OCD.
It's a monster.
3 letters.
It controls Paige's life. Every aspect. Every move she makes. Every move we make.
I've waited to post this because we were trying so hard to focus on the good news at school. But, OCD doesn't care about the good news. That freakin monster never sleeps.
Her arms and legs have sores all over them. She picks the scabs because OCD tells her to. Her clothes have blood stained spots on them. Her sheets too.
Last week OCD told her to get killed. Hubby and I were walking in the parking lot, talking to her and then she was gone. We turned around to find her in the middle of the lot. We yelled to her to come back to us. She cried and explained that her OCD thoughts told her "to run into the parking lot and get killed."
She tries to fight this monster. She really does. But, according to her, the harder she fights, the stronger and louder the OCD thoughts get. She tries to give in to it, just a little, to make the thoughts go away.
She came home Friday, after spending a few days with her grandparents. She had a lot of fun. They treat her really good and she loves being there.
After a few moments of being home she started to cry. She climbed up on my lap and was shaking, her arms spotted with bloody scabs.
She begged me to help her stop.
She begged me to find a different medicine.
She begged me to stop the thoughts.
She fought so hard to control the picking while she was at her grandparents house. Now that she was home the floodgates were opened. Normally we tell her not to pick but to fight the monster instead. We encourage her and tell her that her brain is in control and she can beat the OCD monster. But, that day she was losing. By telling her to fight it, it caused the monster to get stronger. So, we told her to go ahead and pick. She was so relieved. The look on her face was one that we hadn't seen in so long. Even though the monster was winning and she had open boo boos, she was relieved to not have to fight.
We took her out to her favorite place to eat and then kept her busy by going to a few stores and being silly in the car on the way home. It was nice to hear her laugh so much.
But, when we got home she sat by me and begged again.
"Help me Mom."
I'm really trying Paige.
Sunday, October 14, 2007
Friday, October 12, 2007
"You're Talking About My Life!"
This has been said to me a few times since I've started this blog, but the emotion attached to it has been very different.
I have received many emails from parents who are happy when they find my blog. They cannot believe they are not alone. My experiences and those expressed in the comments echo their life. They are grateful for my words.
Then there are the few emails that I have received from parents who think I am actually talking about them. They are angry because they think I've used their experiences and claimed them as my own.
For the record, all of the posts in this blog are written by me and are about my life (unless specifically stated). If you think you recognize an aspect of my life, in your own, it is because there a lot of very common long term effects of prematurity.
On a side note... if you send me a private email, I will NEVER use the information in my blog unless I ask you first. Never. I hold private emails in very high regard and appreciate each and every one that I receive.
I have received many emails from parents who are happy when they find my blog. They cannot believe they are not alone. My experiences and those expressed in the comments echo their life. They are grateful for my words.
Then there are the few emails that I have received from parents who think I am actually talking about them. They are angry because they think I've used their experiences and claimed them as my own.
For the record, all of the posts in this blog are written by me and are about my life (unless specifically stated). If you think you recognize an aspect of my life, in your own, it is because there a lot of very common long term effects of prematurity.
On a side note... if you send me a private email, I will NEVER use the information in my blog unless I ask you first. Never. I hold private emails in very high regard and appreciate each and every one that I receive.
Thursday, October 4, 2007
I Never Saw It Coming
Over and over we deal with new issues with Paige (former 25.5 weeker-now almost 9). It's never ending. A test for this, a medicine for that. A new diagnosis here, a suspicion there.
I'm always on guard. Ready and waiting for the Mack truck to hit us again. I pick up the pieces, adjust our lives and attempt to move on.
But one day last week, when our son (born at 35.4 weeks-now 17 months old) started excessively clearing his throat, I chalked it up to a new skill he learned and obviously figured out that it drove me nuts. And when, that same night, he was red and wheezy, I chalked it up to all of the running around he did at his sister's school.
But, when he woke up the next morning, hives everywhere, face so swollen that he could not open one eye and edema so bad that he looked like he was growing a horn out of the middle of his forehead, I froze.
After going over everything he ate the day before, I realized that he had a bite of a peanut butter and jelly sandwich. That couldn't be it, right?
A trip to the doc, 2 days of antihistamine and a visit to the allergist a week later.
Which lands us on today.
It was at the allergist office that the freakin Mack truck came out of nowhere and flattened me.
My son.
Life threatening peanut allergy.
Less than 2 minutes after his skin was pricked with the peanut and tree nut allergen he was wheezing, coughing, rubbing his nose and freaking out because he couldn't breathe good.
