Tuesday, October 13, 2009

New Autism Statistics Published by the CDC

In October the CDC (Center for Disease Control) released new Autism rate statistics, the rate of Autism continues to grow rapidly:
  • 1 in 91 children (formally 1 in 150 up until 2009 and 1 in 10,000 in the early 1990s)
  • 1 in 58 boys
  • Fastest growing developmental disability
  • More children will be diagnosed with autism this year than cancer, diabetes, Downs Syndrome and AIDS combined.
  • Approximately 1 million individuals in the US have autism
  •  Studies have shown that environmental toxins like mercury and pesticides can trigger autism.
  • There has been no study that has directly linked a pure genetics basis for autism.
  • The fastest growing genetic disorders increase at anapproximate rate of 1% per 100 years.  Autism is growing at a much greater rate.

Tuesday, September 15, 2009

Quote of the Day

My new favorite quote:

“The person who says it cannot be done should not interrupt the person doing it.” 
- Chinese Proverb

I just love this, so to all the naysayers out there, you can keep saying Autism is genetic and isn’t reversible, or that nutrition has nothing to do with neurological issues.  While your talking and naysaying, I’m busy saving my child! And I’m succeeding!

Saturday, September 12, 2009

Jordan's PDD-NOS (Autism) Heavy Metal Chelation Update

Jordan has been on OSR for one month now. OSR is an antioxident that is quite potent, but gentle as well, and is specific to chelating (pulling out of the body) heavy metals. It is fat soluable rather than water soluable (all other chelators are water soluable). This allows it to get INTO the cell AND cross the blood brain barrier to get metals out of the brain! The best part – it’s rates a zero on the toxicity scale. So, it’s very safe.

So my son who is ultra sensitive to everything…like put sunscreen on him one day and he’s in meltdown for 2 days, has been on OSR for 4 weeks. The last week got a bit bumpy and he started overreacting (aka meltdown) to things like big brother looking at him cross-eyed, so we took him off the OSR to give his body a break for a week or two before he goes back on it.

A recap of our first month on OSR.
 I didn’t notice any remarkable differences nothing changed from one day to the next. There was no WOW experience…until we got to the end of the month and I looked back. This month he progressed very quickly in his speech and cognition, and evened out in his behavior/emotional reactions significantly. So much so that I’m able to tell others that he’s a normal 2 1/2 year old now (excepting his diet, of course)!!! This month he arrived at his age appropriate level of speech and was “kicked out” of speech therapy!

One week the speech therapist was here and said he didn’t need to continue anymore, because he was basically age-appropriate except for 3 things that he should be added soon at this age, but that most kids struggle with a little more:  1) “I” to his vocabulary 2) something else, I forget what it was 3) colors (but that often they can take substantially longer before they are incorporated in vocabulary). His case manager was here the next week and mentioned the great news as well as the slight concern of the speech therapist and I was like, oh, ya, he’s has 2 of those 3 things now. He uses “I” regularly and appropriately, and whatever the other category of speech was he was all caught up on too. So, the only thing he doesn’t have yet is colors and I’m not worried about that, it’ll come when he’s good and ready…he doesn’t seem to care about colors just yet. It was fun to see those things added so quickly and so thoroughly! One week those things were lacking, the very next week they were so incorporated into his vocabulary I had forgotten they were new!

As far as his behavior and meltdowns, we can pretty much go anywhere and do anything. It’s fun to be out of the house and visiting parks, playgrounds, stores, or the zoo. All things that were unthinkable until the last several months. And now he’s off and running, discovering, and investigating – and running back to tell me about it or drag me over to see it!!!

He’s a normal 2 1/2 year old – with the exception of his diet, supplements, and supersonic hearing. He still has aways to go in his body being fully healed, but he’s getting there slowly but surely and the OSR is speeding him along that path!

Today was Day #2 off of OSR and WOW what a difference this morning. I had an appointment this morning and when I returned (this is important because he’s not much of a morning person, so he had time to wake up while I was out) he would not stop talking! He wanted to tell me about everything I had missed while I was away, ask me about everything – I had stopped at the store on the way home and he wanted to know what EVERYTHING was. A few months ago when the talking was so rare, I never thought I’d tire of his talking, and him being curious and desiring to learn is still a little bit new, and exhilarating. For the barest moment I started to bristle, all that nonstop talking – I was trying to put the groceries away and he was underfoot, pointing to things, asking me about everything, wanting to tell me about his morning, etc – anyway, the moment I started to bristle, I smiled and had the purest most wonderful joy. He was talking – nonstop (except for when patiently awaiting an answer to his question “What’s that?”)! Ten months ago he could not point to something he wanted much less say mama or dada. His only way to communicate was a scream and I had to figure out what it meant. Ten months, and here I am conversing with him – unbelievable. Miraculous. God’s incredible… 1) To choose to bless me this way, the gift of truly being able to know my son, sharing life with him and he with me  2) The healing He has brought to this little one’s brain and body. Yes, I started to bristle, then smiled, slowed down, and wonderfully soaked up the joy of conversing with my 2 year old and helping him learn about the curiosities of the world around him!

Friday, August 21, 2009

Jordan Graduated!!!

As of Thursday, Jordan has been kicked out of speech therapy…he has caught up to his age-appropriate level!!! Wahoo!!!

Tuesday, August 11, 2009

Absence & Jordan's Healing from Autism Update

It’s been awhile since I’ve written, so thought I’d better fill you in for those of you who read this regularly.

The absence of my presence here…we were traveling for 5 weeks AND I became a CNHP (Certified Natural Health Professional) so I was doing lots of studying and no writing. The trip was great! The courses, instruction and studying were phenominal! I’m definately on information overload, but I also learned I’m totally on the right track with Jordan and his health stuff and there’s also so much deeper that I can go! And, I can start helping the rest of the family with their (and my) health issues too.

For the update on Jordan…we are doing GREAT. Jordan is improving so much it’s unbelievable. He basically acts like a normal 2 year old. He is still a little behind on his speech and maybe slightly on some of his cognitive understanding and and has some quirks like some OCD (obsessive compulsive) behaviors and certain things that he just can’t handle (like a car being off the ground), and he still has supersonic hearing, but all in all he is doing superb. He even has put on weight and filled out a little and he grew over a 3/4 of an inch in the last 5 weeks. Occasionally, I have to remind him he can use words instead of scream, but as soon as I remind him (mid-blood curdling scream), he immediately stops screaming and says, “Oh” in the most calm natural voice and proceeds to repeat whatever I’ve reminded him to say. It’s absolutely adorable. Of course I say something like, “Jordan, you don’t need to scream, just say, ‘Please, may I have juice’.” And he says, “Oh” (pause) ”Pease haf jus.” It’s like he’s so used to screaming to communicate, every so often he forgets he can say the words now. It’s great. A simple reminder and all is calm and well. He is mostly smiles and happiness and is really just enjoying life. What a dramatic change!

That’s all for now. Thanks for keeping up!

Wednesday, July 1, 2009

Living With Food Allergies & Autism: Does Anyone Understand?

