from Friday, May 12, 2006 11:02AM
My favorite "Mother" Story
I was asked to enter a writing contest
by submitting my favorite "mother" story.
The prize was a nice gift certificate to Bath & Body.
Whether I win that prize or not was not
that important to me.
But the message in the story
and the feelings in it,
I am happy to share.
I thought I would now share it with all of you.
Read below:
My young son looks up at me,
his blue eyes shining,
but his mouth unable to emit words.
A tube down his throat, taped at his top lip
gets in the way
so even though he is moving his mouth
to say the words, I cannot make them out.
He so desperately wants me to understand him;
and we both feel like I should, I am his mother.
But no matter how frantically
I try to come up with guesses,
I just cannot figure out
what he is trying to say.
Maybe he could write something to me –
but he hasn’t learned to spell many words,
and his hand is bound, so even that doesn’t help.
In fact, it only makes it worse;
he becomes more frustrated
and tears form in his eyes.
If only he could get up out of his bed
to go get an object
to help me understand.
What could be worse
than to have tubes in your mouth
and nostrils, IV's attached to your arms,
having to wear diapers
far beyond potty training years
and you can't even get your own mother
to understand your needs?
That describes many days my son and I faced
in the weeks leading up to his 9th birthday –
a day we would mark in isolation
in the pediatric intensive care unit in the hospital.
That birthday seemed like it would be our most dreary
and depressing – because my son
would not be able to have any of his friends
or much of his family around him.
He would not yet be able to eat cake
or even be free of all the tubes
binding him to his hospital bed.
Those days in the hospital,
I cried so many tears –
as I thought of the party I did not get to plan for him,
and all the things I was sure he was feeling.
But the only time I would let myself cry
was when I knew he was sleeping
or I went into another room.
I was so busy being so strong for him,
but inside, I was crumbling.
The day of his birthday finally arrived.
His nurses and hospital staff tried their very best
to make Josh smile.
They brought him gifts, balloons and decorations.
They sang to him and promised a cake the moment
he could eat some.
Then, our church family got into the act –
they collected money and taped it to a giant card.
They brought that plus bags and bags of gifts for him.
He probably got more birthday presents this year
than he got in the last five altogether!
And we got to throw him a party
a few weeks later
once we got home.
We combined the occasions –
getting to come home from the hospital
with his belated birthday and
invited friends and family and
we all enjoyed ourselves.
And for this party –
to make sure there was enough –
we baked four cakes!
What makes this story my favorite, as a mother,
was to see just how well my son accepted
such terrible medical circumstances,
to feel the love so many people showered upon us
and the one on one time I got to spend
with my son that would not have been possible otherwise.
I will always cherish that time,
despite the difficulties.
I hope that story blesses you like it does me.
Have a wonderful day!
Vanessa
Thursday, September 24, 2009
Tuesday, September 22, 2009
breaking down ROHHAD
ROHHAD stands for
Rapid Onset Obesity with
Hypothalamic Dysfunction,
Hypoventilation and
Autonomic Dysregulation
Whenever someone asks what Joshua has, it is sure a mouthfull to give the full name of the diagnosis.. but that is it.
So, let's break it down and give some definitions and examples, to help everyone better understand it.
Rapid Onset Obesity
seems pretty self explanatory
you gain a great deal of weight very quickly even when you don't suddenly begin overeating, etc.
Hypothalamic dysfunction
Overview
Hypothalamic dysfunction is a problem with the region of the brain called the hypothalamus, which helps control the pituitary gland and regulate many body functions.
Symptoms
Symptoms generally relate to the hormones that are missing. In children, there may be growth problems -- either too much growth or too little -- or puberty that occurs too early or too late.
Tumor symptoms:
Headaches, Loss of vision
Hypothyroidism symptoms:
Breast enlargement, Cold intolerance, Fatigue,
Hair or skin changes, Impotence,
Loss of body hair and muscle (in men),
Menstrual disturbance, Weight gain
Low adrenal function symptoms:
Dizziness, Weakness
Other, less common symptoms may include:
Body temperature disturbance,
Emotional abnormalities, Excess thirst,
Obesity, Uncontrolled urination
Kallmann's syndrome (a type of hypothalamic dysfunction that occurs in men) symptoms:
Lowered function of sexual hormones (hypogonadism)
Inability to smell
Treatment
Treatment depends on the cause of the hypothalamic dysfunction.
Tumors -- surgery or radiation
Hormonal deficiencies -- replace missing hormones
Specific treatments may be available for bleeding, infection, and other causes.
