Sunday, October 28, 2012

Double Digits

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.