…When every moment seems an eternity and with every scream of pain it feels like your heart is being ripped from your chest and it happens again, and again, and again, and again, and again for moments, minutes, hours, days, nights, and months (even years) on end…

I know there are those of you who follow this blog for our personal news of Jordan, but this post is for those moms (and dads) out there who live with Food Allergies or Autism Spectrum Disorders everyday. I’m going to be real, so those of you who don’t live with this, if you read it, please don’t be offended, but instead, try to get a glimpse inside life with a child with these issues and see how you might help those who live with it daily.

I know for me there was one friend who stopped and listened – for hours. And although it was only the one time that we got to talk, to have someone stop, listen, truly understand and enter my world as best they could, not brush it off flippantly, or uncomfortably move on to a less loaded subject meant the world to me and it was so good for me to just be able to share the load with someone and to be understood.

Tonight a friend of mine mentioned a friend of hers who is struggling with dealing with everything involved in having a child on the Autism Spectrum and feeling like no one understands. Although, my friend readily admitted she doesn’t understand, I immediately thought, “I’ve been there, and nobody does understand.” I felt so very alone for so long and things were so bad I didn’t feel like I could share with anyone 1. because they couldn’t understand anyway and what I had to say would seem rather dramatic, unbelievable, and quite possibly sound exaggerated (though actually would probably be understated) 2. it felt like I’d would just be compaining, whining and have an ”oh poor me” complex and 3. because if I did start to share, I wasn’t sure I’d ever stop, there was so much pain inside. And for me, I didn’t know it was Autism or anything related to it, so I’d say my child was allergic to food and had developmental delays and people just didn’t get the gravity of it. Once I learned that what we were dealing with was related to Autism, when I’d mention that to people, they’d say, “Oh, you think so? No, I don’t think so. He doesn’t seem that bad.” What they didn’t know what how many months I’d been working on things and how good he was finally doing (comparatively), and how I structured his day and our lives for an entire week so that we could have those few hours of decent behavior when they saw him.

The doctors had no answers and offered no help, direction, or hope and didn’t even seem to take me seriously. We live over 1100 miles away from any family or friends (we moved right after he was born). People didn’t get that him having food allergies (allergic to all food) meant that our diet was extremely complicated. I had to become doctor, nutritionist, cook (everything from scratch with ingredients I’d never heard of – 3 meals and 2 snacks/day), and researcher (to learn all this stuff and figure out how to help my child – and by help, I mean keep him from dying, since he was allergic to all food and I knew nursing him just wouldn’t cut it for the rest of his life) in addition to caregiver and normal mom stuff for him and my older son.

People didn’t get that having food allergies meant that he was vomiting; in constant pain which meant constant around the clock screaming, crying or fussing and would often bash his head into hard things like ceramic tile because of it (I’ve described this as sounding like someone dropping a bowling ball onto concrete) but he would just keep going repeatedly bashing his head and I couldn’t stop him no matter how many hundred times I’d pick him up to stop him, he’d go right back - he commonly had a bruised forehead; his bottom was often covered in a rash and he had anal fissures; he would writhe and thrash in pain so much that I couldn’t hold onto him. When he wasn’t writhing, thrashing, or bashing his head, he wanted to be held constantly. And by “wanted” I mean he demanded it – out of fear and pain. If I had to put him down, he would scream and cry endlessly until I picked him up again (even if it was hours) – I arranged my entire kitchen so I could cook and do everything one-handed. Holding him didn’t always mean that the crying would stop. Often, he would “ask” aka scream to be held, I’d pick him up and hold him, he would continue crying and whimpering while squirming so much I’d nearly drop him, so I’d set him down, he’d scream louder, I’d pick him up, he’d curl into a tight ball in my lap still whimpering, but after a few seconds would start squirming and writhing  and work his way down onto the floor, only to scream louder flop around miserably when he got there, and I’d pick him up…and repeat and repeat and repeat until I just wanted to scream for the sheer frustration of it, but then I’d think of how he was feeling and just want to cry, and sometimes I did.

He was miserable, never happy or content, and I felt his misery keenly. I knew he was in pain and couldn’t bear to make him go through it alone. I knew I couldn’t take his pain away, but I could hold him, soothe him, just be there for him providing security, love, and comfort to some degree just by my presence. Some nights (and days for that matter), I just sat there holding him and cried with him. Sometimes because I felt so bad for him and the pain he was in. Sometimes because I was so completely exhausted physically and emotionally. Sometimes because it seemed so hopeless and I didn’t know if it would ever end. Sometimes because I couldn’t stand his crying anymore, but knew he was in tremendous pain and I just couldn’t leave him to deal with it by himself or get angry at him for it, it wasn’t his fault, so I’d just cry with him. I did everything in my power to minimize his pain. I researched endlessly to learn about allergies and about their causes so I could work toward his healing, and I paid extremely close attention to my diet, since he was (and still is) nursing, (and later to his diet as well) and strictly kept out anything he was sensitive to through me. In the few hours that he would sleep at night, between wakings, I would either crash and sleep myself, or stay up – sometimes all night - and research.

In the midst of this we couldn’t leave the house – he couldn’t handle it and I had to cook 3 meals and 2 snacks per day (one-handed) anyway (and nurse him every 3-4 hours), hard to get out between those. We couldn’t socialize and make friends in the new area we’d moved to. Socialization most often revolves around food, and we couldn’t eat anything normal people eat. He was usually crying and fussing anyway, which isn’t the most fun to be around and trying to make conversation over that doesn’t work real well. Not to mention that it’s rather embarrassing and it can easily look like you have no control over your child and simply do not discipline at all. For the first 18 months, I didn’t know it was related to Autism at all, so I didn’t even have that as a way of quickly letting people know that he has some “issues”.

So, when someone says, “No one understands”. I know exactly where they are coming from. It’s the cumulative effect that really carries the heaping burden. A year and a half of severe sleep deprivation, no breaks (I couldn’t leave him for more than 2 hours at a time due to nursing) so even slipping out in the evening once my husband was home was difficult to impossible – I only did that once a month or so to get groceries and read all those ingredient lists. And the weight of the responsibility of caring for him plus trying to solve all the medical issues involved were tremendous, not to mention the occasional thoughts of what the long term future would hold for him (and us), if he didn’t get better.  Anne from Anne of Green Gables claimed to be in the “depths of despair” and I could relate. Words can’t begin to describe the depth, difficulty, and pain of it and the issues are so multi-faceted that even if it could be put into words, it would take hours just to communicate it to someone, should someone actually want to listen, should I actually be able to get away to talk. It is so extremely isolating and lonely and I felt like I was battling the world in order to save my son.

Now, I’ve rounded the bend and am on the hopeful stretch, knowing the medical issues involved, knowing the process of treatment and that there is an entire array of possibilities, knowing if one doesn’t work there are many other options, seeing improvements in Jordan, sleeping through the night – no longer chronically sleep deprived (at least, no more than any other mom), able to get out of the house and make some friends and now occationally meet up with friends I’ve made. Able to take the boys out during the day to a store or a park. It’s nice. It’s grand. The sheer joy of normality (or near normality) is pure ecstasy and I marvel at it and thank God for it on a daily basis.

