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. 

MTHFR - Connecting the dots

 

When the tears dry enough for you to see through them, it is natural for us to look back and ask, what happened?  And there are more answers than we think.  One of the answers lies in the MTHFR gene mutation that many children with autism have.

The MTHFR gene mutation argument starts at conception.  Per Benjamin Lynch, ND of www.MTHFR.net ,  “Folic acid supplementation while pregnant is old news.  Women need to supplement with L-5-MTHF and Folinic acid – not folic acid.”  Folinic acid is the broken down form of folic acid.  It is estimated that about 25% of the population has a MTHFR gene mutation which has many adverse effects.  One of the effects is the inability to break down folic acid and it must be supplemented in the form of “methyltetrahyrofolate” or “metafolin” or “folinic acid”. When the body cannot break down folic acid, you end up with high levels of homocysteine.  The effect of high homocysteine takes many forms and they are still being discovered.  But here is what we know:

The effects of a MTHFR gene mutation can be:

Blood clots, stroke, depression, autism, bi-polar disorder, cardiovascular disease and infertility or several miscarriages. 

And how is the gene mutation “turned on”?  Usually methylation is inhibited by Candida overgrowth in the GI tract.  And what is the #1 Cause for Candida (or yeast)?  Heavy metals…Yup…there it is again.  The Autism and Heavy Metals connection. 

Now to connect the dots…..

For us, it took over a year to conceive to our first child, and I was fairly young…still in my twenties.  When we finally did, I was so incredibly sick for the entire pregnancy that I could barely function.  She was born at 33 weeks (7 weeks premature) and had an in-uterine stroke that left her with brain damage in two quadrants of her brain.  Seven doctors could not determine why it happened….but it did.  Yes, she was premature, but a stroke is not common for a baby at this gestation. 

A year later, I had a miscarriage.  And six months after that I had an ectopic pregnancy that ruptured, requiring emergency surgery and I lost one of my fallopian tubes.  I could have lost my life.  At the time, I chalked it up to bad luck and went on fighting my daughter’s severe autism. 

Then, when my daughter was about 2 ½, I brought her to a kinesiologist who found that she needed methyltetrahyrafolate or folinic acid (NOT folic acid) because she could not break down folic acid.  We started giving it to her but I still was not connecting the dots.

Shortly after that, I got pregnant yet again with my second daughter and was again deathly ill at only 5 weeks.  The kinesiologist saw me right away and found that I too needed methylfolate (L-5MTHF) acid.  He likely saved my second daughter that day.  I started taking it and my sickness was not as bad as it was with the first.  Although I did go into premature labor at 34 weeks, and was required to be on bed rest, she was born at 39 weeks, a very healthy baby.  She later developed sensory processing disorder and was also found to have a MTHFR mutation and needed supplementation with folinic acid.

And years later, I took methylfolate, the broken down form of folic acid when we became pregnant with my third child.  However, I was not very good about taking it when I got sick, and I went into preterm labor at 29 weeks.  I was required to be on bed rest for the rest of my pregnancy.  I delivered a beautiful, healthy boy at 39 weeks.  

With the ease of genetic testing, I have found that my own problem does not lie with MTHFR as it does with my children and husband, but with the DHFR gene of which I have several mutations.  The DHFR gene mutation is directly related to not being able to break down folic acid into L- methylfolate. The DHFR gene is responsible for the first two steps of the transformation of folic acid into folate that the body can use.  Since I have mutations on this gene, I cannot break down folic acid (the synthetic form) at all and need to supplement with methylfolate and eat lots of folate in my diet.  

Most recently, with genetic testing, my husband has been found to have both MTHFR gene mutations (A1298C +/- and C677T +/-) as well and he too needs supplementation with methylfolate.  With my husband affected with MTHFR....and me, affected with DHFR, it is no wonder my kids have problems with breaking down folic acid and detoxifying.  In fact, my daughter with autism has a MTHFR A1298C (+/-) gene mutation, several DHFR (+/-) gene mutations among many other mutations that affect methylation pathways. 

