Raven and Reine

It has been a LONG process training our dog to become a Service Dog. I wish I could go back and redo a lot of it because there were so many mistakes made. But I can not go back and the hard truth is, Raven has a long way to go before she can be considered “service” worthy. We have not given up on her training.

For a while, it seemed as though it was not going to work at all between these two. Their bond did not come easily and was not second nature at all to either of them. I refused to “force” them to bond. I am not even sure if that would be possible. Somewhere over the last couple of months, these two have created their own bond. It is becoming a strong one.

If Reine is gearing up for a meltdown, Raven will do everything she can to lay on top of Reine to hep calm her. She will not leave her side until she knows she is calm again. If Reine gets sick or has a CVS flare up, Raven will NOT leave her side until she completely feeling better or over the flare up. Reine has started calling Raven to everywhere she is in the house. I often find them together Raven keeping a protective stance or eye on her.

Reine has begun to tell her she loves her and to hug and kiss her. This is completely new treatment towards Raven.

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Reine’s Diet

When people find out that Reine has autism there are several comments we are guaranteed to hear EVERY. SINGLE. TIME.

  • She does not look like she has autism. She must be high functioning.
  • Don’t worry, they will find a cure for her horrible disease soon.
  • I just gave to Autism Speaks. They really are an amazing…..
  • She is gluten and dairy free right? Jenny McCarthy says……

Since Reine’s eating habits seem to leave everyone in awe, I figured I would do a blog post about it. I hear constantly how lucky we are. I used to believe that it was just dumb luck. However, this REALLY upset my Mom In Law (AKA Mom). One night she really let me have it. I think she was even caught off guard by it. But she seriously made a lot of sense and had very valid reasons to back everything up. She told me that it has nothing to do with luck and everything to do with me. It is my stubbornness, tenacity, creativity, constantly thinking outside of the box, and sometimes even utter insanity (from lack of sleep) that has gotten us where we are today in regards to Reine and my family. Seriously, my Mom will be so proud to know that she is getting through to me!

We hear constantly from our specialists and doctors that they wish their other patients would eat the way we do and use the cleaners we use. I also hear that I need to teach others about the importance of diet and autism all the time. While I can not speak for others in regards to their child’s diet, household products / cleaners, and autism, I can speak about my family’s choices and Reine’s autism.

With every specialist we see, diet is usually the second thing talked about. Sadly, medication is generally the first. We have yet to hear that Reine’s diet is anything less than stellar. We all eat the same diet in my home. It makes my life so much easier. We eat a Real Whole Foods diet with the Feingold Diet incorporated into that.

DISCLAIMER BECAUSE I AM SURE I AM BOUND TO PISS OFF SOMEONE WITH THIS POST….

I HOLD NO DEGREE IN CHILD NUTRITION, PSYCHOLOGY, PEDIATRICS, MEDICAL, OR ANYTHING CHILD, AUTISM OR SENSORY RELATED. THIS POST IS ABOUT WHAT WE DO IN MY HOME AND OUR DIET. WHAT YOU DO WITH THIS INFORMATION IS ENTIRELY UP TO YOU. EVERY CHILD ON THE SPECTRUM, WITH SENSORY PROCESSING DISORDER, OR ANY OTHER EATING DISORDER IS UNIQUE. WHAT WORKS WITH REINE MAY NOT WORK FOR ANY OTHER CHILD AND VICE VERSA.

Real Whole Foods Diet

We eat a Real Whole Foods Diet. No, it is not a diet based on the grocery store chain Whole Foods (although we are known to shop there). Yes, I have been asked that more than once.


It is a diet that I would define as the following….

  • Food in its most essential, pure and basic form.
  • As non processed as we can get it.
  • Fruits and veggies
  • Whole milk, yogurt, cheese and butter
  • 100% Whole Wheat or Whole Grain
  • Seafood
  • Meats and poultry without unnecessary antibiotics
  • Natural sweeteners like honey or 100% maple syrup in limited amounts
  • Seeds, nuts, popcorn
  • Minimally processed drinks such as milk, 100% juice, coffee, teas
  • Healthy oils
  • Beans and legumes
  • All boxed or canned items must have 5 ingredients or less in them. I must be able to pronounce the ingredients and know what they are as well as what purpose the ingredients serve.

We personally prefer to take the diet a step farther than some do.

  • All our meat and poultry is from local butchers and local turkey farms.
  • Our eggs are from a local farmer that we have a contract with.
  • We go to local farmer’s markets and local orchards any chance we get. We have a couple of stores that also offer local crops that we try and take advantage of.
  • Our maple syrup is made local.
  • Our seafood is fresh, wild caught, local if possible and must be US caught.
  • Not everything that we eat or drink is organic. We have spoken with many of the places we get our foods from about their practices in depth. They are not certified organic. Then again neither is my home garden. NOTHING is used in my garden. You can not get more “organic” than that. Yet I am not allowed to call it organic because I am not certified with the government.
  • We make almost everything from scratch.