A few months ago, as I was just entering this hopeful stretch, I was pondering my time in the depths of despair and wondering about my being so low. I thought, hmm, if I’d just been able to keep an eternal perspective that “this too shall pass” that, “…we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.” If I’d just been able to do that, then it would have made it so much better. But to be quite honest with myself, my next thoughts were, but this wasn’t really possible, ” renewed day by day? I’d hardly had a renewing moment since his birth. Every day I got more drained than the one before. Light and momentary… yes, I’m sure in view of eternity. But, it doesn’t seem it. It seems impossible to keep an eternal perspective when living in this. This verse seems like a lie.  When every moment seems an eternity and with every painful scream it feels like your heart is being ripped from your chest and it happens again, and again, and again, and again, and again for moments, minutes, hours, days, nights, months, and years on end. Each moment an eternity in itself.  No, no one understands who hasn’t been there. And when you are there, with all the screaming, thrashing, tantrums, frustrations, desperation, every moment of every day (and often every night), you don’t have time to stop, refocus, and gain eternal perspective. It all presses in too hard, too fast, constantly without pause.

So, forget eternal perspective as far as time, I had to take it hour by hour, often minute by minute – and each one seemed an eternity in itself. I had to focus on a God who is good and who loves me – and my child. I had to remember that even as I was cradling my baby in my arms, He had me in His arms, “He tends his flock like a shepherd: He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young” – Isaiah 40:11 and Isaiah 41:13 “For I am the LORD, your God, who takes hold of your right hand and says to you, Do not fear; I will help you.” Not that I had time to actually read these verses, but I knew them and could focus on the idea of them. And when it all got to be too much and physically my body broke down and quit on me, I prayed for “Jesus with skin on.”  Praying and trusting Him is great and necessary, don’t get me wrong, but when your body gives up and you simply cannot press on any further, you need help in the form of people and you need rest - and God provided both.

Friday, June 19, 2009

Healing Allergies & Autism - Liver Support

 Jordan and hair sticking up_edited-1

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 greatly 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. 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 important to do before chelation. It’s not wise to start pulling metals out of the tissues until the body can efficiently eliminate them! BioRay claims 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. BioRay claims it is all natural. It appears 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.

Friday, June 5, 2009

Is It Autism? Diagnosing Autism vs. Food Allergies

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 - delays (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.

Wednesday, June 3, 2009

The Relationship Between Food Allergies & Autism

If a child is on the autism spectrum of disorders, they have food allergies. Period. The two go together. It doesn’t necessarily go the other way, obviously – the presence of allergies certainly doesn’t mean there is a developmental delay present. For general developmental delays, and even in some cases of Autism, the question is, “Do the allergies cause the developmental problem, or are the allergies just a co-existing problem?” In some cases, food allergies, or sensitivities, can cause the developmental delay. The body’s reaction to foods can so affect the child’s development, ability of the brain to function, and nervous system that it can actually cause the developmental delay.

However, in other cases, it may be a co-existing factor manifesting from the improperly operating (and overloaded) immune system and other underlying physical factors (toxic overload, yeast overgrowth, leaky gut, heavy metals, poorly functioning detoxification pathways) that are also causing the developmental delay and/or autism. Allergies stem from the same causes that autism, ADD/ADHD, and asthma stem from, so either way, the underlying factors are critical whether you want to heal from autism or only from allergies.

Although having food allergies or sensitivities is common in infants and their still very immature immune system easily gets overwhelmed, it is possible that as their immune system develops as they get older, they will “outgrow” the food allergy. However, taking every measure to support their immune system and not further overwhelm it with additional toxins is a very wise idea. A few common signs of food allergies/sensitivities, especially in babies, are reflux, projectile vomiting, crying for hours (colicy), raspy breathing, recurring ear infections, diarrhea and/or constipation, changes in poop color particularly to green, and eczema and rashes.

Something to be aware of – if you are finding your child has food allergies or sensitivities to many different things, be on the look out for developmental delays. It’s a sign that the child has many toxins in their system, aren’t clearing them out at an adequate rate, and their immune system is overloaded.  

So it’s kind of a, “Which came first, the chicken or the egg?” question. Do allergies cause developmental delay or is it part of the autism or delay itself? Either way, the food allergies cause great irritation to the body and interfere with brain development and function and will hinder any therapies or treatment toward the healing of autism or developmental delay if they are not discovered and dealt with.

Tuesday, May 26, 2009

Down the Hatch: Getting Supplements into Toddlers

Lately I’ve seen several questions on getting supplements and medicines into kids.  So I thought I’d share a few tips that work for us. I find that depending on the supplement, I may have to experiment with different ways to get it in him.

For some capsules like enzymes, L-Glutamine and S. Boulardii I open the capsule and mix it with 100% grape juice or V8 Fusion Blueberry/Pomegranate. I find the grape or blueberry do a pretty good job of disguising the flavor of the supplements. (I can’t let him see me do this though, or he’ll refuse it, and it has to be shaken good so that is mixed in and he can’t see white specks floating in it!)

With digestive enzymes, sometimes I sprinkle it onto his food and mix it in after it has cooled.

For a supplement that has a strong smell kind of like cumin type. It is a capsule as well, so I open it and mix it with a couple spoonfuls of salsa or pizza sauce. Some days this works better than others and I tried mixing another supplement in with this once and that ruined it for awhile and he refused it completely for a few weeks.

Cod Liver Oil - I use an oral syringe like the ones that come in infant ibuprofen. Nordic Naturals comes in different flavors. Jordan does great with strawberry, but my older son does much better with lemon. (Fortunately he does great with this. I try to protect this and only give him things he is okay with this way so he doesn’t start refusing it.) 

Hemp protein I mix into blueberry coconut milk smoothies that I make him.

Probiotic powder will mix into about anything and he’ll accept it, and the chewable tablet form he LOVES. He asks for those like they are candy and thinks it’s a treat whenever he gets one! Same thing with his chewable multivitamin. Some things I dissolve in the juice and then freeze into popsicles for variety.

So those are my ideas, if you have any you wish to add, please do! We can always use more ideas.

Saturday, May 23, 2009

A New Experience for an Autism Mom

Jordan on his new-to-him bed, that he still hasn't slept in.
Jordan on his new-to-him bed that he still hasn't slept on

Yesterday Jordan climbed up on my lap, sat up straight, looked up at me and smiled, looked around the room, at his dad and brother, and grinned at me again. I was talking with my husband, smiled down at Jordan, and kept talking with Jonathan. I kept looking between Jordan and Jonathan as I talked. Jordan just sat there, content as could be smiling and looking around. Something seemed odd to me, but I was talking and didn’t stop to think about it or really even notice, it was just a vague feeling – something was odd. Then it hit me. Jordan, was sitting on my lap – nothing new there, he’s clung to me for dear life for 2 years. That’s what was odd – he wasn’t clinging. He wasn’t fearful. He wasn’t in pain. He wasn’t sullen. He didn’t NEED me. He was just enjoying being near me. He wasn’t demanding anything of me – no attention or comfort or desperation. Just sitting on my leg while I talked with my husband. Could this be my boy? What a change! This was a first. He’s 26 months old. First time he’s been happy to be near me, but not needed me. Relaxed. No tension. No crisis. Not dependent. That’s new. That’s exciting. That’s a relief.  Of course, we won’t experience this everyday. But getting to experience it once was great and gives us hope for the future, that it will happen again, and more frequently.

