Tuesday, April 24, 2012

Marley's Poetry Appreciation Day

I love Fridays. I always have.  Even now, that I am a stay-at-home mom and every day is just as much work as the next.  But this last Friday was an extra special day to me.  It was a crisp, sunny morning and it was the morning of Marley’s Poetry Appreciation Day at her school where parents of all the kids come to listen to their children read one original poem that they wrote. 

Marley is my oldest child with autism and she is in a “system-level” classroom at school but since we started Brain Balance in the Fall, she has been mainstreamed more and more into the regular education second grade classroom.  Although writing is one of the few subjects she is not mainstreamed for, her mainstream teacher still wanted to include her for poetry appreciation day.  So the day before the reading, her special education teacher sat down with Marley and helped her write her own original poem.  It was, of course, about her favorite subject.  Fairies.  Her poem was based on her favorite fairy book.

I was nervous and excited to see how Marley would handle all the sensory input.  Would she meltdown in front of a crowd of parents if she made a mistake?  She is after all, a perfectionist.  Would she cry when she realized that today, she would not follow the same structure as other days?  Would she be okay with the increased noise level in the classroom?  Would the crowded classroom bring on a meltdown?  Would she smile?  Would she speak up? 

In the past, I wouldn’t dare let her attempt such a thing, as I knew it would end in disaster.  But this day, I felt good.  I felt positive.  She has made incredible amounts of progress this year.  She is healthy now.  No more GI pain.  We fixed that.  Her sensory regulation is much better due to the Brain Balance program.  So I was excited for her.  I wanted to see how she would handle the situation.  And indeed…it turned out to be quite an emotional experience for me. 

I watched her as she walked into the classroom…nothing as it usually is.  She knew today was poetry day.  She knew I was there to see her.  So she looked around the room until she saw me.  When she caught my eye, she smiled and said,  “Mom!”  I smiled back and motioned for her to sit down with the other kids who were sitting on the rug awaiting their turn to speak.  She waited patiently…every now and again looking back to see if I was still watching.  I was.  She was a bit wiggly and stimmy, but not too bad.  She remained quiet and listened to each child take their turn.  When it was finally her turn, she jumped up excitedly and took her place on the bench in front of the class.  And she read:

Ruby’s Story, by Marley
Rachel and Kirsty need her help
Six sisters
Amber, Sunny, Fern, Sky, Inky, Heather
In big trouble!
Had a ball and the frog orchestra played
Saw King Oberman and Queen Tatiana
Saw the rainbow
Red dress and ballet shoes

In the middle of reading, she lost her place and looked up at the teacher for help.  She said, Marley you can start over.  So she did.  Even louder and more confident the second time.  No tears.  Just a big smile, then she finished and took her seat on the floor again. 

She had done it!!  I exhaled.  I teared up.  It was a moment to remember.  This is what we have been working so hard for.  What most parents take for granted….I never will.  Afterwards, there was coffee and tea for parents and bagels and bananas for the kids.  I brought Marley her apple from home and she sat quietly at her table and ate while I lavished her with compliments. 

Then something wonderful happened.  Kids in her class started coming up to me to tell me that they thought she had done a great job.  I smiled and said thank you.  Then another child came up and said, “I like sitting with Marley at lunch.  I enjoy talking to her.”  While Marley sat there and ate, kids were coming up to me, introducing themselves and telling me that they like Marley.  She was completely oblivious to their comments and was too busy snacking to even notice.  But they noticed her.  They liked her.  They complimented her.  They even came over to sit with her with their own snacks. 

I felt that was my time to exit.  She could sit with her friends.  Oh my God....she has friends.  Kids that understand that she is not like them…but that it is okay.  I can only hope that the sweetness of these second graders stays in their hearts as they grow older.  My daughter is a great kid.  She is funny and sweet…but she is clearly different.  May those kids keep their compassion and understanding.  May my daughter continue to heal.  And may I continue to witness such beautiful things as my children grow.