However, we know now that it is possible for a gene mutation to be “turned on” and “turned off” with environmental factors.  So what can you do if you suspect a MTHFR gene mutation?

#1 – Get a geneticist to run the tests to look for a MTHFR gene variation. Or www.23andme.com tests for methylation SNPs.  You download your 23andme results into genetic genie to get methylation information. It is only $99 and is a spit test. This is what I did.  LiveWello can also interpret your raw data from the 23andme test for you.  Or, you can order a testing kit through mthfr.net 's site.

*And please be advised that testing levels of folic acid in the blood does NOT tell us anything.  Most ASD kids have normal or high levels of folic acid in the blood.  This is because they cannot break it down.  The only true measure of your child’s folic acid is measured with a spinal tap and that is very invasive.

#2 – Treat the Yeast.  Eat a low sugar diet with more healthy fats like coconut oil, olive oil & avocado and less grains and carbs.  Yeast feeds on sugar & carbs.  Use Grapefruit seed extract (GSE) and Oil of Oregano to kill the yeast, then replenish the good flora with probiotics. Give probiotics at LEAST 4 hours apart from the anti-fungal.

#3 – Take Methyltetrahydrafolate.  I like FolaPro by metagenics.  Often it is very good to supplement MethylB12 in conjunction with Folinic acid because of the folate trap.  Seeking Health makes a great one that dissolves on your tongue so it is great for kids! http://www.seekinghealth.com/active-b12-lozenge.html  .  Some kids with autism will improve significantly when put on a broken down form of folic acid.  My daughter certainly did.

#4 – Consider AC Chelation.  This is extremely low dose chelation that is safe and is given on a time schedule per the half-life of the chelator.  For more information on this, see www.recoveringkids.com .   Removing the heavy metals from the body and brain is the only way to possibly reverse the effects of the gene mutation.

#5 - Most importantly....please know that this mutation makes detoxification difficult for the body.  So, go green and keep toxins away!

So, there it is….Will you hear this from your child psychologist?  Likely no.  Will you hear this from your child’s pediatric neurologist?  I sure hope so, but likely not yet.  However, the studies have been coming fast and furious this past year on MTHFR….so hopefully, awareness is on the horizon.

I have included some of them below along with some great sources for information on MTHFR.  Happy Healing!

UPDATE: 

Many of you have asked how taking methylfolate with methyl B12 has helped my daughter.  This was not an over-night "wow".  It takes some time for the folate to build up to an acceptable level in the body.  We saw slow and steady gains with speech and cognition and socialization.   I see more irritability in her little sister when she does not get her methylfolate and B12 in the morning.

Sources:

Benjamin Lynch, ND of www.MTHFR.Net

http://mthfr.net/mthfr-and-methylation-presentation-pdf-version/2012/06/06/

http://ghr.nlm.nih.gov/gene/MTHFR

https://www.facebook.com/mthfrsupport?ref=ts&fref=ts

Association of MTHFR Gene Variants with Autism 

Journal of American Physicians and Surgeons Volume 9 Number 4 Winter 2004

the compound 677CT/1298AC

heterozygous mutations were more prevalent in the autistic

population, 25%, than in controls, 15%

http://tonydunford.me/Autism/pdf/boris.pdf

MTHFR C677T polymorphism and recurrent early pregnancy loss risk in north Indian population

Reprod Sci. 2012 Feb;19(2):210-5. Epub 2011 Dec 2. http://www.ncbi.nlm.nih.gov/pubmed/22138544

MTHFR C677T and A1298C polymorphisms and cerebral stroke in two twin gestations. 

