Friday, December 28, 2012
Friday, December 21, 2012
Here's an example of Krista's daily diet... Hope it helps!
Example of Krista’s daily diet, I am giving 3 examples per meal or snack This is NOT a medical low glycemic diet, it contains principals that have been borrowed from low glycemic diets. This diet is however strictly gluten and casein free.
Breakfast:
1. Gluten free oatmeal (preferably steel cut) with one or two spoonfuls of coconut oil, sweetened with stevia. We sometimes add a splash of non dairy, no or low sugar milk (like almond) and a sprinkle of cinnamon.
2. Scrambled eggs with some baby bella mushroom and spinach, cooked in olive or grapeseed oil and seasoned with sea salt and cracked pepper.
3. Lunch meat roll ups. This is all natural turkey with guacamole spread over the meat then rolled up to make it fun and easy to eat. Banana with almond butter for dipping.
Snack:
1. Again we have a banana with almond butter for dipping.
2. Corn or any all natural potato chips with guacamole for dipping (not the best low glycemic option, reserved for special occasions when other kids are having chips)
3. Sliced veggies with guacamole (do we see a theme here?) or sliced avocados because they are just so good for our kids and many of our angels seem to really enjoy them!
Lunch:
1. 2 organic hotdogs, no bun, and some sweet potato medallions. These are sweet potatoes cut in circles like American fries and low temperature cooked in coconut oil with a little sea salt. We sometimes make it a sweet treat by sprinkling with stevia and cinnamon.
2. GFCF “Lunchables” we use some multigrain, relatively low carb, GFCF crackers, cut all natural lunchmeat to fit crackers, crackers dipped into guacamole or hummus (guac is the lower glycemic choice), topped with lunchmeat and served with veggie of choice.
3. Taco roll up: Organic corn tortilla (organic to avoid GMO, most corn is GMO), I spread the guacamole over the entire tortilla, then I add seasoned ground beef and black beans, then I roll it up. I serve with extra sliced avocado or a small amount of organic tortilla chips.
Snack:
1. Coconut mango sorbet: I blend frozen mango with canned coconut cream and sweeten with stevia. This can be done with any fruit, banana, pineapple or berries come to mind. You can make this really low glycemic by blending coconut cream with ice, stevia and vanilla (alcohol free), just leave out the fruit all together and this will be YUMMY!
2. Celery or carrots (either baby or cut into sticks) with almond butter to dip. There are all kinds of nut butters to experiment with but we really enjoy almond and it’s well tolerated by Krista.
3. Just plain sliced avocado, like I said, she really loves it and it’s good for her!
Dinner:
1. Salmon, low temperature cooked in a skillet with extra virgin olive oil or coconut oil, seasoned with some lemon pepper and topped with a bit of raw honey at the end. Serve over a bed of spinach (of you can come up with a GFCF, low glycemic, maybe a coconut cream, that would be a great topper for the bed of spinach) and a small side of quinoa flavored however I like or with some soy sauce. (Note: many people are avoiding soy, it is a high allergy food that we use sparingly).
2. Chicken and Rice: Oven baked or skillet fried in extra virgin olive oil, seasoned with a 21 season salute I get from Trader Joe’s and some tenderizer. I like to top chicken with a bit of sesame oil when I have it because it is sooooo delicious!!! The rice is organic, whole grain and flavored with soy sauce or CF butter and sea salt. Veggie of choice, we love asparagus, broccoli and brussel sprouts.
3. Spaghetti: For the sauce, I use Prego mushroom. I got into this habit because Krista used to be allergic to Olive oil and this particular brand is all natural (not organic, not sure about GMO), but in writing this I’m thinking that I know I could do better now that olive oil is well tolerated. I sautee some baby bellas and zucchini if I have it on hand and add to some ground beef and the sauce. For noodles we eat brown, organic, whole grain GFCF rice noodles. When I’m really going for low glycemic, I make spaghetti squash to replace the noodles.
Liquids: Krista mostly drinks filtered water but has recently rediscovered her love of almond milk. I buy it unsweetend and I add stevia and alcohol free vanilla to flavor it.
If you’ll notice, Krista’s lunch menu includes some “convenience foods”, this is because she is in school and we need to make her meals as easy as possible.
Krista does NOT follow the medically prescribed low glycemic diet. Although, many of the above examples are low glycemic, it is important to check with your doctor to make sure that these foods meet the LGIT guidelines. I can almost guess that the spaghetti sauce won’t.
