CoQ10, Irritability and Vitamin B2

These past few weeks have been awful with Marley.  Her third grade teacher had about exhausted every trick in her book.  The resource room teacher was afraid of Marley just coming into her room to get out of her daily activities.  She expressed concern to me when Marley confided in her she “hated school.” 

Marley has been irritable, miserable, anxious and sometimes downright defiant.  Like when she got up from her desk at school and turned to face the class and said, “I’m outta here!” and left.  Who knows where she was going…she just didn’t want to be there anymore.  She screamed and cried about everything.  Every single day I was getting a call from the school.  Their absolute last ditch effort to get her to comply…..mom’s threats of taking something cherished away. 

I knew her anxiety was through the roof when she started chewing on her fingernails again and simply tearing off the skin around her fingers.  We had worked so hard to get that in check earlier this year….to see it back again was heart-breaking.  Things were simply getting worse despite my best efforts to reward, bribe, and even threaten her with removal of cherished items.   

When things like this happen, I always look to what has changed.  An environmental factor?  A new supplement?  More expectations placed on her?   Maybe.

Could it be yeast?  No…we’ve had that in check for a while and she has been on Syntol with good results before this started.  And no recent antibiotics to speak of.

Could it be PANDAS?  No, she hadn’t been sick and there wasn’t any OCD about it.

Then I thought back to when I started her on CoQ10.  It was about a week before all this started to happen.  Since Marley has low energy and CoQ10 is excellent for mitochondrial issues, I thought this would be a slam dunk….but I was beginning to think again. 

So, I took her off the CoQ10 for about 3 days.  She was a bit less irritable but still cranky.  So back on it she went.  Then…the shit hit the fan.  She had a meltdown at school when another student got to publish his story on the iPad.  She walked out of the classroom again. I was called and went over to the school (with my 2 year old in tow) to talk her down.  After I left, she escalated again and had to eat lunch in the principal’s office and spent the afternoon in the resource room.  She was a mess.  It was a Friday.  There was an emergency team meeting called for the next week.  What were we going to do?

But…by that point, I was pretty sure I had it figured out.  It was the damn CoQ10.  But why?  All my research said that a rare side effect of CoQ10 was irritability, but no reasons why.  My husband said – “Pull it!  Don’t give her any more” and of course I didn’t give her anymore, but I needed to know why this was happening.  If only I knew why, I could fix it.

I started to dig.  Thank God for my network of biomed moms.  One told me to go directly to the electron transport chain and look there.

Turns out that CoQ10 works to metabolize succinic acid, which requires B2 and CoQ10 to be metabolized in the electron transport chain. Once it uses more B2, then it decreases the supply of B2 available for the metabolism of other amino acids to make neurotransmitters, especially, serotonin.  And we know serotonin is the "feel good" neurotransmitter.  Serotonin plays an important part in the regulation of learning, mood, sleep, etc.   And experts say serotonin may have a role in anxiety, migraines and appetite.

So I pulled out her last Organic Acids profile from last year.  Sure enough….there it was.  Her suberate was high meaning that she needs more B2.  Riboflavin or B2 also helps to metabolize fatty acids.  Out of curiosity, I looked back at her labs over the years at her suberate levels.  It was high dating back 7 years! 

I took a week doing this research and meeting with her team at school…but I was pretty sure I had it under control.  She was off the CoQ10 and not so irritable but still not very happy.

And so, starting on Saturday morning, I started her on a broken down form of Vitamin B2 called Riboflavin 5’-Phosphate Sodium.  She was a bit better on Saturday.  Sunday, she was happier.  By Monday, she was excited to go to school and read her non-fiction book she wrote on Chipmunks to an audience of parents at her author appreciation day.  (She is NEVER excited to go to school on Mondays.)  By Tuesday afternoon, I got an e-mail from her teacher saying…”whatever you are doing at home--- keep doing it!  Another awesome day at school today!”  No more nail biting…no more anxiety…no more crankiness. 

Once her B2 levels are up to sufficient levels, I should be able to reintroduce the CoQ10 without problems.  I’ll give her body time to get adjusted before I go there again. 