Tuesday, April 17, 2012

The critical role of GI health in recovery

When Marley was 2 ½, her stool sample showed that she had enormous yeast overgrowth and bacterial dysbiosis (a lack of good bacteria) in her GI tract.  Most likely the result of overuse of antibiotics, and possibly even passed on to her by my poor GI tract health caused by consumption of processed foods, pasteurized dairy products and my own lack of good gut flora as I was bottle fed as a baby.  Marley was already dairy-free because she had a horrible IgE allergy to milk and taking her off gluten didn’t seem to do much for her.  She was still having 5-10 loose stools per day.

After much consulting with the DAN! Doctor, we decided that she needed to go on the Specific Carbohydrate Diet. The SCD diet allows no sugar, (even VERY little fruit) and no carbohydrates in the form of bread, rice, potato, etc. The starches were out.  Obviously, all hydrogenated oils were out.  All food colorings were out.  We were left with nuts, eggs and meats.  It is very much like the Atkins diet. 

As much as Marley was a good eater, I was scared to try but as soon as I started the diet, I knew she was a responder.  She regressed and became physically ill.  The first day, she was green.  The second day she threw up and that is when the “black mud” started to flow.  I was starving the yeast out of her.  Her yeast die off was fast and violent.  It went on for a week.

Now, autism is not for sissies.  The amount of poop issues that we as parents deal with is insane.  The messy poop, the poop smeared on the walls, the painful constipation and I will stop there to spare you anymore.  But I will just say that Chris is permanently scarred by those years. 

After that first week of yeast die-off, Marley was markedly more “connected”.  Her eye contact was better.  She seemed happier although she still was non-verbal.  I think that diet worked for her because it controlled the overgrowth of yeast but still her dysbiosis was a problem.  Even with continued probiotics.  So her digestion was improved, but still not cured.  We stayed on that diet for 2 years before going back to a more traditional Gluten/Casein/Soy Free diet with very low natural sugar found in fruits. 

As the years passed, Marley’s GI problems only seemed to get worse, converting to more alternating constipation and loose stools.  By the time she was almost 4, she became verbal thanks to hyperbaric oxygen therapy. (A story for another day!)  But most distressing were her words.  By age 4 ½, she would lift up her shirt and say “tummy hurts”…”boo boo kiss”.  She was getting up in the middle of the night screaming.  I went up to her room nightly only to find her curled up in a ball on her bed screaming in pain.  When calmed down she would say, “tummy hurts”.  I didn’t understand.  She was pooping.  Sometimes twice per day.  Although sometimes it was still loose.  While at a DAN! Conference in 2007, I pulled Dr. Bock aside.  He was presenting that year.  I asked him how I could help her.  He told me we needed to get her scoped ASAP. 

I was distressed.  I was feeling helpless and at a loss as to how to treat her pain.  In a desperate attempt to get her seen by a GI doctor, I took her to the pediatrician and begged her to phone in an emergency appointment at the GI doc.  The best they could do was an appointment about a month out with a nurse practitioner.  I said…whatever…let’s get her in! 

So the next month, Marley was in.  I told the NP about Marley’s problems.  She listened intently.  Then she pulled in the attending GI doctor.  He told me that unfortunately, kids with autism have GI problems and there is nothing they can do.  That was it…I had had it.  I started to cry.  Right there in front of him.  And In front of a stimming Marley who was watching her portable DVD player.  Then I started to beg.  He must have felt sorry for me, so he agreed to do blood tests and a stool sample.  But…he warned….if it all showed normal, there was nothing else they could do. 