Thursday, May 14, 2009

One New Case of Autism Diagnosed Every 20 Minutes

My Dad called a couple of mornings ago to say he saw a billboard saying that one new case of autism is diagnosed every 20 minutes. I googled to find the statistic and came across this great article, recently published by Greenwich Time in Greenwich, CT, summarizing many of the conflicts surrounding autism and the blocks to awareness and treatment. Thanks, Dad!

Drug companies abuse power by quashing evidence linking vaccines to autism

 By Nicole Crosby
 Posted: 04/29/2009 05:21:18 PM EDT

 It’s day 30 of Autism Awareness Month, which means 2,160 new cases of autism were added this month — one every 20 minutes. At a cost of $3 million per child, the bill for this epidemic — $90 billion per year — will hit every pocketbook and every school budget. Hard.

And yet, the Centers for Disease Control deny an autism epidemic exists. Polio was considered epidemic when the numbers reached 1 in 3,000, but not so for autism, which now affects 1 in 150 — a 100-fold increase in 30 years. The Department of Education puts the autism rate even higher: 1 in 67. Somali Immigrants in Minnesota who didn’t even have a word for “autism” in their country are seeing an astonishing 1 in 28 autism rate in their children. Yet the CDC and the American Academy of Pediatrics claim “better diagnosis” explains the increase in autism cases. If so, then in 1992, 93 percent of kids with autism were missed. That’s how many more children are receiving services for autism in schools today.

Immunization link

The increase in autism cases coincides with the CDC’s recommended immunization schedule, which jumped from 10 vaccines in the 1970s to 36 vaccines today. A new study reveals our children are the most vaccinated on the planet, receiving double the number of vaccines of 30 other First World countries. Thousands of parents have described their children regressing after vaccines.
Of even greater concern, a peak in Sudden Infant Death Syndrome coincides with immunizations;
the U.S. has one of the highest infant mortality rates of all industrialized nations. The five countries (of those 30) with the lowest infant mortality rates give less than one-third the number of vaccines the U.S. mandates, and their autism rates are as little as one-tenth of ours.The AAP staunchly maintains no proof of a link exists between vaccines and autism, and calls its occurrence after vaccination “coincidental.” But many peer-reviewed studies demonstrate the link, none of which are published in the journal Pediatrics, which earns 80 percent of its advertising revenues from vaccine makers.

Studies have also associated vaccines with diabetes, allergies, chronic ear infections, learning disabilities, ADD and other neurological and immunological disorders. Former National Institutes of Health Director Dr. Bernadine Healy noted a study that found delaying the DTP vaccine by just a few months decreased by 50 percent the risk that a child develops asthma. Healy added that parents can legitimately question giving a one-day-old baby the Hepatitis B vaccine, calling it “a heavy duty vaccine” even at two or four months.

Kept quiet

Our national media (including Public Radio) receive billions of dollars in pharmaceutical sponsorship and advertising, and are generally uncritical of the vaccine program. When three cases out of 5,000 claiming a vaccine/autism link were defeated in “vaccine court,” headlines around the country proclaimed, “Vaccines proven to not cause autism.” But when a large award was recently made to the Banks family, who won their case and proved vaccines caused their son’s autism, the media ignored the story.

The CDC tells us one in six children has a neurological disability, but provides no explanation as to why. Shots for minor childhood diseases such as chicken pox and rotovirus (diarrhea) may be the breaking point for a generation of children with disabilities. Babies receive immunizations for as many as nine diseases in a day, but the CDC has never conducted safety studies for the administration of multiple vaccines; they’re only studied one at a time.

Other factors

Why is the incidence of neurological disorders so much higher for boys than for girls? It’s hypothesized that males are more susceptible to neurotoxicity of vaccine ingredients due to hormonal differences; estrogen is protective against toxins while testosterone increases their effects. Several studies have proven this hypothesis, but the CDC and AAP do not acknowledge them nor do they offer an explanation for the far greater prevalence of these disorders among boys than girls. For the medical industry, there appears to be no turning back from a position of total defense of vaccines. Professional reputations and billions of dollars in vaccine revenue are at stake.

Certain conditions may predispose children to autism and other neurological disorders. In addition to gender, factors such as an underlying mitochondrial disorder, low glutathione levels (both testable), illness at the time of shots, and a family history of immunological or psychological disorders have been associated with an increased incidence of autism. (Research also shows that acetaminophen — often recommended after shots — suppresses glutathione levels, impeding detoxification of vaccine ingredients such as mercury and aluminum.) Screening for possible risk factors is not part of the current one-size-fits-all vaccine protocol.

Acceptable mercury?

Mercury in the vaccine preservative thimerosal is another point of controversy. While thimerosal was being phased out of childhood vaccines, the CDC began adding it back in by recommending the flu shot for pregnant women and children, every year up to age 18. Most flu shots contain 25 mcgs of ethylmercury — a neurotoxin that has an affinity for the fetus and the brain. When five pediatric practices were contacted in Greenwich, it was learned that three administered the flu shot with the full load of thimerosal. One practice stated that a “thimerosal-free” shot (which actually contains trace levels of mercury) had been available, but only for children whose parents requested it.

Our own Greenwich Health Department was cautious enough to stock only the thimerosal-free flu shots for adults. Why are the developing brains of Greenwich’s youngest citizens being exposed to 25 mcgs of ethylmercury while adults who obtain flu shots from the town are protected from mercury — the most toxic non-radioactive element on earth? And why are the .5 mcg of mercury in “thimerosal-free” vaccines considered acceptable? (Would pediatricians inject .5 mcg of lead into a patient?)
Not even our dogs and cats receive thimerosal in vaccines; for them, it was removed in 1992. When too many vaccines overwhelm our pets’ immune systems, it’s called vaccinosis. There is no such diagnosis in humans.

In 1991, additional thimerosal-containing vaccines were licensed for children in spite of a memo sent by vaccine inventor Dr. Maurice Hilleman to Merck executives, informing them that infants might be exposed to unsafe levels of mercury. The memo, however, was never acted upon.

Dr. Frank Engly, a researcher who served on the CDC, FDA and EPA during the ’70s and ’80s, said, “The CDC cannot afford to admit thimerosal is toxic because they have been promoting it for several years “¦ If they would have followed through with our 1982 report, vaccines would have been freed of thimerosal and all this autism as they tell me would not have occurred. But as it is, it all occurred.”

Money talks

A recent report on CBS’ “60 Minutes” revealed that, “Congressmen are outnumbered 2 to 1 by lobbyists for the pharmaceutical industry that spends roughly $100 million a year in campaign contributions and lobbying expenses to protect its profits “¦ In fact, there have been over 1,500 bills placed in front of the House of Representatives over the last eight years dealing with pharmaceutical issues — and the drug companies, almost without exception, have gotten what they wanted.” Pharmaceutical executives are also allowed to sit on CDC advisory boards where vaccine recommendations are determined.

