sweet breads or pies, I just went straight to the source - the sugar bowl. Now if you know that sugar suppresses your immune system, and you realize that I had been eating that way for years (and was surprisingly thin!) you can now see why my children were born with out-of-whack immune systems. They didn't stand much of a chance to be healthy, being gestated in a body with that kind of crazy going on. Diet is so SO very important before conception and during pregnancy. All that bull about "eat what you want, you're eating for two"...yeah, you are...so be careful what you eat! Set your child up for health, not for illness...what you eat DOES matter. Maybe not to you but to your child's immune system is sure will matter.
But I digress, so here I had this sick baby who was covered in eczema (her skin felt like leather everywhere) and who was in major gut distress as evidenced by the madness that happened in her diaper several times a day. And in the background, I had two older kids who were spending their days screaming and twirling and throwing themselves against the wall, completely unaware of much else. AND my husband was frequently deployed on top of that. You can imagine how quickly my sanity left...and it was replaced with a desperation to find out if I could do something to change this picture.
So I asked my friend for her doctor's information, which she was happy to share. I reluctantly booked an appointment with him for my baby since she seemed to be in the worst immediate distress. After all, we had a handle on the other kids allergies so she was the one I was desperate to get some relief for. My husband & I spent some time with the doc who was unlike anyone I'd ever met before. Up to this point, I only knew docs who wanted to give me a pill to suppress whatever was going on in my body. This doctor wanted to talk about what I ate and drank. That was strange b/c no one had ever cared before. Well this guy did and I soon found out why. He had a lovely nutritionist who came in the room with us and she scribbled notes furiously while doc and I talked. My husband had come along so he could try to keep the big kids under control but he listened and chimed in when he could. I remember the scene of chaos in that tiny room but I also remember the doc saying "Oh, well, the problem isn't her, it's you". I must have looked confused b/c he went on to explain that my diet was horrible and it was feeding a pre-existing problem in the baby...candida. He sent us both for blood work to confirm candida and our levels were both ridiculously high. How does a newborn have horribly high levels of yeast in the blood??? Yeah, you guessed it...from me.
When we went in for our follow up, he had the dietician counsel me on the candida diet. I vividly recall my husband holding Grace with one arm, trying desperately to catch Tony with the other, while I was holding the baby and trying to listen. It was complete chaos. During that visit is when the doc first mentioned that we should have Tony tested for autism...I had never mentioned autism to him, he just knew it when he saw it. But that's Tony's story that you can read elsewhere. Finally, the doc left and the nutritionist asked DH if he would take the other kids out so she and I could talk. There she gave me the fast version of what yeast was, what it was doing, why it was causing these reactions, and what to eat. She also told me to journal everything; that it would help me keep track of everything. This was especially important b/c I was breast feeding a baby from the bottle, so I had to keep special track of what I ate, when I pumped after that meal and when Kate got that bottle...then how she did with it. Once I got the hang of that, it was a matter of days and I could see what was happening. I would eat Life cereal (sugar and wheat), an hour or two later I would pump, then she would get the bottle, then she would have extreme gut pain, eczema flare, noxious diarrhea and be super grouchy (who wouldn't be with all that going on??). It REALLY didn't take long to see the correlation at all...anything that fed yeast made her worse.
So I went on an extreme diet...extreme only b/c I had to change everything I knew about food; but it was a good change. As I learned to eat plain chicken, rice, broccoli, and salads, my baby suddenly started feeling better. Her eczema faded, her poop started to normalize, she had less screaming in pain. This was clearly important to her body. I could not take the traditional anti-fungal medications b/c I was nursing so I plowed my way through the die-off in myself. Boy that was wretched...I had a blinding headache for 4 days and would guzzle raw apple cider vinegar to get 3 minutes of relief. But within a week, I felt great. And the longer I stayed on this diet, the better I felt; and the better Kate got. It was amazing...I had not known I wasn't healthy until that point. Suddenly I could think clearly, my skin looked great, I actually glowed with health. I remember overhearing a friend saying about me "That should be me, I want that life" and all I could think was "Are you insane??? I have three sick children, two with autism, and you want to be me?" But what she saw was a healthy person who glowed b/c my brain and body were well.