What do you know?  All blood tests were normal and the stool sample was too hard to test.  A clue?  Not to the attending GI doc.  But to the NP…yes.  She called me up to tell me all the tests results were normal but she would see if she could get the attending to agree to a GI X-Ray.  He reluctantly agreed.  We came in the next morning and went straight to X-ray.  By that afternoon, I got a call.  It was the NP from the hospital.  Her words stay with me.  She said “Marley’s X-Ray showed that she is loaded with stool.  There is no empty space in her colon or rectum at all.  No wonder she has such horrible pain.  This is the largest amount of stool I have ever seen in an X-ray. A problem like this is years in the making.  The daily stools you are seeing are just the stool that can get around the impaction which was why it is loose.”  Then she went on to tell me that normally, when constipation is this severe, they admit the child to the hospital for 3 days and put a tube up their nose and down their throat to pump fluids until everything is flushed out.  However, she didn’t think this was possible with a child like Marley.  Beside, BCBS had recently stopped paying for such interventions.  So instead, she put Marley on regime of MiraLax, warning me that it is very difficult to clean out a child this impacted at home. 

For a year, we played this game of …Marley is okay….then Marley is constipated again….then large doses of Miralax to fix it…then she gets bad again.  This game was frustrating to say the least.  And my poor baby was not getting much better.  I was missing something.  I knew it.  I also knew she needed to be scoped to find out what was that something was.

So I was back to the attending GI doc again…a year later.  Now Marley was 5 ½ years old.  This time, I begged and pleaded for a colonoscopy.  I told him how we weren’t getting anywhere and my daughter was suffering.  He gave me reasons why they shouldn’t.  I begged some more.  I wore him down.  He agreed but warned me that he was 99% sure they wouldn’t find anything.  But I think he wanted to be done with me, so he ordered the works.  He ordered an endoscopy & colonoscopy.  He ordered a spinal MRI to rule out those problems. 

Well, the MRI showed she had a syrinx in her spinal cord.  A rare and incidental finding, but still important.  The Colonoscopy showed signs of chronic constipation and murkiness.  But the real finding came with the endoscopy.  It showed redness and irritation.  The biopsy showed she has eocinaphilic esophagitis.  Her level of eosinaphils was 100.  It is supposed to be less than 5!  This means when Marley eats certain foods, white blood cells attack her esophagus. 

We were sent straight to the allergist who did a skin prick test.  She showed allergic to dairy (which we knew), eggs (which we thought and were told by a previous allergist that she outgrew), shrimp and cats.  Our cat of many years had recently passed on.  Now all we had to do was remove the eggs from her diet and keep her away from cats so she wouldn’t inhale the dander and keep her away from shellfish.  Done!

Viola!  Like magic.  Her GI health finally started to get better.  Her behavior started to improve.  The meltdowns started to subside.  I took her off the MiraLax and put her on a small dose of daily Ionic magnesium.  She was a different child.  We were on the road to getting my baby back.

I had spent years trying to uncover her GI problems and had to beg and cry to get the GI doc to listen.  And even he was shocked by the findings.  Let that be a lesson to ya doc!  Our kids need intervention.  MEDICAL intervention.  I hope that next time he sees a kid with Marley’s problems, he won’t just dismiss them as autism problems.  He will see a child with a medical problem. 

Here’s hoping!

Wednesday, April 11, 2012

What ails our kids

I had a moment today.  One of those reflective moments that parents have while they watch their kids play.  My youngest child, now 20 months old, was at story time at the library.  He was attentive and interested and sat on my lap.  His language is now coming in fast and furious.  He was clapping and singing along.  He is developing separation anxiety.  Just two weeks ago, he was only semi-interested in the stories and more interested in exploring.  I found it fascinating how quickly kids develop and mature.   

Xander is my third child and he is under mom and dad’s watchful eye always.  You see…my oldest has autism.  My second child has sensory processing disorder.  So when I found out I was pregnant with him….I cried.  Yes.  Cried.  I was so very scared.  I had been warned about the statistics.  Then I found out it was a boy and I cried some more.  The statistics are even worse for a boy.  His chances of developing autism with a sister with autism were greater than 1 in 10…or so said the neurologist. 