Blah, Blah, Blah... EpiPen at all times... Blah, Blah, Blah Life threatening reaction.... Blah, Blah, Blah... Watch that Paige doesn't give him anything to eat.... Blah, Blah, Blah... A bunch of other words flowed from his mouth.
To the driver of the Mack truck... could you please find it in your heart to blow your horn so I have a little warning before you hit me again?
I'm always on guard. Ready and waiting for the Mack truck to hit us again. I pick up the pieces, adjust our lives and attempt to move on.
But one day last week, when our son (born at 35.4 weeks-now 17 months old) started excessively clearing his throat, I chalked it up to a new skill he learned and obviously figured out that it drove me nuts. And when, that same night, he was red and wheezy, I chalked it up to all of the running around he did at his sister's school.
But, when he woke up the next morning, hives everywhere, face so swollen that he could not open one eye and edema so bad that he looked like he was growing a horn out of the middle of his forehead, I froze.
After going over everything he ate the day before, I realized that he had a bite of a peanut butter and jelly sandwich. That couldn't be it, right?
A trip to the doc, 2 days of antihistamine and a visit to the allergist a week later.
Which lands us on today.
It was at the allergist office that the freakin Mack truck came out of nowhere and flattened me.
My son.
Life threatening peanut allergy.
Less than 2 minutes after his skin was pricked with the peanut and tree nut allergen he was wheezing, coughing, rubbing his nose and freaking out because he couldn't breathe good.
Blah, Blah, Blah... EpiPen at all times... Blah, Blah, Blah Life threatening reaction.... Blah, Blah, Blah... Watch that Paige doesn't give him anything to eat.... Blah, Blah, Blah... A bunch of other words flowed from his mouth.
To the driver of the Mack truck... could you please find it in your heart to blow your horn so I have a little warning before you hit me again?
This was taken less than 5 minutes after his skin was pricked.
Sunday, September 30, 2007
Working on the Blog
I am going to take a short break from posting.
I am trying to devote my "blog time" to figuring out a way to categorize all of the great research/studies/links that people have been providing. I want to make it easy for someone to locate the link they are looking for.
I've gotten a few emails from people who remember seeing a link to a bit of research but then they can't remember which post they saw it in. And honestly, neither can I.
So, bear with me.
Check back soon.
I promise to be back.
I am trying to devote my "blog time" to figuring out a way to categorize all of the great research/studies/links that people have been providing. I want to make it easy for someone to locate the link they are looking for.
I've gotten a few emails from people who remember seeing a link to a bit of research but then they can't remember which post they saw it in. And honestly, neither can I.
So, bear with me.
Check back soon.
I promise to be back.
Wednesday, September 26, 2007
Time to Brag
I had a conference with Paige's 3rd grade teacher on Monday. She has just finished the grade tests and he wanted to share the results.
In reading she is on a 6th grade level!
In math she is on a 4th grade level!
To be honest, the math surprised me. She struggles terribly with math facts. But, from what I understand, this tests focuses on the child understanding the concepts, which she does.
She is an amazing child to be able to focus in school despite her mental health issues, severe sensory issues and the fact that her EEG shows that she is still having continuous spikes. We are both in awe of her spirit!
Bragging feels good!
Thursday, September 20, 2007
Does Cerebellar Injury in Premature Infants Contribute to the High Prevalence of Long-term Cognitive, Learning, and Behavioral Disability in Survivors
Published online August 31, 2007PEDIATRICS Vol. 120 No. 3 September 2007, pp. 584-593 (doi:10.1542/peds.2007-1041)
Does Cerebellar Injury in Premature Infants Contribute to the High Prevalence of Long-term Cognitive, Learning, and Behavioral Disability in Survivors?
Catherine Limperopoulos, PhDa,b, Haim Bassan, MDb, Kimberlee Gauvreau, ScDc, Richard L. Robertson, Jr, MDd, Nancy R. Sullivan, PhDe, Carol B. Benson, MDf, Lauren Avery, PhDg, Jane Stewart, MDh, Janet S. Soul MD, CM FRCPCb, Steven A. Ringer, MD, PhDi, Joseph J. Volpe, MDb and Adré J. duPlessis, MBChB, MPHb
OBJECTIVE. Although cerebellar hemorrhagic injury is increasingly diagnosed in infants who survive premature birth, its long-term neurodevelopmental impact is poorly defined. We sought to delineate the potential role of cerebellar hemorrhagic injury in the long-term disabilities of survivors of prematurity.
