Sunday, July 19, 2015

Request from FEMA for a Child with Cerebral Palsy - Wheelchair and Hospital Bed


Please contact me or Linda Landers.  JR

Good Morning,


I am hoping I can take you up on your offer of assistance for children impacted by the flooding.  We have a 15 year old girl with cerebral palsy who has lost her wheelchair and bed.  

We are trying to find replacement equipment for her but have not been able to find anything at this point.  She uses a manual chair  with supports and a head rest. 

 The mother has indicated they do not have insurance. We are working with her to ensure she knows about social security and other government programs. 

 Even with that, it will take time to get a replacement and I am concerned about the risk to her health if she has to wait that long.  

Any suggestions you have would be greatly appreciated. 


"The information I have so far is the child is 15 years old.  She has a manual chair with head support.  She is a quadriplegic and only able to move her hands a little.  The mother is looking for the model number.  


We can check with volunteer agencies to see if they can do the delivery.  

She is in Edinburg (near McAllen).  

No info on the bed yet but apparently a hospital bed."

Thank your help.

Linda

Linda Landers, MPA
FEMA Region 6
Serving Arkansas, Louisiana, New Mexico, Oklahoma and Texas
800 N. Loop 288
Denton, TX 76205


If you require an accommodation due to a disability to access this information, contact Linda Landers at linda.landers@fema.dhs.gov or at 940-230-6765

Saturday, July 18, 2015

Talking to Children about disaster - Floods in Texas Oklahoma!

Friends, As many of you know, my family was affected by the memorial Day Houston floods. Thank God, we are OK. But our kids have responded in different ways. It took time for us to catch up and recognize some of these repossess since we are caught up in the mechanics of recover (what when how etc). 

Here is a nice resource.  - JR


Talking to Children About Disasters

 
Children can cope more effectively with a disaster when they feel they understand what is happening and what they can do to help protect themselves, family, and friends. Provide basic information to help them understand, without providing unnecessary details that may only alarm them.
For very young children, provide concrete explanations of what happened and how it will affect them (eg, a tree branch fell on electrical wires and that is why the lights don't work). Let children know there are many people who are working to help them and their community to recover after a disaster (such as repair crews for the electric company, or firefighters, police, paramedics, or other emergency personnel). Share with them all of the steps that are being taken to keep them safe; children will often worry that a disaster will occur again.

Older children will likely want, and benefit from, additional information about the disaster and recovery efforts. No matter what age, start by asking children what they already know and what questions they have and use that as a guide for the conversation. Limit media coverage of the disaster—if children are going to watch media coverage, consider taping it (to allow adults to preview) and watch along with them to answer questions and help them process the information. While children may seek and benefit from basic information about what happened so that they can understand what is happening in their world, they (and adults) don't benefit from graphic details or exposure to disturbing images or sounds.  In the aftermath of a crisis is a good time to disconnect from all media and sit down together and talk as a family.

Be sure to ask children what questions or concerns they have. Often they have fears based on limited information or because they misunderstood what they were told. Reassure children when able to do so, but if their fears are realistic, don't give false reassurance. Instead, help them learn how to cope with these feelings.


 - See more at: https://www.aap.org/en-us/advocacy-and-policy/aap-health-initiatives/Children-and-Disasters/Pages/Talking-to-Children-About-Disasters.aspx


Talking to Children about Disasters

Children can cope more effectively with a disaster when they feel they understand what is happening and what they can do to help protect themselves, family, and friends. Provide basic information to help them understand, without providing unnecessary details that may only alarm them.
  • Very Young Children: Provide concrete explanations of what happened and how it will affect them (e.g., a tree branch fell on electrical wires and that is why the lights do not work). Let children know there are many people who are working to help them and their community to recover after a disaster (such as repair crews for the electric company, or firefighters, police, paramedics, or other emergency personnel). Share with them all of the steps that are being taken to keep them safe; children will often worry that a disaster will occur again.
  • Older Children: They will likely want, and benefit from, additional information about the disaster and recovery efforts. No matter what age, start by asking children what they already know and what questions they have and use that as a guide for the conversation. Limit media coverage of the disaster—if children are going to watch media coverage, consider taping it (to allow adults to preview) and watch along with them to answer questions and help them process the information. While children may seek and benefit from basic information about what happened so that they can understand what is happening in their world, they (and adults) do not benefit from graphic det​ails or exposure to disturbing images or sounds. In the aftermath of a crisis is a good time to disconnect from all media and sit down together and talk as a family.
Be sure to ask children what questions or concerns they have. Often they have fears based on limited information or because they misunderstood what they were told. Reassure children when able to do so, but if their fears are realistic, do not give false reassurance. Instead, help them learn how to cope with these feelings. See the following articles for more information:

Dog Shaming: Sleeping Problems and Snoring Dogs!

Send us true pet confessions about their sleep problems! JR







Friday, July 10, 2015

Sleep disorders are more common in racial/ethic minorities

According to a recent study, sleep disturbances occur more frequently in middle-aged and older adults who are racial or ethnic minorities.

