Its been a very long year and I know I have not updated anyone on how my son is faring but tonight I have the time and the need to share his progress.
Ever since his diagnosis of PANDAS/PANS in Nov 2013 we have been trying to figure out how to reduce the tics because they became a pretty constant staple in our daily lives. We put him on daily antibiotics for 7 months to kill the strep infection that he acquired in Nov 2013 but his tics did not go away. They reduced in severity but they were still very present all day long. The daily antibiotics (as I now realize) were not the right decision. But I was in a state of panic and needed relief so I did what I thought was best.
In the end, the 2 supplements that I will talk about now have been the catalyst for real change in my son's condition. First: BRAVO Probiotic. Because of all the antibiotics, my son's gut was a mess. He had yeast again and lots of bad bacteria. He even had clostridia. Once I started him on the BRAVO all his vocal tics resolved. I almost didn't believe it could be real because I had been living with them for so long but by the middle of the summer 2014 I knew that his gut must have healed. We did a follow up OAT test and knew for sure that the yeast was gone and so was the clostridia along with the vocal tics! What an obvious connection. You can read more about BRAVO here.
What we were left with was a whole mess of motor tics. Head nods, knee knocks, eye blinks, lip pouts, arm flaps, etc. I noticed that these would increase after exercise, being outside, exposed to pollen, temperature changes or offending foods. One night I was reading all about mast cell activation disorder and it seemed that my son fit the description to a T.
Mast cells are the body's first line of defense when it comes to allergens. Once they sense an allergen is present, they release histamine which then causes an inflammatory response.The inflammation is what was allowing his basal ganglia to be constantly attacked. In normal functioning bodies, the excess histamine is processed by an enzyme called DAO (diamine oxidase). In Cole's situation his mast cells were over acting and releasing histamine all the time. He needed a way to reduce this load and I started supplementing him with DAO under the brand name HISTAME. You can buy it here .
Within one week of supplementing with the HISTAME almost all of his motor tics resolved! We are now 4 and a half months virtually tic free. I haven't seen anything like this in 2 years. I can't even believe it. I am so afraid to believe it. But I know I have to share this because so many others out there are searching for answers and the medical community is just not up to speed with these types of disorders in children. In fact, the majority of pediatricians have never heard of or do not believe in PANDAS/PANS at all. Thus, parent's like me must seek out doctors that specialize in this and in most cases do not take insurance and charge $450+ an hour.
Where PANDAS/PANS is concerned, no two children are a like. But there are common denominators in many cases and if any of these symptoms mirror your child, please seek care from an integrative MD that believes in PANDAS/PANS. Do the research and get on latitudes.org. There is a wealth of information out there but most don't even know where to begin.
Right now, we are reclaiming our lives! Cole is amazing. He is in 1st grade, gifted and athletic. He has many friends and is learning a 2nd language. I can not be more proud of who he is. Throughout this entire journey, he and his brother have exemplified the true meaning of poise and grace. Me, on the other hand was a wreck and did not know how to handle anything. What I did do right was to take all my negative energy and focus it on finding healing for my son. I do think we are finally on that path. I don't think we are completely out of the woods but I think we have uncovered the key to his healing and with the help of some very amazing integrative physicians and homeopaths and we inch closer every day.
Tuesday, March 10, 2015
Friday, January 10, 2014
Winning the War of the Mind - GMO's
Here
is an objective look at the GMO debate (I know its coming from me but I
am trying to be as objective as possible here). Right now there is a
huge disconnect between what the bio tech folks are saying and what the
anti-GMO folks are hearing. You can read it all over the internet in
threads from articles about GMOs (both for and against). The reason for
this disconnect are the motivating factors
behind the beliefs. Let's look at the anti-GMO folks. Their big
motivation is fear. Fear of disease, of allergies, of neurological
disorders, of environmental disaster, of corporate monopolies of paid
politicians, of the unknown. Fear is a huge motivator. Especially when
you have children. Many of the anti's (as they so lovingly call us) are
parents and now have the responsibility of protecting our offspring the
best we can. One of the biggest ways we can control this is by what we
give our children to eat and if there is a shred of doubt as to the
safety of a certain product, we will not give it to our kids. We don't need to drown ourselves in scientific studies to create or assuage this fear either, frankly, its human nature and this is very important to understand.
