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Posts Tagged ‘Food Allergies’

Quick update on Jordan’s progress. It’s been a month and a half since the new doctor and his new supplements protocol was supposed to start. After being much discouraged because NONE of the supplements from the new doctor will enter beyond Jordan’s lips (and it’s two months between appointments), I went searching – on my own again 🙂  I came across a supplement called Liver Life.

Liver Life, it is made by BioRay and is the precursor to the chelating (pulls heavy metals from the body) supplement NDF and NDF+, which we’ll probably try at a later date when he’s ready for it. It is an herbal tincture and is designed to decongest the liver, allowing acids and toxins to drain from the body (opening Phase I and Phase II detoxification pathways). That’s why this is a precursor to chelation. It’s not wise to start pulling metals out of the tissues until the body can efficiently eliminate them! Liver Life also helps to regulate the acid/alkaline balance in the body and decrease certain types of allergy reaction.

Jordan has been on it for 2 weeks now. After the 3rd day on it we saw some great improvements. He is more alert, understands more about what is going on around him, follows conversations some, is adding words to his vocabulary more, and in the last couple of days has started adding connecting words!  This is very exciting. When Jordan started on the prescription anti-fungals (he was only on them for a month before I discontinued them) he lost all his connecting words and they haven’t come back. He had been saying things like, “I fell down” or “Here you go, Mommy” as he handed me something, but since the prescription anti-fungals and subsequent regaining of the language he lost while on them, he now says things like, “fall bump head hurts” or “sitting truck” instead of “sitting on the truck.” It’s been 3 months since he’s been totally off anti-fungals and the connector words hadn’t come back. But in the last couple days, I’ve heard “on” “in” and “the”!!! He also has a new twinkle in his eye and has lost some of that sullen puppy dog look he’s had most of his life!  Exciting times here, hopeful with the possibilities for the new supplements. They are all natural, appear to be effective, and Jordan can’t even taste it in his juice! We’ll see what the new doctor has to say about the new supplement I added next week when we consult – yikes.Jordan and hair sticking up_edited-1

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Jordan’s issues became apparent when he was 3 weeks old and started vomiting, spitting up (reflux), screaming for 5 hours a day/ night, had rashes, diarrhea, green and mucousy bowel movements and was just plain miserable. We quickly discovered he had multiple food allergies and were able to determine what they were and eliminate them from my diet (he was nursing). The screaming stopped, the vomiting stopped, the reflux ceased.

At one year old when he needed to start eating solid foods on his own – he had exclusively nursed up to this point – it became obvious he was allergic to all food (except a plain, baked sweet potato).  He reached normal developmental milestones like crawling and walking through about 13 or 14 months of age. But, by 18 months it was obvious he had a speech and developmental – cognitive, emotional and behavioral – delay (but allergies can do that). During this time I researched everything I could find on the causes of food allergies. We greened our house and environment as much as possible, removing toxins and changing our diet to organic whole foods as much as we could.

It was when he was around 18 months that I learned the causes of allergies, asthma, autism, and ADD/ADHD are the same! So I started reading everything I could on the causes of autism, figuring, since the causes are the same and there is tons of information on autism, I’d read about the causes of autism and be able to help my son with his food allergies, since there isn’t much information specifically on the causes of allergies. The more I read on autism the freakier it got for me. Jordan’s physical symptoms matched that of many autistic kids: multiple food allergies, diarrhea and constipation, tantrums, fear, super sensitive hearing, yeast issues, leaky gut…could Jordan have autism?

Socially he’s always connected with me, always looked in my eyes, desired to communicate. The one or two autistic kids I’d seen in my life before this were very severe (although I didn’t know that) and that’s what I thought autism was.  I knew something was wrong with Jordan, but was it autism? I struggled with how to tell people what was going on with him, especially in a brief sentence. So I started to say he had autistic-like problems.  He shared the same physical problems and symptoms as a huge number of autistic kids, but did that make it autism?   Well, no, it doesn’t. Autism is classified as a neurological disorder, not a physical disorder, so it’s diagnosed by cognitive, social, and behavioral symptoms, not by physical symptoms or issues. And that is where the two camps of autism are at war right now. One side believes autism is a neurological disorder, nothing can be done except some therapies to try to socialize and teach them. The other side believes autism is a physically-based disease that can be improved, reversed and even cured by addressing those underlying physical problems through biomedical treatments.

