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                    <pubDate>Wed, 29 Sep 2021 23:00:54 +0200</pubDate>
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                        <title>TikTok &amp; Tics:  Rise in Movement Disorder Documented on Social Media</title>
                        <link>https://www.checkupnewsroom.com/tiktok--tics--rise-in-movement-disorder-documented-on-social-media/</link>
                        <guid>https://www.checkupnewsroom.com/tiktok--tics--rise-in-movement-disorder-documented-on-social-media/</guid><pp:caseid>475180</pp:caseid><description><![CDATA[<p><span><span><span>Physicians are sounding the alarm on yet another health concern that may be exacerbated by the pandemic. Within the past year doctors have noticed a dramatic increase in teens experiencing the sudden onset of tics, or involuntary and uncontrollable sounds and movement.</span></span></span></p><p><span><span><span>This current tic phenomenon is primarily impacting teen girls, many of whom have no previous history of tics. That&rsquo;s not typical for most tic disorders, such as Tourette syndrome. Tourette&rsquo;s is a neurological movement disorder that is more common among boys and typically starts between ages 5 and 7 years.</span></span></span></p><p><span><span><span><a href="https://cookchildrens.org/doctors/team/zelime-elibol">Zelime Elibol, M.D.</a>, a pediatric neurologist with a special interest in cognitive and neurobehavioral disorders and director of Cook Children&rsquo;s Tourette Syndrome Clinic, says the majority of tics observed in this current surge are called functional tics. Functional neurologic symptoms are not associated with any known neurologic cause. There is no structural damage to the brain or a lesion causing them, like in the case of a stroke or multiple sclerosis. Something is wrong, but it&rsquo;s difficult to identify a physical cause, and it&rsquo;s not likely to respond to typical medical treatments for tics.</span></span></span></p><p><span><span><span>An <a href="https://adc.bmj.com/content/106/5/420"><span>article</span></a> published in the British journal &ldquo;<a href="https://adc.bmj.com/content/106/5/417">Archives of Disease in Childhood</a>&rdquo; in March, shed light on the issue. It detailed both an increase in tic symptoms during the pandemic among adolescents already diagnosed with tic disorders, as well as a sharp rise in the sudden and new onset of tic-like attacks among teenage girls. Pandemic stress and social media may be to blame, according to the article&rsquo;s authors.</span></span></span></p><p><span><span><span>The piece highlights a recurring factor at play with this new set of functional tic disorders&mdash;the viral TikTok trend of showing one&rsquo;s tic<img alt="" src="https://content.presspage.com/uploads/1065/1920_tiktok-5064078-1920.jpg?x=1632429284603" style="float:right; height:333px; margin:5px; width:500px" /> attacks. Views of #tourettes videos doubled between January and February 2021, and some teen girls report an increased consumption of these videos prior to onset of symptoms. Some also said they post videos of their own tic attacks and gain a level of support and attention from them, according to the article.</span></span></span></p><p><span><span><span>We sat down with Dr. Elibol to learn more about functional tic disorders and what parents and caregivers need to know about the recent rise in cases.</span></span></span></p><p><span><span><span><strong>How common are tics in general?</strong></span></span></span></p><p><span><span><span>About 25% of children will develop tics during early childhood, known as developmental tic disorders. The most common are called transient tics. They get them for a period of time, but they&rsquo;re gone within a year. A much smaller percentage, about 1%, go on to have what we call chronic tics that last more than a year, often many years. Aside from developmental tic disorders, there are medical and metabolic disorders that cause tics. There are also medications that may cause tics as a side effect.</span></span></span></p><p><span><span><span><strong>What are you seeing in your own practice right now related to functional tics?</strong></span></span></span></p><p><span><span><span>We see functional neurologic disorder symptoms at times, meaning we see neurologic symptoms that contradict known patterns of disease and are often thought to have a psychological underpinning. They&rsquo;ve always been around, but there is a notable increase right now. Specifically, what I&rsquo;m seeing in my practice is a significant increase in explosive tics in otherwise healthy adolescents with a normal neurologic exam. So far, all of my functional tic patients are adolescent girls with symptom onset well after 11 years old and, by this age, 95% of Tourette patients will have already developed tics.