Now lets look at the pro-science guys (I'm supposed to call them that because pro-GMO isn't fair apparently). What is their motivator? What motivates them to spend HOURS upon HOURS refuting the anti claims, slamming studies down their throats and claiming they know more than anyone else on the subject? I would suppose its money. I mean, no sane person would spend that much time on this unless there was some reward or paycheck at the end of it all. I have come to find that most of these pro-science folks work for bio techs, food companies or chemical companies and the like. The know that the burden of proof lies with them otherwise they will be out of a job. They work hard at trying to prove with scientific studies (double blind, peer reviewed) that GMOs are safe, do not increase the use of herbicides, benefit the farmer, feed the starving and are sustainable. However, whether that is all true or not is not the issue, the issue is their delivery. They come off as condescending, smug, glib and downright pompous. They insult the intelligence of the anti's by calling them anti-science when frankly, this is just not true. These bio tech folks need to take a page out of a marketing text book and realize that they need to start appealing to the fears of the anti's and stop attacking them with character insults. This derogatory behavior only leads to strengthening the anti's position and making them distrust the bio techs even more.
So to summarize, its really the way the pro-science guys are speaking to the anti-GMO crowd that seems to be the issue. The key for them will not be with their science, it will be with psychology. But they don't seem to know or understand that and therefore they will most likely lose this battle. I do believe there is a huge food revolution growing right now and its in the opposite direction of where the GMO's are going. (OK this last part wasn't so objective....sorry, it is a green blog after all ;))
Now lets look at the pro-science guys (I'm supposed to call them that because pro-GMO isn't fair apparently). What is their motivator? What motivates them to spend HOURS upon HOURS refuting the anti claims, slamming studies down their throats and claiming they know more than anyone else on the subject? I would suppose its money. I mean, no sane person would spend that much time on this unless there was some reward or paycheck at the end of it all. I have come to find that most of these pro-science folks work for bio techs, food companies or chemical companies and the like. The know that the burden of proof lies with them otherwise they will be out of a job. They work hard at trying to prove with scientific studies (double blind, peer reviewed) that GMOs are safe, do not increase the use of herbicides, benefit the farmer, feed the starving and are sustainable. However, whether that is all true or not is not the issue, the issue is their delivery. They come off as condescending, smug, glib and downright pompous. They insult the intelligence of the anti's by calling them anti-science when frankly, this is just not true. These bio tech folks need to take a page out of a marketing text book and realize that they need to start appealing to the fears of the anti's and stop attacking them with character insults. This derogatory behavior only leads to strengthening the anti's position and making them distrust the bio techs even more.
So to summarize, its really the way the pro-science guys are speaking to the anti-GMO crowd that seems to be the issue. The key for them will not be with their science, it will be with psychology. But they don't seem to know or understand that and therefore they will most likely lose this battle. I do believe there is a huge food revolution growing right now and its in the opposite direction of where the GMO's are going. (OK this last part wasn't so objective....sorry, it is a green blog after all ;))
Tuesday, November 26, 2013
Things Were Not What They Seemed
So I spent all that time telling you all how much progress I made with my son and how I basically healed him and his tics ceased. Well, its true we really did "get there" ......until November. Early this November my son's tics started showing themselves again. They were mild at first and I fussed with his diet thinking he developed another food allergy. I thought I had figured it out and removed strawberries from his diet and things seemed to get better. However, after two days his tics came on full force with a fury I haven't seen since May. I was terrified and confused. All the work I had put into healing my son, what was it for? I felt like a lie, a farce. How could I have written this blog so sure that I accomplished something that doctors deem impossible? Well, the truth lies somewhere in between.
I took both my boys to their regular pediatrician for a check up and on a whim I asked her to give my son a throat culture. She didn't understand why I was asking because he felt fine, ears, nose and throat were unremarkable and he did not have a fever or a cough. But low and behold the test came back positive for strep and she looked at me and asked how Cole's tics were. I mentioned how they had skyrocketed in the past week and then it hit me - he may have PANDAS.
Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep is a controversial disorder that many doctors either don't believe in or don't know enough about it or how to treat it. The National Institute of Health has been investigating cases of PANDAS for the past 12 years and has made progress in their research but a diagnostic test to confirm this disorder still does not exist. Instead its more of a clinical diagnosis made based on symptoms and response to antibiotics.
Many cases of PANDAS experience a sudden onset of either OCD or tics or both. However the range of neuropsychiatric symptoms is much greater. But in all cases the child is making strep antibodies that instead of attacking the bacteria are actually attacking the basal ganglia in their brain - causing the OCD/tics. So when a child becomes infected with strep the antibodies increase and the neuronal damage occurs.