The government assures us vaccines are safe while paying nearly $2 billion to parents of children who have died or been harmed by them. Vaccine cases were removed from civil courts in 1988 due to crippling litigation against vaccine makers. Just as the tobacco companies’ 23 studies once “proved” no link between smoking and lung cancer, so the vaccine makers now claim 14 studies “prove” vaccines are safe. Decades passed before the tobacco/cancer link was finally accepted, and decades have already passed since autism was first linked to vaccines.

Other environmental triggers may play a role in the autism epidemic, including proximity to coal-burning plants which emit mercury, and maternal exposure to mercury from fish consumption and dental amalgams. In June, the FDA did an about-face on amalgams (which are 50 percent mercury), stating that they “may have neurotoxic effects on the nervous systems of developing children and fetus.” (It is not advised that amalgams be removed during pregnancy or while nursing.)

Today marks the last day of Autism Awareness Month, but tomorrow begins a new month in the autism epidemic.

For legislative information, go to http://autismactioncoalition.org/.
For an alternate vaccine schedule, http://generationrescue.org/vaccines.html.
To see cases in which autism was not “lifelong and irreversible,” http://vimeo.com/3443801.
Biomedical treatments can be found at http://www.autism.com.
For a summary of flaws in the 14 studies frequently cited as proving vaccines are safe, visit fourteenstudies.org. To view studies linking vaccines to autism, click on “Our Studies.”
View CBS News coverage that details how authorities are avoiding studying children who may be susceptible to vaccine harm: http://tinyurl.com/59wns7.
Google: “RFK Deadly Immunity” to read Robert F. Kennedy Jr.’s description of collusion between government and the vaccine industry.

Wednesday, May 13, 2009

Is It Worth It? Healing Allergies & Autism is a Daily Battle!

blueberry mustache-1My dad and brother both were amazed at Jordan. Dad went on and on about how Jordan would run up to him and look him straight in the eye as he was running around playing and how he repeatedly did that and kept coming back and “checking” and to see what Dad was up to, where he was, etc. Haahum, Grandpa is known to be playful and to be there one minute and hiding around the corner waiting to startle you as you come looking for him the next minute! Dad talked about how you could look into Jordan’s eyes and see him thinking and processing everything, but instantaneously, no pausing needing to think about it or work to figure things out. Just looking at one thing, got it, and on to the next, no pause, no confusion, just alert understanding. It only took Jordan a couple minutes to warm up to him when they arrived – it used to take a couple of days, and even then he would be reserved, shy, fearful, look at his cousins out of the corner of his eye and he certainly still wanted, “Mommmyyyyyyy.” Not anymore! Jordan was all about playing with his Grandpa, uncle and cousins, no reservation, no fear – Mommy, where was she anyway? Who knows? Who cares? We have a very playful, silly, loving Grandpa visiting!

Some days I wonder, “Is it worth it?” It seems like everyday I wake up to do battle. A battle for the well-being of my son. Every meal, every snack, every grocery trip, specialty food stores, supplements, vitamins, everytime I clean or wash something I work to keep things as toxin free as possible and the food allergen free, nutritious, and healing  snacks and meals – and that means from scratch with unusual ingredients! And that’s routine, then there are the other battles – the insurance company (they still haven’t paid a penny for his treatments, even mainstream allergy and GI issue treatment), the doctors, friends and society and the perception of what we are doing. Many who think I’m wrong. Battling to find or create a treatment plan that will work for him. Most days it feels like uncharted territory and for us to discover it is the only way to move forward.

The sacrifice of a social life and friends. We don’t often get together with others. Food is usually involved. Most people don’t get excited about dairy free, yeast free, gluten free, color free…do I really need to keep going? And, well, I’ve lived in a cave for 2 years – a cave called allergies, developmental delay, autism, toxins, neurotoxicity, nutrition, health, and recovery. My every waking moment dedicated to the care of my boys and research. Not exactly uplifting topics for casual conversation.  Yet, I don’t have much else to talk about. I can listen. But, I nearly go insane as I listen to new mothers go on and on about how awful their life is with their colicky 6 week old baby and how they can’t sleep through the night and they are so exhausted. Yet, who don’t want any real help – just a pill to cure it.

I’ve become a conspiracy theory person (the kind I use to look at cross-eyed because I thought they were crazy, yup, that’s me now)- Big Pharma (the pharmaceutical companies) having the power to control gov’t, the CDC (Centers for Disease Control) vaccine recommendations, the AAP (American Academy of Pediatrics) who still won’t acknowledge that Autism is treatable, and the FDA (Food and Drug Administration) and what they do or don’t approve as safe, and of course the media. Yes, I’ve completely lost my trust in much of the information from these sources. Yet, this is who everyone else listens to so I feel like it’s a battle against all of them (gov’t, it’s agencies, media, pharma, mainstream medicine) plus against all of the misinformation everyone else around me believes from them and hits me with (as if I haven’t heard it and looked into it already). I try to look at these as educational opportunities the problems is – who would you believe? A mom with a kid with developmental problems or the CDC, AAP, FDA, the media, and your doctor? I know who I used to believe and lets just say, I thought the mom was craaazy. So, most people don’t really want to be educated. They like their comfortable bubble with their misinformation. Who can blame them. I’m exhausted fighting this fight and if it wasn’t absolutely necessary, if I had had any other option, I would have taken it. My options were let my child starve, feed him foods he was allergic to and watch him vomit, scream, writhe in pain, and not develop mentally, or find another way – one nobody knew about. But since I didn’t have any other option  I stand and I fight not just for my son but for all those who currently have other options (reflux meds, ear tubes, nebulizers, allergy meds, seizure meds, speech therapy, occupational therapy, physical therapy, etc) and keep trying to take them, but many of their kids aren’t getting better – for the few who will seek other solutions, I fight.

Is it worth it? So often, I just get tired. Just plain tired. But also tired of fighting the system and seemingly everyone and everything (except my husband, of course – he’s an incredible warrior too!). Some days I just want to give up and give in – let’s go to McD’s and get chicken nuggets, fries, and some fruit punch!  Let’s stop on a great summer day and get an ice cream cone! Ah, the relief not to have to pack all meals and snacks ahead of time, to stop and get a treat that wasn’t specially planned for, prepared, and saved for the occation.

My family visited a week ago – my parents and my brother and his family. The last time we had seen them (except Mom, she was down for a visit in between) was for one week around the 1st of January, so it has been just over 4 months. Other than the diet, which we have done all along, we started his new treatments in December - cranial sacral, supplementation, and a little detox (started in April).
My brother noticed the difference in Jordan too. He commented that it seemed like Jordan had grown a year’s worth in the 4 months since they had seen him last! Ahhh, all words that do a warring mommy’s heart good – and I have to agree with his assessment. Jordan does seem like a 2 year old now.

Is it worth it? Oh to stop and enjoy that summer ice cream cone or see cookie crumbles on the edges of his mouth :)  But, then I remember where we’ve been and how far he has come, and the blueberry coconut milk smoothie mustache – made at home (with some supplements added in it too) - is just great!