Causes
The hypothalamus helps control the pituitary gland, particularly in response to stress. The pituitary, in turn, controls the:
Adrenal glands, Ovaries, Testes, Thyroid gland
The hypothalamus also helps regulate:
Body temperature, Childbirth, Emotions,
Growth, Milk production, Salt and water balance,
Sleep, Weight and appetite
Causes of hypothalamic dysfunction include:
Anorexia, Bleeding, Bulimia,
Genetic disorders, Growths (tumors),
Head trauma, Infections and swelling (inflammation).
Malnutrition, Radiation, Surgery, Too much iron
The most common tumors in the area are craniopharyngiomas in children.
Tests & diagnosis
Blood or urine tests to determine levels of hormones such as:
Cortisol, Estrogen, Growth hormone,
Pituitary hormones, Prolactin,
Testosterone, Thyroid
Other possible tests:
Hormone injections followed by timed blood samples,
MRI or CT scans of the brain,
Visual field eye exam (if there is a tumor)
Prognosis
Many causes of hypothalamic dysfunction are treatable. Most of the time missing hormones can be replaced.
Prevention
Maintain a healthy diet and don't exercise too strenuously or lose weight too quickly. If you believe you have an eating disorder such as anorexia or bulimia, get medical attention: these conditions can be life-threatening.
If you have symptoms of a hormonal deficiency, discuss replacement therapy with your health care provider.
Complications
Complications of hypothalamic dysfunction depend on the cause.
Brain tumors:
Permanent blindness
Specific problems related to the brain area where the tumor occurs
Vision disorders
Hypothyroidism:
Heart problems
High cholesterol
Adrenal insufficiency:
Inability to deal with stress (such as surgery or infection)
Gonadal deficiency:
Heart disease
Impotence (in men)
Infertility
Thin bones (osteoporosis)
Growth hormone deficiency:
High cholesterol
Osteoporosis
Short stature (in children)
Weakness
When to contact a doctor
Call your doctor if you have:
Headaches
Symptoms of hormone excess or deficiency
Vision problems
Hypoventilation
from Wikipedia
In medicine, hypoventilation (also known as respiratory depression) occurs when ventilation is inadequate[1] (hypo means "below") to perform needed gas exchange. By definition it causes an increased concentration of carbon dioxide (hypercapnia) and respiratory acidosis.
Causes
It can be caused by medical conditions, such as stroke affecting the brain stem, by holding one's breath, or by drugs, typically when taken in overdose.
Effects
As a side effect of medicines or recreational drugs, hypoventilation may become potentially life-threatening. Many different CNS depressant drugs such as alcohol, benzodiazepines, barbiturates, GHB, sedatives and opiates produce respiratory depression when taken in large or excessive doses; however this is most commonly seen as a cause of death with opiates or opioids, particularly when they are combined with sedatives such as alcohol or benzodiazepines. Strong opiates, (fentanyl, heroin, morphine, etc), barbiturates, and the benzodiazepine, temazepam, are notorious for producing this effect; in an overdose, an individual may cease breathing entirely (go into respiratory arrest) which is rapidly fatal without treatment.
Treatment
Respiratory stimulants such as nikethamide were traditionally used to counteract respiratory depression from CNS depressant overdose, but were of only limited effectiveness. A new respiratory stimulant drug BIMU8 is currently being investigated which seems to be significantly more effective and may be useful for counteracting the respiratory depression produced by opiates and similar drugs without offsetting their therapeutic or recreational effects.
Associated conditions
Disorders referred to as "Congenital Central Hypoventilation Syndrome" or "CCHS" and "Rapid-Onset Obesity, Hypothalamic Dysfunction, Hypoventilation, with Autonomic Dysregulation" or ROHHAD are recognized. CCHS condition may be a significant factor in some cases of sudden infant death syndrome or SIDS, often termed "cot death" or "crib death."
The opposite condition is hyperventilation (too much ventilation), resulting in low carbon dioxide levels (hypocapnia), rather than hypercapnia.
Autonomic Dysregulation
from http://www.drmueller-healthpsychology.com/autonomic_dysregulation.html
What is Autonomic Dysregulation?
The autonomic nervous system controls most of the involuntary reflexive activities of the human body. The system is constantly working to regulate the glands and many of the muscles of the body through the release or uptake of the neurotransmitters acetylcholine and norepinephrine. The autonomic nervous system is made up of two primary parts: the sympathetic and parasympathetic systems.
The sympathetic nervous system prepares the body for emergencies or times of stress and is responsible for the body's "fight or flight" response when faced with a dangerous situation. During this response, the heart rate and blood pressure increase, the pupils of the eye dilate, and the digestive system slows down.