Doctors have identified other bacteria/viruses that can cause the same effect in children as the strep bacteria does. These cases are being called PANS or PITAND but the common denominator in all of these cases is that these neurological conditions are brought on by an autoimmune reaction.
Even scarier is the belief that potentially 25% of all children diagnosed with OCD/Tourettes or ASD could in fact have PANDAS but are just not being treated for it.
Thankfully our Holistic MD (Dr. Taz) is well versed in PANDAS and gave Cole a blood test to confirm what we already believed. It came back showing elevated ASO and Anti dNase-B titres which meant his body was producing strep antibodies in response to the strep infection and this all coincided with his sharp increase in tics.
We put him on amoxicillan and then switched to keflex and over a period of 10 days we saw a dramatic reduction in his tics. He is almost back to baseline now and I feel relieved that we have a better understanding of what is going on inside his body.
All the work I did on his diet/yeast/methylation was perfect as we come to find out. Diet is half the battle for these kids with PANDAS. All foods causing inflammation must be removed and poor methylation addressed.
But the bigger question is WHY are these little kids having autoimmune disorders? Why is this happening to our children? I will address this in my next blog post. For now, know that we have come a long way and with God's guidance we have uncovered the source of my son's tics. I feel blessed that we are finally on the right path to healing.
I took both my boys to their regular pediatrician for a check up and on a whim I asked her to give my son a throat culture. She didn't understand why I was asking because he felt fine, ears, nose and throat were unremarkable and he did not have a fever or a cough. But low and behold the test came back positive for strep and she looked at me and asked how Cole's tics were. I mentioned how they had skyrocketed in the past week and then it hit me - he may have PANDAS.
Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep is a controversial disorder that many doctors either don't believe in or don't know enough about it or how to treat it. The National Institute of Health has been investigating cases of PANDAS for the past 12 years and has made progress in their research but a diagnostic test to confirm this disorder still does not exist. Instead its more of a clinical diagnosis made based on symptoms and response to antibiotics.
Many cases of PANDAS experience a sudden onset of either OCD or tics or both. However the range of neuropsychiatric symptoms is much greater. But in all cases the child is making strep antibodies that instead of attacking the bacteria are actually attacking the basal ganglia in their brain - causing the OCD/tics. So when a child becomes infected with strep the antibodies increase and the neuronal damage occurs.
Doctors have identified other bacteria/viruses that can cause the same effect in children as the strep bacteria does. These cases are being called PANS or PITAND but the common denominator in all of these cases is that these neurological conditions are brought on by an autoimmune reaction.
Even scarier is the belief that potentially 25% of all children diagnosed with OCD/Tourettes or ASD could in fact have PANDAS but are just not being treated for it.
Thankfully our Holistic MD (Dr. Taz) is well versed in PANDAS and gave Cole a blood test to confirm what we already believed. It came back showing elevated ASO and Anti dNase-B titres which meant his body was producing strep antibodies in response to the strep infection and this all coincided with his sharp increase in tics.
We put him on amoxicillan and then switched to keflex and over a period of 10 days we saw a dramatic reduction in his tics. He is almost back to baseline now and I feel relieved that we have a better understanding of what is going on inside his body.
All the work I did on his diet/yeast/methylation was perfect as we come to find out. Diet is half the battle for these kids with PANDAS. All foods causing inflammation must be removed and poor methylation addressed.
But the bigger question is WHY are these little kids having autoimmune disorders? Why is this happening to our children? I will address this in my next blog post. For now, know that we have come a long way and with God's guidance we have uncovered the source of my son's tics. I feel blessed that we are finally on the right path to healing.
Friday, October 25, 2013
GF/CF and Corn Free Pumpkin Muffins
1 1/2 C raw cane sugar (I used a little less than 1C and they were just the right amount of sweetness)
1/4 tsp baking powder (Hain corn free baking powder)
1 tsp baking soda
1/2 tsp cloves
1 tsp cinnamon
1/2 tsp nutmeg
1/2 tsp ginger
3/4 tsp sea salt
2 eggs
1 2/3 C Gluten/Corn free flour (Sugar and Spice Market Brand)
1/2 C coconut oil
1 C canned organic pumpkin
Mix dry ingredients
Mix wet ingredients separately
Combine and beat until smooth (use stand mixer if possible)
I make mini muffins and bake @ 350 for 13-15 mins
If you make this recipe - let me know how it turned out!
Tuesday, October 22, 2013
Get Your Kids to Eat Cauliflower
This is a very easy recipe and it tastes great!