Childs Nerv Syst. 2011 Apr;27(4):665-9. Epub 2010 Nov 27. http://www.ncbi.nlm.nih.gov/pubmed/21113717

The association between first trimester micronutrient intake, MTHFR genotypes, and global DNA methylation in pregnant women.
 J Matern Fetal Neonatal Med. 2012 Feb;25(2):133-7. Epub 2011 Mar 28.http://www.ncbi.nlm.nih.gov/pubmed/21443409
 
Meta-analysis of MTHFR gene variants in schizophrenia, bipolar disorder and unipolar depressive disorder: evidence for a common genetic vulnerability?
Brain Behav Immun. 2011 Nov;25(8):1530-43. Epub 2010 Dec 24. http://www.ncbi.nlm.nih.gov/pubmed/21185933

Bramble Rose

The cool night air of the last day of summer.  The moonlight shining down onto the large open space in small town USA.  A small stage and a crowd of people, all ages that have come to see their hometown singer who has made a living of singing her songs to adoring fans….

My husband and I were lucky enough to get a sitter and head to an outdoor concert and watch Tift Merritt sing.  We have been fans since before my first daughter was born.  At the concert, she made a comment that “Bramble Rose”; one of my favorite CDs is now ten years old.  This struck a cord with me, as my oldest child with autism will celebrate her tenth birthday next month.  

In those early years, I listened to Tift’s music as I battled my daughter’s autism and found inspiration in her words.  I think back on those days and realize that I had no idea what I was doing, and just learning as I went and hanging on for dear life.  Staying up late researching, discovering horrifying truths…my heart was ripped wide open and I felt the only way to heal it was to heal her.  I was toughened by truths that are hard to swallow and I found a determination in myself that was unparalleled.

I spent my days wrestling a child to the ground and keeping her in bear hugs so that she wouldn’t and couldn’t hurt herself or anyone else.  I spent my nights planning my next steps and reading pub med journals. I learned how to read amino acid tests.  I learned the signs of yeast overgrowth.  I learned how to communicate with a non-verbal child.  And I learned the signs of vaccine damage. 

From Tift Merritt’s song, Bramble Rose…..

“Do you think I'll be happy out on the wind?

Do you think I'll get halfway before it's rainin' again?

Will I find that I'm true when it's hardest to be?

Or will the notions I follow have all turned on me?

So my love has, grown as sharp as, a bramble rose
Like a real good woman nobody knows

Once my love has, blown as far as, a bramble rose
Just a real good woman nobody knows”

So last night, I wept as I heard I heard Tift Merritt sing.  Just the sound of her sweet voice brought back the gut wrenching pain of Marley’s early childhood.  I remembered myself, about 7 months pregnant with Skylar and on the ground with Marley, trying to settle her from yet another wild meltdown…trying to talk calmly to a child who could not talk back to me.  Daily…for hours…several times a day…this would happen.

So, like the smell of the hand soap from Duke hospital brings tears to my eyes every time…..those memories are etched into my being.  They have made me who I am today.  Passionate about healing environmentally damaged children.  Determined to tell every pregnant mom not to get vaccines.  Begging young mothers not to feed their babies GMO formula or feed their young kids GMO foods.  Spending my free time meeting with moms and dads of newly diagnosed kids to tell them there is hope….and how to get to the land of happy, healthy children.

Because my daughter will be 10 next month.  The same age as Tift Merritt’s Bramble Rose album.  And in those ten years, she has gone from a child with severe autism where the doctor told me not to have any more kids and not to get my hopes up, to a child that now has friends and is fully mainstreamed for third grade.  It has been a hell of a battle, and I was certainly toughened significantly by the experience.  I have lost friends.  And gained new ones.  New friends that understand that my “bramble” comes from a place of pain that I never want anyone else to experience.   I can't bear to hear someone else's baby has slipped away.  And that my journey won't end until she is fully healed.

Food Allergies - Xander's story

Here I sit....crushed again.  I feel like I live on a rollercoaster.  And I hate rollercoasters.  Lately, I can’t seem to shake the feeling that we are so different than most families.   How our family lives our life.  How we live with autism.  How we live with a different diet than most out of necessity.  How we live with severe food allergies.  And how this affects the relationships in our lives.