You can guess which camp I’m in 🙂 Because of Jordan’s extreme sensitivity to foods and other substances, I quickly learned that toxins affect him greatly. It’s easy to see and doesn’t take a rocket scientist to figure it out. Even just the other day I put sunscreen on him – I knew better. I shouldn’t have. But, I was afraid he would get sunburnt being in water out in full sun for awhile. The only sunscreen available was full of chemicals. (I failed to prepare and have a less toxic one available). That night he was crying and wouldn’t fall asleep like he normally does and fussed for hours past his bedtime. With him, it is easy to see when his toxic burden is getting to great. His eyes swell, he gets lines under them, and he gets fussy and miserable. Forget swimming in a chlorinated pool. He can only handle so many toxins at once and with the amount we are surrounded with in our everyday lives, it’s no wonder the rate of autism is increasing at epidemic rates. Autism is an environmental illness due to the toxic burden put on our bodies and our kids are paying a heavy price.

So, does Jordan have autism?  I’ve never had him formally diagnosed,  I don’t see the point. But from the diagnostic tools I’ve been able to use online, he comes out as having pervasive developmental disorder not otherwise specified (PDD – NOS). It is a form of autism and is certainly on the autism spectrum of disorders. PDD-NOS encompasses a wide range and sometimes can be used as a “soft” diagnosis by practitioners who don’t have the heart to tell parents their child has autism. However, in Jordan’s case I would agree that it’s PDD-NOS. He doesn’t fit classic autism or Asperger’s. Some of his symptoms are severe, where other areas he seems unaffected. Some of the symptoms where he seems unaffected or nearly so are the defining characteristics of these other diagnoses. I still have a difficult time saying he has autism, or even PDD. I prefer to say he has some developmental delays, sensory issues, or food allergies depending on the situation. Even better, I say he has yeast overgrowth, leaky gut, malabsorption of nutrients, a malfunctioning and weak immune system, and heavy metal toxicity because that’s what the real issues are.

 Here are a few statistics from Generation Rescue:

  • Autism now impacts 1 in 150 children, up from 1 in 10,000 in the 1970s. That is an increase of 6,000%.
  • 1 in 150 children have autism. 1 in 12 children have ADHD. 1 in 6 children have a learning disorder.
  • Autism is an environmental illness caused by an overload of toxic metals, bacteria, viruses, and chronic inflammation.
  •  Many children with autism share the same physical symptoms including gastrointestinal distress, food allergies, immune issues, vitamin and mineral deficiencies, and sleep disturbances.
  •  In the 1980s, the recommended vaccine schedule was 10 shots by age 6. Today, it is 36 shots.
  • The U.S. gives more vaccines at an earlier age than any country in the world.
  • Children with autism test for higher amounts of toxic metals in their system than their neurotypical peers.
  • Typically, doctors do not tell parents about biomedical treatment. They find out about it from other parents and the web.  
  •  There are more than 400 doctors in the US dedicated to treating children with autism biomedically.
  • Biomedical treatment consists of diet changes and vitamin, mineral and other supplementation.
  • Vaccines are not mandatory for school. It is a parent’s choice to decide what and when to vaccinate.

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“It’s not that our opponents are ignorant, it’s just that so much of what they know, just isn’t so.” –President Ronald Reagan

Many days it can be frustrating to know what I know about health, autism, sensory issues, allergies,  their causes, and live in this society. There is so much misinformation about treatments for autism and developmental delays, etc. The main push is: go do some therapies like ABA, physical therapy, occupational therapy, speech therapy, socialization, etc. And the sooner you get those therapies for you child, the greater chance there is for a better outcome. Let me be clear about this – I am NOT against these therapies. They CAN be helpful. However, they are only minimally helpful if that is the ONLY treatment these children get.  If these children get other treatments FIRST, or even simultaneously, these forms of therapy will be exponentially more helpful. But, often times these therapies are the only thing moms hear about to help their child.

First we must get rid of the things in the child life that are harming the functioning of the brain and body. Things like food allergens (casein, gluten, and others specific to the child), foods that in general harm the body and alter how it functions (sugar, caffeine),  and chemical inputs (perfumes, cleaners, detergents, soaps, lotions, etc that are all toxic). These are all things that can be done at home relatively inexpensively. And these are very critical first steps, and can be done even before (or without ever) starting treatments with a doctor.