But now, I know better.  I know that autism is preventable in most cases.  So after I cried…I got over it.  I was extremely grateful I had my mercury amalgams removed years before I got pregnant again.  And I knew this time would be different.  I thought I was vigilant with my second child.  This time, I would space out vaccinations even further.  I would only choose the critical ones.  I would watch him closely for any signs and address them right away.  I would get him into OT as a baby if need be.  I would give him probiotics.  I would give him Fish Oil.

Ya know…I don’t really want to be this crazy.  I know I am over the top sometimes.  But having three children has taught me tons.  Yes…children have their own personalities, but some of that, ”Johnnie just likes to walk on this toes or Suzy just likes to be by herself” is not personality based.  It is illness based.  And that is what most parents don’t get.  And for that matter…most pediatricians. 

Your child should not be having several loose stools daily or they should not be constipated regularly.  They should have words by 12 months.  They should be speaking in 2 word combinations by the time they are two.  They should eat normally and not just pick ten foods and stick to them.  They should not be having chronic ear infections.  The answer is not ear tubes…it is finding the cause of the infections.  All these signs point to trouble that needs to be addressed or it will only become worse.

As a seasoned parent of a child with autism, one with SPD and two with severe food allergies, I can walk into a room and point out those children.  I live with these issues every day.  So when I take my baby boy to story time and see the same kid each week with a runny nose, I see a problem.  When I see the kid in the corner by himself spinning the cars wheels, I see a problem.  When I see the little girl with the rash on her face that doesn’t go away, I see a problem.  When I see the little boy that is running away from his mom like he doesn’t even hear her, I see a problem.  And I gotta tell ya….I see a lot of it.  A lot. 

I don’t think it’s the parent’s fault for not recognizing what I can see in 10 minutes.  I blame the pediatricians mostly.  I know because I have been told many times myself by my own children's pediatrician….that it is okay.  It is okay that Skylar will only eat pureed foods.  She’s just a picky eater.  WRONG.  It’s okay that Xander has an unrelenting rash on his face.  He has impetigo.  WRONG.  It is okay that Marley’s development came crashing down after her 18 month shots.  WRONG. 

So as I sat there today…watching my son in his story time class, I thought how very far I have come in learning about kids and what ails them.  As a 39 year old mom, I am now significantly older than most of the young moms there.  They are young and just starting out on their motherhood journey.  But they will likely find out as I have, that these things are more and more common than ever in our society.  And if we want to heal our kids, we will have to learn how to do it ourselves, because there is no one there to help us.  We will have to listen to our gut even when the pediatrician tells us there is nothing to worry about.  We will have to take the initiative to stay up late searching for healing strategies that have worked for other moms.  And we will have to believe that this is not just a naughty child.  This is a sick child that can be healed.  Because it is possible.  He or she can be healed.  

Friday, April 6, 2012

Recovering from Sensory Processing Disorder – Skylar’s Story

This blog has been mainly about my first daughter, Marley.  She has autism.  However, there is another story here.  My second daughter, Skylar, born three years later, was diagnosed with sensory processing disorder at fifteen months old.

In stark contrast to my first child’s birth, my second daughter came into this world flawlessly.  I was on bed rest for four weeks to control contractions, but she came at 39 weeks and was a beautiful, healthy baby.  She nursed well.  She slept well.  She was a content and connected baby.  I breathed a sigh of relief and thought to myself…this is what it is supposed to be like. 

Being very suspicious of vaccines now, I put my new baby girl on a spread out vaccination schedule.  At 4 months old, she received her first shots...both HIB and Polio.  The next month, she received her first DTaP.  This was also the time that we started her on solid foods.  She still was doing well.  She ate with no problems.  However, I started noticing problems around 8-10 months old when I tried giving her any food other than purees.  She would cry and scream when any texture other than a soft puree touched her mouth.  I also noticed that she would flap her hands when she got excited.  But she was VERY social and very connected and babbling. 