Even though Krista does not follow the medically prescribed LGIT diet, I do consider her diet to be fairly low on the glycemic index. She follows the diabetic/hypoglycemic principal that if you give a carby food; such as a banana or cracker, you must include a healthy fat or protein to help to keep the sugars stable. When we veer away from this dietarty guidline we see “seizure activity” and lots of yeast! We can have only been able to loosen up the low glycemic portion on the diet because Krista is in good health and seizure free, if that were not the case, we would have to adhere more closely to low glycemic guidelines.
Happy eating! Please share your dietary successes!
Breakfast:
1. Gluten free oatmeal (preferably steel cut) with one or two spoonfuls of coconut oil, sweetened with stevia. We sometimes add a splash of non dairy, no or low sugar milk (like almond) and a sprinkle of cinnamon.
2. Scrambled eggs with some baby bella mushroom and spinach, cooked in olive or grapeseed oil and seasoned with sea salt and cracked pepper.
3. Lunch meat roll ups. This is all natural turkey with guacamole spread over the meat then rolled up to make it fun and easy to eat. Banana with almond butter for dipping.
Snack:
1. Again we have a banana with almond butter for dipping.
2. Corn or any all natural potato chips with guacamole for dipping (not the best low glycemic option, reserved for special occasions when other kids are having chips)
3. Sliced veggies with guacamole (do we see a theme here?) or sliced avocados because they are just so good for our kids and many of our angels seem to really enjoy them!
Lunch:
1. 2 organic hotdogs, no bun, and some sweet potato medallions. These are sweet potatoes cut in circles like American fries and low temperature cooked in coconut oil with a little sea salt. We sometimes make it a sweet treat by sprinkling with stevia and cinnamon.
2. GFCF “Lunchables” we use some multigrain, relatively low carb, GFCF crackers, cut all natural lunchmeat to fit crackers, crackers dipped into guacamole or hummus (guac is the lower glycemic choice), topped with lunchmeat and served with veggie of choice.
3. Taco roll up: Organic corn tortilla (organic to avoid GMO, most corn is GMO), I spread the guacamole over the entire tortilla, then I add seasoned ground beef and black beans, then I roll it up. I serve with extra sliced avocado or a small amount of organic tortilla chips.
Snack:
1. Coconut mango sorbet: I blend frozen mango with canned coconut cream and sweeten with stevia. This can be done with any fruit, banana, pineapple or berries come to mind. You can make this really low glycemic by blending coconut cream with ice, stevia and vanilla (alcohol free), just leave out the fruit all together and this will be YUMMY!
2. Celery or carrots (either baby or cut into sticks) with almond butter to dip. There are all kinds of nut butters to experiment with but we really enjoy almond and it’s well tolerated by Krista.
3. Just plain sliced avocado, like I said, she really loves it and it’s good for her!
Dinner:
1. Salmon, low temperature cooked in a skillet with extra virgin olive oil or coconut oil, seasoned with some lemon pepper and topped with a bit of raw honey at the end. Serve over a bed of spinach (of you can come up with a GFCF, low glycemic, maybe a coconut cream, that would be a great topper for the bed of spinach) and a small side of quinoa flavored however I like or with some soy sauce. (Note: many people are avoiding soy, it is a high allergy food that we use sparingly).
2. Chicken and Rice: Oven baked or skillet fried in extra virgin olive oil, seasoned with a 21 season salute I get from Trader Joe’s and some tenderizer. I like to top chicken with a bit of sesame oil when I have it because it is sooooo delicious!!! The rice is organic, whole grain and flavored with soy sauce or CF butter and sea salt. Veggie of choice, we love asparagus, broccoli and brussel sprouts.
3. Spaghetti: For the sauce, I use Prego mushroom. I got into this habit because Krista used to be allergic to Olive oil and this particular brand is all natural (not organic, not sure about GMO), but in writing this I’m thinking that I know I could do better now that olive oil is well tolerated. I sautee some baby bellas and zucchini if I have it on hand and add to some ground beef and the sauce. For noodles we eat brown, organic, whole grain GFCF rice noodles. When I’m really going for low glycemic, I make spaghetti squash to replace the noodles.
Liquids: Krista mostly drinks filtered water but has recently rediscovered her love of almond milk. I buy it unsweetend and I add stevia and alcohol free vanilla to flavor it.
If you’ll notice, Krista’s lunch menu includes some “convenience foods”, this is because she is in school and we need to make her meals as easy as possible.
Krista does NOT follow the medically prescribed low glycemic diet. Although, many of the above examples are low glycemic, it is important to check with your doctor to make sure that these foods meet the LGIT guidelines. I can almost guess that the spaghetti sauce won’t.