And there you have it.  When I say that I treat my daughter’s autism using biomedical interventions…this is what I mean.  We need to understand what is going on in the body in order to treat it.  Simply throwing an antidepressant at the problem does not allow the body to heal on it’s own.  And if I would have taken her to a psychologist or neurologist that’s what I would have gotten.  Her neurologist flat-out told me he doesn’t know how to read the amino acid tests and that is the lab tech’s job.  (Needless to say, he is no longer her neurologist.)

Well, in our house, it’s MY job to read the amino acids tests and do the research because unfortunately, no one else is going to do it. 

Here’s my girl reading her non-fiction book on Chipmunks!

Turning Forty

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Today, I am forty.  

As we grow, we tend to lump our life into decades.  The childhood years, the teenage years, the twenties when you are finding yourself, then the thirties….the childbearing years.  I had my kids in my thirties, but they were not the happy, go lucky, raise your normal kids type of years.  No…. my thirties were more about dealing with medical diagnoses of my children. 

My thirties started with the birth of my oldest child, now 10, and her diagnosis of Cerebral Palsy and later Autism.  It was the Autism that truly rocked our world.  

Growing up in a family of five myself, I was taught to do what was right. (Not that I always did.)  I was taught to use my manners, be kind and work hard because that is how you get ahead in this world.  My mom taught me to stand up for what I believe in.  My dad taught me to love fiercely.   And my parent’s relationship taught me to stick with my husband…even when things get hard.

But then, life got ugly.  In my thirties, I started to see things for what they really were.  I watched my beautiful, engaged, babbling 12-month-old daughter spiral backward in her development.  By 18 months old, we had lost her to autism.  There is not much that can break your heart like that.  Having your child there…but not there.  Watching other kids develop so quickly and leave her behind while she was lost in her own world. 

But in reality, I’m sure all this happened, in part so my soul could grow.  I needed to learn to lean on my husband for strength when I had no more.  I needed to learn to trust him because he loves her too.  I needed to love fiercely, like my dad, so I could see the truth.  The truth in what really happened.  I needed to work hard to get my daughter back.  I needed to develop the strength to stand up to doctors who simply wanted to medicate my two year old.  I needed to teach myself everything, just as my mom has in her life, so that I could learn HOW to bring her back to me.  

Little did I know that I would spend the bulk of my thirties learning about gut flora, methylation, candida overgrowth, nutrition, adrenals and mitochondrial dysfunction. If I had known in advance, I certainly would not have majored in business and marketing in college. I have spent the last ten years changing the way my family eats and lives life.  

There have been many tears and long nights in the past ten years….but I have also felt intense gratitude and incredible highs when she started to come back to us.  I now know my daughter…. something I feared would never happen.  I can hear her voice.  She tells me when she is nervous, angry or happy.  She tells me that she loves me.  She gives me unprompted hugs and tells me she is sorry if she has made a day particularly hard for me. 

During all this, I have had the honor of getting to know an amazing group of mothers.  They are autism moms.  And they have shown me the way.  They have taught me to read medical studies on my own.  They have held my hand when times got tough and helped me find answers to my daughter’s problems.  And these answers, incidentally, also helped my second child with sensory processing disorder and my son with severe food allergies.  And now that my daughter is recovering, I have the honor of holding the hands of newly diagnosed parents when they need me.

Needless to say, I learned more lessons in my thirties than I have my entire life.  And I feel stronger for it.  My gray hairs and crows feet are earned.  I guess my parents knew what they were doing when they named me Kelly.  In Irish the meaning of the name Kelly is: warrior.

And now that I have looked back, it is important to look forward.  I try to take one day at a time because when you live with autism, you never know what tomorrow will bring.  But I am optimistic.  I am living in a time when parents are demanding answers.  When passionate parents are healing their own children despite the odds.  And hopefully, we will see a cure in my lifetime.  There are already promising recovery treatments, although the results vary from child to child.  Despite my wariness of the medical community because of their denial of vaccine involvement and their insistence of the use of anti-psychotic drugs, I am excited to see what the next ten years will bring.  Functional medicine and Epigenetics are on the rise which is very promising.

As my husband always says…it is not what happens to you…it is how you react to it.  It is all about attitude.  And I love my children fiercely and that will never stop.  I will continue to fight for them, enjoy them, learn from them and hopefully continue to heal them.  God willing.  Here’s to the next decade of healing.  