School has started for my older girls and knock on wood….all is well so far.  My oldest with autism is being fully mainstreamed for the first time ever, and doing wonderfully, thanks to the Brain Balance program we did last year.   And before I can even celebrate her success, I get a call from the preschool where my son is enrolled and will start next week to talk about his food allergies.

I remember the day he tested positive for a peanut allergy…and a rice allergy….and a dairy allergy….and an egg allergy.  He was only 7 months old.  And he sat there sweetly while huge welts showed up on his back during skin prick testing.  Showing allergic to foods he had only ingested via my breastmilk.  Tears welled up in my eyes as the welts grew bigger and bigger because I knew this was a game changer.  Peanut allergies are life threatening.  And the child typically does not outgrow them. 

I am no stranger to food allergies.  My first-born daughter was also diagnosed with food allergies when we gave her formula for the first time and her eyes swelled almost shut and she had hives all over her body.  But Xander’s symptoms were different.  He was a very colicky baby and at 5 months old, a rash around his mouth showed up that looked like impetigo.  But it was clearly from the solid foods I was giving him, which consisted of rice cereal mixed with breastmilk and a few purred vegetables.  He also had eczema, cradle cap, nightly crying due to tummy distress, gas, and he refused tummy time.

*Notice the red cheeks, the cradle cap, the crusty wound above his lip and the red bumps on his forehead.....all symptoms of a food allergy that not even the pediatrican picked up on.

*This happened after I ate almonds when nursing him.  It took a steroid cream and 3 weeks to heal.

Now that I had a diagnosis, I knew how to fix his problems, and sure enough his symptoms disappeared with diet change (and MY diet change because I was nursing him.)  A few months later, I had blood drawn at Duke to see his actual levels and when the results were in, it was frightening.  His allergy to dairy, nuts & eggs were sky high with lower levels for rice and avocado.  And a year after that, we discovered yet another allergy – wheat.  Although he was eating wheat with no rash or hives…he had chronic diaper rash and he had nightly waking until we took the wheat out.  Poor guy was likely in distress from the gluten. 

So today is the first time….of many I am sure….when I am realizing that living with a life threatening food allergy is no cake walk.  The director of Xander’s preschool called this morning to say that she got my e-mail sent to my son’s preschool teachers outlining all of Xander’s food allergies and the possible reactions.  Then she asked me…”Are you sure you want to send him as a 2 year old?  We will do our best to protect him, but with 10 kids and 2 teachers, we cannot have eyes on him at all times, and I fear he may eat something off the floor that he shouldn’t and then we would have a situation on our hands.” 

Let me first say that I love this preschool.  They are so wonderful and protective of our kids but it hit me as she was talking, that she could not protect him no matter how hard they tried.  She told me that she could make the classroom peanut free, but they share a room with another class that is not peanut free.  And what if something from that class ended up on the floor, in the corner where only curious toddler eyes could find it.  What then? 

And they could have Xander bring his own snack, not to partake in community snack time, but they would likely have to put him at a different table, by himself at snack time so he wouldn’t sneak the other child’s dairy-gluten laden goldfish. 

The scenarios that she was concerned about went on and on.  She finished by telling me that she is NOT telling me that he cannot come, but if it were her child, she is not sure she would send him.  And I knew then, that she was right.  My sweet boy could not attend preschool for at least another year…until he knew enough not to eat “forbidden food”.  For his own safety.  He is being excluded for his own safety.

It breaks my heart.  I want him so badly to have social interaction, especially because he is so verbal and bored with me at home while his older sisters go to elementary school.  But I suppose there are lessons learned.  The preschool director said that from now on, when a parent mentions a food allergy, she will ask more questions, like “to what and how severe?”

And I have learned that I need to keep fighting.  For advocacy, for awareness, and for healing.  Yup…the fight must go on.  And in the meantime, my 2 year old is stuck with his mom for the school year.  I guess that’s not so bad. 