Even though Krista does not follow the medically prescribed LGIT diet, I do consider her diet to be fairly low on the glycemic index. She follows the diabetic/hypoglycemic principal that if you give a carby food; such as a banana or cracker, you must include a healthy fat or protein to help to keep the sugars stable. When we veer away from this dietarty guidline we see “seizure activity” and lots of yeast! We can have only been able to loosen up the low glycemic portion on the diet because Krista is in good health and seizure free, if that were not the case, we would have to adhere more closely to low glycemic guidelines.
Happy eating! Please share your dietary successes!
Thursday, December 20, 2012
Is your angel deletion positive and you feel that non deletion kids are higher functioning? PLEASE READ!
So this article is LONG overdue! As you can read from my previous blog posts, we have had great success with recovering our daughter who has Angelman Syndrome from seizures, terrible chronic yeast infection that caused horrifice rashing and scaring on her bottom, eczema, many allergies (both food and environment), sleep disfunction and with all of this "recovery" came GLOBAL COGNITIVE IMPROVEMENT! We accomplished this by implementing a GFCF diet that was extremely low glycemic, made up mostly of meat, fat, nuts and the lowest of glycemic vegetables. Since she has recovered her health and her autistic symptoms; such as, lack of eye contact and hand flapping, we have been able to loosen up on the severity of the low glycemic or "protein type" side of things. Krista's diet is still relatively low glycemic but I just want to stress that the only reason we have been able to loosen up and let her eat things like bananas and gluten free whole grains like brown rice and quinoa again is because she has recovered; especially from the seizures. If your child is not recovered from seizures and you want to implement the LGIT diet, you have to follow your neurologist's or other health professional's guidlines closely in order to truly reap the benefits of the diet and recover your child from seizures; however, if you want my two cents, even the medical LGIT NEEDS to be GFCF and it currently includes dairy but it can be modified to exclude dairy and gluten if you let your health professional know that this is your intention.
Ok, now all that being said, let's talk about this doggone issue of my daughter having a UPD diagnosis vs. your kid having a deletion or whatever. Regardless of the variance on genetic type, it is still ANGELMAN! My struggle with my daughter in accepting that she was not a "typical kid", dealing with seizures and health problems is the same as yours and trust me the UPD diagnosis did not ease my pain when I read that UPD kids might speak up to 10 words while others with AS might speak 3! The extra words are nice and all; but, a 7 word difference does not a viable means of communication make! I hear that UPD kids do not tend to have as severe of seizures as do kids with deletions; but let me tell ya, I still don't like seizures and I don't want them to be a part of my daughter's life whether they are so-called "mild" or otherwise.
What causes Angelman sydrome and why is it that no matter which genetic sub-type that our kids have, is it still called Angelman sydrome anyway? I will speak with NO authority on this subject as my interest has never been problem oriented, I like to think of myself as more solution oriented. I understand that we need to know what the problem is and I'll leave the discovery of problems to the scientists and I'll continue to focus on the solutions. Fair enough? So, here's AS as I understand it, there is AS caused by a small deletion on chromosome 15 or a large one, there is UPD caused by inheriting two copies of chromosome 15 paternally, there are mutations, there is this newer cause that I know nothing about, I believe it's called ICD (feel free to correct me) and there are clinical cases and maybe even more reasons that a person becomes symptomatic of Angelman syndrome that I'm not even aware of. So why is it all called Angelman syndrome? As I understand it; it's because in all of these cases the 15th chromosome is affected (except clinical cases which may or may not have a chromosomal abnormality on 15; but our science hasn't figured it out yet; however, they are symptomatic) and this has affected the genetic expression of UBE3a. So no matter which subtype our kids have, they all have this problem with that gene. And as with every neuro genetic disorder, there will be a broad spectrum of health and abilities.
I do not say this to dismiss the fact that research shows that people with non deletion cases of Angelman syndrome tend to fair better cognitively and probably have a better chance of being able to ambulate successfully etc... But I have to tell you that everything that I have ever learned to do to improve the health and cognition of my daughter has come from the Autsim community. Mostly from my all time favorite website www.tacanow.org and I used to have insane thoughts; like, ahhh... if it were ONLY autism or ONLY ADD/ADHD. Until a universal wisdom spoke directly into my ear and said, their pain is NO less than yours! They expected typical children just like you did! Whoa! And here I was ignoring the pain of these families, thinking about how they had it easier than me because their kids were "verbal"; but some of those kids although verbal, will never refer to thier parents as mom and dad and will never hug thier parents or tell them that they love them! When a kid has ADD/ADHD; here you have this pretty typical looking kid but his behavior could be completely out of control making it almost impossible for the child to make and sustain friendships, they're typically brilliant kids but often times do very poorly in school because they can't focus on boring school work and are not given appropriate educational opportunities that would encourage the best of who they are to shine through! These parents are heart broken!