Solving the Feeding Riddle

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Eating.  Who would have guessed that such a simple, fundamental thing could cause such headaches?  My first child…the one with autism…was a great eater.  And I thought I had seen it all with her.  But my second child brought a whole new set of challenges to my life.  My sweet Skylar was diagnosed with sensory processing disorder at only 15 months old and her biggest symptom was feeding….or lack thereof. 

So what do you do when you have a child that won’t eat?  Or is so picky that she only eats 5-8 foods?  And they have to be prepared a certain way….at a certain temperature….at a certain time? 

I found out the hard way that solving the feeding riddle is not easy.  There are a lot of components.  For example:

If a child has an aversion to textures….like anything not crunchy or not 100% puréed or anything with mixed textures like soup, then they likely have an oral-motor problem.  If the child gags on food, then the child likely has a developmental delay in swallowing.  Did the child learn to move food around their mouth properly?  Likely not.  As a result, the child gags for fear of choking. 

However, there are other reasons for gagging too.  There are medical reasons like reflux or Eosinaphilic Esophagitis.  There are behavioral reasons.  Sometimes these are self-taught behaviors when the child is experiencing pain.  There are several sources of pain including constipation, chron’s disease, celiac and others.  They learn to be very wary of food very quickly because food is associated with pain.  And lastly, there are sensory related issues.  Occupational therapy can help a great deal with feeding in some kids.

Here are some tips from our Occupational Therapist that may help with your child:

1. Put one thing on the plate at a time, so not to over-stimulate the child visually. Add more as tolerated. 

Skylar is shown below with only a tiny amount of rice on her plate.  That is all she could tolerate seeing at once. 

2. Use salt. Salt stimulates the salivary glands and makes you hungry.  Starting a meal with something crunchy and salty can actually warm up the mouth and get it ready to eat.  And most kids like salt.  Adding it to veggies or other food is really not a big deal. You can always pare back.  

3. Find a spread they like and add it to fruit & veggies to get them to try new things. In the beginning, we used Nutella on sliced apples, mangoes, etc.  My daughter would try almost anything if it were doused in chocolate. 

4. Do the “smell it, kiss it, lick it” approach with each new food. Just getting over that hurdle is big for some kids.

5.  Use a reward system.  A sticker chart works well.  Work on one food every day until he or she will eat it consistently.   

6.  Practice eating in the morning or afternoon when the day's sensory activities have not brought the child to exhaustion.  Dinner-time is particularly hard.  And practice in a quiet environment with soft soothing music when the child is hungry.

 Here is Skylar at feeding therapy.

I’m here to tell you that juggling a non-verbal child with autism and a toddler who does not eat is no walk in the park.  Let’s just say that we spent a LOT of time at the Occupational Therapist’s office.  She would go to parties and not eat anything because she simply could not eat in a stimulating environment.  This would lead to meltdowns.  People were confused as to why she would not eat.  I would usher her to a corner to feed her anything just to get something in her to sustain her until we got home.  Chocolate cake. Whatever.  I just needed her to eat.  When we got home, I worked on feeding with her constantly.  Hours every day. 

And so, my daughter with SPD and feeding problems did four years of OT and after all that could finally eat almost half of a turkey and cheese sandwich and a tiny bowl of mac & cheese (at different times of course), but she still struggled with most other foods and it took her a LONG time to eat.  In all other sensory areas, she was thriving.  So we were “graduated” from OT and off she went to kindergarten.  But then the headaches started.  At least once per week.   And the tummy aches that she had always complained of got worse.  And dinnertime was still a battle EVERY day. She was five years old.

I had to understand what was happening.  I finally ran an IgG blood test on her to check for food sensitivities.  Her test came back loaded with them.  Twenty-six of them ranging from severe to mild.  (A sure sign of leaky gut.)  The severe ones included gluten, dairy, turkey and peanuts.  Oh NO!  No more turkey and cheese sandwiches or mac and cheese.  We were back to square one.  My heart dropped.  FOUR years of work for nothing!  I was scared to death.  She was already stick skinny and barely ate.  She ate about 8 different foods.  I had visions of a feeding tube that I tried to suppress.  By this time, she was nearing her sixth birthday.  I sat her down and explained that the test showed that she is allergic to some foods and she is going to come to the store with me to pick out some new foods she would like to try.  She was reluctant, and after crying agreed to try.  My oldest (due to IgE food allergies) was on a gluten free, dairy free, egg free diet, so I had some experience in this area. 