The parasympathetic system helps the body's functions return to normal after they have been stimulated by the sympathetic nervous system and also has some responsibility for keeping the body's immune system properly functioning.
Autonomic dysregulation involves malfunctioning of the autonomic nervous system, the portion of the nervous system that conveys impulses between the blood vessels, heart, and all the organs in the chest, abdomen, and pelvis and the brain (mainly the medulla, pons and hypothalamus).
Here is an article I found about a treatment for Hypothalamic Dysfunction
Immunoglobulin Therapy in Idiopathic Hypothalamic Dysfunction
Peter Huppke, MD, Alexander Heise, MD†, Kevin Rostasy, MD‡, Brenda Huppke, MD
Received 19 January 2009; accepted 18 March 2009.
Idiopathic hypothalamic dysfunction is a rare disorder presenting at age 3-7 years. Severe hypothalamic and brainstem dysfunction leads to death in 25% of patients. The disease is presumed to be autoimmune, or in some cases paraneoplastic. No successful treatment has been reported. Patient V. developed hyperphagia, hypersomnia, and extreme aggression at age 7 years, accompanied by episodes of hyperthermia, hypothermia, sinus bradycardia, hypernatremia, hyponatremia, persistent hyperprolactinemia, hypothyroidism, and growth-hormone deficiency. At age 9 years, a diagnosis of idiopathic hypothalamic dysfunction was rendered, and immunoglobulin therapy was commenced. Nine courses of immunoglobulins, at a dose of 2 g/kg every 4 weeks, were administered. Reproducible improvements in behavior and no further episodes of hyponatremia or hypernatremia and sinus bradycardia were evident. The endocrinologic abnormalities and poor thermoregulation remained. Administration of immunoglobulins during late stages of idiopathic hypothalamic dysfunction led to improvement in some but not all signs. Assuming an autoimmune basis for this disorder, treatment during early stages of disease should be more effective. To facilitate such early treatment, increased awareness of this disorder is necessary, to allow for early diagnosis.
Department of Pediatrics and Pediatric Neurology, Georg August University, Göttingen, Germany
† Department of Child and Adolescent Psychiatry, Georg August University, Göttingen, Germany
‡ Division of Pediatric Neurology, Department of Pediatrics, Medical University of Innsbruck, Innsbruck, Austria
Communications should be addressed to: Dr. Huppke; Department of Pediatrics and Pediatric Neurology; Faculty of Medicine, Georg August University; Robert-Koch-Strasse 40; D-37075 Göttingen, Germany.
PII: S0887-8994(09)00163-5
doi:10.1016/j.pediatrneurol.2009.03.017
© 2009 Elsevier Inc. All rights reserved.
Rapid Onset Obesity with
Hypothalamic Dysfunction,
Hypoventilation and
Autonomic Dysregulation
Whenever someone asks what Joshua has, it is sure a mouthfull to give the full name of the diagnosis.. but that is it.
So, let's break it down and give some definitions and examples, to help everyone better understand it.
Rapid Onset Obesity
seems pretty self explanatory
you gain a great deal of weight very quickly even when you don't suddenly begin overeating, etc.
Hypothalamic dysfunction
Overview
Hypothalamic dysfunction is a problem with the region of the brain called the hypothalamus, which helps control the pituitary gland and regulate many body functions.
Symptoms
Symptoms generally relate to the hormones that are missing. In children, there may be growth problems -- either too much growth or too little -- or puberty that occurs too early or too late.
Tumor symptoms:
Headaches, Loss of vision
Hypothyroidism symptoms:
Breast enlargement, Cold intolerance, Fatigue,
Hair or skin changes, Impotence,
Loss of body hair and muscle (in men),
Menstrual disturbance, Weight gain
Low adrenal function symptoms:
Dizziness, Weakness
Other, less common symptoms may include:
Body temperature disturbance,
Emotional abnormalities, Excess thirst,
Obesity, Uncontrolled urination
Kallmann's syndrome (a type of hypothalamic dysfunction that occurs in men) symptoms:
Lowered function of sexual hormones (hypogonadism)
Inability to smell
Treatment
Treatment depends on the cause of the hypothalamic dysfunction.
Tumors -- surgery or radiation
Hormonal deficiencies -- replace missing hormones
Specific treatments may be available for bleeding, infection, and other causes.