If I had never had this apiphany, I may have turned my back to the dietary therapies that have helped these kids to recover from illness and improve in cognition. Think about it; if you peel away the Angelman syndrome, you might have some autism, if you peel away the autism, you might have some ADD/ADHD... Right? Our children embody all of these things and while treatment for Angelman syndrome is in it's infancy; treatments for these other disorders are fairly well developed and I believe that a diagnosis of AS does not "trump" a diagnosis of autism or ADHD! If you look a little deeper your kid might even show signs of dyslexia. We have some idea of how to treat these things both with therapeutic diets and with therapies like those used for sensory integration problems. My point is, that although I am a huge supporter of all things that are aimed at curing Angelman syndrome, I know that we have to take a wait and see approach to find out if the new drug therapies will be proven both safe and effective. And I feel like healing is meant to happen for our angels TODAY! Right now! Right where we sit at our computers we can learn about the ways that nutrition heals all of these conditions and we can get out of our seats and into our kitchens and whip us something that will start our child's healing process today! And once that drug therapy is proven both safe and effective we will have children with immaculate health who will benefit from that drug therapy beyond expectations! Think about it, the drug therapy might do a very good job of improving cognitive function, but can it heal years of poor bowel function? Probably not, you can do that now and your child will benefit today.
For recovery stories of kids who have deletions and other Angelman sub-types, check out the blogs that I follow section and click on Liz Sordia's blog, Meet The Families of AS. I am grateful that these parents have chosen to share thier road to recovery for our benefit!
I want to share with all of you that it is my belief that any genetic advantage that Krista had was wiped completly out by a medical mistake when she was a newborn that led her to contract meningitis, then she was vaccine injured at 3 and began having seizures, illness and symptoms of autism and she was also diagnosed with a disorder that is not well understood called PANDAS; which occurs when a person is exposed to strep and has a psychotic reaction to the exposure due to brain inflammation. And yes, she has recovered and yes she speaks over one hundred words. We are exceedingly proud of her! But there is more work to be done; because a one hundred word vocabulary will not allow my daughter to come home from school today and tell me about all of the wonderful and exciting things that happend on the field trip that they are taking to the theater today.
But am I bummed out that my kid has only a hundred words? Not at all! I am happy for every bit of success and health that my daughter is allowed to benefit from because of what I learned about dietary therapy. I know there is more out there that will help her to have an independent adulthood; I haven't discoverd that holy grail just yet. That's because the Holy grail is not just one thing! It's not just diet, it's not just supplementation, it's not just the right therapy, it's a combination of many things that I currently know about and those that are to be discovered but I'm hot on it's trail and I would never give up on any of my other 3 "typical" kids, and there's no way in hell I will EVER give up on my Angel!
I share all of this with you to hopes that I am able to somehow foster an understanding that we are all in the Angelman boat together and we should all depend each other for support. And when I say support, I mean vent your frustrations if you must, but then align yourself with fellow AS parents who are positive that there is better life waiting for thier angel and for yours. Align yourself with parents who are SOLUTION oriented and who have experienced success and want to share it with you!
Ok, now all that being said, let's talk about this doggone issue of my daughter having a UPD diagnosis vs. your kid having a deletion or whatever. Regardless of the variance on genetic type, it is still ANGELMAN! My struggle with my daughter in accepting that she was not a "typical kid", dealing with seizures and health problems is the same as yours and trust me the UPD diagnosis did not ease my pain when I read that UPD kids might speak up to 10 words while others with AS might speak 3! The extra words are nice and all; but, a 7 word difference does not a viable means of communication make! I hear that UPD kids do not tend to have as severe of seizures as do kids with deletions; but let me tell ya, I still don't like seizures and I don't want them to be a part of my daughter's life whether they are so-called "mild" or otherwise.
What causes Angelman sydrome and why is it that no matter which genetic sub-type that our kids have, is it still called Angelman sydrome anyway? I will speak with NO authority on this subject as my interest has never been problem oriented, I like to think of myself as more solution oriented. I understand that we need to know what the problem is and I'll leave the discovery of problems to the scientists and I'll continue to focus on the solutions. Fair enough? So, here's AS as I understand it, there is AS caused by a small deletion on chromosome 15 or a large one, there is UPD caused by inheriting two copies of chromosome 15 paternally, there are mutations, there is this newer cause that I know nothing about, I believe it's called ICD (feel free to correct me) and there are clinical cases and maybe even more reasons that a person becomes symptomatic of Angelman syndrome that I'm not even aware of. So why is it all called Angelman syndrome? As I understand it; it's because in all of these cases the 15th chromosome is affected (except clinical cases which may or may not have a chromosomal abnormality on 15; but our science hasn't figured it out yet; however, they are symptomatic) and this has affected the genetic expression of UBE3a. So no matter which subtype our kids have, they all have this problem with that gene. And as with every neuro genetic disorder, there will be a broad spectrum of health and abilities.