It took some coaxing for her to try “new” crackers and “new” chicken nuggets, but my child who had always been severely averse to trying new foods did very well.  Yes…I bribed her with small toys the first few times to get her to try the foods, but after that, she did well.  In fact…the strange thing was, that as the months passed, she slowly grew more willing to try new foods.  And oddly, her headaches were gone.  Never to return.  As were her night terrors that she had suffered from for years.  And thankfully, she started to gain weight.  But she still had tummy pain.  Six months later, the next stop….the pediatric GI doctor.

They did a complete workup and the doctors were concerned that she may have Eosinaphilic Esophagitis (EoE).  Her older sister has it, yet Skylar seemed to display the clinical signs:  drooling, sometimes regurgitating food, very selective diet, extremely slow eating.  Although these things had gotten better since her diet change, it was still a problem.  They decided to do an endoscopy.  Thankfully, it came back clean.  However….she was off all allergenic foods at the time of the endoscopy, so we truly don’t know if she does have this problem or not.  Her sister’s EoE cleared with removal of allergenic foods.  

This is Skylar after her endoscopy.

In addition, an x-ray showed she suffered from severe constipation and blockages in her GI tract.  This was shocking to me as she had regular bowel movements everyday.  Apparently, just not enough.  After several weekends of cleanouts with lots of magnesium citrate, she started to eat better and her complaints of tummy pain started to wane.  A second x-ray still showed she was still moderately constipated.  We continue to work on clearing her out and getting her pooping normally.  And through all of it, her eating has gotten better.  She started to eat granola cereal with rice milk!  A mixed texture food.  The one she struggles with the most.  Then she started eating soup.  We started with the broth.  Just one or two spoonfuls.  Then she ate the GF noodles and chicken out of the soup.  Now, she is finally starting to eat them together. 

Then we discovered Syntol.  A probiotic and digestive enzyme that targets yeast.  A wonderful side-effect is hunger.  It works best when you start on high doses. (12/day, then work down) My child is now coming home with everything eaten from her lunchbox! This is an enormous feat.

Lastly, I have started her on a zinc supplement which has helped her in trying new foods.   The major zinc protein in saliva is called gustin.  Gustin influences your sense of taste.  Because of this relationship between zinc and taste, and because taste and smell are so closely linked in human physiology, impaired sense of taste and smell are common symptoms of zinc deficiency.  Supplementing with zinc can help kids with feeding problems.   Click here for the study.

We have always used liquid zinc because if you are zinc deficient, then you can’t taste it.  I am waiting for the day that my kids say…”yuck!  This juice tastes gross.”  That is the day I will know they no longer need the zinc. 

Please don't mix the zinc with an acidic juice, like orange.  If you do, it is sure to give the child a tummy ache.  

This is a long battle and we are still working on it, but she eats with the family now.  She eats what we are eating.  It still takes her longer and she eats less than the rest of us, but she has made huge strides with these interventions.  Here she is eating her gluten free spaghetti dinner with a full salad.  She ate the whole thing!  

Crossroads

Kids change you.  They do.  They make you love more, love deeper, give more.  They make you fear the unknown and they bring out a part of you that you didn’t realize was there.  

But what happens when you realize that your perfect child isn’t so perfect?  He or she suddenly isn’t doing the expected things.  They are no longer making eye contact or they are constantly ill.  The dark circles under their eyes scares you and they seem more content to play by themselves than with others.  They may be constantly constipated or have chronic loose stools.  They can’t sit still for more than a moment without some sort of high energy, colorful TV show to keep them still.  And even then, sometimes, they just jump and watch.   

 You take them to your pediatrician who says, “let’s wait and see” or  “she is still young” or “boys are rambunctious, it’s okay” or “lots of kids are constipated, it’s normal.”  You press on and take them to a specialist, who tells you that your life will never be the same because “Your child has Autism.  He may never talk.  He will never be the same as other kids.”  Your heart is broken and you can barely breathe. This is your baby.  How could this be?  How could THIS be?

