Hi
my name is Catherine Natvik. I have a son that is 31 and was born
with 49 XXXXY chromosomes. We were in Helidelberg, Germany when he
was born. He is my second son. He weighed 5# 13oz. His legs were
crossed "indian style", very hairy(dark), oversized tongue,
widespaced nipples, webbed neck, low set ears. We had a terrible
time nursing but managed.
The military did not have any idea what was wrong with Jimmy so they
did genetic testing x2. First time got messed up. When we got the
results back they painted a very bad and depressing picture of his
future, they even wanted me to put him in a mental hospital.
The Army doctors didnt even want to circumsize him until he
developed a inguinial hernia at 3 months old. They repaired the
hernia and did circumsize him. His legs would not straighten out so
I worked with his legs and got them to straighten out. Taught him to
crawl by 10 months. He walked by 2 yrs old. We went to speech
therapy for 3 yrs before he finally said mama.
He is moderately retarded, cant read, can barely write his name and
is very hard to understand. He has epilisey, neurogenic bladder,
scoliosis, malformed wrists and elbows. He has to wear a long leg
brace on r leg. He recently had surgery on L knee to strengthen the
ligaments to prevent his knee from going out. His toes on both feet
have been pinned because they were hammer toes. He fell a few years
ago and scratched his knee which developed into ostyomyelitis which
caused his hands to turn in at the wrist.
He never had all his permanent teeth so we tried to save his baby
teeth but with his oversize tongue it caused his mouth to mishape.
You could put two fingers on top of each other in his mouth in front
with his other teeth touching. After years of fighting with
dentists, oral facial doctors his mouth was finally fixed where his
teeth meet in front. They took bone from his hip to give shape to
upper jaw, removed some bone from lower jaw to pull it back. Oh,
2yrs prior he had all his teeth pulled in preparetion for surgery.
They made dentures for him but now he cant open his mouth wide
enough to get a bite of a sandwich or put a forkfull of food in his
mouth when he has the dentures in.
One of the biggest problems I have with Jim is his fantasies. If
you tell him we are going camping soon, that is all he talks about
and what he wants to do but he cant do them. He has trouble walking
straight so cant take him hiking. Once he gets on idea in his head
he talks about it for weeks on weeks and gets mad when I tell him it
will not happen. For instance, his younger brother got married last
summer, Jim was with me at the wedding and one of the bridesmaids
danced with him, now all he talks about is going dancing with his
girlfriend, getting married, buying white tux and shoes. Then there
are times he will act like a young adolescent. Like I said he is 31
but is 6'4", 210#, size 13 shoe.
I have been to numerous doctors, psyciatrists with no help. No one
can tell me what to expect, will he continue like he is, will he
regress mentally. I have a local doctor that is Jim's primary care
and he says he knows about his syndrome but he cant give me any
advice or suggestions when I have problems with Jimmy.
I have always wondered if they are other kids with 49 chromosomes
and wonder how their parents handle them. I am divorced from his
father and the man I am married to is no help at all.
We live in Warren County, Twenty Mile Stand, Deerfield township,
Ohio. We are about 5 mins from Kings Island.
If anyone would like to talk please email me.
Catherine