Feingold Diet
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The Feingold Diet is an elimination diet typically associated with ADHD. However, many find that they benefit from the diet (my entire family included). Here is the super quick breakdown of the FG Diet. The theory behind the Feingold Diet (FG) is that certain foods or food additives cause unwanted or uncontrolled behavior in certain people. Hyper activity being one example. By removing these foods and additives from your diet permanently, the unwanted and uncontrolled behavior typically disappears. You eliminate certain foods along with everyday products (deodorants, perfumes, etc) containing the artificial additives for a minimum of 8 weeks until your child’s behavior reaches what is called baseline. Baseline is when you have achieved a desired behavior from the child for several weeks. Once baseline is reached, you begin to add the foods back in one at a time. You are looking for a reaction (behavioral changes) in the child. If they react, you remove the food from the diet and try it again once they hit baseline again. If they continue with the negative behavior, the food item is considered a trigger food for them and should be avoided. The artificial additives are removed permanently. This often includes household, beauty, and cleaning supplies.

Many believe that FG is a very “healthy” diet. I am going to go on record as saying that I do not consider FG a “healthy” diet. Many still eat a ton of processed foods on the diet. The processed foods just have a better chemical shitstorm in them. I think that by incorporating FG in a non processed diet, it becomes a healthy.

What is eliminated from the FG Diet.

  • Artificial colors and dyes
  • Artificial preservatives
  • Artificial sweeteners
  • Artificial flavors
  • Salicylates are avoided and reintroduced after baseline.

Not everyone reaches baseline from removing the artificial and salicylates. There are times when you have to do what is considered going Beyond FG and make additional eliminations to achieve the desired baseline. For us, we had to go Beyond FG and also eliminate the following…

  • Benzoates (except those that occur in nature)
  • Corn Syrup and High Fructose Corn Syrup
  • MSG
  • Nitrates
  • Nitrites

Reine’s Eating Habits

Pick Your Battles

Not everyone will want to take the time to make everything from scratch or to read labels on everything they buy. Maybe they can not afford to buy anything organic or do not have access to fresh foods. There is nothing wrong with that. You have to pick your battles and prioritize what you consider to be important for you both you and your family. For me, our diet is a major priority. It is very important to me.

A couple of years ago, diet was barely a blip on my radar. My entire house was processed. My cleaners were all store bought. I had an entire storage bin filled with OTC medications and prescriptions for everything that a household can possibly come into contact with or need. It was not until I was in ICU for 10 days that my diet became a priority for me. Both my oldest daughters developed health issues at the same time I was in ICU. I began to research foods and the roles they play in our bodies. I began to change our diet one thing at a time. The more I saw improvements, the more I researched, the more I changed things in our home. The more I changed, the more our health improved. For us, it became a priority.

3 Bite Rule

I am sure you have all heard of the whole 1 bite rule that many parents implement. It is also referred to as the “No Thank You Bite”. For those that have not, it is basically where the child has to eat 1 bite of each thing on their plate before they are allowed to say “No Thank You” and stop eating. The 1 bite rule did not work for us with Reine at all. I watched as she put a bite of food in her mouth, chewed it up, spit it out and said No Thank You! She would be starving within an hour, demanding food again. Her food world was shrinking down to almost nothing. I realized that I could not let that happen. I decided to implement a 3 bite rule. Basically Reine has to eat at least 3 bites of everything on her plate before she can be done.  Let me tell you, Reine was not impressed with this when we first started the rule. There were meltdowns of epic proportions. Standoffs at the table. Battle of wills between us and Reine. But, I stood my ground. By having Reine eat 3 bites of everything on her plate, she filled her stomach. She usually is not hungry again within an hour, unless she is having a growth spurt. I make sure that what she is eating is nutritionally packed.

Sous Chef

I am firm believer that kids belong in the kitchen. All of my kids help prep and cook. They have since they were about 18 months old. In my opinion, the more involved with their food they are, the more they will eat what they create.

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Consistency Of Food 

I hear all the time, “My child can not stand the consistency of XYZ food.” from people. I get that one. Seriously I do. Reine has Sensory Processing Disorder (SPD). She does have issues with textures of food. She is also 5 years old. Her tastes change daily. Seriously, she can not get enough of one thing one day and can’t stand it the next. I myself, can not stand the consistency of some foods. Shredded wheat is not my friend. Avocados and oysters are putrid to me. Yet, I continue to try recipes with them in it.

