I'm trying to find a diagnosis for my daughter who is having uncontrollable
seizures. She is currently seeing several specialists, but none of them know
what is wrong. (We have seen a child neurologist, a pulminologist, a
gastroenterologist, a geneticist, and an opthamologist)
Here is a brief history of the situation:
My daughter is currently 6 mos. old. While my wife was pregnant, she
occasionally felt "quivering" coming from the baby. The doctors said that it
was normal and not to worry about it. My wife had a very easy pregnancy and it
was only at delivery that the problems began. She tried to have the baby
{*filter*}lly, but because of a poor fit, we opted for a C-section after about an
hour of pushing. The fetal monitor had been taken off in order to use forceps,
and so we don't know how the baby did for oxygen during that time. It took two
doctors pulling and one nurse pushing to get the wedged baby out of the birth
canal. The baby had a 1, 5, & 7 for APGAR scores, and was taken immediately to
NICU. She was put on oxygen for 2 days, and remained in the hospital for 9 days
because of extreme hypotonia and the inability to eat. She was having small
seizures, but they were fairly few and far between. The doctor was not
convinced they were seizures as we described them. Because she has clonis, he
thought they may be muscle spasms. Also, she constantly sounded raspy because
she was unable to swallow her secretions completely.
We finally took her home with an NG tube and began trying to feed her. The
cooking.net">food she couldn't/wouldn't take by mouth we put down the NG tube. She improved
in sucking and swallowing, but only took her full 4 oz. feeding by mouth once.
At 4 weeks she was put on Phenobarb to control her seizures, but after a month
of uncontrolled seizures we started weening her off.
Two months after birth she came down with pneumonia and returned to the
hospital. After 5 days she was released, only to be returned the following day
with a respitory condition that forced her to be on a ventilator for two days.
An interesting note here is that while she was on the IV, she had absolutely no
seizures. Eight days later we brought her home again, this time with oxygen.
We started her on Tegritol for the seizures. Two months later it still is not
working and we are just finishing the weening-off process of this medication.
The doctors gave her an upper-GI and found she was aspirating some of her food,
and thought that her pneumonia might have been caused by this. She also had a
PH-probe done and found she was refluxing. In order to protect her lungs, she
was put on continuous feedings. She was still seizing fairly regularly.
Finally, two weeks ago, we took her in to have some surgery done. They
inserted a G-tube, and performed a nissen fundalplication. Again, while she
was in the hospital, she had very few seizures. She has just recently been
taken off oxygen as her sat levels seem to remain consistently in the low 90's.
She has had an MRI, a CTScan, 2 EEG's, 2 metabolic tests, a brain ultrasound,
and several {*filter*} tests. All were normal. At her last check up, the doctor
noted that her head was not growing as quickly as it should be, as it was only
25% of normal for her age. She is still seizing sometimes very often,
sometimes not. Tuesday she had maybe 50 seizures, yesterday she may have had
2. We can't figure out what initiates her seizures as everything we do is
pretty much a routine. Her cooking.net">food and feeding schedules remain the same. She
usually has a seizure when someone or something wakes her out of a light sleep.
She is still very hypotonic and the opthomolgist has perscribed eyeglasses for
severe far-sightedness. She has a pale optic nerve.
My hope is that someone will recognize some of these symptoms and maybe give us
a direction to pursue.
Please e-mail me with any comments.
Thank you in advance.
Rich
--
Rich
Newsgroups: sci.med
Subject: Unknown Diagnosis
Summary:
Expires:
Distribution: world
Organization: Brigham Young University, Provo, Utah
Keywords:
Cc:
I'm trying to find a diagnosis for my daughter who is having uncontrollable
seizures. She is currently seeing several specialists, but none of them know
what is wrong. (We have seen a child neurologist, a pulminologist, a
gastroenterologist, a geneticist, and an opthamologist)
Here is a brief history of the situation:
My daughter is currently 6 mos. old. While my wife was pregnant, she
occasionally felt "quivering" coming from the baby. The doctors said that it
was normal and not to worry about it. My wife had a very easy pregnancy and it
was only at delivery that the problems began. She tried to have the baby
{*filter*}lly, but because of a poor fit, we opted for a C-section after about an
hour of pushing. The fetal monitor had been taken off in order to use forceps,
and so we don't know how the baby did for oxygen during that time. It took two
doctors pulling and one nurse pushing to get the wedged baby out of the birth
canal. The baby had a 1, 5, & 7 for APGAR scores, and was taken immediately to
NICU. She was put on oxygen for 2 days, and remained in the hospital for 9 days
because of extreme hypotonia and the inability to eat. She was having small
seizures, but they were fairly few and far between. The doctor was not
convinced they were seizures as we described them. Because she has clonis, he
thought they may be muscle spasms. Also, she constantly sounded raspy because
she was unable to swallow her secretions completely.
We finally took her home with an NG tube and began trying to feed her. The
cooking.net">food she couldn't/wouldn't take by mouth we put down the NG tube. She improved
in sucking and swallowing, but only took her full 4 oz. feeding by mouth once.
At 4 weeks she was put on Phenobarb to control her seizures, but after a month
of uncontrolled seizures we started weening her off.
Two months after birth she came down with pneumonia and returned to the
hospital. After 5 days she was released, only to be returned the following day
with a respitory condition that forced her to be on a ventilator for two days.
An interesting note here is that while she was on the IV, she had absolutely no
seizures. Eight days later we brought her home again, this time with oxygen.
We started her on Tegritol for the seizures. Two months later it still is not
working and we are just finishing the weening-off process of this medication.
The doctors gave her an upper-GI and found she was aspirating some of her food,
and thought that her pneumonia might have been caused by this. She also had a
PH-probe done and found she was refluxing. In order to protect her lungs, she
was put on continuous feedings. She was still seizing fairly regularly.
Finally, two weeks ago, we took her in to have some surgery done. They
inserted a G-tube, and performed a nissen fundalplication. Again, while she
was in the hospital, she had very few seizures. She has just recently been
taken off oxygen as her sat levels seem to remain consistently in the low 90's.
She has had an MRI, a CTScan, 2 EEG's, 2 metabolic tests, a brain ultrasound,
and several {*filter*} tests. All were normal. At her last check up, the doctor
noted that her head was not growing as quickly as it should be, as it was only
25% of normal for her age. She is still seizing sometimes very often,
sometimes not. Tuesday she had maybe 50 seizures, yesterday she may have had
2. We can't figure out what initiates her seizures as everything we do is
pretty much a routine. Her cooking.net">food and feeding schedules remain the same. She
usually has a seizure when someone or something wakes her out of a light sleep.
She is still very hypotonic and the opthomolgist has perscribed eyeglasses for
severe far-sightedness. She has a pale optic nerve.
My hope is that someone will recognize some of these symptoms and maybe give us
a direction to pursue.
Please e-mail me with any comments.
Thank you in advance.
Rich
--
Rich
Unknown Diagnosis