Ryan was born 28 July 1996. At 12.5 months (6 Aug 97), we elected to give
him the chickenpox vaccine (Varivax).
My wife found him unable to stand when he awoke the morning of 12 Aug 97.
His diaper was almost completely dry. She noted significant changes in his
coordination. She took him to his pediatrician and he had X-rays of both
legs and his abdomen. They were normal. He was sent to the hospital for
admission.
Soon after arrival around noon, Ryan started to cry in pain and Robin noted
a mottled appearance of his legs which by now were flaccid. As we both work
in the health profession, we know everyone in our hospital. Robin had the
pediatric intensivist summoned to the bedside and Ryan was immediately
transferred to the Pediatric ICU. My sister called me at work and said,
"Come - come NOW!" I arrived in PICU as testing was about to begin.
Initially, Dr. Orlowski suspected that Ryan had a clot in the inferior vena
cava - a potentially fatal problem. Ultrasound ruled that possibility out.
I catheterized Ryan because of his inability to void and later inserted an
NG tube to decompress his stomach. He was sedated for MRI's of his thoracic
and lumbar spine. While in MRI, I cathed him again for 200-300 cc's of
urine and we saw the mottling of his legs mostly resolve. He returned to
his room at 11:30 pm. At midnight, a spinal tap was performed. Throughout
the day, Ryan had been evaluated by a neurologist, a vascular surgeon, a
dermatologist, and a number of pediatricians. His suspected diagnosis was
Guillian-Barre Syndrome secondary to the vaccination. Ryan had spent the
entire day flat on his back with his legs elevated. His legs had been
virtually flaccid and he had made no attempt to move them spontaneously.
Though he appeared to have some pain in his legs when examined or
manipulated, he was mostly quiet and smiling with his Mom & Dad.
At 2:30 am on 13 Aug, Ryan awoke from the sedation, pulled at his NG tube
and rolled slightly to his side. This was a major change. The NG tube was
removed and we helped him into a sitting position - something he had been
unable to do all day. Ryan sat like an infant might the first time he
tries; with his legs sprawled far to the sides and without any balance at
all. After 14 and a half hours he began to improve spontaneously!
Ryan continued to improve over the next few days, but his doctors were
unable to confirm a diagnosis. Late Friday evening - day four - he was
evaluated by another neurologist. Dr. Fernandez felt virtually certain that
Ryan did not have Guillian-Barre, but acute transverse myelitis. His
physical exam and history supported this, but it couldn't be proved by MRI.
On Saturday he transferred out of PICU. He still couldn't pee so a Foley
catheter was left in place.
On Sunday the catheter came out. With a lot of help from Daddy, Ryan could
pee on his own. By now he could drag himself around his crib and try to
stand - but only for a second or two. By Monday, 18 August, Ryan could
occasionally stand for about 30 seconds. Having made remarkable
improvement, he was discharged.
Ryan continued to improve but had a lot of residual weakness of his left
leg and hip and poor coordination. The leg was spastic and we performed
range of motion (ROM) exercises three times a day. He could crawl a little;
mostly he dragged his leg behind him. He couldn't stand without help.
Today, Ryan still has weakness of his left leg and ankle and his
coordination is not back to what it was. He continues to be followed by
Dr. Fernandez. A few days ago, the majority of the spasticity faded and he
has begun to use his walker. He stands all the time and will walk if he's
holding onto something or someone. His improvement has been remarkable!
Although he's still not back to where he was, he's seems to be getting
there. As far as we've been able to determine, there is not a known case of
TM in a child younger than Ryan, but we're looking. Neither the FDA nor the
CDC knew of anything, although the CDC did contact the pharmaceutical
company who now reports that there have been two previous cases of TM
following vaccination with their product. They never reported it to anyone
and don't list it as a potential problem in the product literature.
No one can tell us for certain if Ryan will ever be without a disability. I
guess only time will tell....
**** UPDATE UPDATE UPDATE 2222222
I wrote that right after we got home with Ryan in Aug 97 and found this
list.
Ryan had follow up MRI's w/ and w/o contrast 2 days ago. The films were read
as normal.
His recovery is proceeding extremely well! The 32 in his legs is completely
gone and his reflexes have returned to normal. At 15 months, Ryan is not
really walking yet, but he stands for long periods of time and walks
independently for as many as 9 steps before falling. The TM probably
retarded his progress in walking, but I suspect he's about back to where he
should be. He walks great with the extra balance afforded by holding on to
Mom and/or Dad's finger. Perhaps the TM has adversely affected his
balance...we may never know. We continue to await the results of his
convalescent viral studies that were sent to the state lab in August. We
learned yesterday that the tests hadn't even begun yet - and aren't expected
to for 2-3 more weeks - because of the volume of encephalitis testing that
the (Florida) state lab has been tasked with completing. At the last
appointment with our neurologist, it was decided that Ryan will not receive
ANY other immunizations until at least 18 months - perhaps even a year. No
one is willing to take that risk.
There is virtually nothing known about TM in infants from what I've been
able to glean. Interestingly, we were told by two consulting neurologists
that TM is so rare, that one might only diagnose a single new case every
five years. Numerically the incidence was reported as one case per every 3.6
million people. Conversely, both said you might diagnose one case of TM in
an infant in 20 years! There are a few cases reported from Asia, but the
histories tend to be thin.
Over all, my baby boy is recovering remarkably well and his prognosis is
excellent for 100% recovery!
-----Original Message-----
From: RON & ANNE ROBINSON <robexcav(AT)pronet.net.au>
To: tmic-list(AT)eskimo.com <tmic-list(AT)eskimo.com>
Date: Thursday, November 06, 1997 11:31 PM
Subject: TM aged 14 months
>My son developed TM aged 14 months in October 1996. Has anyone any
>experience in rehabilitation of Tm in small children. He is now 2 years and
>3 months old and walking with a walking frame on a good day. There are
>obvious sensory disturbances and bladder problems. The left side has
>recovered better than the right. I live in Townsville in Nth Queensland in
>Australia and work as a diabetes nurse and spend my time at work supporting
>the parents of children with Diabetes but would love some support and info
>from someone who has experience with TM in kids. I know there is a
>conference in Budapest, Hungary in Sept 1998 on Rehabilitation in Pediatric
>Neurology and hope to get abstracts of the papers. Hope to hear from
>someone. ANN
>