</span></span></span></p><p><span><span><span>This is outside of the norm for typical tic disorders, like Tourette syndrome, which more often occur in boys between ages 5 and 7, and wax and wane over time. Some of the children I see with Tourette&rsquo;s do have severe tics, but that&rsquo;s a little less common. The tics in the girls I&rsquo;m seeing right now are all very severe. I would describe them as tic attacks, where they have these sudden attacks of various and complicated vocalizations, curse words, body movements, sometimes hitting themselves and hitting others. They often are not waxing and waning, but sustained and so severe that they can&rsquo;t go to school. There is a typical course, evolution and appearance for most developmental tic disorders. This current wave of functional tics I&rsquo;m seeing does not follow that typical course and does not improve with tic medication.</span></span></span></p><p><span><span><span><strong>What do you think has caused this increase in tic attacks?</strong></span></span></span></p><p><span><span><span>Kids with functional neurologic disorders will sometimes deny that they are experiencing any type of psychological stress, but over time, they often recognize that something was, in fact, going on. They&rsquo;ll return and say they were actually super anxious or even suicidal, and it started coming out in this physical way. There is an evolving theory behind functional neurologic disorders that a predisposing factor is an impairment in emotional processing and difficulty identifying one&rsquo;s own internal emotional states.</span></span></span></p><p><span><span><span>I think the pandemic is playing a significant role in the increase. I&rsquo;ve never seen it to this degree or had this many functional patients present to my clinic. We&rsquo;ve seen an increase in mental health struggles like anxiety and depression, and I think it&rsquo;s triggered an increase in functional neurologic disorders.</span></span></span></p><p><span><span><span><strong>Have your patients referenced pandemic stress and restrictions as a trigger for their tics?</strong></span></span></span></p><p><span><span><span>My patients don&rsquo;t necessarily say that they&rsquo;re stressed because of the pandemic, but when I ask them when things got worse, almost all of them say it&rsquo;s all been within the past year. Most of them look back and give a history of some anxiety or depression in the past with significant worsening within the last year, including the onset of tic attacks. A lot of them will say they don&rsquo;t want to go to school for whatever reason or that school is stressful for them and, when they go back to school, they&rsquo;ll have tic attacks and end up back at home.</span></span></span></p><p><span><span><span><strong>Do the patients you see for tic attacks report watching more TikTok videos of someone with tics prior to the onset of their symptoms?</strong></span></span></span></p><p><span><span><span>The TikTok factor is new to me. More recently, I&rsquo;ve been asking my patients if they&rsquo;ve seen it and they say yes. They&rsquo;ll also show me videos they&rsquo;ve recorded of themselves having tic attacks. They&rsquo;re not necessarily posting their attack on TikTok, but a number of them do say they have seen the videos.</span></span></span></p><p><span><span><span><strong>How do you counsel these patients and their parents? What course of treatment do you advise?</strong></span></span></span></p><p><span><span><span>The most important thing I tell parents is that I don&rsquo;t think their child is faking it or that they are crazy. There is something going on, we just have to get to the bottom of it. I have a very long discussion with them about functional neurologic disorders&mdash;how the brain is not functioning correctly but there is nothing structurally wrong with it, like a lesion. We talk about why I have diagnosed their child with functional tics versus another developmental tic disorder, like Tourette Syndrome, based on their medical history and the evolution of their symptoms. It&rsquo;s worth noting that you can have both Tourette&rsquo;s and functional tics, so that can be difficult to tease apart, but the majority of the increase I&rsquo;m seeing right now are kids that have no past history of tics.</span></span></span></p><p><span><span><span>Then, we talk about what we can do to help their child. Tic medications do not help children with functional tics. We need to address their child&rsquo;s anxiety and underlying mental health issues, whether it&rsquo;s with depression and anxiety medication, or therapy, or a combination of both. I will refer them to a psychiatrist or counselor, if they don&rsquo;t already have one. I have also recommended a type of cognitive behavioral therapy for tics, called CBIT (Cognitive Behavioral Intervention for Tics), where they learn how to identify the things that trigger their tics and coping strategies such as relaxation and breathing techniques to help lessen their severity or stop them all together.</span></span></span></p><p><span><span><span>We&rsquo;ll often work with schools to put a plan in place where the student can take a break or go to another room if they need to. But, we emphasize with the patient that this is not going to allow them to get out of their school work. They can take a break, but they need to return to class and complete their work. This is not a reason to go home for the day. It&rsquo;s important that we have empathy and understanding for these patients and help them work their way through it, but also not allow the tics to keep them out of school.