Buy a head of cauliflower and chop it up into little florets. Spread them out on tinfoil and place on a cookie sheet. Drizzle olive oil over all the florets and roast in the oven at 450 for about 15 minutes or until they start to brown (don't burn them). Take them out and put into a food processor. Chop them for 5 -10 seconds or until they are the consistency of rice. Top with sea salt or spices your kids will love. My son loves sea salt. I tell him its a new type of rice and he eats it up! He asks for it every night now!
I am actually able to give him 2 veggies on his plate with dinner now.
Credit for this recipe: my friend Shannon from SC
Buy a head of cauliflower and chop it up into little florets. Spread them out on tinfoil and place on a cookie sheet. Drizzle olive oil over all the florets and roast in the oven at 450 for about 15 minutes or until they start to brown (don't burn them). Take them out and put into a food processor. Chop them for 5 -10 seconds or until they are the consistency of rice. Top with sea salt or spices your kids will love. My son loves sea salt. I tell him its a new type of rice and he eats it up! He asks for it every night now!
I am actually able to give him 2 veggies on his plate with dinner now.
Credit for this recipe: my friend Shannon from SC
Thursday, October 10, 2013
Corn Comes in Many Forms!!
The following excerpt was taken from A Corn Allergy Website. I had been asked by a friend to post a list of all the ingredients that contain corn or are actually corn but are just hidden under other names. So here you go!
The
lists of corn products, ingredients and additives that I provide are not
intended to be exhaustive, for that would be impossible to compile. There
are many additives that are derived from corn that we do not know about,
and often the employees of food companies do not know either. Plus, corn
derivatives can be found in everything from body powder to shampoo (I've
reacted to both)! The FDA, at this time, does not regulate corn to the
extent that it does, say, peanuts, so we corn allergy sufferers are truly
on our own. (Click
here for a printable List in a separate browser window.)
PLEASE NOTE: In addition to the items on this list not including everything that contains corn, not everything on this list will contain corn. It is that they can contain corn, and therefore may need to be outright avoided or used cautiously. Read more about this on the Corn Allergens as Ingredients page. The items identified with an asterisk * are the most common items that might not always contain or be derived from corn. Proceed with caution!
Corn Allergen List
The
lists of corn products, ingredients and additives that I provide are not
intended to be exhaustive, for that would be impossible to compile. There
are many additives that are derived from corn that we do not know about,
and often the employees of food companies do not know either. Plus, corn
derivatives can be found in everything from body powder to shampoo (I've
reacted to both)! The FDA, at this time, does not regulate corn to the
extent that it does, say, peanuts, so we corn allergy sufferers are truly
on our own. (Click
here for a printable List in a separate browser window.) PLEASE NOTE: In addition to the items on this list not including everything that contains corn, not everything on this list will contain corn. It is that they can contain corn, and therefore may need to be outright avoided or used cautiously. Read more about this on the Corn Allergens as Ingredients page. The items identified with an asterisk * are the most common items that might not always contain or be derived from corn. Proceed with caution!
Note: My son does not react to ALL of these. For example, he can have Xanthan Gum with no effect. Its really a trial and error process but its best to try to eliminate as many of these as possible because almost 100% of corn ingredients are made from GMO corn unless labelled otherwise! |
|
GF/CF Corn Free Recipes (Baked Goods)
The following recipes are for homemade snacks that I put in my kid's lunch boxes or give them as snacks at home. Everything is gluten/dairy and corn free. They are all pretty easy to make and 3 out of the 4 of the recipes are grain free! I use mini tins to make my muffins so they are pretty much bite size. My kids love them and I hope yours will too.
Apple Cinnamon Muffins
2 eggs (I use organic cage free)
1/2 C Almond Flour (I use Bob's Red Mill)
1/2 tsp baking soda (Hain corn free)
Pinch of salt (sea salt)
Pinch of Cinnamon
Pinch or more of ground flax or flax seeds (whichever you prefer)
1/4 C Apple Sauce (organic or you can puree apples)
a tiny bit less than 1/4 C olive oil
1/8 Raw honey
Mix the wet ingredients and then add in the dry ingredients and mix till there are no lumps.
Put in oven at 350 for 15 minutes.
Banana Coconut Muffins with Chocolate Chips
1/2 C Coconut flour (Bob's Red Mill)
1 tsp Baking Soda
1/4 tsp Sea Salt
1 Soft Ripe Banana (mashed up)
4 eggs
1/2 C Raw Honey
1/3 C Coconut Yogurt (So Delicious Brand)
1/4 C Mini Chocolate Chips (Enjoy Life Brand)
Mix the dry ingredients first. Then mix in the wet until there are no lumps. Bake at 350 for 20 minutes. You can substitute berries for the banana and change up the recipe!