Causes
The hypothalamus helps control the pituitary gland, particularly in response to stress. The pituitary, in turn, controls the:
Adrenal glands, Ovaries, Testes, Thyroid gland
The hypothalamus also helps regulate:
Body temperature, Childbirth, Emotions,
Growth, Milk production, Salt and water balance,
Sleep, Weight and appetite
Causes of hypothalamic dysfunction include:
Anorexia, Bleeding, Bulimia,
Genetic disorders, Growths (tumors),
Head trauma, Infections and swelling (inflammation).
Malnutrition, Radiation, Surgery, Too much iron
The most common tumors in the area are craniopharyngiomas in children.
Tests & diagnosis
Blood or urine tests to determine levels of hormones such as:
Cortisol, Estrogen, Growth hormone,
Pituitary hormones, Prolactin,
Testosterone, Thyroid
Other possible tests:
Hormone injections followed by timed blood samples,
MRI or CT scans of the brain,
Visual field eye exam (if there is a tumor)
Prognosis
Many causes of hypothalamic dysfunction are treatable. Most of the time missing hormones can be replaced.
Prevention
Maintain a healthy diet and don't exercise too strenuously or lose weight too quickly. If you believe you have an eating disorder such as anorexia or bulimia, get medical attention: these conditions can be life-threatening.
If you have symptoms of a hormonal deficiency, discuss replacement therapy with your health care provider.
Complications
Complications of hypothalamic dysfunction depend on the cause.
Brain tumors:
Permanent blindness
Specific problems related to the brain area where the tumor occurs
Vision disorders
Hypothyroidism:
Heart problems
High cholesterol
Adrenal insufficiency:
Inability to deal with stress (such as surgery or infection)
Gonadal deficiency:
Heart disease
Impotence (in men)
Infertility
Thin bones (osteoporosis)
Growth hormone deficiency:
High cholesterol
Osteoporosis
Short stature (in children)
Weakness
When to contact a doctor
Call your doctor if you have:
Headaches
Symptoms of hormone excess or deficiency
Vision problems
Hypoventilation
from Wikipedia
In medicine, hypoventilation (also known as respiratory depression) occurs when ventilation is inadequate[1] (hypo means "below") to perform needed gas exchange. By definition it causes an increased concentration of carbon dioxide (hypercapnia) and respiratory acidosis.
Causes
It can be caused by medical conditions, such as stroke affecting the brain stem, by holding one's breath, or by drugs, typically when taken in overdose.
Effects
As a side effect of medicines or recreational drugs, hypoventilation may become potentially life-threatening. Many different CNS depressant drugs such as alcohol, benzodiazepines, barbiturates, GHB, sedatives and opiates produce respiratory depression when taken in large or excessive doses; however this is most commonly seen as a cause of death with opiates or opioids, particularly when they are combined with sedatives such as alcohol or benzodiazepines. Strong opiates, (fentanyl, heroin, morphine, etc), barbiturates, and the benzodiazepine, temazepam, are notorious for producing this effect; in an overdose, an individual may cease breathing entirely (go into respiratory arrest) which is rapidly fatal without treatment.
Treatment
Respiratory stimulants such as nikethamide were traditionally used to counteract respiratory depression from CNS depressant overdose, but were of only limited effectiveness. A new respiratory stimulant drug BIMU8 is currently being investigated which seems to be significantly more effective and may be useful for counteracting the respiratory depression produced by opiates and similar drugs without offsetting their therapeutic or recreational effects.
Associated conditions
Disorders referred to as "Congenital Central Hypoventilation Syndrome" or "CCHS" and "Rapid-Onset Obesity, Hypothalamic Dysfunction, Hypoventilation, with Autonomic Dysregulation" or ROHHAD are recognized. CCHS condition may be a significant factor in some cases of sudden infant death syndrome or SIDS, often termed "cot death" or "crib death."
The opposite condition is hyperventilation (too much ventilation), resulting in low carbon dioxide levels (hypocapnia), rather than hypercapnia.
Autonomic Dysregulation
from http://www.drmueller-healthpsychology.com/autonomic_dysregulation.html
What is Autonomic Dysregulation?
The autonomic nervous system controls most of the involuntary reflexive activities of the human body. The system is constantly working to regulate the glands and many of the muscles of the body through the release or uptake of the neurotransmitters acetylcholine and norepinephrine. The autonomic nervous system is made up of two primary parts: the sympathetic and parasympathetic systems.
The sympathetic nervous system prepares the body for emergencies or times of stress and is responsible for the body's "fight or flight" response when faced with a dangerous situation. During this response, the heart rate and blood pressure increase, the pupils of the eye dilate, and the digestive system slows down.
The parasympathetic system helps the body's functions return to normal after they have been stimulated by the sympathetic nervous system and also has some responsibility for keeping the body's immune system properly functioning.