It is at this point that you have to make a decision.  This is the turning point.  This is the crossroad.  Do you give your child the antipsychotic drug that was prescribed to them by their prestigious doctor?  Or do you search for other reasons for their erratic behavior?  Do you scour Google for any and all things that are helping other children with autism?  When you run across that article that says, “My kid is better because I treated his GI symptoms!” what do you do?  Do you say….but my doctor says that a GFCF diet doesn’t work.  Do you say it’s too hard to try?

That is the thing that is different about Autism.  If your child has cancer, there is a protocol.  You do A, B and C.  But with Autism, it is go to Speech and Occupational Therapy, take this drug and I’ll see you again in a year.  What the hell?  Really?  It is left up to the parents to find your own way.  And all kids with autism are different.  They have different symptoms.  Some may have Cerebral Folate Deficiency.  Some may have methylation gene mutations.  Some may have thyroid problems or gastrointestinal problems.  Some have food allergies.  Some have eosinaphilic esophaghitis.  Many have heavy metals in their bodies that they cannot detoxify. And MOST have mitochondrial dysfunction, which makes them very susceptible to toxins.

Our babies do not need anti-psychotic drugs…they need medical intervention.  They need to be tested for all of these things and more.  They need to be treated as sick children.  Because truly….autism is a set of behaviors.  These behaviors are caused by SOMETHING.  And unfortunately, it is up the parents to find out what.  It is up to us to coordinate several doctor visits and figure out where to send them. 

Yes, kids change us.  And being a parent of a child with Autism makes you a fighter.  Because if you don’t fight for your child’s health, no one will.  

Autumn Salad & Pear Crisp

I sometimes post pictures of our dinners on facebook.  This last one got lots of recipe inquiries so I am posting it here for all you people who are looking for a great gluten free, dairy free, egg free, nut free, soy free, delicious dinner idea.

AUTUMN SALAD

This recipe is easier than you think, super nutritious and delicious.  This recipe was born when I had some friends coming for lunch that are on the Paleo diet.  We liked it so much, we kept the recipe around!

Ingredients:

Roast Chicken - I usually put an organic, whole chicken in the crock pot with my favorite seasonings and let it cook on high, breast down for about 5 hours, then use some of that.  But you can also buy a rotisserie chicken (just make sure it from a place like whole foods....you would not believe what most places put on their rotisserie chickens!) Or, you can just saute some boneless chicken in a pan, or grill some outside.  I use about a pound.  Or about 1 breast and 2 thighs.

One small Butternut Squash - peeled and cubed, coated with olive oil and salt & pepper, then roasted at 400 degrees until fork tender.  (about 20-30 minutes)

Broccoli - one large head, or two small heads....florets steamed.

One large bag of Organic spring salad mix

Your favorite Balsamic Vinaigrette dressing.  (Or EVOO mixed with balsamic vinegar w/S & P)

**If you slow cook a whole, organic chicken, it is actually very budget friendly because you will only need about half of the chicken for your recipe.  Pull the rest of the chicken off the bones and store in the fridge for another meal or a soup.  Then leave the bones in the crock pot, add one onion...peeled and cut up loosely, a few peeled carrots, a few celery sticks, a bay leaf, and maybe some fresh thyme if you have it.  Then fill to the top with filtered water.  Cover, set on low and let it simmer over night.  Strain it in the morning for a delicious, healthy broth for a soup....and now you are already half done with your dinner for next night!  The options are endless for home-made broth!  I just store the broth in the fridge until I'm ready to make my soup that night.

To make the salad:  Simple pour the salad into a large bowl, then top with squash, broccoli and chicken.  Then coat with your favorite balsamic dressing and toss.  YUM!

PEAR CRISP

I adapted this recipe from one I found years ago in Cooking Light:

Streusel Topping:

1/2 cup GF flour (I use a combo of rice flour, arrowroot and tapioca flour)
1/2 cup GF oats
1/4 cup brown sugar
1 tsp cinnamon
3 tbsp of soy-free earth balance butttery spread OR coconut oil - melted

The base:

1 cup of dry red wine - use one that you like because the flavor will be concentrated!  I like cabernet sauvignon.
1/2 cup sugar
rind of one lemon - I use a microplane.
1 tsp ground cinnanmon
4 peeled and thinly sliced ripe Bosc pears

To make:

Preheat oven to 350.

