Sunday, January 3, 2016

Propofol Fail


 I've read horror stories regarding dental sedation. I now have my own.  

If you go to a dentist who can perform dental surgery in-house, it can mean a service comes in and provides the intravenous sedation. My oldest daughter had this done three or so years ago and it was absolutely textbook and successful. She also has no severe food allergies.






Different story for Izaiah. It was traumatic for all of us and if you have a child with severe food allergies, keep reading the post. I'll be brief.

The conversation with the anesthesiologist went kind of like this:

Anesthesiologist assures me that propofol (with egg and soy) is always used with highly allergic kids.

I assured the anesthesiologist that Izaiah was allergic to egg and soy and this would not work.

She assured me that it is highly refined egg and soy proteins so it should work. 

I assured her that I have tried highly refined types of soy that he still reacts to, so I knew this would not work.

She assured me that she would do a test run first and watch for reactions and stop if she saw anything.

I assured her she would not see a reaction because it would happen days later and Izaiah would be covered in severe eczema, head to toe.

She assured me (read pressured me) that she believed none of that and that in a couple of hours Izaiah's dental work would be done and he would be fine. That was her experience with kids with severe allergies and we should give it a try.

I should've walked out.

Have you ever seen your child put under? They put Izaiah out as he lay in my arms. I thought they killed him. I turned so many shades of white a corpse would've looked sun-kissed beside me. I trembled uncontrollably and cried. They promised me this was normal, took him out of my arms, and made him comfortable in the chair. It was time for me to go and for them to get the work done.

I made my way to the restroom where the mirror reflected someone 30 years older.

I regained my composure and tried to look interested in Ashi's schoolwork. Forty-five minutes later the anesthesiologist rushed out to tell me that Izaiah had an asthma attack and they had to pull him quickly out of sedation for a breathing treatment. No dental work was done.

I won't go into my feelings but horror, shock, and "I told you so" were all front and center.

Fast forward a month and Izaiah still has eczema head to toe. It reared it's ugly head about 3 days after the procedure. It isn't severe anymore, but we haven't seen any of this since closely following the protocol of our bio-med doctor more than two years ago. Even though we know what it is, how to treat it, how to keep Izaiah comfortable; it angers me no end.

For more than 2 years Izaiah has had no egg and no soy. We have turned our lives upside down and spared no energy, effort, or monies in healing him; but just like the flip of a chart on a clipboard, one anesthesiologist can turn it into a vapor. And that's the end of that. No apologies, no recompense, no responsibility. Par for the medical and dental profession today. Not one care for how hard we worked, how hard it will be on Izaiah to recover from having his allergens injected into him. It's not their child, what do they care?

I have since found this case study regarding propofol and allergies. This is what happened to Izaiah.

Ultimately, I've located an holistic dentist an hour away from us who works with autistic children and will help me heal Izaiah's tooth naturally. 

Our bio-med doctor promptly communicated his heartfelt regrets over what happened, bless his heart. He knows how hard we've worked. He emailed instructions for detoxing Izaiah, but even still, it will take one to three months to get the infractions out.  If I could go back, I would follow my gut and WALK OUT.  Don't forget about that option.

I will update on the progress with the new, holistic, dentist at a later time.

Nothing goes perfect in this life. If we think it does, we are wrong. If we think because we love Christ and are a Christian that all things will be perfect, we are also wrong. If we think every decision we make that has no bumpy road is of God, I would question that. When things are perfect, we don't need Him. The only person who doesn't want us to need Him is Satan. So, if things are always going your way, I'd be a bit nervous, to say the least.

God didn't rescue the Israelites from slavery because they were having a good time. No, he heard their CRY unto Him.

Some days I swear I don't have the power to move even one more step or handle one more responsibility. Some days I feel like cooking one more meal, doing one more chore, getting through another day of therapy, school, and bedtime will literally burst me into a million pieces. A nap will not help. A vacation will not help. Even a major breakthrough in therapy will not help. There is only one thing that causes me to power up again and face my struggles with joy. And that is crying out to God and steeping myself deep into His Word.


Isaiah 40:29-31 says He giveth power to the faint; and to them that have no might he increaseth strength. Even the youths shall faint and be weary, and the young men shall utterly fall: But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.