Autonomic dysregulation involves malfunctioning of the autonomic nervous system, the portion of the nervous system that conveys impulses between the blood vessels, heart, and all the organs in the chest, abdomen, and pelvis and the brain (mainly the medulla, pons and hypothalamus).
Here is an article I found about a treatment for Hypothalamic Dysfunction
Immunoglobulin Therapy in Idiopathic Hypothalamic Dysfunction
Peter Huppke, MD, Alexander Heise, MD†, Kevin Rostasy, MD‡, Brenda Huppke, MD
Received 19 January 2009; accepted 18 March 2009.
Idiopathic hypothalamic dysfunction is a rare disorder presenting at age 3-7 years. Severe hypothalamic and brainstem dysfunction leads to death in 25% of patients. The disease is presumed to be autoimmune, or in some cases paraneoplastic. No successful treatment has been reported. Patient V. developed hyperphagia, hypersomnia, and extreme aggression at age 7 years, accompanied by episodes of hyperthermia, hypothermia, sinus bradycardia, hypernatremia, hyponatremia, persistent hyperprolactinemia, hypothyroidism, and growth-hormone deficiency. At age 9 years, a diagnosis of idiopathic hypothalamic dysfunction was rendered, and immunoglobulin therapy was commenced. Nine courses of immunoglobulins, at a dose of 2 g/kg every 4 weeks, were administered. Reproducible improvements in behavior and no further episodes of hyponatremia or hypernatremia and sinus bradycardia were evident. The endocrinologic abnormalities and poor thermoregulation remained. Administration of immunoglobulins during late stages of idiopathic hypothalamic dysfunction led to improvement in some but not all signs. Assuming an autoimmune basis for this disorder, treatment during early stages of disease should be more effective. To facilitate such early treatment, increased awareness of this disorder is necessary, to allow for early diagnosis.
Department of Pediatrics and Pediatric Neurology, Georg August University, Göttingen, Germany
† Department of Child and Adolescent Psychiatry, Georg August University, Göttingen, Germany
‡ Division of Pediatric Neurology, Department of Pediatrics, Medical University of Innsbruck, Innsbruck, Austria
Communications should be addressed to: Dr. Huppke; Department of Pediatrics and Pediatric Neurology; Faculty of Medicine, Georg August University; Robert-Koch-Strasse 40; D-37075 Göttingen, Germany.
PII: S0887-8994(09)00163-5
doi:10.1016/j.pediatrneurol.2009.03.017
© 2009 Elsevier Inc. All rights reserved.
Monday, September 21, 2009
Joshua's 13th Birthday (party slideshow)
I put together a great slideshow of Joshua's 13th Birthday party.
For some reason, though, when I try to embed that slideshow here on my blog, it does not want to show the correct slideshow. In fact, it takes somebody else's slideshow and inserts it here. I have no idea why.
For some reason, though, when I try to embed that slideshow here on my blog, it does not want to show the correct slideshow. In fact, it takes somebody else's slideshow and inserts it here. I have no idea why.
I did get the slideshow to show up on my MySpace blog.
You can see it at this website:
http://blogs.myspace.com/index.cfm?fuseaction=blog.view&friendId=50554238&blogId=511083705
Or see the slideshow on RockYou.com where I made it: http://www.rockyou.com/show_my_gallery.php?source=ppsl&instanceid=153167811
There are some great pictures on there not only of Josh
Or see the slideshow on RockYou.com where I made it: http://www.rockyou.com/show_my_gallery.php?source=ppsl&instanceid=153167811
There are some great pictures on there not only of Josh
and his friends who were able to come to the party,
but of his sister, Steff (who is 23 weeks pregnant)
and her husband & his mother.
We have some folks we'd like to say
We have some folks we'd like to say
a special thank you to...
PAPA JOHN'S PIZZA on FM 3009 in Schertz... for donating 8 pizzas for Joshua's party
HEB BAKERY at I-35 and FM 3009 in Schertz... for donating a full sheet sized cake for Joshua's party
PARTY CITY in the Forum Shopping Center at I-35 & Loop 1604 in Selma/Live Oak... for donating a balloon bouquet for the party.
STARBUCKS on I-35 in Schertz for donating a Frappacino & large cookie to Josh for his birthday
If you get a chance, visit these businesses
and make sure to tell them thank you from us
when you drop by.
Oh, and thank you Nurse Nancy for arranging for all the donations!
You all helped make Joshua's birthday the best one yet!!!
Oh, and thank you Nurse Nancy for arranging for all the donations!
You all helped make Joshua's birthday the best one yet!!!
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