Tuesday, May 12, 2009

The Best Non-Dairy Milkshake!

Jordan's first "milkshake". He loved it!
Jordan's 1st "milkshake". He loved it!
I came up with this after not having dairy for 2 years and longing for a milkshake that actually tasted like a milkshake. They are healthy too, so they’re not only guilt-free, but good for you! My husband even endorses them – and he hasn’t been dairy-free! Have I mentioned I love my new Vita-Mix!!

1 C. Hemp Milk
1 C. Almond Milk (or water)
1 Banana (can be frozen)
2 tsp. Vanilla
3 pks Stevia
1-2 Tbs. Agave Nectar or Honey

2 C. Ice Approximately (to thicken to desired consistency – around 2 Cups, give or take. Add slowly after mixing the rest. For Vita Mix users – use tamper to get it thick enough and smooth all the ice.)

Friday, May 8, 2009

Causes of Allergies & Autism

One of the most frustrating things about the disorders on the Autism Spectrum (anything from ADD, asthma, allergies, sensory integration disorder, pervasive developmental disorder,  to severe autism) is that most all medical information declares that there is no known cause. In regards strictly to Autism, the medical community forcefully says that it is not caused by vaccines (of course the research is paid for by the pharmaceutical companies who want to sell millions of their vaccines), they spend lots of money researching genetics, but all in all, they say they do not know what causes it. Yes, genetics is a cause, but only in about 5% of cases. Well, what about the other 95%? This 95% is why the prevalence of it has exploded to epidemic proportions in recent years. It’s the same reason why allergies and sensory disorders are exploding too.

A few statistics on Autism:

  • 1 in 150 children in the US now have Autism
  • 4:1 ratio of boys to girls
  • 1 in 94 boys in the US have Autism
  • Fastest growing developmental disability
  • More children will be diagnosed with autism this year than cancer, diabetes, Down’s Syndrome and AIDS combined
  • $100 Billion annual costs
  • In 10 years the annual costs are projected at 200-400 billion.
  • Cost of lifelong care can be reduced by 2/3rds with early intervention
  • A family with a child with autism will fund 3 to 5 million dollars of services throughout the lifetime of the child
  • Autism receives less than 5% of the research funding of most of the more prevalent childhood disorders
  • Approximately 1 million individuals in the US have autism
(From Generation Rescue)
Those are the currently published statistics, and some of those numbers, like the 1:150, are old. The ratio is dropping, and it’s dropping fast.

There are many causes. The contributing factors are different for each child (or at least the 95% of them that isn’t not genetic). But, they all come back to the same thing – toxic overload. Here are the pieces of Jordan’s puzzle that caused his allergies and PDD (pervasive developmental disorder). At least these are the pieces I’ve figured out so far, I could very well find out more in the future. In chronological order (not order of gravity of contribution to his problem).

Aluminum & Other Metals (heavy metal toxicity) 
Before I knew I was pregnant, I was having horrible abdominal pain every evening and through the night. I figured out it was trapped gas and started taking antacids like crazy. Guess what? Most antacids contain aluminum. Guess what? I was pregnant with Jordan, less than 10 weeks along (but didn’t know it). The metals had free access to every developing cell of his body, including his brain. We’ve all heard about the dangers of lead poisoning, the scares of lead paint, etc. Same thing, aluminum and other metals just don’t get as much media attention.

Oh, and have you heard there's things like mercury and aluminum in vaccines (which he had day 1 of life)! 
Yeast Overgrowth 
During pregnancy I had several bouts with yeast infections. This indicated that I had poor gut bacteria and overgrowth of yeast, but I didn’t know that then and only treated the local yeast infection. During the birth process, the baby’s digestive tract is colonized with the gut bacteria from the mother. And, while breastfeeding the baby’s gut bacteria closely resembles the mother’s. Yeast overgrowthin the gut, unchecked, can lead to leaky gut syndrome. With holes in the gut, partially digested foods, proteins particularly (peptides), can enter the bloodstream. These peptides are not recognized by the immune system as food, but resemble foreign invaders such as bacteria or virus. The immune system attacks and you have food allergies. Also these peptides can reach the brain and act as opiates, contributing to some autistic symptoms – how would you act if you were high all the time? Allergies also cause inflammation throughout the body = lots of problems.

This one is huge. A MAJOR contributing causal factor!

Stress & Poor Nutrition 
 During the pregnancy we moved and were living with family and in-laws alternately. Very stressful, poor eating habits. Also, the birth of my first child involved some difficulties which resulted in 11 months before I could sit down without pain. To say the least, I was stressed about giving birth again. Stress = raised cortisol levels. Raised cortisol levels during pregnancy, especially the 3rd trimester, not good. 

Hepatitis B Vaccine & Others 
Day one of life Jordan had the hepatitis B vaccine. Guess what is in the hepatitis B vaccine? Aluminum! The known toxic dose of aluminum for a baby is 20 micrograms. The amount in the Hep B vaccine? 250 micrograms! At 2 months he was fully vaccinated with the recommended vaccines. The aluminum content? 1,875 micrograms! (from Dr. Robert Sears who gathered the data from the FDA’s data and web site). I know he has issues with other heavy metals too, it’s just not as obvious how he might have gotten them (although they are in the air, water, food, vaccines, etc) Heavy metals also cause yeast overgrowth problems and yeast actually bind onto the metals. So, until you get rid of the metals, you won’t completely get rid of the yeast problems. Metals also cause allergy problems. Also in vaccines: formaldehyde, antifreeze, arsenic.  Obviously, not good things to put in a baby already struggling with so much junk in him. These early vaccines (Hep B on day 1 of life) can also cause an inflammed gut with a result similar to yeast overgrowth were proteins can cross into the blood, resulting in allergies. They also can overload the immune system creating an overactive Th2 response and underactive Th1 response.

This one is also HUGE, another major causal factor! 

Environmental Toxins 
We’re surrounded by toxins in our air, water, cleaners, personal care products, food (pesticides, metals, chemicals, excitotoxins), perfumes, air fresheners, etc. With all the other toxins in his body, his little system quickly became overwhelmed and couldn’t clean the junk out like most of us are able to and so it just kept accumulating, wrecking havoc with normal body and brain functions.
So far, those are the pieces of our puzzle. Maybe we’ll find more, maybe not. Everyone’s puzzle will be different. But I’m satisfied that I have a good enough grasp of the causes to know the target for healing.

Saturday, April 25, 2009

Enter Dr. P - A New Doctor for Recovery from Autism & Allergies

Jordan's typical expression.
We’ve been waiting for a consultation with a new doctor in Pittsburgh. Well, we had that consultation yesterday – we got moved up on a cancellation! Before I jump into that news, I’ll review. 