My point is to keep trying the foods in various recipes and forms. You may not like something in one recipe or with a certain spice or seasoning, but love it in another recipe with a different spice or seasoning. Reine’s palate has been expanded exponentially. It did not happen overnight, but it did happen. She is now a fan of salads, mushrooms, shrimp, oysters, salmon, cod, tuna, cucumber, “flat” and “gambled” eggs, hamburgers, steak, chicken, all kinds of fruits and veggies. Her list truly goes on and on. Most nights she eats everything on her plate.

Gluten and Dairy

While this is not true of everyone on the spectrum, Reine does not have any kind of intolerance to gluten or dairy. I am not in denial or delusional. Yes, I have been told that and called that. Not everyone on the spectrum has issues with gluten and dairy. And yes, Reine has been tested by her GI specialist. He had to rule out dairy and gluten intolerance when she was being diagnosed with CVS. I do not believe in removing gluten, dairy, etc if there are no signs of intolerance or just because it is the newest fad going around.

Snacks

I do not buy junk foods very often. When I do actually buy them, they are gone within about 24 hours. It is a very special treat for us. I am a strong believer that if it is not in the house, you can not eat it. Finding my keys, loading 2 kids and our Service Dog In Training into my truck, just to buy a bag of chips….yea, look for that.

My kids LOVE their snacks. Especially Reine. I make sure that what they snack on is just as important as the meals they eat. We put Reine’s snacks in half pint mason jars. She is able to pick out what snacks she wants and they are in the perfect portion size for her. There is no wasting of food and the snacks are nutritious.

Some of the snacks my kids eat….

  • Fruits
  • Nuts
  • Plain Greek yogurt maple syrup (sometimes fruit)
  • Cheese
  • Hard boiled eggs
  • Popcorn
  • Veggies
  • Hummus (Reine eats it with a spoon!)
  • Whole milk
  • Oatmeal
  • Dried fruits
  • Oatmeal bars
  • Cottage Cheese
  • Veggie muffins
  • Egg muffins

Vitamins and Supplements
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Reine does not take any vitamins or supplements. Actually no one in my home does. Reine gets tested regularly for vitamin and mineral deficiencies by her doctors and specialists. She was lucky enough to inherit my Compound MTHFR.  Because the body has a hard time absorbing Vit B and Folate, supplements are usually prescribed. Reine’s level for both the Vit B and Folate were perfect without supplementation.

At Reine’s last visit with her Developmental Pediatrician, she was reviewing test results from recent blood work ordered by Reine’s other specialists and doctors. She was in awe of the results. She kept asking me if Reine was on supplements or vitamins. When I told her no, she asked when we stopped taking them. I told her we never took them in the first place. Next she asked if Reine was taking supplements while being tested. I once again told her that we do not take supplements or vitamins. She was amazed with the results of the tests. She once again commented on the diet that Reine eats.

Probiotics  

Reine does not take commercial probiotics. Just like with vitamins and supplements, no one in my family touches them. We eat fermented foods, dark chocolate, plain Greek yogurt, and other all natural probiotics on a daily basis to help our guts stay healthy. If we have to take an antibiotic, we double or triple the amount of all natural probiotics to help restore the bacterial balance in our guts.

Cleaning and Chemicals 

In addition to the diet, we also stopped using commercial cleaners, scented candles, plug ins, Fe-breeze type sprays in our home. Using vinegar, water, and essential oils to clean almost everything with instead. What we can not get clean with the vinegar solution, we use baking soda, peroxide, and citrus to do the job. Our laundry detergent is also homemade.

I love smelly good stuff like candles. When I gave up the fake scented stuff, I began to diffuse essential oils in a diffuser instead. We have diffusers all over our home. We just trade up the scents to what ever we want. I no longer use wicked candles at this time. I use battery powered candles. Reine and lit candles scare me.
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Even my “perfume”, body scrubs, lotions, and deodorant are all natural.

Cyclic Vomiting Syndrome (CVS)

For as far back as I can remember, Reine has woken herself up in the middle of the night about every 4-8 weeks vomiting in her bed. She then continues to vomit for anywhere between 30 minutes to about an hour, sometimes longer. No fever, no weird behavior or any symptoms that we are aware of. This has been going on for so long that we actually have a routine in place for when it happens. After we get her bed changed, the trail that leads from the bed to bathroom cleaned up and scrubbed, and finally Reine herself cleaned up, she goes to bed and wakes up in the morning completely normal.

No one could tell us what it was or why it was happening to Reine. Doctors and specialists we spoke with were just as clueless as we were. They did not know who to send us to to find out anything. Countless research I did online ended in frustration as she did not have symptoms that many others experienced with her episodes of vomiting.

