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.
Yes, lots of time, people think we are crazy and we are doing weird things to our children. Boy, I know how hard that feel because I have a 5yo boy with mild autism as well. Thank you so much for sharing this, Kelly! Kudos to you and Marley!
ReplyDeleteThank you so much for sharing, my little boy is almost 4 and also has Mild Autism, i have printed out your list of vitamin and will give it a try.
ReplyDeleteYour posts are so encouraging to parents like us who need just the encouragement and a ray of light to go on. My son is diagnosed with PDD-NOS this year and although he is high-functioning but his sensory issues(visual stimming, rubbing others' eye brows) and melt-downs are most concerning. His speech has improved considerably but is still not age-appropriate.
ReplyDeleteWe have seen good results with CoD live oil DHA capsules and would like to definitely try the list of vitamins you have shared.
I would like to know what all tests you got it done before starting with these? My son doesn't have digestive issues (not apparent ones, atleast) We got his mercury and lead levels tested and both were normal.
Also, have you tried DMG? I would like to use it for behavioural issues and meltdowns.
thanks for sharing my daughter need doctor didnt want listen to us or anything and now i am finding new doctor thanks for sharing your story with us i think sometimes doctor think we are crazy we not.
ReplyDeleteThank you for the info!!!! I have three sons with autism and am starting the whole supplement journey now and and the crazy diet....thank you so much for all of this info!
ReplyDeleteThank you.my son has SPD and it is very useful.god bless your kids.
ReplyDeleteDear author, I'm so glad to come across your blog. Thank you for your kind sharing and I know most parents are grateful to moms like yourself. If it is not too much to ask, would you share too the timing, dosage and brand of supplements you used? I'm leaving my mail address here, if it's ok to mail me. juliatengrs@yahoo.com.sg
ReplyDelete