I do not say this to dismiss the fact that research shows that people with non deletion cases of Angelman syndrome tend to fair better cognitively and probably have a better chance of being able to ambulate successfully etc... But I have to tell you that everything that I have ever learned to do to improve the health and cognition of my daughter has come from the Autsim community. Mostly from my all time favorite website www.tacanow.org and I used to have insane thoughts; like, ahhh... if it were ONLY autism or ONLY ADD/ADHD. Until a universal wisdom spoke directly into my ear and said, their pain is NO less than yours! They expected typical children just like you did! Whoa! And here I was ignoring the pain of these families, thinking about how they had it easier than me because their kids were "verbal"; but some of those kids although verbal, will never refer to thier parents as mom and dad and will never hug thier parents or tell them that they love them! When a kid has ADD/ADHD; here you have this pretty typical looking kid but his behavior could be completely out of control making it almost impossible for the child to make and sustain friendships, they're typically brilliant kids but often times do very poorly in school because they can't focus on boring school work and are not given appropriate educational opportunities that would encourage the best of who they are to shine through! These parents are heart broken!
If I had never had this apiphany, I may have turned my back to the dietary therapies that have helped these kids to recover from illness and improve in cognition. Think about it; if you peel away the Angelman syndrome, you might have some autism, if you peel away the autism, you might have some ADD/ADHD... Right? Our children embody all of these things and while treatment for Angelman syndrome is in it's infancy; treatments for these other disorders are fairly well developed and I believe that a diagnosis of AS does not "trump" a diagnosis of autism or ADHD! If you look a little deeper your kid might even show signs of dyslexia. We have some idea of how to treat these things both with therapeutic diets and with therapies like those used for sensory integration problems. My point is, that although I am a huge supporter of all things that are aimed at curing Angelman syndrome, I know that we have to take a wait and see approach to find out if the new drug therapies will be proven both safe and effective. And I feel like healing is meant to happen for our angels TODAY! Right now! Right where we sit at our computers we can learn about the ways that nutrition heals all of these conditions and we can get out of our seats and into our kitchens and whip us something that will start our child's healing process today! And once that drug therapy is proven both safe and effective we will have children with immaculate health who will benefit from that drug therapy beyond expectations! Think about it, the drug therapy might do a very good job of improving cognitive function, but can it heal years of poor bowel function? Probably not, you can do that now and your child will benefit today.
For recovery stories of kids who have deletions and other Angelman sub-types, check out the blogs that I follow section and click on Liz Sordia's blog, Meet The Families of AS. I am grateful that these parents have chosen to share thier road to recovery for our benefit!
I want to share with all of you that it is my belief that any genetic advantage that Krista had was wiped completly out by a medical mistake when she was a newborn that led her to contract meningitis, then she was vaccine injured at 3 and began having seizures, illness and symptoms of autism and she was also diagnosed with a disorder that is not well understood called PANDAS; which occurs when a person is exposed to strep and has a psychotic reaction to the exposure due to brain inflammation. And yes, she has recovered and yes she speaks over one hundred words. We are exceedingly proud of her! But there is more work to be done; because a one hundred word vocabulary will not allow my daughter to come home from school today and tell me about all of the wonderful and exciting things that happend on the field trip that they are taking to the theater today.
But am I bummed out that my kid has only a hundred words? Not at all! I am happy for every bit of success and health that my daughter is allowed to benefit from because of what I learned about dietary therapy. I know there is more out there that will help her to have an independent adulthood; I haven't discoverd that holy grail just yet. That's because the Holy grail is not just one thing! It's not just diet, it's not just supplementation, it's not just the right therapy, it's a combination of many things that I currently know about and those that are to be discovered but I'm hot on it's trail and I would never give up on any of my other 3 "typical" kids, and there's no way in hell I will EVER give up on my Angel!
I share all of this with you to hopes that I am able to somehow foster an understanding that we are all in the Angelman boat together and we should all depend each other for support. And when I say support, I mean vent your frustrations if you must, but then align yourself with fellow AS parents who are positive that there is better life waiting for thier angel and for yours. Align yourself with parents who are SOLUTION oriented and who have experienced success and want to share it with you!