Tuesday, May 26, 2015

What a Difference 18 Months Can Make

If you follow our story because of intrigue or to learn along with me, this is an overdue update. Izaiah's steady progress in every area means I have been uber-busy implementing and updating therapies.

To briefly recap, Izaiah's gut was mutilated with overuse of antibiotics. Instead of a healthy flora existing to overcome the occasional illness, his immune system was causing his body to attack itself on a daily basis.

With a leaky gut filled with c-diff poisoning, clostridum, and yeast overgrowth, Izaiah's organs and brain became inflamed. The inflammation on the inside was evidenced by the severe, flaming, eczema on the outside (the skin.) Also notable, was his severe, severe regression into 'autism.'

Finding the right kind of doctor who understood was like finding a needle in a haystack. We finally met ours by the grace of God, through a sweet friend.

 Within TWO WEEKS of seeing our new doctor Izaiah became free of seizures, tics, head-banging, and severe eczema. But that was only the beginning.

Fast forward 18 months and Izaiah's progress is outstanding. His eczema is now in remission! I am suspect that many severe food allergies may also subside as we continue to heal.

Miraculously, his mitochondria are now functioning the way they are supposed to. If you know anyone with mito issues then you are aware of this rare success. I'm truly speechless at what Izaiah's doctor has been able to do, all naturally. Our son now has endless energy and can play all day outside for hours on end. Swinging, sliding, climbing, jumping on the trampoline, balancing on limestone, bike rides...hard to believe this is the same kid who needed a stroller or a nap after 5 minutes of outdoor play,  just 18 months ago.


Izaiah's social behavior has immeasurably improved. He makes eye contact. He engages. He wants to
engage. He plays with the neighbors. He grabs me by the hand to take me places. He follows one-step commands. He's been attempting to smile and pose for pictures (above) and he's figuring things out, like how to ride his bike, swing, steer his plasma car, and we're working on swinging a bat.

We love being our neighborhood hot spot! The kids are so blessed to have many fun friends who come over.
Now he is responding beautifully to occupational therapy and sensory integration. His severe tactile defensiveness is slowly diminishing. I plan to post next about the specific toys and objects that have been most beneficial for us the last 6 months. Most likely you have them all at home already.


He's gaining a relational perspective, that is, becoming aware of his positioning relative to others. Such as when we are bike riding. He wants to go faster to keep up with Ashi, he wants their wheels side by side. He wants to  keep up with Ashi's swings. You can see that determination in the pic below. He has a favorite neighborhood friend to jump in the trampoline with since she is almost the same height as Izaiah. You can see in his eyes and face that he makes those connections.

Izaiah determined to keep up swinging
Most heart-warming is that he allows me to read books to him. and he even has a favorite, If You Give a Mouse a Cookie. The reason he could not sit still and listen, focus, or even care about a book before was simply because he was hurting.

His excellent receptive speech is shown by his clear understanding of what is said and following instructions. He's even slowly becoming verbal. Even though his receptive speech is so good, there is still an obvious processing delay which I'm hopeful will get better with time, therapy, and practice. I think his expressive speech gap will close as we keep broadening his receptive speech and improve that processing delay. 

I was shocked when our doctor told me, at our last appointment, that Izaiah's autism is in his gut and as soon as these last issues of clostridium and yeast are handled, his autism will be gone.

I was desperate for our son to be healthy. He was slipping from us and from this world so I have strictly followed our doctor's protocol for 18 months. The maintenance is difficult, there is no wiggle room, but the alternative isn't good enough. I don't want to manage Izaiah's illness. I want to CURE him.

Lately, I have been studying the book of Acts. I don't know of a book filled with as much political savvy, adventure, and literary masterpieces as Acts. I've studied it many times, absolutely engrossed. In Chapter 26, Paul ultimately addresses King Agrippa, ironically  the great-grandson of Herod who attempted to murder Jesus as an infant and the son of King Agrippa I who murdered the apostle James.

Later in 2 Timothy 4:7,  Paul says, "I have fought the good fight, I have finished the race, I have kept the faith." 
 