</span></span></span></p><p><span><span><span>I would also recommend to children and families to stop watching tic videos on social media. I don&rsquo;t have a study where I can prove that watching these videos incites tics in others, but if you&rsquo;re anxious and depressed and not processing your emotions, it&rsquo;s going to come out in some way. If you are watching a lot of other teens showing their tics on social media and talking about their tic attacks, it makes sense that you might be influenced to release your stress in that way, too. Step away from social media for a while and focus on developing coping strategies for your stress and for managing your tics.</span></span></span></p>]]></description><category><![CDATA[News,tic,TikTok,social,media,disorder,Trending]]></category>
            <pubDate>Thu, 23 Sep 2021 15:40:26 -0500</pubDate>
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                        <title>Texas Adds New Screening Requirement For Newborns</title>
                        <link>https://www.checkupnewsroom.com/texas-adds-new-screening-requirement-for-newborns/</link>
                        <guid>https://www.checkupnewsroom.com/texas-adds-new-screening-requirement-for-newborns/</guid><pp:caseid>460394</pp:caseid><description><![CDATA[<p><span><span><span>When it comes to treating spinal muscular atrophy (SMA), time is of the essence. Every day that passes without treatment can lead to a lesser quality of life and, tragically, even death. But a new and simple screening for newborns has the potential to change that.</span></span></span></p><p><span><span><span>This week, SMA was added to the list of required medical screenings every baby in Texas receives at birth. Without newborn screening, many children escape the diagnosis until after permanent neuromuscular damage has occurred. Early recognition and treatment can mean the difference between a near normal life or suffering many skeletal deformities and being unable to breathe without a ventilator.<img alt="" src="https://content.presspage.com/uploads/1065/1920_newborn.jpeg?x=1622735659178" style="margin: 5px; float: right; width: 500px; height: 301px;" /></span></span></span></p><p><span><span><span>&ldquo;The hope and thought is that it&rsquo;s going to change the lives of patients and their families,&rdquo; said <a href="https://cookchildrens.org/doctors/team/Stephanie-Acord?utm_source=bing&utm_medium=yext&utm_campaign=yext">Stephanie Acord, M.D</a>., a pediatric neurologist at <a href="https://cookchildrens.org/neurology/Pages/default.aspx">Cook Children&rsquo;s Jane and John Justin Neurosciences Center</a>. &ldquo;Without treatment, these kids and those who care for them are significantly affected. The earlier you treat SMA, the better.&rdquo;</span></span></span></p><p><span><span><span>Dr. Acord directs the multi-disciplinary <a href="https://cookchildrens.org/neurology/clinics/Pages/Muscular-Dystrophy-Association-Clinic.aspx">Muscular Dystrophy Association (MDA) Clinic</a> at Cook Children&rsquo;s Jane and John Justin Neurosciences Center where she and <a href="https://cookchildrens.org/doctors/team/warren-marks">Warren Marks, M.D.</a>, medical director of movement disorders at the center, specialize in the treatment of SMA. Dr. Acord shared with us what every expectant parent needs to know about the disorder and the new screening.</span></span></span></p><p><span><span><span><b>What is SMA?</b></span></span></span></p><p><span><span><span>Spinal muscular atrophy is a genetic disorder in which the nerves within the brainstem and spinal cord, called alpha motor neurons, break down and lose the ability to send signals from the brain to the muscles. Without those signals, the muscles grow weak from lack of use and affect a baby&rsquo;s ability to hold up and control their head, sit up, crawl, walk, swallow, speak and breathe. If left untreated, a child will eventually require a feeding tube and respiratory support, such as a ventilator. Untreated SMA is among the leading genetic causes of death of infants and children.</span></span></span></p><p><span><span><span>Spinal muscular atrophy can be passed to a child if both parents have a defective survival motor neuron (SMN1) gene. Parents do not have the disease or signs of the disease and do not usually know they carry an abnormal gene. The faulty gene inhibits the production of the protein that fuels these motor neurons and, without it, the nerves die. There is a back-up copy, the SMN2 gene, but it doesn&rsquo;t work as well as the SMN1 gene.</span></span></span></p><p><span><span><span>It is estimated that about 100 children born in Texas each year have the disorder. Many newborns will not show signs of SMA for months. By that point, you&rsquo;ve lost valuable treatment time and the ability to give a child with SMA a better life. This is why newborn screening is so important.</span></span></span></p><p><span><span><span><b>What are the signs and symptoms of SMA?