DESIGN. We compared neurodevelopmental outcome in 3 groups of premature infants (N = 86; 35 isolated cerebellar hemorrhagic injury, 35 age-matched controls, 16 cerebellar hemorrhagic injury plus supratentorial parenchymal injury). Subjects underwent formal neurologic examinations and a battery of standardized developmental, functional, and behavioral evaluations (mean age: 32.1 ± 11.1 months). Autism-screening questionnaires were completed.
RESULTS. Neurologic abnormalities were present in 66% of the isolated cerebellar hemorrhagic injury cases compared with 5% of the infants in the control group. Infants with isolated cerebellar hemorrhagic injury versus controls had significantly lower mean scores on all tested measures, including severe motor disabilities (48% vs 0%), expressive language (42% vs 0%), delayed receptive language (37% vs 0%), and cognitive deficits (40% vs 0%). Isolated cerebellar hemorrhagic injury was significantly associated with severe functional limitations in day-to-day activities. Significant differences were noted between cases of cerebellar hemorrhagic injury versus controls on autism screeners (37% vs 0%) and internalizing behavioral problems (34% vs 9%). Global developmental, functional, and social-behavioral deficits were more common and profound in preterm infants with injury to the vermis. Preterm infants with cerebellar hemorrhagic injury and supratentorial parenchymal injury were not at overall greater risk for neurodevelopmental disabilities, although neuromotor impairment was more severe.
CONCLUSIONS. Cerebellar hemorrhagic injury in preterm infants is associated with a high prevalence of long-term pervasive neurodevelopment disabilities and may play an important and underrecognized role in the cognitive, learning, and behavioral dysfunction known to affect survivors.
Does Cerebellar Injury in Premature Infants Contribute to the High Prevalence of Long-term Cognitive, Learning, and Behavioral Disability in Survivors?
Catherine Limperopoulos, PhDa,b, Haim Bassan, MDb, Kimberlee Gauvreau, ScDc, Richard L. Robertson, Jr, MDd, Nancy R. Sullivan, PhDe, Carol B. Benson, MDf, Lauren Avery, PhDg, Jane Stewart, MDh, Janet S. Soul MD, CM FRCPCb, Steven A. Ringer, MD, PhDi, Joseph J. Volpe, MDb and Adré J. duPlessis, MBChB, MPHb
OBJECTIVE. Although cerebellar hemorrhagic injury is increasingly diagnosed in infants who survive premature birth, its long-term neurodevelopmental impact is poorly defined. We sought to delineate the potential role of cerebellar hemorrhagic injury in the long-term disabilities of survivors of prematurity.
DESIGN. We compared neurodevelopmental outcome in 3 groups of premature infants (N = 86; 35 isolated cerebellar hemorrhagic injury, 35 age-matched controls, 16 cerebellar hemorrhagic injury plus supratentorial parenchymal injury). Subjects underwent formal neurologic examinations and a battery of standardized developmental, functional, and behavioral evaluations (mean age: 32.1 ± 11.1 months). Autism-screening questionnaires were completed.
RESULTS. Neurologic abnormalities were present in 66% of the isolated cerebellar hemorrhagic injury cases compared with 5% of the infants in the control group. Infants with isolated cerebellar hemorrhagic injury versus controls had significantly lower mean scores on all tested measures, including severe motor disabilities (48% vs 0%), expressive language (42% vs 0%), delayed receptive language (37% vs 0%), and cognitive deficits (40% vs 0%). Isolated cerebellar hemorrhagic injury was significantly associated with severe functional limitations in day-to-day activities. Significant differences were noted between cases of cerebellar hemorrhagic injury versus controls on autism screeners (37% vs 0%) and internalizing behavioral problems (34% vs 9%). Global developmental, functional, and social-behavioral deficits were more common and profound in preterm infants with injury to the vermis. Preterm infants with cerebellar hemorrhagic injury and supratentorial parenchymal injury were not at overall greater risk for neurodevelopmental disabilities, although neuromotor impairment was more severe.
CONCLUSIONS. Cerebellar hemorrhagic injury in preterm infants is associated with a high prevalence of long-term pervasive neurodevelopment disabilities and may play an important and underrecognized role in the cognitive, learning, and behavioral dysfunction known to affect survivors.