Sunday, December 16, 2012
Meeting your calcium requirement without dairy is EASY!
I had my wonderful son Stevie record this for me because people are truly concerned about meeting thier calcium requirement when they give up dairy. This can be of special concern to parents of children with Angelman syndrome as we are aware of the dental health problems that our kids face; as well as the fact that it seems that our kids may be breaking bones more often than typical kids.
Why are they breaking bones and having more dental decay than the average, same age population? I'm not an expert; but as usual, I'll tell ya exactly what I think! SIMPLE! It's metabolic! Our kids simply don't metabolize nutrients well. When you don't metabolize your nutrients well, your body is unable to assimilate nutrients effeciently; thereby, causing health issues associated with being malnurished. Whether your angel is rail thin or pleasently plump is no true indication of proper nurishment. Some of the most obese people in the world are malnurished! They eat and eat and eat some more in search of those missing nutrients!
So, I'll share with you our experience, our Krissy angel had terrible dental decay and eventually got her teeth all fixed up for a WHOPPING $7,000.00. She had 13 cavities! I was accused of being a bad mom by several special needs dentist who insisted that clearly Krista was eating LOADS of sugar and sugar laden, carby foods! When I informed one such dentist that Krista was on a very clean, 90% raw (at the time, we have since lossened up when her health improved) and had not been privy to sugar for most of her life, he blamed my allowing her to sleep with a bottle and the sugar that is in formula without brushing her little baby gums. I said my child was breast feed exclusively for 16 months, well then it was my sugar laden breast milk that caused her decay!
I share this with you because I hope to spare you and your child the pain and riducule of a so-called professional who just doesn't understand that our special needs kids have a problem metabolizing and assimilating nutrients! Don't accept this crumby explaination as truth! We are good parents, doing the best we know how to help our kids get healthy and STAY healthy!
When Krista was seen at Dr. Mercola's clinic (mercola.com), it was explained to me that Krista's calcium level was suspiciously high. I think, awesome! No, not awesome! The level was high because her body was so acidic (google acidic and alkaline for a list of foods to find out which push your body this way or that) that her body was leaching calcium from her bones in order to help her deal with the acidic conditions, much the same way that you get calcium in your Tums (please don't go get this for your kids, there are big problems involved in killing stomach acid, a better way to deal with reflux is cal/mag supplementation, enzymes and probiotics just to name a few) to help with heart burn. Since the body is always moving itself toward homeostasis (health) it will do whatever it takes to keep itself alive and functioning optimally; for this reason, her body was leaching calcium from her bones; which did serve an important purpose for her body but resulted in extremely poor dental health.
How to remedy this problem? Nutritional support! Fresh organic foods that are loaded with every, vitamin, mineral and nutrient known to man including calcium! But our angels appear to not be assimilating nutrients well as evidenced by the problems with bones, acid reflux, contipation, diarrhea, so on and so forth! So we must support thier tummies! Give those tummies support! Liquid cal mag is good, chewable papaya enzymes with every meal is our favorite and daily probiotics. As my friend and fellow angel mom pointed out to me, juicing is just a BIG way of loading up on nutrients in a very bioavailable way. Do your research and make the choice that seems right to you! Mother (and lots a times even Father) knows best. If you don't know where to start with supplementation and nutrition, visit my website and schedule your free 50 minute nutrition consultation and we'll discuss yours or your child's specific situation and come up with a plan! karen-van-puyenbroeck.healthcoach.integrativenutrition.com.
Why are they breaking bones and having more dental decay than the average, same age population? I'm not an expert; but as usual, I'll tell ya exactly what I think! SIMPLE! It's metabolic! Our kids simply don't metabolize nutrients well. When you don't metabolize your nutrients well, your body is unable to assimilate nutrients effeciently; thereby, causing health issues associated with being malnurished. Whether your angel is rail thin or pleasently plump is no true indication of proper nurishment. Some of the most obese people in the world are malnurished! They eat and eat and eat some more in search of those missing nutrients!
So, I'll share with you our experience, our Krissy angel had terrible dental decay and eventually got her teeth all fixed up for a WHOPPING $7,000.00. She had 13 cavities! I was accused of being a bad mom by several special needs dentist who insisted that clearly Krista was eating LOADS of sugar and sugar laden, carby foods! When I informed one such dentist that Krista was on a very clean, 90% raw (at the time, we have since lossened up when her health improved) and had not been privy to sugar for most of her life, he blamed my allowing her to sleep with a bottle and the sugar that is in formula without brushing her little baby gums. I said my child was breast feed exclusively for 16 months, well then it was my sugar laden breast milk that caused her decay!