As more time passed, her eating got worse and I started noticing things like she didn’t like to get her hands dirty or messy.  She couldn’t stand to put her feet in the grass or on sand.  These things would lead to meltdowns.  I finally got her to eat a few cheerios…something not pureed, so I felt I was making progress.  I should have noticed more but I was dealing with a non-verbal three year old with severe autism.  My attention was mostly focused on my oldest during this time. 

That all changed when things came to a head the winter of 2006.  Skylar was about to turn one and she had had an ear infection for over a month.  We went back to the doctor and it still had not cleared.  They told me I needed to make an appointment with the ENT and they would try a fourth antibiotic to clear it up.  I came home distressed and frustrated.  I had a sick child and the meds couldn’t seem to heal her.  That is when I realized that everything I was doing for my child with autism, could likely help my second child with these sensory issues.  I did NOT fill the Rx that day.  I immediately took her off dairy.  Within a week, the ear infection was gone. 

So now healthy, my one year old was due for her third DTaP shot according to my own schedule I had set up for her.  So against my better judgment, I took her in to get the shot.  Then the walls started to crumble.  She screamed and cried inconsolably for about 2 days.  Then she would not eat the cheerios we had worked so hard to get her to eat.  She stopped babbling.  She was going over the cliff right in front of my eyes.  I was scared to death.  I knew what I had to do.  It was time to get my second child the same kind of help my first daughter was getting.  My oldest was starting to get better using biomedical interventions.  I was sure it could help my youngest as well.  We stopped all vaccinations. 

She started OT at 15 months old.  The evaluation revealed she had sensory integration disorder and motor planning difficulties.  (She was a late walker—about 14 months old.)  She had difficulties with loud noises.  She could not tolerate bright lights.  She always wore sunglasses outside.  She had difficulties with where her body was in space.  She was an avoider, where my other daughter was a seeker.  That was another reason I didn’t pick it up right away.  Where my first child had put EVERYTHING in her mouth, Skylar never put ANYTHING in her mouth. 

Once we started brushing therapy, she finally started to talk.  She said her first word at 15 ½ months.  She said “Hi”.  But her language was still significantly delayed.  So we made an appointment for Marley’s DAN! (Defeat Autism Now!) doctor in New York to see Skylar as well. 

Dr. Ken Bock…one of my favorite people on this earth…was very glad we brought Skylar in.  He considers kids with severe sensory problems to be on the autism spectrum.  His office did tons of testing including stool samples and blood work.  He tested her metabolic system to be sure she was excreting toxins properly.  He tested her thyroid function.  He tested all her vitamin and mineral levels.  He tested her for yeast in the gut.

I asked him why kids have sensory problems.  He told me there are many reasons, but the top four are: problems with sulfation in the body, B6 deficiency, candida or fungal overgrowth in the gut and heavy metal toxicity.  I told him how Skylar’s problems got worse with her third DTaP vaccination. 

A few weeks later, the test results were in.  Her lab work showed low fatty acids (Omega 3’s), Low GLA (Omega 6), Low Vit E, Low Iron, Low Zinc, low selenium (which makes glutathione, the body’s largest antioxidant), and low chromium.  So it’s no wonder that her language started to really take off once I started supplementing her with Cod Liver Oil and Vit E. 

Her stool sample showed she had a bacterial infection in her tummy for which she needed antibiotics to clear up.  It also showed yeast overgrowth for which he prescribed a mild antifungal.  Thirdly, it showed she was not making any “good” bacteria” in her tummy which accounted for her numerous and loose daily stools.  We put her on a strong probiotic twice per day.  An IgE blood test revealed she had an allergy to eggs.  And she was already off  dairy.

Now, armed with all this information and a plan, I was sure that she would get better.  And she did.  But not all at once.  By age two, she was very verbal but she still required weekly OT.  Especially for the eating. When she reached age two, and still would not eat anything but 100% pureed baby food, the OT begged me to take her off the baby food.  I was scared to death that she would starve.  But slowly, we made progress.  I caved and let her eat dairy again just so I could get her to eat something. 