</b></span></span></span></p><p><span><span><span>There are several types of SMA. Symptoms vary depending on the type, but muscle weakness and loss of muscle control that worsens over time are general indicators. It is important to note that SMA is not a cognitive disorder, but a muscular one.</span></span></span></p><p><span><span><span><b><u>Type 0</u></b> is the rarest and most severe form of the disorder. Babies born with Type 0 SMA have breathing problems very early on and typically do not survive.</span></span></span></p><p><span><span><span><b><u>Type 1</u></b> is the most common form of SMA and also considered severe. Infants will begin showing signs within six months of life. They have poor head control, do not sit independently and have difficulty sucking and swallowing. Even though cognitively they are normal, they are unable to speak due to weakness. Without treatment they will need assistance with breathing, feeding, communicating, sitting and walking.</span></span></span></p><p><span><span><span><b><u>Type 2</u></b> is a more moderate form of the disorder. Symptoms will become evident between six months to 18 months of life. Infants with Type 2 will have difficulty controlling their lower limbs. They may be able to sit independently and crawl but struggle with walking.</span></span></span></p><p><span><span><span><b><u>Type 3</u></b> is a milder form of SMA. Symptoms such as mild muscle weakness, difficulty walking or frequent respiratory illness do not appear until after 18 months of life. Some people may not experience symptoms until early adulthood.</span></span></span></p><p><span><span><span><b><u>Type 4</u></b> is adult onset SMA. It is rare, progresses slowly and typically doesn&rsquo;t appear until the early 30s. Most people maintain mobility and are able to manage their symptoms without much interruption to their lives.</span></span></span></p><p><span><span><span><b>What treatment is available for SMA?</b></span></span></span></p><p><span><span><span>The Federal Drug Administration (FDA) approved the first treatment for SMA in December 2016.</span></span></span></p><p><span><span><span>&ldquo;It used to be a diagnosis in which there was very little treatment and little hope,&rdquo; Dr. Acord said. &ldquo;But the treatment now available for these patients is completely different than it was just five years ago.&rdquo;</span></span></span></p><p><span><span><span>Today, there are three FDA-approved treatments. Two&mdash;Spinraza&reg; and Evrysdi&reg;&mdash;are drug therapies that help stimulate the production of a more functional SMN2 protein. These two treatments require ongoing administration of medication at various time intervals. The other&mdash;Zolgensma&reg;&mdash;is a gene-replacement therapy administered once through an IV that delivers a normal functioning copy of the SMN1 gene.</span></span></span></p><p><span><span><span>The treatments have varying degrees of success, but all work to improve the strength and function of muscles through healthier neurons. They help to prolong the amount of time a child can live without additional support such as equipment to help them breathe more comfortably, as well as increase their ability to speak with their voice and to eat to some extent by mouth. The most critical part of any of the treatments is to start as soon as possible following diagnosis.</span></span></span></p><p><span><span><span><b>How will my newborn be screened for SMA?</b></span></span></span></p><p><span><span><span>As of June 1, 2021, SMA is one of 55 disorders on Texas&rsquo; list of required newborn screenings. It does not require an additional test. It&rsquo;s simply bundled into the routine screenings already performed on newborns via blood test.</span></span></span></p><p><span><span><span><b>What happens if my newborn is positive for SMA?</b></span></span></span></p><p><span><span><span>If your newborn&rsquo;s screening is positive for SMA, it is recommended that they be referred to a specialist, either a pediatric neurologist or a pediatric neurogeneticist, within 24 hours. A specialist will most likely conduct additional testing to confirm the diagnosis and develop a treatment plan.</span></span></span></p><p><span><span><span>&ldquo;Parents need to advocate getting their child to a specialist as quickly as possible,&rdquo; Dr. Acord said about receiving a positive SMA screen.</span></span></span></p><p><span><span><span>Pediatric neurologists at Cook Children&rsquo;s Medical Center are able to conduct many SMA assessments virtually via telemedicine, which is helping parents and children in parts of the state without specialists get access to care from the comfort of their home.</span></span></span></p><p><span><span><span>Click <a href="https://cookchildrens.org/neurology/clinics/Pages/Muscular-Dystrophy-Association-Clinic.aspx"><span>here</span></a> to learn more about the Muscular Dystrophy Association Clinic at Cook Children&rsquo;s and for contact information for clinic staff.</span></span></span></p>]]></description><category><![CDATA[News,SMA,Spinal,Muscular,Atrophy,Gene,disorder,rare,Texas,newborn,screening,neurology,neuroscence,Trending]]></category>
            <pubDate>Thu, 03 Jun 2021 10:55:02 -0500</pubDate>
