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Posts Tagged ‘pervasive developmental disorder’

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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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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