However, all was not peachy in my world in spite of my great skin and happy disposition. I finally had a clear brain so I could think and research and learn and I did so with a crazy passion. Food had changed my life and I was going to see if it could do the same for my kids. A mom on a mission is a serious thing and not something you want to get in the way of. I scared off all sorts of people but I had learned something: I could change my baby's health by what I ate. So the natural conclusion was that I could change the other children's health with what they ate. So I bought another journal and started journaling what the other two ate, how they behaved, their bowel habits, their skin; everything I could think of went in that journal and VERY quickly I was convinced they needed a dietary overhaul too.
Back to my nutritionist I went and together we worked out a menu plan. It wasn't easy b/c we had a myriad of food allergies to work around. The kids were allergic to even healing, whole foods so it wasn't as easy as removing sugar and replacing it with real food. And as I've mentioned before, I didn't know how to cook. I only knew how to follow direction on the box or can so this was a whole new world for all of us. God bless my husband, he tolerated a whole lot of crazy from me. But he, like me, was desperate for healing in our children. My nutritionist already knew about the Body Ecology Diet and wanted me to implement it but I resisted b/c making cultured vegetables and coconut kefir sounded intimidating. However, autism recovery can be very costly so we ran out of money quickly and she would allow me to pay her in cultured veggies. Funny girl... anyway, I learned to make them as payment, and then she would say "Oh just give me one jar, let the kids have the rest". ;) So cultured veggies sneaked their way into our lives and suddenly I could get probiotics into my kids for much cheaper than buying a supplement. And it was more effective too. So into Body Ecology I dove and we still eat that way now.
I keep getting sidetracked...so back to Kate. While her gut and allergy situation started to improve on our new diet, her health took did the "two steps forward, one step back" type thing. She soon became failure to thrive although my milk was abundantly healthy and she had as much as she wanted. Her hands and feet also started to curl in and she could not straighten them...so before she could even walk she was pigeon toed and unable to use her hands in a natural way. She adapted as children do, of course, but you could tell just by looking that something was wrong with her. Her stomach would bloat out so much you could see the veins under her skin and her arms and legs got stick thin. It was frightening and doctors were unable to tell me a thing that was wrong with her. Oh it's probably the food allergies, they would say. At this point, I was still using both alternative and traditional doctors. We ran test after test after test and all we could see was nothing! We even had a GI scope both ends and he said it was as healthy as could be in there. About that time her stomach started bloating out, she also stopped eye contact and her cheery disposition went away. At the age of 10 months, she acted almost exactly like her big brother, minus the language. I did not bother to get her diagnosed b/c we already had a plan of recovery in place, but she was her brother's duplicate and he did have a dx of autism...and her body was a disaster. I never did figure out how she was able to get better, yet sicker all at one time. Supplements would occasionally provide relief from certain symptoms but not always as her body seemed to be constantly fluctuating. It was a strange situation for sure.
So during all this time, I had hours and hours of pumping time, if you remember. I started spending all that time on the computer, researching, reading, talking to moms in my situation. I learned quickly that moms knew more about my kids than my doctors and I started listening to what these moms were saying about gut dysbiosis, heavy metal poisoning, pathogens, bacteria, overloaded livers, urea cycles, kreb cycles, methylation, etc. You get the picture...I became an expert detective very quickly. With my alternative doc, I would run tests aimed at finding out what was going on inside the body and learned that Kate had antibodies to typhoid, smallpox, anthrax. Where on earth does an infant get such things in her body?? This was from daddy. He had ALL these shots given to him shortly before Kate was conceived. So not only had Daddy been poisoned from these unnecessary shots, so had his daughter. It passed down from him to her. There is no other explanation, her profile matched his vaccination record. No wonder her body was so sick! Not only had I destroyed her immune system with my bad pregnancy diet, but shots intended for another person had invaded her already non-functioning immune system. Oh yes, and did I mention that the dentist informed me while preggo with her, that I had two leaking amalgam fillings in my mouth? Those things are 51 % mercury and they were leaching into my system every single day of her gestation. It's a miracle her brain survived such an assault.