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                        <title>Help and Hope for Hyperinsulinism</title>
                        <link>https://www.checkupnewsroom.com/help-and-hope-for-hyperinsulinism/</link>
                        <guid>https://www.checkupnewsroom.com/help-and-hope-for-hyperinsulinism/</guid><pp:caseid>444258</pp:caseid><pp:subtitle>A tale of two families and how they tackle the same rare disorder</pp:subtitle><description><![CDATA[<p><span><span><span>It&rsquo;s one thing to have had a baby in the unprecedented times that defined 2020. It&rsquo;s another thing altogether to deliver a baby with a serious medical condition in a year already filled with so much uncertainty and hardship, but that was the scary reality for Michael and Laurie Perkins, of Houma, Louisiana, and their newborn son, Charlee.</span></span></span></p><p><span><span><span>Charlee was diagnosed in utero with congenital hyperinsulinism (CHI)&mdash;a rare genetic disease of the pancreas. Although there are several forms of the disorder, hyperinsulinism is a condition in which the pancreas produces too much insulin, driving blood sugar levels dangerously low and depriving the brain of important fuels it needs to function.</span></span></span></p><p><span><span><span>"Hyperinsulinism is a rare condition affecting about 1 in 20,000 to 30,000 newborn babies each year," said <a href="https://cookchildrens.org/doctors/team/paul-thornton">Paul Thornton, M.D.</a>, medical director of the <a href="https://cookchildrens.org/endocrinology/specialty-programs/Pages/hyperinsulinism-center.aspx">Cook Children's Hyperinsulinism Center</a>. "However, it is the most common cause of severe hypoglycemia in the newborn. Despite this, unfortunately today, there are still patients who have delays in diagnosis. This can be very damaging as this form of hypoglycemia puts babies at a high risk of brain damage."</span></span></span></p><p><span><span><span>The Perkins are no strangers to the disorder as their 11-year-old daughter, Ava, was also born with CHI. Even so, the pandemic made the somewhat familiar situation much more challenging.<img alt="" src="https://content.presspage.com/uploads/1065/1920_perkins5.jpg?x=1616427921563" style="margin: 5px; float: left; width: 500px; height: 349px;" /></span></span></span></p><p><span><span><span>Babies born with CHI need a quick and correct diagnosis and immediate intervention with medication to increase blood sugar levels. Without these measures, they can suffer seizures, brain damage or even death for a disease that can be managed with various therapies and, in some cases, even cured with surgery. An amniocentesis revealed Charlee&rsquo;s CHI prior to his birth, giving the family important information they needed to prepare for his arrival.</span></span></span></p><p><span><span><span>The first major hurdle was to determine where to deliver Charlee. He would need care at a medical facility with a center specializing in CHI. Only two of those exist in the U.S.&mdash;one at the Children&rsquo;s Hospital of Philadelphia (CHOP) and the other at <a href="https://cookchildrens.org/Pages/default.aspx">Cook Children&rsquo;s Medical Center</a> in Fort Worth. The Perkins were familiar with the center in Philadelphia as that is where Ava received treatment shortly after her birth, but the pandemic made traveling that far from home complicated. They needed something closer, preferably a facility a reasonable car ride away.</span></span></span></p><p><span><span><span>An internet search led the Perkins to Cook Children&rsquo;s where they were put in touch with Dr. Thornton who trained at CHOP and is considered a world-renowned expert on the disorder.</span></span></span></p><p><span><span><span>&ldquo;I was impressed whenever Dr. Thornton called me and talked on the phone with me for close to an hour,&rdquo; Perkins said. &ldquo;I know he's a very busy man. So, we decided to go ahead and cancel our plan to go to Philadelphia.&rdquo;</span></span></span></p><p><span><span><span>The Perkins worked together with a multidisciplinary team of obstetricians from Texas Health Harris Methodist Hospital and CHI experts from Cook Children&rsquo;s to develop a game plan for Charlee&rsquo;s birth.</span></span></span></p><p><span><span><span>"From the first moment I met with Mrs. Perkins and we talked about how we could help her prepare for the birth of her child with a rare disorder, I was impressed with her determination to ensure the best possible care for her baby from the moment of his birth," Dr. Thornton said. "Her sacrifice to leave her family and travel to Cook Children's so that she would be able to deliver her baby where our team was ready to treat him from birth was the best choice she could make."</span></span></span></p><p><span><span><span>But in the months that followed things went awry for Laurie. Preeclampsia and placenta abruption made for an early and dramatic delivery, throwing Charlee&rsquo;s care team into action much sooner than originally anticipated. Charlee was born at 32 weeks gestation on July 7. As expected, his blood sugar was dangerously low. He was immediately transferred to Cook Children's and given medication to increase his blood sugar levels.