Fast forward to four years later.  Skylar had learned to eat a turkey sandwich, macaroni and cheese, raw red peppers and cucumbers along with many crunchy foods.  She was age 5 now, and going to kindergarten in the fall.  Her sensory integration dysfunction was almost unnoticeable except for her eating difficulties.  She loved to swing now.  She would roll down a mound of mulch not afraid of getting dirty.  She could go outside without sunglasses.  She could sit in a movie theater without covering her ears.  She graduated from OT just in time for kindergarten!

However, she was getting constant headaches.  At age 5, she was getting about one headache a week.  And she suffered from chronic constipation.  She also told me how her tummy hurt at bedtime.  And she still suffered from night terrors and had since she was about 2 years old.  So, in October 2011, I ran an IgG test on her.  It tested her for food sensitivities.  It showed she had leaky gut and a severe sensitivity to gluten, dairy and turkey, a moderate sensitivity to chicken, cantaloupe, peanuts, and malt and a few other mild sensitivities. 

There it was….right in front of me.  I had been busy healing my oldest daughter’s GI tract with diet and supplements and Skylar had the same problems.  Possibly even worse.  So, we were back to square one.  I had finally gotten her to eat a turkey and cheese sandwich and she could no longer have it.  We removed all offending foods from her diet and started her on digestive enzymes to heal her GI tract.  Then something wonderful happened.  The headaches stopped.  The night terrors stopped.  And yes…get this…her eating actually improved!  Once we got over the hump of finding alternative foods and explained to her how the old foods made her sick, she began to eat new foods.  It is not as easy as with a typical child.  And she still requires lots of prompting to eat but it is a lot easier than it once was.   

So here we are.  She is now age 6.  And she is virtually indistinguishable from her peers except for the diet she is allowed to eat.  In addition to no offending foods, we also do LOW sugar, no hydrogenated oil and no food colorings or flavors.  I consider her almost healed.  My hope is that once we get her GI tract healed (and it will take years), she will be able to eat normally again. 

The lessons I learned from healing my daughter with autism helped me heal my daughter with sensory processing disorder.  I hope you learn from them too.  

Thursday, April 5, 2012

Healing with Supplements

When Marley was diagnosed with autism, my husband and I already had a big suspicion that autism was the problem.  We had already been researching alternative treatments and she was only 2 ½ years old.  Her horrible meltdowns that lasted an hour or more were our most pressing problem.  A friend suggested I start her on DMG….a supplement that helps the methylation process.  Within a day and a half, her tantrums stopped, however she became incredibly hyper. 

A few days later, our appointment with the pediatric developmental neurologist at a prominent hospital had finally come.  We had waited 5 months for this.  Unfortunately, all he had to offer us was an autism diagnosis, and some free advice.  “Don’t have any more kids”, he said.  “The chance of your second child having autism is 1 in 10 but likely even higher since Marley is a female.”  Slightly shocked, but still unwavering, I said, “We have tried DMG to stop her tantrums and it worked, but it is making her hyper.  Can you help me figure out a way to calm her down?”  Always prepared, I handed him the printed out studies done on DMG and how it helps kids with seizures and kids with autism.  His reply was “Oh…I am sure it was a coincidence.  These studies are from the 1980’s, so they are very old.  There is no reason to get your hopes up.”  My blood was boiling.  He left the room.  I turned to my husband and said, ”See, I TOLD you he wouldn’t listen to me! He thinks I’m crazy!”  Then the door opened and it was him again.  He said, “I was outside the door and overheard you talking.  I don’t think your crazy.  I think you are getting your hopes up for her future.  I will give you an open-ended prescription for Prozac, which will calm her down and help with the meltdowns.  I will run some amino acid tests now.  Keep her in OT and I will see her again in a year.”  I wanted to punch him.  What the hell was he good for?  That was when I learned that most doctors are not healers.  They are diagnosticians and medicators.  But he wasn’t there to HELP my daughter.  Just to medicate her so the rest of the world could tolerate her.  His suggestion was to drug up my 2 year old!  So, we left….deflated and angry but more determined than ever to find Marley some real help.