Combine wine & sugar in a large skillet over medium heat and simmer until the sugar dissolves.  Add the pears, lemon rind & cinnamon to the skillet and stir to coat, then simmer for about 15 minutes or until the pears are tender.

While the pears are simmering, combine the flour, oats, brown sugar and cinnamon in a small bowl.  Then add the melted oil or soy-free buttery spread until the mixture is crumbly.

When pears are done, divide the pears into 5 or 6 , 6oz ramekins.  Then top each ramekin with a little streusel topping and bake at 350 for about 20 minutes on a cookie sheet or until bubbly.  Delicious!

Bon Appetit!

Looking in.....

Now, I have been on both sides. 

I have lived the hell that is autism.  The hell that no one understands that has not lived it themselves.  When your child cannot talk at all or is not on the same level as other kids.  When your child cannot bear changes and melts down if something is out of place.  When your child puts everything in their mouth and is off running away in a split second.   You barely sleep, because they don’t.  You barely eat because you are always preparing “special foods” because either they cannot tolerate dairy or gluten or more, or because they simply will not eat anything other than their chosen few foods.  You don’t have time to spend with your other children because this one child demands so much.  You can’t shower because one second away from watching the child could end in disaster.  The ER.  Or worse.  You don’t even have time to feel anything.  To cry.  To mourn.  And perhaps that is a good thing.  Your survival mechanisms kick in….but for how long?

Truly, nothing helped us until we got medical help from a qualified DAN! Doctor that asked questions about my daughter’s health.  Ran labs.  Stool tests, blood tests, urine tests to figure out WHY this was happening.  Our kids are SICK.  And they deserve the best medical treatment and they deserve a doctor that will look at the causes of their behavior instead of putting them on anti-psychotic drugs.

Yes, I am upset today, because even though my daughter is much better now, another child that I love so dearly is not.  A child very special to me.   A young child declining more every day.   And his mother is hurting in the exact same ways I did.  And as much as I want to just drop everything in my world and go help her, I can’t.  I am still healing my own daughter.  I have other kids that need me too.  So she is left in her own version of hell until she is willing to spend gobs of money and time to drive him all over kingdom come to an array of doctors to figure out the puzzle.  His particular brand of ASD.  Because there are different triggers for every kid.  Toxins, vaccines, MTHFR gene mutations, parasites, leaky gut, thyroid problems…and the list goes on and on. 

When will the madness end?  Why are we losing more and more kids every day?  My heart hurts so bad, it is broken.  So, now I have been on both sides.  Both living it and looking in, wanting so badly to help but feeling helpless myself.

Double Digits

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Oh, wow.  My first born child is turning ten.  But she is not your average ten year old.  She has mild CP, Autism, food allergies, Eosinaphilic Esophaghitis and a host of other diagnoses.  She is my fighter.  She is my teacher.  She is my inspiration. 

So now that she is turning ten, and making me feel like an old lady…..I would like to have a look back, so we can all recognize just how far she has come.  She is living proof that kids with autism can make very real progress with biomedical interventions.

The First Year

She was born after 29 hours of labor at 33 weeks gestation at only 4 lbs, 3 oz and for reasons unknown, was diagnosed with a grade 4 IVH….a brain bleed that went into two quadrants of her brain affecting her motor skills.  She was a colicky baby, which we later found out was due to severe food allergies including dairy and egg. 

Despite having these early diagnoses, she was a happy baby.  She loved music and began to say words at 11 months old.  She could say “Hi”, “bye”, “mama”, “dada”, “kitty” and others.  She could identify letters of the alphabet by 12 months old by pointing and verbally say some letters too.  She was connected and laughed and interacted.  She was laughing at us by age 5 months.  Her baby book actually says, “She loves all little kids.  She is VERY social.”  Little did I know what was coming.

Despite her left side weakness due to her brain bleed, she crawled-belly off the floor-by age 10 ½ months and stood by herself at 11 months.