</span></span></span></p><p><span><span><span>"By being prepared for a baby with severe hyperinsulinism we were able to have him stabilized within 30 minutes after birth," Dr. Thronton said. "This gave us the best possible ability to get a good long-term outcome for Charlee."</span></span></span></p><p><span><span><span><b>A Chance for Charlee</b></span></span></span></p><p><span><span><span>The Perkins had two treatment choices for Charlee. Either subject him to a lifetime of feeding tubes and continuous feeds to keep his<img alt="" src="https://content.presspage.com/uploads/1065/800_perkins3.jpg?x=1616429214917" style="margin: 5px; float: right; width: 300px; height: 400px;" /> blood sugar from dropping too low or have surgery to remove most of his pancreas. The latter would mean Charlee, like his big sister, would be a diabetic and dependent on insulin injections to regulate his blood sugar.</span></span></span></p><p><span><span><span>This time, the familiar made choosing the surgical option for their baby much easier. Charlee and big sister Ava have the exact same form of CHI. Ava&rsquo;s pancreas was removed as an infant and, with the help of her family, she has been able to successfully manage the resulting diabetes. Even as an 11-year-old, she knows how to check her blood sugar, can read her glucose monitor and can change her cordless insulin pump. Nothing stops her from enjoying all of the activities in which kids her age take part. The Perkins knew they could instill the same knowledge, independence and confidence in Charlee as they have Ava.</span></span></span></p><p><span><span><span>Before they could do surgery, Charlee had to overcome the challenges of prematurity while in the NICU.</span></span></span></p><p><span><span><span>&ldquo;Not only did he have CHI, but he had to beat all of the early preemie baby stuff to even be able to sustain surgery,&rdquo; Perkins said. &ldquo;He was born on July 7th at 32 weeks and was ready to rock and roll for major surgery on July 31.&rdquo;</span></span></span></p><p><span><span><span><b>Meeting A Milestone</b></span></span></span></p><p><span><span><span>The Perkins family found Cook Children&rsquo;s Hyperinsulinism Center in a milestone year, as 2020 marked the center&rsquo;s 10th anniversary of serving children who come from all over the country to receive the very specialized care the center offers.</span></span></span></p><p><span><span><span>"The treatment of congenital hyperinsulinism is very complex," Dr. Thornton said. "It's really important that patients with rare diseases have access to multidisciplinary teams such as are at Cook Children's Hyperinsulinism Center where the approach and the experience of the team members caring for these patients results in better outcomes with shorter lengths of stay, getting the patient's home to their families as fast as possible."</span></span></span></p><p><span><span><span>Hayden Hood has been a Cook Children&rsquo;s Hyperinsulinism Center patient since its inception. Doctors discovered Hood&rsquo;s hyperinsulinism just weeks after his birth in 2000.</span></span></span></p><p><span><span><span>&ldquo;Hayden was so sick when he was born that it took them a matter of days to figure out the problem,&rdquo; said Davelyn Hood, M.D., Hayden&rsquo;s mother and a family practice physician in San Antonio, Texas. &ldquo;You hate to say that you&rsquo;re grateful that your child is sick but, because he was so sick, they were able to diagnose him early. That&rsquo;s why he&rsquo;s had better outcomes than could have been.&rdquo;</span></span></span></p><p><span><span><span>Most of Hayden&rsquo;s pancreas was removed when he was two weeks old but the problem persisted. After struggling to manage his disease for the first 19 months of his life, the Hoods decided to travel from their home in South Texas to CHOP as it was the only HI center in the U.S. at that time. That&rsquo;s where they met Dr.Thornton.</span></span></span></p><p><span><span><span><img alt="" src="https://content.presspage.com/uploads/1065/1920_2f7a0070.jpg?x=1616427235982" style="margin: 5px; float: left; width: 500px; height: 333px;" />&ldquo;Dr. Thornton helped us come up with a new treatment plan for Hayden, something that we could do to help stabilize his hyperinsulinism condition,&rdquo; Dr. Hood said. &ldquo;It was a real roller coaster in those days, and Dr. Thornton was a big part of helping get things on a more stable track for us.&rdquo;</span></span></span></p><p><span><span><span>In what Hayden&rsquo;s mom describes as a divine turn of events for their family, Dr. Thornton was recruited by Cook Children&rsquo;s Medical Center in 2002 to join the medical staff as the medical director of endocrinology. The move meant the Hoods would no longer have to travel out-of-state for Hayden&rsquo;s care.</span></span></span></p><p><span><span><span>Dr. Thornton spent eight years growing the Cook Children&rsquo;s endocrinology program and, in 2010 set his sights on launching the nation&rsquo;s second HI clinic at the medical center.