Keeping the Faith

In exactly 5 days, my 9 year old daughter will be starting 3^rd grade in a fully mainstreamed setting without an aid, with only the assistance of a resource room teacher.  This accomplishment has been years in the making and is proof positive that she is on the road to recovery.  Unfortunately, this transition comes with great anxiety for me.  I wonder how she will cope with a new setting, new teacher, new “friends”.  Will the kids be good to her?  Will she be disruptive?  How will she adjust to days of school and nights of therapy and homework?  There are so many worries.

When my mind begins to get frightened by the unknown, I find myself having vivid memories of when Marley was a baby.  These were the days before an autism diagnosis, but scary days all the same.  She had received a diagnosis of a Grade 4 brain bleed (the worst grade) when she was only 2 weeks old.  She was born 7 weeks early.  Those were the scariest days of my life.  But they were also the days that were extremely enlightening for me.  Until then, I lived in a state of blissful ignorance. 

In my current state of anxiety, I find myself slipping back in time, to a place where a 3 month old baby cried through the night and slept in 20 minute increments and only when placed on your chest.  Chris and I would take shifts staying up with our new beloved tiny baby.  He took the 9pm-1am shift and I would take the 1am - 7am shift.  These shifts consisted of sleeping in 30 minute increments and rocking and consoling an incredibly colicky baby (which we later discovered was due to food allergies). 

Thank goodness for a glider purchased for me by my mom.  We lived in that thing.  During my shifts, I often found myself doing my best to console a baby with soft adult words.  “Everything will be okay, Marley.  I promise.  I will make sure of it.  You can trust me.”  Then my tears would stream right alongside hers because I had no idea how I was going to keep that promise.  It was a nightly routine.  Singing to her, both of us crying, the feelings of helplessness and my unwavering commitment over and over to her that I would make everything okay. But I was scared.  I am a do-er, but I had no idea how to “do” this.  I promised her in the dead of night that I would always be there for her.  No matter what.  Always. 

Then one night, at about 2am, I was weeping quietly as I held my crying baby close to my heart in my favorite glider when suddenly I felt a sense of calm come over me.  There was nothing but a small nightlight on in the room, but I felt a presence with us.  And oddly, it was as if I knew who it was.  It was Chris’ much-adored grandmother who had passed years ago, when my husband was only 12.  This woman is revered in my husband’s family for her sweet and generous nature and although I never met her, I feel as if I know her from the stories that are told about her.  The baby I was holding is her namesake.    

My crying baby settled suddenly and I felt as if I was holding my breath.  My tears stopped and I was in wonder about what was actually happening.  I could not see her presence but I knew where she was in the room.  Somehow, I knew she was diagonally across the room from me, yet I could only feel her.  Why was she here? My exhausted mind was racing.  Was this actually happening?  Was I hallucinating?  Was I really THAT tired? 

I just sat there with my awe and peace and bewilderment until suddenly, I snapped out of it and started to become scared of what was happening.  My heart started to race wildly and at that very moment, my husband walked into the baby’s nursery.  This was very odd, because he had no reason to come in. He should have been sleeping.  The crying had stopped and he and I always took advantage of our allotted sleep time.  Yet, there he was and he asked “Is everything okay?”  I said, “I’m a little scared because I think your grandmother was just here.”  Then, my skeptic of a husband said, “Well, there’s nothing to be afraid of because she would never hurt you.” 

I realize now, that when things get scary, there are people looking out for us.  Those that have passed and those that are still here.  And I know they are there to help me keep the faith that everything will be okay.  They will guide me and help me through the rough patches.  I have since vowed to follow my instincts and watch for their signs because they are all around us.

Incidentally, a few months later, I was searching high and low for a light purple / lilac colored dress to match Marley’s for our mother-daughter baby photos.  After scouring the mall and on-line for a week, I finally gave up and ordered a plain white dress on-line.  And wouldn’t ya know it?  It showed up in lilac color.  It wasn’t even offered in lilac color, but who was I to question such a wonderful gift.  And it turns out that Chris’ grandmother’s favorite color was…. drumroll, please….yup....Lilac.