Next, I turned to a chiropractor, kinesiologist and nutritionist named Dr. Gangemi.  Kinesiology is an interesting practice and if you are not prepared for the muscle testing, it may seem very strange.  The friend that referred me, somewhat prepared me, but my husband was very skeptical.  Dr. G asked us, did you vaccinate her?  We said, “yes.”  He asked why.  Chris said, “Because we don’t want her to get the mumps.”  Dr. G looked us directly in the eyes and said, “I would argue that she is already sick.”  We knew he was right.  The exam showed she needed Magnesium and vitamin B6 and that she had bacterial dysbiosis in her gut.  Dr. G also asked me to get a copy of the amino acids tests run by the prior doctor.  I said, “why? He said everything was fine.” Dr. G replied that some doctors don’t know what they are looking for. 

Boy…was he right.  It took me two weeks of phone calls to get Marley’s lab report.  And when it finally arrived in the mail, I gasped for air.  HOW could a prominent doctor look at this and say THIS is normal?  Fourteen of Marley’s amino acids showed high levels.  And not just a little high.  Four of them had levels 4X the normal range.  And the other ten were twice the normal range.  So, I jumped on the phone and had the hospital page this “doctor”.  When I got him on the phone and asked him why he said the levels are normal, he said, “Oh, the technician reads those reports and if they fit into a specific pattern, they call them abnormal.  If they don’t fit into any pattern, they call it normal.  I wouldn’t even know how to read one of those reports.  I don’t know what all those numbers mean.”  My jaw dropped.  I couldn’t even speak.  He couldn’t read it?  God knows how many kids this man sees in a day.  All he does is order tests, not look at the results and dole out prescriptions?  I was in shock.  So armed with this information, I was sure going to figure out how to read these test results and find out what they mean.     

Back at home, we tried the ionic magnesium prescribed by Dr. G.  Within ONE day, Marley began to follow commands.  ONE day.  The next week, we tried the P5P, a broken down form of B6.  Again, within ONE day, she began to point to objects that we asked her to identify.  She couldn’t talk….she was hyper from the DMG….she was disconnected but these two accomplishments were definitely milestones for her.  And they were brought about by two simple supplements.  We were amazed and needed to learn more.  We continued to see Dr. G but I found that Marley was really in trouble.  She was having 10 loose stools per day and she was falling further and further behind.  She needed a medical HEALER…and fast. 

I hand-picked Dr. Ken Bock in Rhinebeck, N.Y. because I saw him speak at a DAN! Conference.  He became her healer.  We drove her 600 miles once a year to see him and I did phone consults every 2 months.  The initial visit was brutal.  14 vials of blood were drawn.  Fasting urine collection.  But based on those test results (which he COULD read), we started her on a regime of supplements and Marley began to heal.

This was her list of supplements during her healing years with Dr. Ken Bock.  We have pared it down to the essentials since then.

*I am not a doctor.  I am a mother.  We used all these under a doctor’s supervision. * All these were important to my daughter’s healing.

Nordic Naturals Cod Liver Oil w/D3 – 2 tsp (This was a winner right away!  We found this helped her focus and attention span)  This also helped my second daughter who had delayed language.

Folinic acid (800 mcg of methyltetrahydrofolate - also known as metafolin OR FolaPro)– this was determined by Dr. G and Dr. Bock because she cannot break down folic acid.  Turns out neither her little sister nor I can either.  I made sure to take this during my subsequent pregnancies as the inability to break down folic acid can result in miscarriage. 

P5P – (It is the broken down form of B6) – When I asked Dr. Bock what causes sensory problems in kids, he responded “there are many reasons but the top 3 are: B6 deficiency, problems with sulfation in the body and heavy metals”. We did 50 mg, which we later reduced to 25 mg as her sensory problems got better.  This is a must for kids with sensory problems. This was an immediate winner for us too, likely because it helps by supporting the adrenals.  Although it is rare, long term high dose use of B6 can cause peripheral neuralgia.