A new study suggests that sleep disturbances and undiagnosed sleep apnea are common among middle-aged and older adults in the U.S., and these sleep problems occur more frequently among racial/ethnic minorities.
Results show that 34 percent of participants had moderate or severe sleep-disordered breathing measured by polysomnography, and 31 percent had short sleep duration with less than 6 hours per night measured by actigraphy. Validated questionnaires also showed that 23 percent reported having insomnia, and 14 percent reported excessive daytime sleepiness. Only 9 percent of participants reported being told by a doctor that they had sleep apnea.
After adjustment for sex, age, and study site, blacks were most likely to have short sleep duration of less than six hours, and they were more likely than whites to have sleep apnea syndrome, poor sleep quality, and daytime sleepiness. Hispanics and Chinese were more likely than whites to have sleep-disordered breathing and short sleep duration, but Chinese were least likely to report having insomnia.
"Our findings underscore the very high prevalence of undiagnosed sleep disturbances in middle-aged and older adults, and identify racial/ethnic disparities that include differences in short sleep duration, sleep apnea and daytime sleepiness," said lead author Dr. Xiaoli Chen, research fellow in the Department of Epidemiology at Harvard T.H. Chan School of Public Health in Boston.
Study results are published in the June issue of the journalSleep.
The study population was recruited from six U.S. communities and comprised 2,230 racially/ethnically diverse men and women who were between the ages of 54 and 93 years. Data gathered by polysomnography, actigraphy and validated questionnaires were obtained between 2010 and 2013.
According to Dr. Chen and her colleagues, this is the first study that has comprehensively evaluated objective measures of sleep apnea, short sleep, and poor sleep, as well as subjective measures of habitual snoring, insomnia, and daytime sleepiness in a multi-ethnic U.S. population that includes Chinese Americans. Results suggest that sleep disturbances may contribute to health disparities among U.S. adults.
"As sleep apnea has been implicated as a risk factor for cardiovascular disease, stroke, diabetes, and mortality, our findings highlight the need to consider undiagnosed sleep apnea in middle-aged and older adults, with potential value in developing strategies to screen and improve recognition in groups such as in Chinese and Hispanic populations," said senior author Dr. Susan Redline, professor of medicine at Harvard Medical School and Division of Sleep Medicine at Brigham and Women's Hospital and Beth Israel Deaconess Medical Center in Boston. The study was supported by grants from the National Institutes of Health (NIH) and an award from the National Center for Advancing Translational Sciences (NCATS).
Read more here

Study: People with autism may be more susceptible to genetic sleep issues

A study indicates that people with autism might be more susceptible to carrying genetic mutations that changes their circadian clock.

People with autism are twice as likely to carry alterations in genes that regulate the circadian clock, or the body’s sleep-wake cycle, as those without the disorder. The findings, published 6 May in Brain and Development, may help to explain why most children with autism have troubled sleep1.
Insufficient sleep is known to exacerbate the core symptoms of autism, such as social deficits and repetitive behaviors. The new findings suggest that the relationship between sleep and autism may have genetic roots.
“Sleep disturbance seems to be a main feature of autism,” says lead researcher Takanori Yamagata, professor of pediatric developmental medicine at Jichi Medical University in Shimotsuke, Japan. “My hypothesis is that some circadian genes may be related to some of the genetics of autism.”
To investigate this potential link, Yamagata and his team sequenced 18 genes known to govern the body’s day-night rhythms in 28 children and adults with autism, half of whom have sleep disorders, as well as 23 controls.
They identified a total of 68 mutations in 15 of these genes. About half of the mutations are ‘silent,’ which means they have no effect on the proteins the genes encode. But the other half are ‘missense’ mutations that disrupt the corresponding protein sequence. Nine of the mutations had never been reported before, Yamagata says.
People in the autism group have about twice as many mutations in circadian genes as do members of the control group, regardless of whether they have a sleep disorder.
Within the autism group, the researchers found seven missense mutations among individuals who have sleep disorders and the same number in those who sleep normally. By contrast, just one person in the control group carries a missense mutation in a circadian rhythm gene.
“We detected many mutations only in patients with autism, but almost nothing in the control group,” Yamagata says. “So I think these genes relate to some pathophysiology of autism.”
The researchers then used three types of computer algorithms to predict the impact of the missense mutations on the gene’s function. They found that 25 of the 33 missense mutations are likely to be benign, but 8 appear to be damaging.
One of the analyses found more damaging mutations in the individuals with autism who have sleep disorders than in those who sleep normally.
But the algorithms did not agree on which mutations are likely to be harmful. “Some of these virtual programs may reflect real damage, but they are not perfect,” Yamagata says.
The researchers are investigating whether these eight mutations in circadian genes interfere with brain development in mice. They’re starting with a mutation in a gene called TIMELESS that they found in a 9-year-old boy with autism who sleeps all day and stays awake all night. The boy’s mother, who also struggles with sleep but does not have autism, has the same mutation.
The results of these mouse studies may help elucidate the genetic relationship between sleep and autism.
“It is not yet clear exactly what the basis of this interaction is,” says Mustafa Sahin, associate professor of neurology at Harvard Medical School, who was not involved in the study. “It will be very interesting to further investigate the effects of these sequence variations.”
Read more here

Sleep and breast cancer diagnosis

Having poor sleep before diagnosis is linked to poorer diagnoses for women with breast cancer.