Because of her brain bleed, she had to have strabismus eye surgery on both her eyes at 12 months old.  The day before she went in for eye surgery with full anesthesia, she got 2 more shots…chicken pox and polio.  I didn’t give her body a chance to detox or get over a live vaccine before I subjected her to whole new host of drugs for her body to detoxify. 

We know now, that Marley’s methylation pathways are blocked and it is hard for her to detoxify anything…..but you can’t go back….  

Marley turns ONE…the second year of life

By watching home videos, I can see that she was still “with us” at age 12 months…and she goes on to get her Prevnar & HIB at 15months. 

We start her in OT because she is mouthing everything now and still not sleeping through the night.  But she is responding to us, looking when we call her and enjoying company.  At 16 months old, she starts to walk, despite her physical limitations.  She is a trooper.   She is a joy.

At 18 months old, she receives her MMR and fourth DTaP and her world starts to crumble. The Special Infant Care Clinic that has been following her due to her prematurity notices problems at her 19 month old check-up.  Her eye contact starts to disappear.  She won’t do things on command now.  She no longer points.  She no longer talks or babbles.  She is very busy, moving from one thing to another too quickly.  Her cognitive age level is 14 months…it hasn’t moved since the last time they saw her only 4 months earlier.  And then they tell us…she likely has autism.

Age 2

Life is spinning out of control.  There are doctors, diagnosis, therapy and she only seems to be getting worse.  She gets sick so easily.  She has chronic loose stools…  sometimes 10 in a day. Each virus brings on a new level of awful behavior.  Then the meltdowns start.  We are confused by this terrifying behavior.  She hurts us.  She hurts herself…and for no apparent reason.

No one can help us.  The “best” doctors tell us there is nothing we can do other than occupational therapy and to not have any other children.  But my husband & I know that there have to be answers.  That is when we discover the DAN! movement.  (Defeat Autism Now!)  Their novel idea was to treat the child’s medical problems and the autism will get better.  I attended my first DAN! conference when Marley was only 2 ½ years old.  “Heal the gut, Heal the brain” became my motto.

We start new diets…first Gluten and Casein free and when that didn’t work, the Specific Carbohydrate diet.  JackPot!  A healing crisis hit and her bowel movements started getting a little better.  We started her on P5P…she began pointing to things on demand.  We started Magnesium and she started following commands.  DMG stopped her tantrums, but made her very hyper.  Omega 3 increased her focus.  Vitamin A decreased her looking out of the corners of her eyes.  We were on our way!  There was a light at the end of the tunnel….

Age 3

She gets her formal Autism diagnosis and her little sister is born.  We continue on the SCD diet.  We start mild hyperbaric oxygen therapy, and after only 10 dives, she says her first word!  Well…her post-autism first word. It is “elmo.”  And she is finally potty-trained after only 10 dives.  Her allergist tells us to go ahead and give her eggs & milk because there only seems to be a small contact allergy.  We refuse the milk, but start to give her eggs again.

 Age 4

Life is not easy…..we continue with a gluten free, casein free, sugar-free diet, supplements and more hyperbaric treatments. We do foot baths where we see metals leaving her body through the bottom of her feet. She begins to speak in phrases and communicate to me about her day at pre-school.  Her most common phrase is “tummy hurts.  Boo boo kiss.”  She gets Botox injections in her left leg to help relax the muscles and she regresses horribly.  Again…she could not detoxify the toxins put into her bloodstream and it sends her spiraling back all spring.

 Age 5

She starts kindergarten and life seems like hell on earth.  I have to physically carry her into school kicking and screaming…to go to a self-contained autism classroom, where she dreads the sensory overload, and spends most of her day in a tent with therapists trying to coax her out.  She is still a very sick little girl.  She complains daily of tummy pain and we do trials of Actos and Prevacid with no improvement.  B12 shots make her crazy.  But she is still making very real progress with hyperbaric oxygen therapy.  It is our life-line right now.  She is gaining better social behaviors and beginning to tolerate her little sister more. 

By now, I have caught on to the fact that her little sister is having major sensory problems too and I have to stop vaccinating Marley's little sister all-together after she has a bad reaction to her third DTaP shot at 12 mos old.  She screamed for almost 48 hours straight and refused to eat the crunchy foods she once ate.  She now only eats 100% puréed foods.  I see Marley’s little sister going over the same cliff and I put on a full court press to stop and reverse the damage.  It is not an easy time for our family.  By the way…do you think her pediatrician reported her vaccine reaction to VAERS?  No.  She did not.  Even after I put my complaint in writing to the pediatrician’s office.  