Second, we need to address what is physically wrong with the child. For this, additional professional help is needed. Is the child’s head misshapen or are some of the cranial bones overlapping or out of place? (If so, the brain is likely not getting nutrients to all the right places in adequate amounts).  Is there an overgrowth of yeast? Does the child have heavy metal toxicity? Does the child have chronic diarrhea or constipation? What does the child’s vitamin/mineral profile look like?  And other similar things.

These issues are critical to treatment, and all the therapies (physical, occupational, ABA, etc)  in the world will not correct them. Not only will it not correct them, until these issues are addressed, the brain’s functioning is compromised and the therapies will only be minimally effective. They may show some good results, but if these things were addressed the results would be so much more!

So the media is celebrating new advances and cutting-edge therapies for autism. For example, just last week the Today Show did a special on how they are now using robots to teach autistic kids socialization skills. It’s so cutting-edge and exciting. Before there was no hope for treating autistic kids, but now there are robots!!! And there has been 60 million dollars donated to this research about using the robots.  But they are missing the boat. If the things compromising the functioning of the brain and the physical problems are dealt with FIRST, then the therapies (including robots) utilized – to teach the kids what they missed learning when their brains couldn’t function properly – that would be a breakthrough!

It isn’t that these scientists, doctors, moms are ignorant, not at all, in fact they are very knowledgeable, they just have wrong information or are missing information. Ronald Regan said it perfectly, “so much of what they know just isn’t so.”

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jordans-bread

"That's my bread"

What does our typical day look like? What do we eat? I’ve gotten these questions many times, so I thought I’d share.

Supplements and Prescriptions Jordan is taking:

L-Glutamine – an amino acid that helps heal the gut wall – 2 times/day.

Digestive Enzymes- enzymes that help him break down his food and absorb the nutrients – every time he eats

Fish Oil – essential fatty acids, Omega 3 & 6 particularly, that make up the cell wall of every cell in the body. Fights inflammation, strengthens immune system, coats nerves so that impulses can communicate correctly, necessary for brain growth – 1 tsp./day

Probiotic – the good bacteria in the body’s gut – 2/day. (Given at a different time than the anti-fungals or S. Boulardii)

Nystatin/Diflucan/or Saccharomyces Boulardii (rotating)- the good yeast in the body’s gut and fights bad fungus – 1/day. Nystatin and Diflucan are prescription anti-fungals. These prescription anti-fungals completely messed Jordan up. He was only on them for 1 month, but he totally regressed, lost all his speech and emotional stability gains that he achieved between December and April. It took us about 10 months to gain back what he lost while on the anti-fungals for one month, it was a hard road and he struggled so much to gain back what he gained so quickly the first time. I pulled him off the program the DAN dr had him on. I retained the nutritional supplements, but no prescription anti-fungals and no LDA shots. I sought out other options and went an all natural route, it’s working great!

FungDx/CanSol (rotating) – all natural/herbal anti-fungals.

Electrolyte

Hemp Milk – although a food, I list is as a supplement because I get it in him any time I can because of the Omega fat ratio. It has the good Omega 6’s, not the polluted and damaged ones we are normally overdosing on in the American diet.

Multi-vitamin

OSR – an antioxident that is also a chelator, pulling heavy metals out of the body.

 

Exercises

If I were to describe these, most of you would think I’ve completely fallen off the turnip truck, as my Dad says. However, there is no arguing with the results we are getting from them. The theory behind them is to stimulate the body in specific ways to develop the deficient pathways in the brain. These have been assigned to Jordan by his cranial sacral doctor/chiropractic neurologist to stimulate areas that Jordan specifically needs to improve. So at the risk of many of you thinking I’ve lost my mind, here we go.

I hang Jordan upside down by his ankles, swinging him back and forth and in circles.

We “fly”. Jorday lays on my arm belly down and we zoom around the house looking for his blanket (or other favorite toy or pictures) anything to get him to extend his head up and back.

We have crawling races around the living room. (I now have a hole in the knee of my favorite jeans 🙂 )

I lay him on an exercise ball on his back and roll him back an forth and try to get him to reach backward to grab a toy on the floor.

I lay him on his stomach on the exercise ball and try to get him to lift his head and look at things or grab for a toy.