Breast cancer patients who had poor sleep and frequent snoring before their cancer diagnosis appear to have lower survival rates, a new study finds.
The study, which was not designed to prove cause-and-effect, included more than 18,000 cancer patients whose progress was tracked in the Women's Health Initiative study.
All of the women provided information about a number of aspects of their sleep prior to their cancer diagnosis, including the amount of sleep they got, whether or not they snored, and any history of insomnia.
Researchers led by Amanda Phipps, an assistant professor of epidemiology at the University of Washington in Seattle, found that women who slept 6 hours or less per night and were frequent snorers had more than twice the odds of a poor prognosis compared to women with neither of those factors.
A similar finding was seen for women with lung cancer, although the effect was not as large as was seen in women with breast cancer, the study authors said.
The study was published online in the journal Sleep and was also presented June 10 at the annual meeting of the Associated Professional Sleep Societies in Seattle.
"Our results suggest that sleep duration is important for breast cancer survival, particularly in women who snore," Phipps said in a journal news release.
Two breast cancer experts were cautious in interpreting the study results, however.
"At first glance it seems as though recommending more sleep could be of benefit [to breast cancer patients]," said Dr. Stephanie Bernik, chief of surgical oncology at Lenox Hill Hospital in New York City. "However, one must remember that perhaps the factors that allow women to have more restful sleep -- such as healthier lifestyle or lower amounts of stress -- are the real reasons women who sleep well have better breast cancer outcomes."
Dr. Charles Shapiro co-directs the Dubin Breast Center at the Mount Sinai Hospital, also in New York City. "Sleep patterns often get disrupted, and insomnia is prevalent, in women who are diagnosed and treated for breast cancer and other cancers," he said.
"Precisely why insomnia is prevalent in cancer populations is unknown, but there are many potential causes including depression, anxiety, fatigue and [other issues] such as hot flashes," Shapiro added.
But he agreed with Bernik that "important factors like depression and obesity, known to be associated with increased breast cancer mortality, were not assessed [in the study]," and they could be the link between sleeplessness and breast cancer outcomes.
"Insomnia is a common but under-recognized and undertreated problem among breast cancer survivors," Shapiro said, "but whether it actually causes increased cancer deaths is unknown and we need a lot more information before we make that link."
Read more here
A new drug may be able to preemptively treat migraine headaches before they happen.

Patients may now have a solution to their migraines even before the attack happens, as experts found a new class of drugs shows great potential for migraine management. These medicines are the first of its kind that specifically target prevention of migraine. Research findings show that these drugs can greatly help alleviate the symptoms of the patients.
The drug belongs to a new class called Calcitonin Gene-Related Peptide (CGRP) monoclonal antibodies. CGRP is a neurotransmitter or chemical that transmits signals within the brain and throughout the body. So far, the compounds are exhibiting favorable effects in the management of chronic migraine and frequent but intermittent migraine.
"We've known for a long time that CGRP was involved in the mechanism of migraines, so during migraine attacks you can measure elevation of CGRP in the blood of the person having the migraine," said Dr. Richard Lipton, director of the Montefiore Headache Center at the Albert Einstein College of Medicine in New York. "If you treat it, CGRP blood levels fall."
Various pharmaceutical companies have been testing the effects of substances that target the CGRP; these companies include Amgen, Alder Pharmaceuticals, Teva Pharmaceuticals and Eli Lilly and Company.
Teva conducted its studies and submitted it to the American Headache Society meeting. In the phase IIb trials, where patients with migraine were tested, patients experienced a notable drop in the hours of headache experienced one week after the trial was started. Half of the said patients reported that the frequency of headache was reduced by 50 percent or more.
Lilly also presented how efficient their product is. They conducted their phase II trials by testing their product against a placebo, which were both administered every month. Amgen also presented their phase II data that reveal how their product was able to reduce the days of migraine attacks by 50 percent in half of their study participants in a span of 12 weeks. Alder Pharmaceutical also demonstrated their phase II trial results, but specific details were not presented at the meeting.
"The potential of these new compounds is enormous and gives us real hope that effective specific treatments for migraine may be on the near horizon," said Peter J. Goadsby, MD, PhD, Chief of the UCSF Headache Center and chair of the American Headache Society's annual Scientific Meeting. "The development of CGRP antibodies offers the simple, yet elegant and long awaited option for migraine patients to finally be treated with migraine preventives; it's a truly landmark development."
In America, more than 36 million people have migraine, which is far more than the incidence of patients with diabetes and asthma combines. Chronic migraine, which is characterized by 15 migraine days monthly, is experienced by approximately four million Americans.
Read more here