I share this with you because I hope to spare you and your child the pain and riducule of a so-called professional who just doesn't understand that our special needs kids have a problem metabolizing and assimilating nutrients! Don't accept this crumby explaination as truth! We are good parents, doing the best we know how to help our kids get healthy and STAY healthy!
When Krista was seen at Dr. Mercola's clinic (mercola.com), it was explained to me that Krista's calcium level was suspiciously high. I think, awesome! No, not awesome! The level was high because her body was so acidic (google acidic and alkaline for a list of foods to find out which push your body this way or that) that her body was leaching calcium from her bones in order to help her deal with the acidic conditions, much the same way that you get calcium in your Tums (please don't go get this for your kids, there are big problems involved in killing stomach acid, a better way to deal with reflux is cal/mag supplementation, enzymes and probiotics just to name a few) to help with heart burn. Since the body is always moving itself toward homeostasis (health) it will do whatever it takes to keep itself alive and functioning optimally; for this reason, her body was leaching calcium from her bones; which did serve an important purpose for her body but resulted in extremely poor dental health.
How to remedy this problem? Nutritional support! Fresh organic foods that are loaded with every, vitamin, mineral and nutrient known to man including calcium! But our angels appear to not be assimilating nutrients well as evidenced by the problems with bones, acid reflux, contipation, diarrhea, so on and so forth! So we must support thier tummies! Give those tummies support! Liquid cal mag is good, chewable papaya enzymes with every meal is our favorite and daily probiotics. As my friend and fellow angel mom pointed out to me, juicing is just a BIG way of loading up on nutrients in a very bioavailable way. Do your research and make the choice that seems right to you! Mother (and lots a times even Father) knows best. If you don't know where to start with supplementation and nutrition, visit my website and schedule your free 50 minute nutrition consultation and we'll discuss yours or your child's specific situation and come up with a plan! karen-van-puyenbroeck.healthcoach.integrativenutrition.com.
Friday, December 7, 2012
A MEANINGFUL THERAPEUTIC ALREADY EXISTS!
A Meaningful Therapeutic Already Exists!
This is the phrase that rang loudly through my head as I sit listening to the Scientific lecture given by FAST, presented by Dr. Rebecca Burdine at the gala last weekend as I had the distinct pleasure and privilege of attending this most informative event and celebration. As I sit waiting with baited breath as every other parent did, waiting to hear about what scientific breakthroughs had been made and how that translates to a cure for AS; I hear the presenter explain her own discomfort with using the term “cure” and that maybe we can all just agree on the term “meaningful therapeutic”.
So what does that mean? Please forgive me if I do not get Dr. Burdine’s wording exact as I am sure that the lecture was recorded and will be available for review at www.cureangelman.org soon. However; as I recall, the gist of what she was saying, is that a meaningful therapeutic would include an overall better quality of life for her daughter, a life without seizures, illness and improved ambulation. She said that they could get around the lack of speech. Presumably meaning that through alternative means of communication, lack of speech could be overcome.
Ok this is a really fair and politically correct answer to whether or not we should be hurling around the word “cure” and providing an explanation for what a “meaningful therapeutic” would be or look like. My own personal issue with this; is that, for my daughter, the “meaningful therapeutic” already exists! And it exists in the form of a therapeutic, low glycemic, GFCF, dye free, minimally processed diet.
For this reason, I was elated, to say the very least that during the education lecture; Erin Sheldon presented on many important topics including seizure treatments. These seizure treatments included the very safe, effective and well researched treatment of the low glycemic diet as a therapeutic for seizures in AS. This is the work of Drs. Ron Thibert and Elizabeth Thiele. Please take a look at this link to an interview with Dr. Thibert where he explains that those affected by Angelman Syndrome who are given either a ketogenic or low glycemic diet “have a response to dietary therapy that is even higher than that of the regular epilepsy population”!
THIS SHOULD BE FRONT PAGE ANGEL NEWS! A MEANINGFUL THERAPEUTIC FOR THE TREATMENT OF EPILEPSY IN ANGELMAN SYNDROME HAS BEEN DISCOVERED AND VERIFIED USING THE SCIENTIFIC METHOD!
And this meaningful therapeutic is just a diet! It is as simple as the old adage, “you are what you eat”! This applies for everyone; especially our angels.