Calcium Powder – I recommend Calcium Citrate and it is best taken with magnesium for optimal absorption.

Curcumin- Anti-inflammatory.  Many of our kids struggle with inflammation.  This is the active ingredient in turmeric.

Selenium – Gets rid of free radicals in the body and is also supports the immune system because Selenium is an essential component of glutathione, the body's most potent natural antioxidant.

Zinc- most kids with ASD are zinc deficient.  It also supports the immune system and is great for PICA (chewing on clothing, putting things in the mouth, etc.)

Niacin as Niacinamide (B3) – 400-800 mg daily. Start low with this supplement and add until you find the ideal dosage. This is nature’s Valium and helps immensely with anxiety.  Do not use Niacin as it is hard on the liver.

Pycnogenol (Pine Bark Extract) – 100 mg daily.  This is an antioxidant and we found this helps with anxiety & focus.  (It can also help women with hot flashes)

Methyl B12 shots – these made my daughter WILD.  But they did help her with socialization and verbalization.  I later found out that about 20% of the ASD population cannot tolerate these shots but for others, they are great.  We have since switched to sublingual B12 as the shots can increase cobalt levels.  But beware, as B12 can increase yeast overgrowth, so be sure to take with an anti-fungal such as Grapefruit seed extract.

Amino Acid complex  - this was specific to the needs her blood test showed.

For the GUT:

Probiotics – Strong probiotic with no sugar added to help with bowel movements, and bacterial dysbiosis in the gut.  This also helps keep your child healthy.  The gut is 70% of the immune system, so if the gut is healthy, your child will likely stay healthy.  (Best to take on an empty stomach first thing in the morning.)

Ionic Magnesium – helps with constipation and also helps kids that are “chewing” on clothes, fingernails, etc.  (Can also give Magnesium Citrate – 140 mg daily)

Digestive Enzymes – Along with a diet free of gluten, dairy and likely Soy, digestive enzymes can help the GI tract to heal.  We use enzymedica.  Take with food.


Sunday, April 1, 2012

Awareness or Action?

April 2nd is Autism Awareness Day.  Really?  Who the hell isn’t aware of this by now?  Who isn’t touched by it in some way?  A relative has it, or a friend’s kid, a colleague’s  child….maybe even your own.  The new numbers for 2012 are out.  One in every 88 kids has it.  But that’s only kids that are 12 years old or older.  That number doesn’t count my daughter.  Or any of the ASD kids at her school for that matter.  Do the math.  If the numbers keep increasing at the same rate they have been; in ten years….in 2022…1 in 9 kids will have an autism diagnosis.  ONE in NINE!  That is how fast this is gripping our nation….our world. 

But…no…why call it an epidemic?  We don’t want to scare people.  Guess what?  People are already scared.  Pregnant mothers are scared to death….and they should be!  There is no consensus on causes, but we do know that it is NOT purely genetic. There may be some genes that make some kids more susceptible to toxins than other kids, but that’s it.  

So to hell with awareness.  What we need now is action.  We need studies of vaccinated kids vs. unvaccinated kids.  Yes….the CDC STILL refuses to do this one.  Gee, I wonder why?  We need studies on effective treatments besides pharmaceuticals.  I know pharmaceutical companies are the ones with the money to fund studies.  And no one wants to study nutrition, gastrointestinal diseases and disorders, parasites, detoxification or hyperbarics, or supplements for our kids.  But this is what needs to happen.  These are the things that have brought our daughter back to us.  And can help bring many other kids back too.  Autism MUST be treated as an illness.  Maybe then it will get the respect that it deserves.

So in this month of April, I will not be spreading awareness of autism.  Instead, I will be spreading awareness of effective, safe, non-pharmaceutical treatments.  I will be sharing the successes my daughter has achieved using these methods.  I will be sharing how she is overcoming the impossible.  So stay tuned…..the good stuff is yet to be shared!