</span></span></span></p><p><span><span><span>&ldquo;Every child&rsquo;s HI management is different. It&rsquo;s a very personalized experience,&rdquo; Hayden&rsquo;s mom said. &ldquo;I think that&rsquo;s an important distinction. They don&rsquo;t just have a one-size fits all treatment. At Cook Children&rsquo;s they&rsquo;re really able to tailor their care, and I think that&rsquo;s why families feel heard and like they are getting care that works for them. That&rsquo;s something extra special about the Cook Children&rsquo;s center.&rdquo;</span></span></span></p><p><span><span><span><b>Breaking Barriers</b></span></span></span></p><p><span><span><span>Like most rare disorders, there are few resources for information and support for families with HI, so the Perkins and Hoods led the way in building a few.</span></span></span></p><p><span><span><span>Laurie Perkins organized a support group in their parish called Sweet Heroes for children with diabetes so that Charlee and Ava can spend time with other kids who face a similar fate.</span></span></span></p><p><span><span><span><img alt="" src="https://content.presspage.com/uploads/1065/800_haydenhood.jpg?x=1616426874743" style="margin: 5px; float: right; width: 300px; height: 451px;" />Dr. Hood parlayed her medical knowledge into an advocacy role as the president of the board for Congenital HI International, a nonprofit dedicated to improving the lives of those with HI. She is also a principal investigator for the HI global registry which collects data and feedback from HI patients across the globe in order to learn more about the HI experience. Dr. Thornton is active with this organization and endeavor as well.</span></span></span></p><p><span><span><span>Living with a rare disorder hasn&rsquo;t stopped Hayden from pursuing his dreams. And, if his big sister is any indication, it won&rsquo;t stop Charlee Perkins either.</span></span></span></p><p><span><span><span>&ldquo;I always felt like a normal kid,&rdquo; Hayden said. &ldquo;I did every normal thing a kid can do and didn&rsquo;t feel held back at all. I know I am one of the lucky ones with this disease. So I really do try to take everything as a blessing.&rdquo;</span></span></span></p><p><span><span><span>Hayden went on to become a long snapper for the Texas Tech Red Raiders during his first year of college. Today, he has his sights set on creating a career path that allows him to nurture his love for hunting and ranching. He even started a small hunting guide business with a friend. Now a young adult, Hayden is able to manage his HI with diet, exercise and paying close attention to how his body feels.</span></span></span></p><p><span><span><span>"One of the best parts of being an endocrinologist and working in a single institution for a long time is getting to guide our patients from diagnosis all the way up to adulthood and seeing them become successful adults," Dr. Thornton said. "It's even more fun when the families follow you from one institution to another. The big advantage of seeing a child from diagnosis to adulthood is that you come to understand the lifelong impacts of a disease on a child and their family and this makes you a better doctor at the end of the day."</span></span></span></p><p><span><span><span>As for little Charlee, his days are full of kisses and cuddles from mom, dad and sister. He is meeting all of his milestones, loves to smile, is sitting up and will be crawling in no time.</span></span></span></p><div class="text_companyprofile" style="padding: 8px; margin-bottom: 30px; background-color: rgb(226, 243, 247);"><p><strong><span>About&nbsp;<span><span>Cook Children&rsquo;s Hyperinsulinism Center</span></span></span></strong></p><p><span><span><span><span><span>Learning that one of the world's most respected congenital hyperinsulinism centers is right here at Cook Children's can be a life-saving moment. Congenital hyperinsulinism is the most common cause of hypoglycemia (low blood sugar) in infants more than 3 days old, as well as children. If this rare, and often severe, genetic disorder is not treated, these children are at risk for</span></span></span>&nbsp;<a href="https://cookchildrens.org/neurology/conditions/Pages/Seizures.aspx"><span><span><span>seizures</span></span></span></a>&nbsp;<span><span><span><span><span><span><span><span>or even permanent brain damage. Finding the right care is very important in preventing irreversible damage and improving quality of life.</span></span></span></span></span></span></span></span></span></span></p><p><span><span><span><span><span>One of the first programs in the nation, Cook Children's Hyperinsulinism Center uses a specialized team approach to treat hyperinsulinism (HI). Hyperinsulinism affects many areas of the body, so to truly treat every aspect of HI each child is seen by top physicians, nurses, researchers and specialists in the field. These medical professionals have spent additional years of intense study and have dedicated their practice to focusing on HI. That means your child has access to the best care available. It is this level of treatment that has helped earn our program a distinguished international reputation for extraordinary care and achieving positive results.</span></span></span></span></span></p><p><span><span><span><span><span><a href="https://cookchildrens.org/endocrinology/specialty-programs/Pages/hyperinsulinism-center.aspx">Learn more about Cook Children&rsquo;s <span>Hyperinsulinism Center here.</span></a></span></span></span></span></span>&nbsp;&nbsp;</p></div>]]></description><category><![CDATA[Main,News,rare,disorder,Hyperinsulinism,disease,Blood,sugar,HI,CHI,Congenital,Hypoglycemia,infant,newborn,Featured]]></category>