So we set to getting all these horrible things out of her body! With a good diet in place, a good chiropractor in place, we were ready to chelate. We consulted two different doctors on this as chelation is not to be taken lightly. We took the same precautions as we did with the big kids and it was amazing to watch the transformation in Kate. Her wrists straightened out and her feet turned back the way they should have been...this all happened one chelation weekend when we could smell metals in her urine. It was a vile smell but there was no mistaking the metals. And after that weekend, her hands and feet never turned in again. Her stomach started going down and she started looking for our eyes again. Her social anxiety completely melted away and she wanted to play with everyone!
It took quite some time. She did not recover as quickly as Tony, but she DID recover. She is not the picture of health that I would like her to be. She still has the same severity of allergies that the other two have, but the autism is gone. Kate is the most fun-loving person I know. She doesn't meet a stranger, there are only friends she hasn't met yet. When we walk in a room, Kate will look around, then ask "Can I go make a friend with that person?". This is a far cry from the child who used to be unwilling to look anyone in the eye.
I won't recap everything we did as you can read about it in the other kids stories...it was all the same stuff and while they still have allergies, we still search for an answer to that. Our family would not be complete without Kate, she's the icing on our GFCFSFSFCF cake.
We are so grateful that we were able to bring her out of the fog she started life in. I hope hearing her story is encouraging to you. Spread the word, recovery happens.
DH was deployed during a portion of my pregnancy so the big kids and I went to live with my mom and dad; I was too sick to function well on my own and their diet made it so others could not help much and my parents are pros with our allergies. Incidentally, this stay was when my parents realized just how much I wasn't exaggerating when I said there was something really wrong with the big kids. It was nice to know it wasn't just my parenting or perception but that someone else who lived with them saw what I was seeing...
Life went on and when DH got home, kids and I came back too. The rest of the pregnancy was pretty standard...not eating well and feeling horrible all the time but other than that, pretty uneventful. During my pregnancy with her, I knew I should avoid dairy & nuts but I was so sick I just ate whatever I could keep down. So she really didn't have a healthier beginning than the others. After her birth, she had very high billirubin and had to stay in the hospital for 5 days under a light. The pediatrician there did not agree with my decision to delay vaccines and made life as miserable for me as he could. At this point, all I knew about vaccines was that you shouldn't give them to people with auto-immune disease and both my older kids had auto-immune so clearly, waiting to see about Kate was just common sense. To me, anyway...not so the doctor. (Note: anaphylactic food allergies are considered an auto-immune disease)
The day before Kate was born, DH & I got a new house on base. He had been promoted and with that promotion came a house up-size; so on the day of her birth, he spent only a little time at the hospital and came home to make the place ready for us to arrive. My mom was with me at the hospital but I was really out of it for a day or two (anesthesia is not my friend) so I felt alone. I wasn't alone, I just felt that way...being bullied by some pediatrician I didn't know b/c of choices that I felt were right for my children, unable to hold my newborn b/c she had to live under those lights, unable to nurse (she never did get the hang of that), hubby preoccupied with moving things from house to house...it was pretty horrid. I was glad to get home once her billirubin levels went down far enough to leave!