We play astronaut. I pick him up with his back toward my chest and grasp each of his thighs firmly so he’s in a seated position. Then swing him back and forth and – eventually, hopefully, upside down back over my shoulder. Right now he is WAY too scared to go very high, or fast, but he’s improving.

Recently we have added assisting him with doing sit-ups (where I pull him up as he hangs onto my fingers) but he’s pretty much like a wet fish just flopping and not joining in at all and his head lags way behind. We try one and he starts screaming. I pin his feet down and try to keep trying to do them, but we don’t usually get very far.

We have several others sprinkled in that we do occationally but these are the core ones we try to do daily.

We work them in throughout the day, but especially at night before bed time. Our living room is now littered with exercise balls of various sizes and a mini trampoline.

 

Foods

What we Don’t eat:

He is allergic to:

Dairy  – casein and whey proteins and anything that has them in it. Including goat milk. ie: cheese, yogurt, butter, ice cream, caramel, graham crackers, most commercial breads, most commercial baked goods, etc.

Gluten – (maybe) – so we eliminate it since the protein is so similar to dairy and can cause other problems in the brain, this includes wheat, barley, and others

Oats – in their own right, not because of gluten cross-contamination

Eggs, Yeast, Buckwheat, Honey, Food Colors, Pineapple, Pear,  Chocolate, Peanuts, Ginger, Gelatin

And a bunch of other things we haven’t identified yet. We’re careful of beef, he used to be very allergic to it.

We severely limit refined sugar. We do NOT eat Splenda (sucralose), or Nutrasweet (aspertame) – both very bad, sugar is actually better.

 UPDATE: As of October 2009, his allergies are beginning to resolve. I haven’t been too brave to try things, but he is no longer sensitive to beef, eggs, or oats (or at least not when he just has them once in a while).

What we DO eat

We mainly eat a whole foods diet. That means food in their whole form, as close to the way God made it as possible. Not processed, or only minimally processed.

Fruits – the ultimate fast food. It takes all of 3 seconds to peel a banana! Blueberries are his favorite!

Milks – almond milk, hemp milk, coconut milk

Organic Oils – olive, coconut, grapeseed

Sweeteners – stevia, xylitol, agave nectar, real maple syrup, (Jordan can’t do honey, but the rest of us do)

Grains – quinoa, amaranth, millet, brown rice, corn

Seeds – sunflower, pumpkin, sesame

Flaxseed –  a great replacement for eggs when cooking and SUPER healthy. I know, it’s a seed, but we eat it so often I listed it seperately.

Nuts – pecans, cashew, almonds, brazil (Jordan refuses to eat these, but the rest of us love them)

Almond or Cashew Butter – we use this all the time. Again, I know it’s a nut, but we use it so much I listed it seperate.

Ghee – milkfat without the protein, organic of course

Veggies – The rest of us eat a whole range, but Jordan eats a couple. potatos or sweet potatos cut, baked, and salted as fries. Corn (I know, actually a grain or starch), tomatos and any veggies mixed into a marinara sauce or salsa. I’m starting to slip things like kale into his morning smoothie. Once in a while he’ll slip something else in, like bok choy or carrot, but that is highly variable.

Herbs – garlic, chives, rosemary, cilantro, basil, oragano, thyme, parsley, cumin – I think that captures the most commonly used. And we use these a lot!

Meats, grass-fed – venison (ground, steaks, chopped, etc), turkey, chicken (only occationally since we can’t afford organic grass-fed) although we do use organic free range chicken broth liberally (no boullion cubes though). We do eat eggs, free range.

 

Menu Samples

Breakfast Options: smoothies, fruit, special corn flakes (ingredients as follows: cornmeal, grape &/or pear concentrate, sea salt) with alternative milk, or pancakes (made with allowable grains, milk, flaxseed, vanilla powder, etc. Took awhile but I now have a great recipe).

Snack (mid-morning and mid-afternoon): fruit, nut/date bar called LARAbar, fruit leather, rice/nut chips

Lunch: left overs from dinner, fruit, applesauce, pancakes, fries (the homemade baked kind)

Dinner: taco salad, venison burgers, spaghetti made with quinoa or rice pasta, grilled meat and veggies (a grilled rosemary and garlic venison steak is one of our favorites – Jordan’s too), stir-fry over brown rice (specially made sauce of course), vegtable soup, quinoa mexican “goulash” (a creation of my husbands that is a family favorite), turkey & grain meatloaf (agian, a creation of my husbands). To name a few of our current most common meals. It tends to change seasonally and as we find new favorite ingredients.
 