Garbanzo Bean Chocolate Chip Cookies
1 1/4 C Chickpeas, rinsed and patted dry
2 tsp Vanilla (Frontier alcohol free)
1/2 C + 2 TBSP Almond Butter
1/4 C Raw Honey
2 tsp Baking Powder (Hain)
Pinch of Sea Salt
1/2 Mini Chocolate Chips (Enjoy Life Brand)
Combine all ingredients except the chips in a food processor and blend until smooth. Transfer mixture into a separate bowl and mix in the chips. Form small spoon size dollops on parchment paper. Place on a cookie sheet and bake at 350 for 10 minutes.
Oatmeal Chocolate Chip Cookies
1/4 C Coconut Oil
1/4 C Raw Sugar
1/4 C Organic Light Brown Sugar
1 egg
1 tsp Vanilla (Frontier non alcoholic)
1/2C + 1/8 C Gluten Free Flour (I use Sugar and Spice market all purpose)
1/4 tsp Baking Powder (Hain)
Pinch of Sea Salt
1/2 TBSP Cinnamon
3/4 C Gluten Free Oats (not steel cut)
1/4 C Mini Chocolate Chips (Enjoy Life Brand)
Pre heat oven to 350. Beat coconut oil and sugar in a mixer. Add the egg and beat more, add the vanilla and beat more. Mix dry ingredients separately and then combine. Beat until no lumps and then mix in by hand the chocolate chips.
Make spoon size dollops on parchment paper. Place on a cookie sheet and bake for 8-10 minutes.
Please let me know how these recipes come out of you try them. I would love to hear from you!
Apple Cinnamon Muffins
2 eggs (I use organic cage free)
1/2 C Almond Flour (I use Bob's Red Mill)
1/2 tsp baking soda (Hain corn free)
Pinch of salt (sea salt)
Pinch of Cinnamon
Pinch or more of ground flax or flax seeds (whichever you prefer)
1/4 C Apple Sauce (organic or you can puree apples)
a tiny bit less than 1/4 C olive oil
1/8 Raw honey
Mix the wet ingredients and then add in the dry ingredients and mix till there are no lumps.
Put in oven at 350 for 15 minutes.
Banana Coconut Muffins with Chocolate Chips
1/2 C Coconut flour (Bob's Red Mill)
1 tsp Baking Soda
1/4 tsp Sea Salt
1 Soft Ripe Banana (mashed up)
4 eggs
1/2 C Raw Honey
1/3 C Coconut Yogurt (So Delicious Brand)
1/4 C Mini Chocolate Chips (Enjoy Life Brand)
Mix the dry ingredients first. Then mix in the wet until there are no lumps. Bake at 350 for 20 minutes. You can substitute berries for the banana and change up the recipe!
Garbanzo Bean Chocolate Chip Cookies
1 1/4 C Chickpeas, rinsed and patted dry
2 tsp Vanilla (Frontier alcohol free)
1/2 C + 2 TBSP Almond Butter
1/4 C Raw Honey
2 tsp Baking Powder (Hain)
Pinch of Sea Salt
1/2 Mini Chocolate Chips (Enjoy Life Brand)
Combine all ingredients except the chips in a food processor and blend until smooth. Transfer mixture into a separate bowl and mix in the chips. Form small spoon size dollops on parchment paper. Place on a cookie sheet and bake at 350 for 10 minutes.
Oatmeal Chocolate Chip Cookies
1/4 C Coconut Oil
1/4 C Raw Sugar
1/4 C Organic Light Brown Sugar
1 egg
1 tsp Vanilla (Frontier non alcoholic)
1/2C + 1/8 C Gluten Free Flour (I use Sugar and Spice market all purpose)
1/4 tsp Baking Powder (Hain)
Pinch of Sea Salt
1/2 TBSP Cinnamon
3/4 C Gluten Free Oats (not steel cut)
1/4 C Mini Chocolate Chips (Enjoy Life Brand)
Pre heat oven to 350. Beat coconut oil and sugar in a mixer. Add the egg and beat more, add the vanilla and beat more. Mix dry ingredients separately and then combine. Beat until no lumps and then mix in by hand the chocolate chips.
Make spoon size dollops on parchment paper. Place on a cookie sheet and bake for 8-10 minutes.
Please let me know how these recipes come out of you try them. I would love to hear from you!
Subscribe to:
Posts (Atom)