Many of us are coping with the environmental effects of GMO's, overuse of vaccines and anti-biotics. It's a train wreck devised and driven by scientists and politicians blinded by greed instead of human love. Our trials, our successes, even proof of the crime falls on deaf ears. But, we have to fight the good fight and we have to finish the race while holding on to our faith. Our faith in Christ will see us through. Ultimately, we all who will believe in Jesus Christ are already winners of the race Paul was speaking of. I encourage you in your race today and to strengthen yourself by reading God's word.







Friday, January 30, 2015

So.Much.Progess.

All by Myself!

File yesterday under "Best Day Ever!" and in fact this whole week under "Best Week Ever!"

Izaiah's auto-immune issues continue to heal and he is responding wonderfully to therapy. His sensory issues are now easier to regulate and he's making some cognitive leaps too. Here are a few areas we have been working:

1. Drawing circles using the Injini app. .
2. Identifying nouns using the Bitsboard app. 
3. Fitting shapes into a visual light up toy that announces colors, numbers, shapes, and fruits.
4. Therapy Putty. It took 4 weeks for Izaiah to be able to touch therapy putty! Exercises to Do.





5. Index finger/ thumb, pincer grasping while picking out the objects in Discovery Putty. 
6. Rock walls. Izaiah has conquered his and can climb it without assistance.
7. Able to use a glass or drinking container without straws or sippy cups or assistance. 
8. A couple of 'pedals' on his bike.

Hard to believe that just 13 months ago, auto-immune issues kept this boy in a stroller!

Even if under the care of a professional therapist, one key to success is practicing therapy at home. A tool that keeps me organized and motivated is a journal. It also is a useful, written, document.

I used a spreadsheet to create an 'at-a-glance' type of journal. Here is a blank one if you want a template. I also have a filled in one so you can see what we are doing for therapy at the moment. Each page represents a week of therapy. What this is not is just a check-list of things Izaiah can/cannot do. No, this is a checklist for me to be sure I am engaging throughout each day in playful ways that encourage relational interaction, taking turns, eye contact, pretend play; and motivate Izaiah to desire to interact with myself and others. This helps me keep on task, even when the day get hectic.

I do keep track of his abilities as an indicator to me to add fresh and more advanced ideas or to flag areas where we need to concentrate. At first, I just marked the activities with an 'x' but now that Izaiah is putting in more effort and has better ability, I fill in each box with 2 numbers. One number represents a one-to-five scale for focus; 'one' shows 'not focused'; 'five' demonstrates interest and concentration.' The other number represents ability. A 'one' indicates 'needing hand over hand assistance' and a 'five' denotes 'completion of a task independently.'

If you are having major behavioral issues I wrote an article for HEDUA magazine located here. 


Romans 5:3-4 And not only so, but we glory in tribulations also: knowing that tribulation worketh patience; and patience, experience; and experience, hope.







Friday, January 16, 2015

Hode Jue



Surprisingly this is not a new recipe crafted of bizarre ingredients. 

Or a new therapy or class we're doing in school. It's not a natural remedy or even a new illness. 

Very late last night I was putting Izaiah's laundry away (again) when his little feet padded up the stairs. He confidently handed me a video then headed out. I followed, draped in blankets, hoping bedtime was around the corner. 




The machine slurped up the DVD and I sank into the couch. My non-verbal child bounced off his trampoline, over the arm of the couch, eyed me and said, "hode jue?" I blurted, "yes!!! Hode jue!" My misty eyes and I hugged that little boy for dear life.

I've been around this autism block a long time so I translated "hode jue" as "hold you" because decoding words, verbal or non-verbal, is my secret power. And, I'm well aware that "hode jue" means "hold me" because this is what young autists do when learning language. They mix up their pronouns. Wow! Izaiah can mix up a pronoun! Yay!

I also know that earlier, upstairs, when I heard Izaiah's little feet travel the stairs, I had been dabbing up my tears with the laundry I was refolding for the 8th time. I was overcome with fear about who would care for him with all his auto-immune issues if I wasn't here. Who would methodically care for every cell of his eczema skin? Check and recheck all of his food for allergens? Who would cook using those never heard of ingredients? Who would compassionately tend to all of his sensory issues and faithfully keep his world from over-powering him? Who would sacrifice everything to make sure he is comfortable, help him learn at his own pace, and show him that he is valued and loved?