Age 6

After begging Marley’s GI doctor for help for a year, he reluctantly agrees to do a colonoscopy and endoscopy warning me that he is 95% sure they will find nothing.  He was wrong.   They find evidence of chronic constipation and inflammation in the colon and eosinaphilic esophagitis in the esophagus.   This finding leads us back to the allergist who finds her highly allergic to cats, dairy, shrimp & eggs.  Yes…EGGS….the same eggs we were told by the allergist years ago to eat because she was no longer allergic.  Those eggs…. making her so very ill all these years.  We stop the eggs.  We get the cat out of the house and viola….her behavior dramatically improves.  It is a night and day difference.  

Age 7

Marley is beginning to use full sentences to speak, but most often, she speaks to herself…simply “scripting” or reciting lines from TV shows.  We hire yet another undergraduate student to work with Marley after school.  This young lady makes a very good connection with Marley and both of them grow from the experience.  Marley is beginning to have interest in social interaction and does her best to speak to other children now…although it is mostly about things the other children do not understand or have interest in.  Marley is reading very well now.  And Marley’s little brother is born.

Age 8

We are finally in a place where Marley is doing well physically.  She is no longer chronically constipated.  Her follow-up endoscopy shows that there are no more eosinaphils because we have removed the allergens from her diet and environment.  She finally looks healthy.  Gone is her pale, grey skin and dark circles under her eyes.  She is now engaging in pretend play.  She is having “tea parties” with her little sister and acting out her favorite tv shows.

However, she still cannot mainstream at school because she simply cannot take the sensory overload that comes with a mainstream classroom.  She is still in a self-contained autism class at school.

Age 9

We start Marley in the Brain Balance Program in Cary, NC.  The transformation is remarkable.  She is now able to hold conversations on the telephone because her auditory processing speed is so much better.  She is able to tolerate loud noises much better.  She no longer requires very spicy foods…her sense of taste normalizes.  Her flexibility becomes so much improved that the school starts to try her again in a mainstream classroom part-time.  She does so well, that the recommendation comes for her to be fully mainstreamed for school in the Fall.  

Age 10

So here we are.  My lovely Marley is in a mainstream third grade classroom.  The transition has been smooth.  Her classmates seem to accept her for who she is….oddness & all.  They even are a little protective of her.  She is keeping up with her schoolwork and she likes school.  Her sister is her best friend.  They play make-believe all the time.  They sing songs together.  They play board games.  They tell jokes.  And Marley even likes her little brother.  She thinks he is funny. 

Personally, I know her little brother & sister owe her a debt of gratitude for paving the way.  She came first and we learned lessons the hard way with her.  With my subsequent children, I knew better.  

Marley is my hero.  She is so tough.  She has endured so much for such a young person.  And she is healing.  She is recovering.  And I think she knows it.  Happy Birthday, baby.  

Marley wrote this today.  It was her account of her 10th birthday party, told from the heart of a child who once had no voice.  I hope you enjoy it as much as I did.

Once upon a time there was a old girl name marley she lived with her mother her father her sister skylar and her baby brother xander. one day her party is today. She put on her party drass. Nana and pappy came early. nana bring her a present. Wane nana and pappy was gone to skylars game marley and her mother made fruits and cupcakes for the guests. Wane nana and pappy and skylar and marleys father and poppa jay came back we played catch. And then marley put her birthday crown on her head. Then sarah allen came early. Then we played catch again. Then we played outside. Then Juliet and taylor and Reagan came too. Then we played nail polish hot potato game. And then we play some wii dance and then we sing happy birthday to me. Marley makes a wish. I wish I had fun at school she whispered.  Then we eat two cupcakes. And then we open presents. I got Disney fairy tale weddings cd. I always wanted Disney fairy tale weddings. I got tickets for Disney on ice from poppa jay. Then we play wii sing it. Finally it was time for sarah allen and Juliet and taylor and reagen to go home.  Then marley said it was fun. Then marley and her family live happily ever after. The end.