As I mentioned, Kate was never able to nurse. She had allergies right away in the hospital but we were prepared this time and had brought our own diapers and didn't let them slather anything on her, nor did we allow any bottles. They did end up giving her a bottle of sugar water b/c I was so drugged up that I could not nurse her right away. Her food allergies were so severe though that we quickly learned she could not tolerate a single formula out there, so I had to modify my diet to make my milk safe for her. I'll get to that later but in the meantime, you should know she NEVER did get the hang of nursing. I spent hours and hours with lactation consultants. She wasn't tongue-tied, she wasn't lip-tied, she wasn't anything wrong that anyone could figure out, she just couldn't nurse. This was a real problem for me b/c that meant I had to spend a LOT of time pumping to get enough milk to fill a bottle. I used the hospital-grade pump for a bit and then hubs bought the best we could find at the store so I could spend the next 14 months pumping several times every day. I didn't hate it too much b/c I was just glad that she could at least have MY milk! But it did eventually grow tedious.
This time at the pump also gave me a ton of time to sit and read. My big kids were off in their own world and as long as we had all the locks locked and the chains chained and the alarms on the glass door, I could reasonably sit for an hour at a time pumping. Our house was autism-proofed so they were safe there. Kate liked to sleep a lot and was pretty happy if I was eating right for her, so it was easy enough to juggle her needs with my pumping schedule. I say that now but I wonder if my mom and husband would remember it that way...might be wishful thinking that it was all that smooth. There is a lot I don't remember from those days.
As I mentioned she had a bunch of food allergies right off the bat. And hers were bad. I mean B.A.D. Anaphylaxis is terrible, of course, but for her to be covered in hives within minutes of eating my "broken down and pre-digested" milk was a sign of a child whose gut was in great distress. If I ate the wrong thing, she would shoot brown sludge across the room while I changed her diaper (what is it about air on the rear that makes a child go??). I would have the kids leave the room if I was changing Kate b/c she could shoot them from 100 paces with horrifying accuracy. The stuff that would come out of her was just all wrong and it smelled like baby poop should not smell. Dead cow...that's the smell...and she was just a newborn. Docs gave us the standard answer of "That's normal" so they were no help at all! Something was clearly wrong with her but all I knew was food allergies so I worked hard to discern her allergies. It was tough for both of us!
About 6 weeks into her new life, a friend who had been watching my older kids for a very long time, finally braved the subject of Kate's allergies. She shared with me about candida, a systemic yeast infection, and how it had affected her life and wondered if it might be a problem for my kids. She was so sweet; I'm sure she KNEW it was a problem but she also knew I had to arrive at that conclusion for myself. She pointed out that every time I ate something that feeds yeast, Kate's allergic reactions would flare. After talking with her, I went home and sat at the computer during one of my pumping sessions and looked to see what candida was and what you did about it. I not only saw my children listed in the symptoms, I saw myself. I didn't want to though. There was no way on earth I wanted to think about taking more food away from my kids...I mean they were already SO deprived (I felt) with the lack of dairy, soy, nuts, pineapple; I couldn't possibly take away more foods could I??
However, that information was now in my head and I started to put 2 and 2 together with my baby and me.
Now you must know, I used to eat sugar straight out of the sugar bowl. I know, it's shocking, go ahead and gasp. But you wouldn't believe how many others do the same thing...and you know why? Because our systemic yeast calls for it. We CRAVE it like a smoker craves a cigarette or an alcoholic craves their next drink. It is a real craving that will wake you up at night so you can satisfy it. Some people dress their sugar up as candy or cakes or ice cream or sweet breads or pies, I just went straight to the source - the sugar bowl. Now if you know that sugar suppresses your immune system, and you realize that I had been eating that way for years (and was surprisingly thin!) you can now see why my children were born with out-of-whack immune systems. They didn't stand much of a chance to be healthy, being gestated in a body with that kind of crazy going on. Diet is so SO very important before conception and during pregnancy. All that bull about "eat what you want, you're eating for two"...yeah, you are...so be careful what you eat! Set your child up for health, not for illness...what you eat DOES matter. Maybe not to you but to your child's immune system is sure will matter.