During that moment on the couch, when we made eye contact and Izaiah spoke to me, just for a second, I let "hode jue?" be about me. Yes! I need you to hold me! Big squeeeeeze, and I am again amazed at how God comforts.



Let, I pray thee, thy merciful kindness be for my comfort, according to thy word unto thy servant."
Psalm 119:76 (KJV)

You can learn more about the Ashi's Gift Series of books about autism that also nurture parents at Ashi's Gift Website.

Thursday, December 4, 2014

Medically Fragile to Healthy plus Pizza Recipe


I'm posting from a mountain top! Or at least a nice plateau. Happily, I am more confident about the higher hills yet to climb. Still, life is good for our little boy who used to be so sick. This month of December marks one year faithfully following the protocol of our DAN doctor.

All of Izaiah's tics, drooling, and head-banging are gone. Severe eczema? It's been mild to in remission for almost a year! All seizure activity? Gone, naturally, without toxic meds. We have eye contact, a stronger body core that doesn't get fatigued, weight gain, a strong immune system, family interaction and (finally!) cooperation in therapy, attempts at verbalizing, and best of all, an adorable personality emerging. Looking back, it all seems miraculous.

But one transition stumped me as he morphed from medically fragile to healthy. He was still whining a lot. Not from being ill, but rather he was using the only communication he knew. It was understandable for a young, ill, toddler. But not for this healthy 5 year old! That would need to change.

From my point of view, I was exhausted from being caregiver and nurse for 5 years. I wanted life back to normal. Gosh, did I even remember what that was? Yes!! Yes, I did and I wanted it now!  But, I would have to be patient.

We had to transition through a time of teaching Izaiah to communicate his wants and needs without whining.

We muscled through in 12 to 16 weeks with behavior tapering off the last few weeks. It sounds hard, but actually, was a natural flow of events.

Since Izaiah's behavior bettered as health improved, behavioral therapy was the clear place to start. I could easily piggy-back some OT and speech in there too with better behavior.  If  you follow my blogs, you know I provide my own therapy. Success means having a structured format to daily record your goals and outcomes.

I'm including a printable PDF form with this blog post. You can print this and use it or custom tailor your own. I just used a spreadsheet.

And, instead of telling you stories of how I effectively changed Izaiah's behaviors, I included 3 of  my handwritten examples so you can see the simplicity of it. I want to show how easy it is to define your goals, decide how you will reach them, and record your results. (Refrigerator Door, Whining, Sucker Sticks)  The key for success is consistency, patience, consistency, and patience. And, don't forget to be consistent and patient!

 
Now, for something to eat!  
Allergen Free Pizza (makes two, 8 x 10, glass dishes)

Garbanzo Bean Crust
Ingredients
3 cups garbanzo bean flour
1 tsp salt
1 tsp coriander ( or pepper)
1 3/4 cups (approx) water
3 tbsp grapeseed oil ( feel free to use olive oil)
Mixture will be a thick liquid and pourable, like pancake batter. It will not be thick like bread dough.

Heat oven to 480 degrees while the batter rests. Pour another 2 TBSP grapeseed oil into each glass pan. Put into 480 degree oven for about 6 minutes to heat the oil. Carefully pull them out and evenly pour the batter between the two pans.  Bake 12 to 14 minutes.  Remove and turn oven down to 350.

Beet Pizza Sauce - of course you can just use tomato if not allergic
Peel one large beet.
Cut up and boil until soft.
Puree in Ninja or processor.
Add 1 tsp salt, 1 tsp garlic, and 1 tbsp oregano and mix.
Add a bit of the water from boiling if necessary to get a consistency like tomato sauce.

Let bread cool a bit after it's done baking.
Ladle your beet sauce onto the crust.
Add desired toppings. We use cooked hamburger, onions, and bok-choy. We are unable to have cheese of any kind on our pizza, but you may be able to use a cheese sub like Daiya.

Return pizzas to 350 degree oven and bake 10 to 15 minutes. Remove, slice with pizza cutter, and enjoy!


I am a stay-at-home, homeschooling, Mom to these two awesome kids. I have provided all of their therapy myself and enjoy sharing nuggets I learn along the way. I am not a licensed therapist, I just play one at home. My blog is not a sub for a professional therapist. Oh yeah! I've also written 3 children's books about autism that also nurture parents. You can find them at ashisgift.com









Sunday, September 7, 2014

9 Food Allergy Myths

Comprise 90% of food allergens
There are many misconceptions about food allergies. Sadly, I believed many of these myths before our own nightmarish trek.I hope this is an easy resource to help educate those in your sphere.

