Jordan Graduated!!!

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

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!

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.

REFLECTIONS
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.

Healing Allergies & Autism - Liver Support

 

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.

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.

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.

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.