Gluten-Free & Cranial Sacral

Jordan and Grandpa

So, we’ve been casein free since Jordan was 4 weeks old, but just went gluten free 2 weeks ago. We started his cranial sacral treatment at the same time, so I can’t say for sure which has made the difference, or they are both helping (my guess is they are both helping). And, guess what? Astounding things are happening!

 

In 3 weeks Jordan went from being in the 25th percentile on his height to being in the 50th percentile! Whoa!! (I think that growth is due to the cranial sacral work.) He went down in his weight – from the 10th to the 5th percentile. But, he did have the flu for an entire week and didn’t eat or nurse for 4-5 days. He lost all the weight I had worked for months to get on him. He was so skinny and scrawny BUT, in the last two weeks, since going gluten free, he looks like he has put back on all that weight and more. His belly looks pleasantly plump now instead of bloated!

And for the really great news: one month ago he couldn’t say Mama or Dada. On Christmas Day, I walked by him and said “Hi, Jordan”. He looked right at me and without hesitation replayed, “Hi, Mommy”!!!!! He had never put two words together before! The next day, my husband and I were in the kitchen and the boys were playing in the living room, Jordan starts wailing (a hurt-type of cry). I look in to see our older son near him and ask, “What happened?” no answer. Jordan toddles over to me for comfort. I look at our older son and again ask, “What happened?” And from Jordan I hear, “I fell down.” Astounded, I ask him, “Are you okay?” and he replies, “Uh-huh”. WOW!! His first sentence! Not only that, it’s the first time he’s ever said the words “I” or “fell” or “uh-huh”. In fact, it’s the first time he has ever referred to himself, and he used a pronoun! Also, it’s the first time he’s answered a question with an affirmative answer. WOW!

The next day (or night – actually), we are in the car traveling to Alabama. And I hear giggles from the backseat – and, no, my mind is not playing tricks on me – I glance in the rearview mirror to see the boys playing a hand game with each other (the only playing together they’ve ever done is “chase” consisting of Jordan chasing his older brother through the house, or big brother giving Jordan a wagon ride outside). They’ve never played a reciprocal game together before!! And then their hand game turned into another game! At one a.m. we told them it was time to go to sleep, but they were having so much fun together, we just couldn’t enforce it and let them play together until two a.m., when we finally stopped them and made them settle down and sleep!!!

I sat in the front seat teary-eyed for hours, counting my amazing blessings, overflowing with the joy of enjoying my children, knowing that Jordan is going to be just fine. A long road ahead, but it sure is nice to be getting to see more of his true personality and not the one altered by alleriges and health issues that we’ve been seeing all his life.

Why Gluten and Casein Free? Well, the reason for casein (dairy protein) is two-fold. The first is easy – he’s allergic to it. The second, (and there are two different theories on this, but this is one of them) and the reason we need to avoid gluten too, is that his body doesn’t break down the proteins properly or completely, resulting in partial proteins, called peptides, going into his blood and therefore, into his brain where it has an opiate effect. So, when he eats these, it’s like being on an LSD drug. Is it any wonder his speech was so delayed? And, long-term exposure can cause permanent brain damage. He is so young, it’s unlikely that there has been any permanent damage.

So, that’s our great news. The last month has contained so many amazing advancements I can’t even remember them all, let alone write them all down. And, we haven’t even started treatment through the autism/allergy specialist yet. We are still awaiting test results, so the treatment plan isn’t formed yet. That will come next week. Praise the Lord! Thank you for praying and caring!

A Long Road: Summary 3 months - 21 months

Wow, 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 (all night), 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: tantrumming – a lot; disturbed sleep, and  fussing and crying constantly unless he was held – I developed great biceps. :)  The doctors still couldn’t help. I was still researching and found some alternative medicine treatments that held some possibilities.

 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 acupuncturist 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. He also has 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.

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