I pursued a new doctor to check into alternatives to the protocol Dr. K had Jordan on. Which was:
  1. Nutritional Support – Dr. K added a couple supplements to what we were already doing when we first saw him – that’s it
  2. Yeast Overgrowth Treatment - we rotated between 3 different ones, including 2 prescription anti-fungals. The prescription anti-fungals made him regress horribly in his speech and behavior. After being on the prescriptions for a month, I took him off to give him a little break and he started speaking more the first day he was off of them and putting 2 words together again. However, it took an entire month and continuing cranial sacral & chiropractic neurology appointments to regain the lost development of the month on anti-fungals.
  3. LDA Shots – That’s Low-Dose Antigen for allergies. It requires prescription anti-fungals and a somewhat complicated 17 day protocol. And total, it takes 3 years. Part of the purpose for these is to calm the inflammation in his body and help to reverse the Th1/Th2 immune response. Jordan has an overactive Th2, and an under-active Th1 – opposite of what it should be and needs to be. This step was required before beginning chelation.
  4. Chelation – treatment to pull heavy metals out of his body, which he is toxic with.
So, basically, with Jordan’s horrible regression on the prescription anti-fungals and my refusal to continue to give them to him (without first checking out other available options), he couldn’t get the LDA shots, which means he couldn’t get the chelation. This basically means, he wouldn’t get treated, at least not with this protocol. It all hinged on the prescription anti-fungals. Bummer, huh. Well…maybe not.

In my mind, I thought, surely there is a way to treat the yeast with natural anti-fungals. And are the shots really necessary? Isn’t there another way to go about calming inflammation and reversing the confused immune system? Hence, I contacted Dr. P’s office and we’ve been waiting for the appointment. Everything I could find online about him and his protocols, it looked like that’s how he treats these disorders. But I couldn’t tell for sure… 

Are you keeping all these doctor’s straight? That makes: Dr. R., Dr. K., Dr. P, and Dr. B. And I haven’t mentioned Miss T and Miss K. for his therapies. Okay, moving on. The new doctor – Dr. P…
I filled out a lengthy questionnaire, including essays, fully expecting to have to repeat verbally everything I had written when we actually got into the consultation. Not so! I like this doctor already.
The first thing he asked was, “Where are you at with Jordan’s treatment right now?” So I told him what happened with the prescription anti-fungals and told him I had taken Jordan off of that protocol and was giving Jordan a break while we waited to be able to talk with him. (But had kept Jordan on the other supplements and had just put him back on the non-prescription anti-fungal earlier this week.) Dr. P. said, ”Great. I don’t like the prescription anti-fungals, many kids don’t react well to them. I don’t use them.” Now I’m really liking this doctor! He affirmed my “against medical advice” decision – whew. And, he does treat the yeast, but he uses alternatives, not prescriptions! And he has about 5 he uses, so if Jordan reacts to a couple there are other options to try. That gives me some peace of mind.

Then he went on to explain several other supplements he wants to put Jordan on, what they are, who makes them, what they do, and the order in which to start giving them to Jordan. He asked about Jordan’s diet, said what we are doing sounds great. He emphasized getting good fats in him, using hemp seed oil and nut flours in his diet along with the ghee and hemp milk we were already doing. Does this sound science-fiction yet? I had never even heard of these foods before Jordan. Anyway…
A few of the supplements he is putting Jordan on are specifically to calm the inflammation in his gut & body, help stabilize the cell, and to help switch the Th1/Th2 dominance around. So that replaces the main purpose of the LDA shots!!! No prescription anti-fungals necessary! No shots! No 3 year treatment plan just for shots! No 17 day protocol for each and every shot!

Once Jordan gets established on these supplements and there is time to see how he does on them and make sure he adjusts and isn’t reacting, and then we will start chelating!!! That means getting the heavy metals out of his body, cells, and brain. He is going to use OSR as the chelating agent. It’s new. It is fat soluble instead of water soluble (other chelating agents such as DSMA are water soluble) which means it can get INTO the cell, and get metals and free radicals out of there – very critical. Being fat soluble also means it crosses the blood/brain barrier so it can get the metals out of the brain – also very critical. And it’s totally non-toxic. Very cool. He may use another agent as well, depends on the heavy metal test I do and the results. Yes, me, I do the test. Since Jordan’s problems started so young, it’s a safe bet that his heavy metals resemble mine fairly closely, with some metals from vaccines added to him.

And the best news of all…this is a doctor who “gets me”. In 2 ways:
1) He jumped right in to exactly where we are at with Jordan’s treatment, no more waiting and going through all the first steps of the dietary measures, cleaning up the home environment, etc yet again.
2) He immediately picked up on the fact that I’ve done tons of research, pay very close attention to Jordan and to what is going on in his body, and know what is going on with his treatment. Dr. P. gave me the guidelines – which supplements/medicines to use, what they do, and what order start giving them to Jordan in – and then “set me free” to proceed with Jordan’s treatment. I get to watch Jordan in order to determine which ones Jordan can tolerate or not, how often to rotate the ones that need to be rotated (within guidelines), determine when Jordan is adjusted to the main supplements to where he would be ready to start chelation, etc. Of course, any questions I have they are available to answer them. But it is such a HUGE relief to know that when I sense something is not right for Jordan - I can stop it or change it! No more waiting for doctor’s orders. And when I see something is really good for him – I can keep it up! No more waiting an entire month for the dr’s appointment to get them to change one little bitty thing (or huge thing as the case may be). No more paying lots of money to not be listened to when I tell them something is very wrong. No more not being able to ask, “This doesn’t seem to be working, is there another way to go about accomplishing this goal?” Yes, I’m VERY excited about this new doctor!

After he went through ALL of these things – and there was A LOT, he asked me if I was overwhelmed with it. Nope! Not a bit! It’s so great to have someone who knows be able to tell me which supplements Jordan needs, which ones are the best, what order to do them in, etc. What a relief! I don’t have to figure that all out on my own. Now the thought of that - all the research, all the intricacies of medical treatment and the tremendous load of responsibility - is overwhelming. And I’ve certainly thought it. I haven’t just thought it, I lived it for the first year and half of Jordan’s life and I don’t want to go back. Maybe that’s why I’m so confident moving forward. It doesn’t overwhelm me or scare me a bit to be this involved in decisions about his treatment. I wouldn’t want it any other way. I know Jordan the best of anyone. Who better to see how he’s responding and adjust accordingly. Sure there will be moment of doubt. Moments, even days, of unknowns as we go through ups and downs and when some supplements/medications work, it may look like a bad reaction instead of the good that it is actually doing. I’ll certainly need wisdom. And the new regimen of supplements, timing them throughout the day – with meals, empty stomach, on food, in drink, through syringe, rub on skin – and tracking them through weeks and months for rotating, starting, stopping, restarting, and dosing changes is daunting. But, that’s okay; we’re up to the challenge! It’s way better than figuring everything out on my own! But still pray for endurance, wisdom, and cooperation from Jordan :)  Poor little guy doesn’t always love supplements being mixed into every drink or bowl of food (actually he hates it, but tolerates it as long as he doesn’t have to watch you add it) - although he generally loves drinking anything out of a syringe and having things rubbed on his skin :) Hopefully, nothing we add to his regimen will change that.
I like the new protocol. It addresses what needs to be addressed (same issues as the other treatment protocol), does it with more natural means, and we can begin chelating a lot sooner. We’ll see if it works and if Jordan can tolerate it…

Monday, April 13, 2009

Back on Track with Autism Recovery

The cranial sacral treatments we did from December through February helped tremendously, as you noticed in my posts in February. We started the anti-fungals the end of February and everything fell apart. He regressed terribly. His speech didn’t disappear, but he stopped advancing and regressed some and his behavior went downhill – lots of tantrums again, head banging, wanting to be held and carried a lot.