Myth 1: Food and allergies have no effect on autism. "It can't be that simple."
Myth Uncovered: It isn't simple, that part is true. Diet changes are hard. I used to be skeptical of a food /ASD connection. But uncovering food allergies is key to healing quite a number of problems like severe eczema, behavior problems, auto-immune disorders, headaches, sleep problems, mood swings, adhd, etc. I would go so far as to suggest removing allergens before seeking out therapy for autism.

Nightshades. All of them allergens for us.
Myth 2: Food allergies are a result of eating junk food.
Myth Uncovered:  Actually antibiotic overuse causing leaky gut will cause an auto-immune response to nearly anything eaten. My son is allergic to apples, bananas, lettuce, potatoes, tomatoes, wheat, rice, oranges, etc. because that is what he ate with a leaky gut...none of those things are junk food.

Myth 3It's okay to eat allergens once in awhile.
Myth Uncovered:  Only if you want to eat poison. Allergens should be avoided at all costs. Allergy reactions cause itchy, inflamed, eyes; throat swelling shut, hives, eczema flares, behavior problems, GI pain and let's not forget, some allergic reactions are fatal. Having to use an Epi-pen and  ER is expensive. 


IgE prick test. IgA's and IgG's are done via blood test.

Myth 4: A child will be undernourished.
Myth Uncovered:  The type of testing required to identify food allergies/ intolerances is performed by professional doctors, many of whom have a lifetime of experience substituting food that is not toxic to the body yet nutritious. They will test various body cycles to determine what supplements are needed by the body to fill in the gaps. Most likely, you will eat better and healthier than ever in your life. Our son, on a very strict diet, has gained 11 much-needed-healthy-pounds in the last 9 months.




Myth 5: It's okay to serve known allergens at the same table the child will be eating.  
Myth Uncovered:  If allergies are severe, the risk of contamination is great. For us, the risk is entirely too much. The allergy is to the protein molecules of the foods. Those proteins can be attached, even to your fingerprint, and that is enough to cross-contaminate other foods, utensils, dishes, table-tops, clothes, towels, etc.

Myth 6:  But the food is good for them!  
Myth Uncovered: Known allergens are poison to the body. It doesn't matter what nutritional content they have, if they are an allergen they can be deadly.

Myth 7: Mom believes everyone will respect her child's allergies.
Myth Uncovered:  For many of us, our friends and families have not endured the years of sleepless nights, behavioral problems, illnesses, emergency room visits, GI problems, severe eczema, night terrors, and endless doctor bills that you and your child have suffered while trekking from doctor to clueless doctor until you finally get answers. Watch out for schools, teachers, and churches because there is always some 'sweet lil' person' lurking around the corner to hand your child a 'treat' or a 'sample' without asking Mom first (the gall!) so never assume others 'get it.'

Myth 8: Just a little won't hurt.
Myth Uncovered: Yes, just one can hurt; yes, just a little can hurt.

Myth 9: I tried gluten and casein free, it didn't work.


Myth Uncovered: Gluten and casein are often just the very tiny tip of the iceberg. It's a good start, but getting testing done, both prick test for IgE's, and blood test for IgA's and IgG's is necessary if you really want to get to the bottom of it. Most likely you will need to also remove soy, yeast (and foods yeast feed off), and there could be a multitude of foods and food families you will have to eliminate. GF/CF just really doesn't cut it. 

Just a couple of notes:
1. Cleaning supplies such as Dawn dish soap, Procter and Gamble products, and others can contain peanut oil. By law they do not have to supply an ingredients list including allergens.

2. Celiac disease also can be flared by even a crumb of wheat (gluten), so do be very careful.

3. Allergy shots are for environmental allergies, not food allergies. 

4. Getting rid of yeast means all breads and deserts that rise, and cheese. It includes foods that feed yeast like sugar, dried fruits, berries, sugar, sugary snacks, fructose, glucose, dextrose, syrup, etc. A probiotic is essential and maybe even a script for nystatin to help kill and control the yeast. Stevia, to my knowledge, does not feed yeast.