On being a Biomed Mom

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I have always been the type to ask “why?”  I was a quiet, pensive child with two younger siblings that were louder and more outgoing than I was.  Being the oldest sister, I was also the caregiving type (much to my younger sisters dismay.)

When I was confirmed in the Presbyterian Church at age 16, I pestered the minister constantly with why and how questions during our confirmation classes.  Luckily, the minister was a progressive lady that was amused by my interest and questions.   She answered many of my questions with questions of her own.  I liked her very much.  The other kids didn’t have much time for the classes and wanted to simply get it over with to please their parents.  Not me.  When confirmation day came, I was coined “The one who asks questions” by the minister.

Sixteen years later, when my first-born child was diagnosed with autism, my natural instinct to ask questions kicked in.  There were so many questions.  How does a normal child go from making eye contact to ignoring you? Why is she always so sick?  Why does she have constant long-lasting meltdowns over seemingly nothing?  HOW did this happen?  I didn’t have much spare time but when I did, I stayed up late into the night reading pub med studies on autism.  On GI illness and autism.  On food and how it is related to autism.  On toxins and how they affect the brain.  And on vaccines and autism.  I talked to moms who were just as curious.  Then it happened.  I met a mom that had recovered her daughter and her son was well on his way to being recovered as well.  A real live mom that had done this on her own….despite what the doctors had told her.

That was it.  I had to learn more.  I recruited one fabulous autism mom and friend to join me in a trip to Boston for a conference where we immersed ourselves in Autism research and healing.  It was an eye opening experience.  There was science….real science behind the causes and the healing being done for these kids.  I was hooked.  I never looked back.

That’s the thing about becoming a biomed mom.  Once you are hooked, you become jaded.  You become hyper-aware. It is disconcerting.  It is disturbing.  It is downright appalling what is happening to our children.  It literally makes your heart ache for all the babies out there suffering because we have no laws that govern the chemicals being put in the air and land and water.  Because we allow more and more vaccines to be approved without appropriate efficacy and safety studies.  Because we continue to allow GMO foods to enter our grocery stores when GMOs clearly affect the gut flora which directly affects our immune system. 

Over the years, I have been much too busy to pay attention to anything except my family and their health.  Everything else has suffered.  My friendships have all but vanished.  My social life is null.  It has been almost a year since I have had a haircut for God’s sake.  I am too busy treating Marley’s very REAL medical problems.  She has food allergies.  She has Eosinaphilic Esophagitis.  She has chronic constipation problems. She has low glutathione, high oxidative stress, a MTHFR gene mutation, which affects the methylation cycle, low folinic acid, candida overgrowth and amino acids that are ALL over the charts.  She has high levels of lead confirmed with a chelation trial.  And if you think these are uncommon for a child with autism…think again.  All of her ailments have been discovered with very REAL lab work and medical tests that were deemed unnecessary by the pediatric developmental neurologist.  Add to this list, the syrinx in her spinal cord, her 2D vision and the brain damage in her right brain due to a bleed at birth and you have BIG mess to clean up.  (And this doesn’t even take into account my other two children and their health issues.)

So now you see why there is little time for anything other than understanding what is ailing my child and how to fix it.  Because not fixing it has never been an option.  Letting it just be autism and treating with a behavioral plan is not an option.  Because in truth, autism is really just a bunch of medical problems that are unaddressed.  Autism is toxicity.  Autism is a sick GI tract.  Autism is food sensitivities.  Autism is unbalanced Th1 & Th2.  Autism is low glutathione.  Autism is parasites.  Autism can even be thyroid dysfunction.  And Autism is other things that are waiting to be studied and discovered.  Autism is a complex illness and needs to be treated as such. 

Now I know better.  I know that Autism is NOT a psychological disorder, as many would have you believe.  It is an immunological, metabolic and neurological disorder.  And I will never stop asking questions.