My own little theory is what I like to call, removing the interference. In today’s modern world, there are countless forms of interference. There are the electromagnetic fields emitted by the computer I am typing on right now that have been shown to cause problems for everyone, especially the neurologically impaired, there are environmental allergies to the trees, the grass, the flowers outside. To the mold and the dust and the contaminants in the water inside. Sensitivities, to the dreadful fluorescent lights that adorn every classroom, these sensitivities cause many problems with one’s ability to concentrate, focus and learn. And when you look at all of that interference; you say “geez, I’d have to put my angel in a bubble to avoid all of that”. And you’d be right! Some parents do a very good and very effective job of avoiding quite a bit of this environmental interference but it’s a very pricy and laborious undertaking.
Fortunately, for all of us, there is a MUCH easier way! We can simply control the food that we allow into our home and into the mouths our children; especially our children with Angelman Syndrome.
I can only speak from my own experience but I fully believe that you will find the same to be true for you. Our daughter Krista, who has AS, used to be super sensitive to many things! I don’t have filters on my tap so when Krista would take a bath, she’d get rashes just from the water. When I would take her to the Children’s Garden, she’d sneeze and get dark circles under her eyes. So, what is a mother to do? Sure I could buy expensive water softeners and rush her home from the Children’s garden never to return; but, if I rush her away from the garden, the garden that she loves, the garden that brings such joy to her soul, then, what’s the purpose of all that I have been doing to help her get along so well in life for all of these years?
I can and probably should use an expensive whole house water softener/filter on all the taps in our house but what happens when she washes her hands at school? What happens when she uses that alcohol ridden, antibacterial, fragrance laden and certainly NOT dye free soap to wash her hands?
Well, I’ll tell ya, in the past, all of these things were problematic; however, the longer we stick with a clean diet for Krista, a diet that is meant to “remove the interference” and to create health where there was once illness, Krista’s sensitivities to all of this outside interference, have become completely unnoticeable! She has absolutely no outward signs that she is reacting in any way to our toxic environment. An environment that is nearly impossible to control. Krista now enjoys hours of swimming in a chlorinated pool; as well as hours at a time just living it up, smelling the daises, and jumping into leaves with her friend at her beloved garden!
Before we changed Krista’s diet, she was sick a whole lot of the time, she was having seizure activity, her walking was there but not really good and not really safe. There wasn’t much babbling, speech or speech like sounds. She had HORRIFIC diaper rash caused by yeast, my poor little baby looked like a burn victim on her bottom! She had eczema at the nape of her neck and behind her knees. This eczema would itch all night and she would spend hours at a time scratching it as it bled. We would wrap these patches up as tight as we could to keep her from doing this harm to herself but the bandages would only contribute to her compulsion to scratch and dig at these areas. She’d spend about two hours per night coughing due to phlegm that was tickling her throat and not allowing her to sleep. She’d swing her arms back violently as though she felt that she was falling while trying desperately to fall asleep(we later came to understand that this was a seizure activity). She had terrible reflux, projectile vomiting and bowel movements that cycled between painful constipation and even more painful diarrhea. Krista never slept more than 30 minutes at a stretch pre diet; which, contributed greatly to the depressed mood that I couldn’t shake; which in turn, affected our other children whose emotional needs really became neglected.
Post diet: Krista says a hundred plus words!!!!!!!!! Including my favorite phrase… I LOVE YOU!!!!! And “Hi Mama”! She is totally seizure free as long as there are NO dietary infractions! She sleeps AT LEAST 8 hours per night! Krista not only walks safely, but she RUNS, hops, skips, flips, swims and swings! All things, that not only increase her independence; but, helps her to truly enjoy a quality of life that was difficult for us to conceive of prior to the diet. Obsessively scratching, bleeding eczema is a thing of ancient history! No more rashes of the bottom and to look at it now, you would never know that she, at one time, truly looked like a burn victim! She has clear skin and radiant health! And my other 3 children are now able to receive the emotional attention and support that they always deserved! I learned through Krista that gluten was causing my debilitating arthritis and since ditching it 2 years ago my arthritis is at least 90% better!
In short, because Krista healed, our family healed! I want that for every angel family who is ready to receive it!
For that reason, I enrolled at Integrative Nutrition; I am about 3-4 months from receiving my certification as a Health Coach (really means Nutrition Counselor but Health Coach is the official title). And I want to be of service to the parents of children with AS. If you are ready to change your Angel’s life and to receive what I believe to be a “meaningful therapeutic”, this safe and effective treatment that already exists! Then contact me and I am happy to work with you and your family toward recovery!
Karen VanPuyenbroeck
krissyangelsmom@yahoo.com
“Let food be thy medicine and medicine be thy food”
Hippocrates
Thursday, December 6, 2012
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