Makena's Story |
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We then had her two-month vaccines, in December, 1998. Within a week and a half after those vaccines, she developed a pretty bad upper respiratory infection and began to have little ticks (which I thought at the time were just myoclonic jerks due to the developing nervous system). Her ticks continually got worse until the first week in January, 1999 she had her first grand mal seizure. She then was having upwards of 60+ seizures each day. She was put on Phenobarbital, Dilantin, and Gabitril for the first go around. None of which seemed to stop the seizures just put her into a drug induced coma. (This is what her doctor thinks really caused the developmental delays).
Her pediatrician thought she was having an adverse reaction to the Phenobarbital, we think it was due to the hep. b vaccine. They then added Tegretol, which made her condition worse. Her seizures began to get very violent and she began holding her breath thru them. We immediately weaned her off the Tegretol. She then got a diagnosis of Infantile Spasms (which, today we feel was an incorrect diagnosis). We had done some research and found information on Vitamin B6 helping with seizures. So, we tried the vitamin B6 and her seizures went from 60+ per day down to 10 per day within two days of giving her the B6. The neurologists won't admit that it worked, they say it was a coincidence. She still was having hypsarrythmia pattern on her EEG and were scared into doing ACTH on her for a month. We then weaned her off all the other anticonvulsants and put her on Topomax. She still continued to have seizures. Although, not over 10 per day. We then decided to wean her off the last anticonvulsant (Topomax) and treat her only with natural remedies. We noticed a big difference in her awareness after taking her off the "drugs." She has had several heavy metal tests (hair analysis and blood tests) that showed that she was very toxic in mercury and aluminum (as well as other heavy metals). We have been doing oral chelation therapy (giving her barley greens, magnesium, acidophilus, etc.) to help bind the metals and help her excrete them. As of the last hair analysis, her mercury is gone and her aluminum levels are down considerably, but still need work.
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Our
daughter, Makena, is 9 years old and is functioning at approximately
9-12 month level.
She had her first Hepatitis B Vaccine at two weeks of age and within
two days developed conjunctivitis (which we later found out was
a side effect of the vaccine). Her pediatrician passed it off as
a blocked tear duct.
We then did an MRI, which showed a lesion in the left
frontal lobe of the brain. Hard to say at 3 months what it was because
her brain had not begun to myelinate yet. The doctors were thinking
microcephaly (shrinkage of the brain) or a demyelinating problem.
During this time her liver enzymes went through the roof. They were
already elevated before we started the anticonvulsants, her pediatrician
even suggested that she may have hepatitis (although feels that
she did not have a reaction to the vaccines). Her pediatrician was
so concerned that our daughter may go into a coma because of the
liver levels.
In August 1999, we went to UC Davis to have Dr. Gospe,
neurologist conduct a pyridoxine dependency test on Makena to make
sure she was not dependent on the B6. The test came back negative,
and he believes Makena is B6 responsive (her seizures are responding
to the B6 as an anticonvulsant). We then did a second MRI in September,
1999 which showed that there was no longer a lesion on her brain
but that there was a delayed maturation of the myelin. This was
the only thing noted on her second MRI as being a problem. They
said that it was not demyelinating, but that it was delayed maturation
of the myelin. 
Her
therapy schedule includes, two hours of PT (physical therapy),
three hours of OT (occupational therapy), and six hours of teaching
& three hours of speech therapy. We also have her in Hippo
(Greek for Horse) Therapy at the JF Shea Center located in San
Juan Capistrano,
which helps to strengthen her trunk & head control as well
as work on her subluxed hip. She also has Bowen Therapy with Dr.
Prudence
Broadwell in Fountain Valley, once a week. Bowen therapy is soft
tissue manipulation to help with her subluxed hip. Yet another
problem
with Makena. They wanted to do hip surgery and put her in a full
body cast for three months. At the time, we did not feel that
it
would be good to restrict her in a body cast with the type of seizures
she was having. We have seen improvements in her x-rays and her
range of motion (she has full range of motion) that we have put
off the surgery and are continuing swimming and Bowen to help
with
this problem. Her subluxed hip was due to increased muscle tone
on her right side as a result of the seizures. 