*Note: according to the boys, “Planes and Paint” are the blue corn chips and avacado & salsa we have with taco salad.  And spaghetti is “Worms and Dirt”.  Our green smoothies are “Monster Juice” and well, if it comes out more yellow, then it’s “Monster Snot”.  Have I mentioned I love having boys 🙂
 
Drinks: V8 Fusion (great for hiding medicine, but not ideal because of the sugar content), water, smoothies, “milk” shakes, and most recently peppermint tea

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hay-bales2Wow, where do I start? The last year and a half has been the most difficult of my life. It all started when Jordan was just 3 weeks old. He started screaming for hours on end, projectile vomiting, got a rash, had a little eczema, raspy breathing, anal fissures, and green poop.  I called the doctor and received no help. It took one week before we figured out I needed to stop eating dairy. (He was nursing). The day I took dairy out of my diet, he stopped screaming. Several days later I substituted soy milk, the screaming came back. So, I took out soy. This process continued for 8 months, by then I had to remove ALL dairy, soy (including soybean oil), all beans, peanuts, oats, and beef from my diet . Then, he stopped spitting up. 🙂 By then his other symptoms had cleared as well. During this time we saw 3 different doctors, none of them were able to help at all. When he was 4 or 5 weeks old, I had begun asking the question, “What caused this?” Where did these allergies come from?  And, I started researching. I read everything I could about allergies and their causes.

  

When he was 10 or 11 months old, we started trying to feed him some foods directly. He reacted to everything except sweet potato, pears (later to discover it was causing his horrible constipation), and animal crackers.  Behavioral issues (or more subtle reactions) started coming out too: tantruming – a lot; disturbed sleep, and  fussing and crying constantly unless he was held – I developed great bicepts. 🙂  The doctors still couldn’t help. I was still researching and found some alternative medicine treatments that held some possiblities.

 

 Jordan turned 13 months old and we embarked on trying acupressure treatments called NAET and BioSET. He had 5 months of allergy treatment through an acupunturist which has allowed him to eat fruits, vegetables, rice, beans, and some other things. And, it broke the cycle of him developing an allergy to everything he ate.  However, there is still a lot he cannot eat. His allergies also caused some Autistic-like or PDD (Pervasive Developmental Disorder) symptoms of speech delay, behavioral, and physical issues. But, I was still researching.

  

He is now 21 months old. We have finally found a doctor who understands allergies, the underlying physiology and causes, how it relates to behavioral and developmental stuff, AND how to treat it!!! Wahoo!!! We can officially say that Jordan has a leaky gut (holes throughout his intestines); Candida overgrowth (a fungal infection); toxins in his blood, and his immune system is messed up and operating incorrectly.  We are awaiting more tests to come back in January to see what shows up on those, but already know the treatment plan will take 3 years.  This doctor sent us to a cranial sacral specialist who also found that the bones in his head are overlapping, one side of his skull is more forward and larger than the other side, and the valves on either side of his large intestine are not working very well. The treatment for these additional things is only 2-3 months!

 

Prayer. One huge answer/praise is that I’ve been chasing this problem and trying to figure it out for 20 months.  Every spare minute I’ve been researching and finally figured it out a couple of months ago, and found a doctor who can help him!!! So, praise, we have answers and I have help – that’s HUGE!!!

Prayer #1 – the treatment to be effective

Prayer #2 – the treatment program has strict dietary requirements (many of them we were already doing). I’m going to need energy, patience, endurance, etc. and that’s once I figure out how to cook differently and where to get ingredients we’ll need.  We are now gluten, casein, yeast, and egg free – among other things.

Prayer #3 – the down side to all this – these doc’s aren’t covered by our insurance. So that’s prayer #3 – paying for his treatment.

 

Thanks for caring, reading all this, and praying! I’d love to hear from you, Sarah

  

 Update – 23 months old (Feb 24, 2009)

Wow! The last 2 1/2 months have been absolutely amazing! The final test is in – Jordan has heavy metal toxicity as well. Now the amazing and exciting part – check out the post on February 20, 2009!

 

 

 

 

 

 

 

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