But I digress, so here I had this sick baby who was covered in eczema (her skin felt like leather everywhere) and who was in major gut distress as evidenced by the madness that happened in her diaper several times a day. And in the background, I had two older kids who were spending their days screaming and twirling and throwing themselves against the wall, completely unaware of much else. AND my husband was frequently deployed on top of that. You can imagine how quickly my sanity left...and it was replaced with a desperation to find out if I could do something to change this picture.
So I asked my friend for her doctor's information, which she was happy to share. I reluctantly booked an appointment with him for my baby since she seemed to be in the worst immediate distress. After all, we had a handle on the other kids allergies so she was the one I was desperate to get some relief for. My husband & I spent some time with the doc who was unlike anyone I'd ever met before. Up to this point, I only knew docs who wanted to give me a pill to suppress whatever was going on in my body. This doctor wanted to talk about what I ate and drank. That was strange b/c no one had ever cared before. Well this guy did and I soon found out why. He had a lovely nutritionist who came in the room with us and she scribbled notes furiously while doc and I talked. My husband had come along so he could try to keep the big kids under control but he listened and chimed in when he could. I remember the scene of chaos in that tiny room but I also remember the doc saying "Oh, well, the problem isn't her, it's you". I must have looked confused b/c he went on to explain that my diet was horrible and it was feeding a pre-existing problem in the baby...candida. He sent us both for blood work to confirm candida and our levels were both ridiculously high. How does a newborn have horribly high levels of yeast in the blood??? Yeah, you guessed it...from me.
When we went in for our follow up, he had the dietician counsel me on the candida diet. I vividly recall my husband holding Grace with one arm, trying desperately to catch Tony with the other, while I was holding the baby and trying to listen. It was complete chaos. During that visit is when the doc first mentioned that we should have Tony tested for autism...I had never mentioned autism to him, he just knew it when he saw it. But that's Tony's story that you can read elsewhere. Finally, the doc left and the nutritionist asked DH if he would take the other kids out so she and I could talk. There she gave me the fast version of what yeast was, what it was doing, why it was causing these reactions, and what to eat. She also told me to journal everything; that it would help me keep track of everything. This was especially important b/c I was breast feeding a baby from the bottle, so I had to keep special track of what I ate, when I pumped after that meal and when Kate got that bottle...then how she did with it. Once I got the hang of that, it was a matter of days and I could see what was happening. I would eat Life cereal (sugar and wheat), an hour or two later I would pump, then she would get the bottle, then she would have extreme gut pain, eczema flare, noxious diarrhea and be super grouchy (who wouldn't be with all that going on??). It REALLY didn't take long to see the correlation at all...anything that fed yeast made her worse.
So I went on an extreme diet...extreme only b/c I had to change everything I knew about food; but it was a good change. As I learned to eat plain chicken, rice, broccoli, and salads, my baby suddenly started feeling better. Her eczema faded, her poop started to normalize, she had less screaming in pain. This was clearly important to her body. I could not take the traditional anti-fungal medications b/c I was nursing so I plowed my way through the die-off in myself. Boy that was wretched...I had a blinding headache for 4 days and would guzzle raw apple cider vinegar to get 3 minutes of relief. But within a week, I felt great. And the longer I stayed on this diet, the better I felt; and the better Kate got. It was amazing...I had not known I wasn't healthy until that point. Suddenly I could think clearly, my skin looked great, I actually glowed with health. I remember overhearing a friend saying about me "That should be me, I want that life" and all I could think was "Are you insane??? I have three sick children, two with autism, and you want to be me?" But what she saw was a healthy person who glowed b/c my brain and body were well.
However, all was not peachy in my world in spite of my great skin and happy disposition. I finally had a clear brain so I could think and research and learn and I did so with a crazy passion. Food had changed my life and I was going to see if it could do the same for my kids. A mom on a mission is a serious thing and not something you want to get in the way of. I scared off all sorts of people but I had learned something: I could change my baby's health by what I ate. So the natural conclusion was that I could change the other children's health with what they ate. So I bought another journal and started journaling what the other two ate, how they behaved, their bowel habits, their skin; everything I could think of went in that journal and VERY quickly I was convinced they needed a dietary overhaul too.