Dealing with food allergies is a time of adversity and trial. Conventional doctors who cannot see beyond the prescription pad are no help and don't mind robbing us blind. May I suggest finding a DAN or MAPS doctor in your area or nearby state? It's not uncommon to travel to find one. They will go the distance conventional doctors and allergists refuse.  Our DAN has literally transformed our son's life. They treat autism, adhd, behavioral issues, PANDAS/PANS, Mitochondrial disorders, eczema, sleep issues, GI issues, allergies, and more.

You WILL get through this adversity and you will be victorious! After every difficult day or night His mercies are fresh with the sunrise. “It is of the LORD's mercies that we are not consumed, because his compassions fail not. They are new every morning: great is thy faithfulness. The LORD is my portion, saith my soul; therefore will I hope in him. (Lamentations 3:22-24 KJV)

Saturday, June 21, 2014

Fresh Finds



Garden Gloves. An excellent fidget for kids who like cloth. They have neat plastic 'nubbons' for texture. These cost just $1.97 each! I can't find many fidgets for that price and I can stock up when they go on clearance this fall.

Little 'nubbons' feel great!  A cute photo of Izaiah very serious about his fidgeting!















Another idea for cloth lovers is thermal shirts and/or pants. They are longer for folding and halving and have an interesting texture.




Rutabagas. If you have an allergy to potatoes this is the perfect replacement! They have a natural butter flavor and are easy to cut up and cook. I like to cook them with onion, salt, and garnish with parsley. You can boil them or bake them like fries. With 2 growing seasons you can have a good harvest if you garden. You can store them in a cool, dry place over the winter. They will keep for about 4 months! TIP: let them warm up to room temp before peeling.






Scentsy Burner.  Super popular, but  unfortunately can wreak havoc for those with sensitivity to the wax they burn and the fake scents.

I've been using mine with essential oils instead! I use 2 or 3 tablespoons of grape seed oil in the top container as a 'carrier' oil. Then I add a few drops of our favorite essential oils. Currently we are using lemon, lavender, and peppermint to help with environmental allergies.






Lava Lamp. We snagged this from Toys R Us. Not really anything new, but this is a smaller version so less pricey.












Now that we have Izaiah's allergies all figured out, all of our food is cooked fresh. Not only do I do this for meals, but for snacks too. Since I can't just go out and buy crunchy snacks like crackers, I have to make my own. Here is a great recipe from Cats in the Kitchen Blog My changes are only for our allergies. I can't recommend this blog enough for help in the kitchen when there are multiple allergies including yeast. 

 






Allergy Free, Organic Crackers and Dip
Ingredients for Crackers
1 cup zucchini chopped
1/2 cup bok choy chopped ( feel free to use carrots if not allergic!)
1 1/4 cup pumpkin seeds ( sunflower seeds can also be used!)
1 T hemp seeds
1 T chia seeds
1 T amaranth flour (or coconut)
1 T grape seed oil (or olive oil)
1/2 tsp cumin
1 tsp cilantro or basil leaves (optional )
1/2 tsp salt 
juice of 1/2 lemon
1 to 3 TBSP of water (start with 1 add more if needed when blending)

1. Blend all in a food processor or Ninja. Mixture will be thick.
2. Grease a cookie sheet. Then with wet fingertips, spread dough into the shape of a rectangle 1/8 to 1/4 thick. It should be thin, but no holes.
3. Bake at 300 degrees for 20-25 minutes or until just very slight brown can be seen around the edges. 
4. Using a pizza cutter, cut into squares and rectangles and using a metal spatula, flip the squares over.
5. Continue drying them for another 20 minutes. Flip again if needed. Keep drying and flipping until you get your desired cracker crispness. 

Dip Ingredients:
1 cup chopped zucchini
1 cup raw pumpkin seeds
2 - 3 leaves bok choy, beets, or kale
1 lemon (juice of 1 lemon)
1-2 T chopped onion (optional)
If desired, add seasonings for flavor such as salt, cilantro, cumin, coriander, bay leaves...if you use the crackers above, the seasonings are already in the cracker so the dip doesn't need them.  

Mix all  ingredients in a food processor or Ninja.