In a post on a FB group I belong to, a mother posted about her 2 year old daughter waking up and vomiting in a pretty regular pattern. She was wondering if it could be Cyclic Vomiting Syndrome (CVS). I had never heard of CVS before this post. I responded to her post with Reine’s story. When I looked up CVS, I figured it was going to be another dead end. About this time another Mom responded who has CVS. She sent me a private message with a link and  the kind of specialist we needed to make friends with. A gastrointestinal specialist (GI)

The more I researched CVS, the more I saw Reine. I immediately began searching for a Pediatric GI specialist who not only specializes in unusual stomach disorders but they also needed to specialize in special needs children. Not as easy as it sounds.

Reine’s autism gives her a seriously HIGH threshold for pain because her brain registers pain differently. This is normal in girls with autism. She can’t tell us yet if she feels certain things or not so obvious symptoms that those not on the spectrum would be able to register, feel, and express to others.

Example…4 months ago she told us her throat hurts directly after the vomiting. This is a normal reaction for anyone that vomits maybe once or twice. This would be especially true for anyone that vomits for close to an hour straight. But Reine did not understand or register what that feeling was. So, she never told us.

Until 3 months ago, she wasn’t able to tell us she was scared during these episodes. She would do a continuous banshee wail unlike anything we had ever heard in our lives. We could not get her stop making the wailing sounds until right before she would fall back to sleep. No amount of soothing, comforting, etc could get her calm down. However, as soon as she was able to tell me she was scared and I acknowledged her (verbally) about her being scared, she stopped making the sound after a couple of minutes. I was able to comfort her in the way SHE needed. She finally broke through to me. I already knew she was scared. Hell, anyone would be. She needed for me to repeat her words back to her.

Just 2 months ago, she was able to tell us her “tummy hurts badly” during her episodes. This was something I just assumed. Involuntary muscle spasms are never not painful. However, with CVS, the stomach pains can be excruciating almost crippling. For Reine to actually say it hurts means it is excruciating. I now apply essential oils to her abdomen.

During the last episode, she was able to tell us that the showers we do to get the vomit off of her, are extremely painful and feel like “nails being hammered into her skin” because of her sensory processing disorder. I always wondered if it was painful or too loud for her to process, or a combo of both in the past. We always just give her a bath. Even in the bath, there is often a struggle with washing or rinsing of hair and body. However, a bath is not possible in this situation. Now, I hold her in the shower tight against me. We wrap a towel around her body. As she relaxes, I am able to let her stand in the shower and scrub her down. We hold the towel up as a barrier between her body and the shower water.

It seems that with each episode lately, I am able to unlock another part of Reine’s CVS symptoms and her reactions to them. This may allow us, in time, to actually prep and help her when she has another episode.

What exactly is CVS? How do you test for it? 

CVS is a disorder that affects patients of all ages and is characterized by recurrent episodes of vomiting separated by symptom-free intervals or baseline normal health. Episodes typically range from 2 hours up to a week or more. These episodes usually hit in the early morning hours between 12-7 AM. They often drool or spit as they have excessive thick mucus with episodes. They can also have extreme thirst. Many experience intense abdominal pain. Some may have a headache or no headache at all. Other symptoms include low-grade fever and diarrhea. Prolonged vomiting may cause bleeding due to irritation of the esophagus and stomach lining. Another concern is dehydration.

There are no actual tests or blood work that can be performed to diagnose CVS, causing many with it to be misdiagnosed with a stomach bug or food poisoning. GI specialists trained in “unusual stomach issues” look for certain patterns. They will run series of tests to rule out all other disorders or diseases that may cause the same symptoms as CVS before diagnosing anyone with it. Reine’s GI did a blood work panel and also ordered an Upper GI with contrasting dyes to make sure there are no abnormalities in her abdomen and her blood levels are where they should be. He also spoke with us in great detail about her diet, lifestyle, family history, and daily habits before confirming the CVS diagnosis.

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Cyclic Vomiting Syndrome is often linked to abdominal migraines. These are migraines are thought to be SO strong that the mind can’t register the pain but the rest of the body does. This is thought to be especially true in children. Reine’s episodes right now only last a couple of hrs. As she gets older, this can change. There is a chance her episodes could last up to a week or more, or she will outgrow her CVS completely, or that she will eventually show signs of “regular” migraines.

There is no cure for CVS. Treatments are VERY limited and currently consist of….

  • Medications that may help lessen the effects on the body or stop the progression of some episodes.
  • Darkening of the room and limiting sounds to allow the body to rest and sleep through the episode.
  • Possible hospitalization and IV fluids.
  • Discovering triggers that cause the episodes and eliminating as many as possible.
  • Changing diets to eliminate artificials, preservatives, food colors, nitrates, and nitrites (to name a few).

Finally having a diagnosis and an understanding of what is happening with Reine is worth more than I can tell you. We will have to monitor Reine closely for dehydration, making sure her electrolytes are in balance, and a few other things during her episodes. We are now looking for her triggers.