Now we’ve made it to April and he has been off the anti-fungals for 3-4 weeks. He is pretty much back to where he was the middle of February. We’ve been continuing the cranial sacral appointments all this time. He’s doing great again. He is gaining speech again and his behavior is improving. Mondays cranial sacral appointment (Dr. R.) made a tremendous difference. The appointment Monday was one like I had never seen before. Jordan went through 3 stages in the appointment. He was quiet, sullen, and shy at the beginning (fairly normal for recent weeks). He got a little fussy and cranky when Dr. R tried to evaluate him and wouldn’t cooperate. Dr. R then held him by his ankles upside down, which Jordan thoroughly enjoyed. Dr. R would relax his hold on one leg and then switch, basically his legs looked like he was walking  but upside down. The more he did this you could actually see Jordan’s range of motion increase  and stiffness in his body decrease. His back and neck arched and extended more each time – a very good thing. Jordan was okay while upside down  and Dr. R did this for a few minutes. After he put Jordan down, upright, within a few seconds Jordan was very aggitated, fussying, staying close to the ground instead of standing and walking, and banged his head on the lightly carpeted floor twice, hard, a couple minutes apart. After the second head banging, Dr. R sat Jordan on his lap and worked on Jordan’s skull for quite a while. When Dr. R was done, Jordan was happy, jovial, and bounced off to play with the toys in the room. The change in him was amazing!  This week, he has not banged his head once, not even during his tantrums. In fact, I even saw him start the motion once and stop himself before his head hit the floor. This is a very encouraging and pleasant change. It was horrible watching and listening to his head bounce off the floor like a bowling ball. However, I had long since given up on stopping him. No matter how many times I’d stop him and pull him away, try to hold him and restrain him, he’d fight me until he got away and head straight for the tile floor. Hopefully our days of head banging are going to be few and far between, if not gone forever!

Although I say he’s pretty much back to where he was the middle of February, there are some differences. With his speech, in February he was saying entire statements when he combined words like, “Read a book” or “There you go” (as he handed me his empty plate) now he is missing connection words, but gets more main words such as, ”Mommy, come help down chair” (when he needs me to help him down out of his chair). He is using more variety in his language and can communicate just about anything he wants to now! He’s even started with the, “Watch, Mommy” for all his new (or not so new) feats. You may not realize why this phrase is exciting. Not only is it great he has the language, it’s really great because it means that he’s far enough away from me that I can “watch him” since I’m not holding him, or more acurately, he’s not clinging to me screaming like banchee every time I attempt to put him down. He’s actually off on his own playing! Very exciting stuff! You just need to know a few quirks like “strawberry” can mean “strawberry”,  ”blueberry”, “blackberry” or “raspberry”; “juice” could mean “juice” or “water”. With his behavior, tantrums, fear, etc he is not quite back to where he was in February, he’s still more moody and sullen, but in the last week has made great strides in the direction of happiness and independence – thanks to his cranial sacral treatment on Monday! It’s incredible to hear his great belly laugh quite regularly!

I had been going to give the prescription anti-fungals one more try so that he could get the LDA shot, but he has been doing so great off of them and they affected him so severely we have decided to abandon that line of treatment completely and go for a more natural route. We will keep it in the back of our minds as a last resort should we need to come back to it. Currently, we are giving him a rest this month, keeping up his diet and cranial sacral appointments, and doing his brain therapy exercises while we wait for the consult with the Pittsburgh doctor the end of April. Oh, we did just start (this week) a new natural detox supplement. So far we have seen good results (a substantial increase of horribly stinkin’ poop which is great – that means his body is getting rid of bad stuff) and no negative reactions!

So that’s the latest, thanks for keeping up and praying for Jordan and us!

Wednesday, April 1, 2009

Roadblock! Autism Treamtment and Allergy Shots

We have hit a roadblock in Jordan’s treatment and progress. Jordan’s doctor first wants to treat his allergies then his toxicity issues, including heavy metal toxicity. So we are starting with shots that are suppose to reduce or eliminate his allergies (over the course of a couple of years). For about 6 weeks we’ve been working on a treatment protocol for Jordan to receive on of these shots - an LDA shot. That’s Low Dose Antigen, an enzyme-potentiated allergen shot. In order to receive it there is a protocol he has to meet for the 9 days before the shot. It goes something like this. 9 days before – stop fish oil supplement, start on prescription anti-fungal drug. The day before, the day of and the day after the shot, stop ALL supplements and prescriptions and all food or drink has to be cooked or boiled. Well, we’ve made it through to day 8 or 9 a few times. Day 8 is the day before the shot, day 9 is the day of the shot. Only to have him get a cough or runny nose or diarrhea – all reasons that prevented him from getting the shot.

After the last aborted attempt at the shot, I stopped Jordan’s anti-fungal medication to give him a break and started him on his fish oil supplement again. Guess what…that day he started talking MUCH more again. New words. I hadn’t heard a new word in over a month. Two, three, and four word combinations! I hadn’t heard those in a month either. Jonathan took notice too and we both marvelled at what we heard coming from Jordan’s mouth.

So, which is he responding to? The anti-fungal bothering him, or the fish oil helping him? I’m inclined to think it’s both. And it makes me really not want to keep him on these prescription anti-fungals. I spoke with his doctor, but didn’t receive a satisfactory answer. He said to try Diflucan at 1/2 a dose. The appointment before, he had said never to give him Diflucan again because it was giving him diarrhea…hmmm. It was very yeasty diarrhea so I hadn’t been real worried, I figured it was doing it’s job. So, maybe a 1/2 dose will do the trick. But I’m afraid that somehow it is affecting Jordan’s brain since it is affecting his speech so much.

I feel a bit confused and frustrated. I don’t understand why we have to do the allergy shots in order to detoxify him.  I just know that is the order this doctor does it in #1 nutrition (we were already doing all of his suggestions when we started with him) #2 allergies controlled #3 detox and heavy metals. So, I’ve been back to pulling nearly all-nighters researching, and we have been thinking this over.  Our decision – we are going to follow the doctor’s suggestion one more time and see what happens. For now I’m giving Jordan a little bit of a break from the prescriptions before we give it one more try. In the mean time, I’ve scheduled a consultation (a month from now) with yet another doctor – one in Pittsburgh who treats with natural anti-fungals, not prescription,  doesn’t treat with allergy shots, and jumps on getting the toxicity out right away.  I’m more comfortable with this new doctor’s treatment protocol and feel that he is more up-to-date on his research (quite a feat considering Dr. K is very cutting-edge). However, nothing is guaranteed, so I want to give Dr. K a valiant try before switching mid-stream. I know he is a very great doctor, one of the best, with a great success rate. But, if it isn’t working for Jordan…

That’s where we are. Keep praying!

Autism Recovery: Supplements, Brain Exercises, & Nutrition (What do we eat, anyway?)

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


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.


 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