Back to my nutritionist I went and together we worked out a menu plan. It wasn't easy b/c we had a myriad of food allergies to work around. The kids were allergic to even healing, whole foods so it wasn't as easy as removing sugar and replacing it with real food. And as I've mentioned before, I didn't know how to cook. I only knew how to follow direction on the box or can so this was a whole new world for all of us. God bless my husband, he tolerated a whole lot of crazy from me. But he, like me, was desperate for healing in our children. My nutritionist already knew about the Body Ecology Diet and wanted me to implement it but I resisted b/c making cultured vegetables and coconut kefir sounded intimidating. However, autism recovery can be very costly so we ran out of money quickly and she would allow me to pay her in cultured veggies. Funny girl... anyway, I learned to make them as payment, and then she would say "Oh just give me one jar, let the kids have the rest". ;) So cultured veggies sneaked their way into our lives and suddenly I could get probiotics into my kids for much cheaper than buying a supplement. And it was more effective too. So into Body Ecology I dove and we still eat that way now.
I keep getting sidetracked...so back to Kate. While her gut and allergy situation started to improve on our new diet, her health took did the "two steps forward, one step back" type thing. She soon became failure to thrive although my milk was abundantly healthy and she had as much as she wanted. Her hands and feet also started to curl in and she could not straighten them...so before she could even walk she was pigeon toed and unable to use her hands in a natural way. She adapted as children do, of course, but you could tell just by looking that something was wrong with her. Her stomach would bloat out so much you could see the veins under her skin and her arms and legs got stick thin. It was frightening and doctors were unable to tell me a thing that was wrong with her. Oh it's probably the food allergies, they would say. At this point, I was still using both alternative and traditional doctors. We ran test after test after test and all we could see was nothing! We even had a GI scope both ends and he said it was as healthy as could be in there. About that time her stomach started bloating out, she also stopped eye contact and her cheery disposition went away. At the age of 10 months, she acted almost exactly like her big brother, minus the language. I did not bother to get her diagnosed b/c we already had a plan of recovery in place, but she was her brother's duplicate and he did have a dx of autism...and her body was a disaster. I never did figure out how she was able to get better, yet sicker all at one time. Supplements would occasionally provide relief from certain symptoms but not always as her body seemed to be constantly fluctuating. It was a strange situation for sure.
So during all this time, I had hours and hours of pumping time, if you remember. I started spending all that time on the computer, researching, reading, talking to moms in my situation. I learned quickly that moms knew more about my kids than my doctors and I started listening to what these moms were saying about gut dysbiosis, heavy metal poisoning, pathogens, bacteria, overloaded livers, urea cycles, kreb cycles, methylation, etc. You get the picture...I became an expert detective very quickly. With my alternative doc, I would run tests aimed at finding out what was going on inside the body and learned that Kate had antibodies to typhoid, smallpox, anthrax. Where on earth does an infant get such things in her body?? This was from daddy. He had ALL these shots given to him shortly before Kate was conceived. So not only had Daddy been poisoned from these unnecessary shots, so had his daughter. It passed down from him to her. There is no other explanation, her profile matched his vaccination record. No wonder her body was so sick! Not only had I destroyed her immune system with my bad pregnancy diet, but shots intended for another person had invaded her already non-functioning immune system. Oh yes, and did I mention that the dentist informed me while preggo with her, that I had two leaking amalgam fillings in my mouth? Those things are 51 % mercury and they were leaching into my system every single day of her gestation. It's a miracle her brain survived such an assault.
So we set to getting all these horrible things out of her body! With a good diet in place, a good chiropractor in place, we were ready to chelate. We consulted two different doctors on this as chelation is not to be taken lightly. We took the same precautions as we did with the big kids and it was amazing to watch the transformation in Kate. Her wrists straightened out and her feet turned back the way they should have been...this all happened one chelation weekend when we could smell metals in her urine. It was a vile smell but there was no mistaking the metals. And after that weekend, her hands and feet never turned in again. Her stomach started going down and she started looking for our eyes again. Her social anxiety completely melted away and she wanted to play with everyone!
