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.

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.

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)

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.

Sunday, September 9, 2007

Tiny Babies, Fragile Families

About a month ago I wrote about a writer, Andrea Ball, who was asking for input from preemie parents.

Andrea, a preemie parent herself, writes about a Texas family who have 3 preemies. This is not a piece glorifying prematurity but rather an honest account of life after the birth of a preemie (or 3).

Sending a HUGE thank you to the Nash family for being so open with their struggles. It is your honesty that will help others to know they are not alone.

Gratitude also goes to the families who sent their stories to Andrea. You can read about them on the right side bar in each story.

And, thank you to Andrea for being brave within her profession. If more people in the media could step out side of the box, like Andrea chose to do, the misconceptions of life with a preemie would start to change.

Part one

Part two

Friday, September 7, 2007

Free On-line CME Course-Spasticity

The Roles of Nursing, Physical Therapy, and Occupational Therapy in the Management of Spasticity and Movement Disorders Encountered in Persons with Cerebral Palsy

It will take place on September 11th.

If you've never "attended" one of these, sponsored by Exceptional Parent Magazine, give it a try. It's always well done and very informative.

Monday, September 3, 2007

Medical Bills and Insurance

(taking a deep breath)

First let me say that I used to be an insurance agent (main focus on auto, home and life). I love the idea of insurance, paying ahead of time so you are covered "just in case". I used to be an insurance junkie. Maximum coverage on auto and home, disability, liability umbrellas and let's not forget life insurance. We had it all. Having taken many claims, for all types of issues, I have seen what good coverage can do for a family during the worst times in their lives.

Then there is health insurance. Ugh!!!

When I was pregnant with Paige, we were paying for our own health insurance. An HMO. They paid for every bit of my prenatal care, every bit of *my* hospital stay when my water broke and every bit of my c-section.

Then comes Paige's NICU bills. Ouch. Her total bill was over $500,000. Insurance would not pay for any meds used "off label". Ummm... that accounts for almost all meds used in the NICU!

After all was said and done, we owed a boat load of money to the hospital. They refused to work with us. I called the insurance company. They refused to work with us. We spent the next year trying to pay off this enormous debt, along with all of the on-going medical bills that preemie families encounter in the beginning. Even though we had insurance, the co-pays and non covered items buried us. Then there are the bills that were piling up from the credit cards. We charged gas, food, etc while we were going back and forth to the NICU (90 miles away) for 78 days. We finally filed bankruptcy.

Every year our health insurance premiums went up. Since Paige was uninsurable, we were forced to pay out almost $1,000 per month in order to keep the policy! This was on top of paying the bills that they did not cover. Oh, the prescription coverage... max. the insurance company paid was $500 per year. Paige has Epilepsy. Two months of Trileptal and one fill of her rescue meds and we were over our limit!

After a few years hubby got a job with a very large company and one of the perks was health insurance! Whew, finally some relief.

Or so I thought.

Between our required out of pocket costs and paying for therapies that were not covered, we were still struggling. Then there are the co-pays. $30 for each specialist. Doesn't sound like much, right? But, when you see 10 specialists in one month, have an out-patient test done and have a few therapies, total medical bills for the month could easily top $1,000. I am thankful for the months when we only have to see a few specialists.

What about all of the on-going needs that insurance companies do not cover? What about doctors that are out of network when you don't have any doctors in your area who are in network?

Don't talk to me about state waivers... most all states have their criteria set so hardly anyone can qualify. Don't talk to me about financial assistance... hubby earns too much money and hardly any group will look beyond the paycheck and take the time to see how much we spend out of our own pocket.

We have it easy. I know of many families who struggle more than we do.

The only tip I can offer is to appeal every decision your insurance company makes. If you are not satisfied with the outcome, file a complaint with your state's Department of Insurance. It's easy to do. Use the search words "[insert your state here] department of insurance". You can even file the complaint on line. We have gotten a few big bills covered this way.

Financial strain... definitely needs to be included when discussing the list of long term issues related to prematurity!

(ok, before I end here, I know someone will email me or leave a comment that they feel that I am bitter about my daughter surviving. Move on people. I love my daughter. But that does not mean I cannot discuss our daily struggles.)