Thursday, September 13, 2007
Resuscitation in the "Gray Zone" of Viability: Determining Physician Preferences and Predicting Infant Outcomes
Published online August 31, 2007PEDIATRICS Vol. 120 No. 3 September 2007, pp. 519-526 (doi:10.1542/peds.2006-2966)
ARTICLE
Resuscitation in the "Gray Zone" of Viability: Determining Physician Preferences and Predicting Infant OutcomesJaideep Singh, MD, MPHa,b, Jon Fanaroff, MD, JDc, Bree Andrews, MD, MPHa, Leslie Caldarelli, MDa, Joanne Lagatta, MDa, Susan Plesha-Troyke, OTa, John Lantos, MDa,b and William Meadow, MD, PhDa,b
a Department of Pediatricsb MacLean Center for Clinical Medical Ethics, University of Chicago, Chicago, Illinoisc Department of Pediatrics, Case Western Reserve University, Cleveland, Ohio
OBJECTIVE. We assessed physician preferences and physician prognostic abilities regarding delivery room management of exceedingly low birth weight/short gestation infants.
METHODS. We surveyed US neonatologists to assess their behavior in the delivery room when confronted with infants with gestational ages of 22 to 26 weeks. We identified 102 infants in our NICU with birth weights/gestational ages of 400 g/23 weeks to 750 g/26 weeks, whose follow-up care was ensured because of their participation in ongoing clinical trials. We determined 4 proxy measures for "how the infant looked" in the delivery room (Apgar scores at 1 and 5 minutes and heart rates at 1 and 5 minutes) and assessed the predictive value of each marker for subsequent death or neurologic morbidity.
RESULTS. For infants with birth weights of <500>600 g and gestational ages of 25 weeks, >90% of neonatologists considered resuscitation obligatory. For infants with birth weights of 500 to 600 g and gestational ages of 23 to 24 weeks, only one third of neonatologists responded that parental preference would determine whether they resuscitated the infant in the delivery room. The majority wanted "to see what the infant looked like." For 102 infants with birth weights of 750 g, Apgar scores at 1 and 5 minutes and heart rates at 1 and 5 minutes were neither sensitive nor predictive for death before discharge, survival with a neurologic abnormality, or intact neurologic survival.
CONCLUSIONS. The "gray zone" for delivery room resuscitation seems to be between 500 and 600 g and 23 and 24 weeks. For infants born in that zone, neonatologists' reliance on accurate prediction of death or morbidity in the delivery room may be misplaced.
ARTICLE
Resuscitation in the "Gray Zone" of Viability: Determining Physician Preferences and Predicting Infant OutcomesJaideep Singh, MD, MPHa,b, Jon Fanaroff, MD, JDc, Bree Andrews, MD, MPHa, Leslie Caldarelli, MDa, Joanne Lagatta, MDa, Susan Plesha-Troyke, OTa, John Lantos, MDa,b and William Meadow, MD, PhDa,b
a Department of Pediatricsb MacLean Center for Clinical Medical Ethics, University of Chicago, Chicago, Illinoisc Department of Pediatrics, Case Western Reserve University, Cleveland, Ohio
OBJECTIVE. We assessed physician preferences and physician prognostic abilities regarding delivery room management of exceedingly low birth weight/short gestation infants.
METHODS. We surveyed US neonatologists to assess their behavior in the delivery room when confronted with infants with gestational ages of 22 to 26 weeks. We identified 102 infants in our NICU with birth weights/gestational ages of 400 g/23 weeks to 750 g/26 weeks, whose follow-up care was ensured because of their participation in ongoing clinical trials. We determined 4 proxy measures for "how the infant looked" in the delivery room (Apgar scores at 1 and 5 minutes and heart rates at 1 and 5 minutes) and assessed the predictive value of each marker for subsequent death or neurologic morbidity.
RESULTS. For infants with birth weights of <500>600 g and gestational ages of 25 weeks, >90% of neonatologists considered resuscitation obligatory. For infants with birth weights of 500 to 600 g and gestational ages of 23 to 24 weeks, only one third of neonatologists responded that parental preference would determine whether they resuscitated the infant in the delivery room. The majority wanted "to see what the infant looked like." For 102 infants with birth weights of 750 g, Apgar scores at 1 and 5 minutes and heart rates at 1 and 5 minutes were neither sensitive nor predictive for death before discharge, survival with a neurologic abnormality, or intact neurologic survival.
CONCLUSIONS. The "gray zone" for delivery room resuscitation seems to be between 500 and 600 g and 23 and 24 weeks. For infants born in that zone, neonatologists' reliance on accurate prediction of death or morbidity in the delivery room may be misplaced.
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