It took quite some time. She did not recover as quickly as Tony, but she DID recover. She is not the picture of health that I would like her to be. She still has the same severity of allergies that the other two have, but the autism is gone. Kate is the most fun-loving person I know. She doesn't meet a stranger, there are only friends she hasn't met yet. When we walk in a room, Kate will look around, then ask "Can I go make a friend with that person?". This is a far cry from the child who used to be unwilling to look anyone in the eye.
I won't recap everything we did as you can read about it in the other kids stories...it was all the same stuff and while they still have allergies, we still search for an answer to that. Our family would not be complete without Kate, she's the icing on our GFCFSFSFCF cake.
We are so grateful that we were able to bring her out of the fog she started life in. I hope hearing her story is encouraging to you. Spread the word, recovery happens.
Wednesday, February 29, 2012
Saturday, February 25, 2012
Craftiness
If you haven't heard of Pinterest, you're not up on the times. :) It's the ultimate find-a-craft place on the internet. Actually it's for much more than that but I do love collecting the crafty things and then doing them. So last night DH and I went on a date and bought the supplies for this craft:
(Picture from Pinterest - unknown original source. If you know where this came from, let me know and I'll link it.)
See, fairy in a bottle! It's actually supposed to be a fairy in a bottle but when you follow the directions
1. Cut a glow stick (necklace) and shake the contents into a jar. Add diamond glitter
2. Seal the top with a lid.
3. Shake.
It doesn't come out all magical and adorable like that picture; it comes out looking like this:
It's all sticky and definitely not magical. lol However, it did glow and that's the important thing for little girls who love fairies. My girls love their jar of fairy dust but were perplexed about how the fairies got away and all I ended up with was dust. Alas, they like it anyway so it's worth it; I was just disappointed in the fact that it is not a free floating dust.
But today we did another craft I discovered on Pinterest. I was going to try to have this ready for my son at Christmas but with my father-in-law's illness & death, I could not focus on a craft for the months of Dec. & January. But today seemed like a good day to try it.
Here are some scary, yet oddly adorable monster bookmarks. Source is here! This was crazy easy to make and thanks to a friend, I already had the template so that made it even easier. Here is our final result:
Aren't they cute?!?! We are frequently stealing each others books and hiding them or changing bookmarked pages in each others books...these scary fellows may be able to curtail that habit. We shall see...
So there's what we're crafting today. I hope all my readers are having a wonderful Saturday!
(Picture from Pinterest - unknown original source. If you know where this came from, let me know and I'll link it.)
See, fairy in a bottle! It's actually supposed to be a fairy in a bottle but when you follow the directions
1. Cut a glow stick (necklace) and shake the contents into a jar. Add diamond glitter
2. Seal the top with a lid.
3. Shake.
It doesn't come out all magical and adorable like that picture; it comes out looking like this:
It's all sticky and definitely not magical. lol However, it did glow and that's the important thing for little girls who love fairies. My girls love their jar of fairy dust but were perplexed about how the fairies got away and all I ended up with was dust. Alas, they like it anyway so it's worth it; I was just disappointed in the fact that it is not a free floating dust.
But today we did another craft I discovered on Pinterest. I was going to try to have this ready for my son at Christmas but with my father-in-law's illness & death, I could not focus on a craft for the months of Dec. & January. But today seemed like a good day to try it.
Here are some scary, yet oddly adorable monster bookmarks. Source is here! This was crazy easy to make and thanks to a friend, I already had the template so that made it even easier. Here is our final result:
Aren't they cute?!?! We are frequently stealing each others books and hiding them or changing bookmarked pages in each others books...these scary fellows may be able to curtail that habit. We shall see...
So there's what we're crafting today. I hope all my readers are having a wonderful Saturday!
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