            <pubDate>Mon, 22 Mar 2021 10:46:10 -0500</pubDate>
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                        <title>Bellanne Butterfly Blessings Honors Former Patient&#039;s Legacy of Kindness</title>
                        <link>https://www.checkupnewsroom.com/bellanne-butterfly-blessings-honors-former-patients-legacy-of-kindness/</link>
                        <guid>https://www.checkupnewsroom.com/bellanne-butterfly-blessings-honors-former-patients-legacy-of-kindness/</guid><pp:caseid>359691</pp:caseid><description><![CDATA[<p>Bellanne (Bel) Coonrod never met a stranger. To Bel, everyone could use a little extra love, especially on the Hematology and Oncology floor of Cook Children&rsquo;s.</p>

<p>Bel knew the hallways of Cook Children&rsquo;s well. Born with a medley of complex medical diagnoses, she spent much of her life in and out of the hospital for ailments, procedures and tests.</p>

<p><img alt="" src="//content.presspage.com/uploads/1065/500_belanddog-442339.jpeg?x=1569598249349" style="border-width: 3px; border-style: solid; margin: 5px; width: 300px; height: 400px; float: left;" />In May 2016 after months of stridor (a wheezing sound caused by disrupted airflow), croup and pneumonia, Bel&rsquo;s mother Vicki and father Jess Coonrod discovered a mass in Bel&rsquo;s nostril. A biopsy confirmed a diagnosis of non-Hodgkin&rsquo;s Lymphoma Diffused Large B-cell.</p>

<p>&ldquo;When she was diagnosed with cancer it was heartbreaking,&rdquo; Vicki said. &ldquo;She asked us if she was going to die. So we had a long talk. After that conversation she said, &lsquo;I&rsquo;ve beat other stuff, I&rsquo;ll beat cancer too.&rsquo;&rdquo;</p>

<p>As hard as she fought, Bel lost her battle with cancer at 6 years old. She died unexpectedly from pulmonary hemorrhaging on Feb. 17, 2018.</p>

<p>Throughout her young life, Bel seemed on the verge of victory against her disease. After learning of her diagnosis, she immediately began treatment. However, the cancer began to manifest itself in Bel&rsquo;s mouth and lymph nodes, which left her with a whisper. Bel continued to fight alongside her family and friends at the medical center, and was deemed cancer-free in August 2016.</p>

<p>No sooner did Bel beat cancer, was she diagnosed with a common variable immune deficiency called B-cell Blood Disorder less than a year later in June 2017. It was another diagnosis that caused her cells to mutate and crowd together under her skin and on her organs. She began a clinical trial and was able to receive one of three scheduled doses. Her parents learned after her death that the trial was successful, and Bel was free of the disorder.</p>

<p>Bel&rsquo;s life was full of obstacles, but she didn&rsquo;t let any of this phase her. She was known as the &ldquo;itty bitty girl with a great big spirit&rdquo;, and had an even bigger will to give back to others.</p>

<p>Bel was born with club feet, bilateral radial dysplasia (shortening and directional deviation of the arms) and missing thumbs. She contracted bacterial meningitis as a 1 year old, which led to the diagnosis of pituitary dwarfism. Her little sister, Clar, was born shortly after and both were diagnosed with Ruthmond Thompson Syndrome, causing a compromised immune system that puts them at a higher risk for cancer.</p>

<p>&ldquo;Bel was a medical child her whole life, which meant she was in and out of the hospital her whole life,&rdquo; Vicki said. &ldquo;We&rsquo;ve faced lots of battles with her. She had been so sick leading up to the diagnosis, so it was just going into the mode of &lsquo;do what we have to do to overcome this.&rsquo;&rdquo;</p>

<p>Despite the diagnosis, Bel held onto her contagious smile and her love for others. She could always be found welcoming new patients into the playrooms of the medical center. She continued to donate her birthday gifts to other patients, and held drives of her own to bring in donations for the oncology floor.</p>

<p><img alt="" src="//content.presspage.com/uploads/1065/500_belfamily2-283326.jpeg?x=1569598274774" style="border-width: 3px; border-style: solid; margin: 5px; width: 500px; height: 333px; float: right;" />In May 2018, Bel&rsquo;s parents and her younger sister founded Bellanne Butterfly Blessings as her legacy, which carries on her wish to &ldquo;spread kindness by blessing others. Her memory is ingrained by her family&rsquo;s will to continue to serve the community and the patients at Cook Children&rsquo;s.</p>

<p>Their organization collects donations for specialty care packages for patients and families on the oncology floor. The Coonrod family&rsquo;s own experiences and memories of the unit sparked inspiration for care package needs that patient families typically go without.</p>

<p>&ldquo;It started out as our way of healing. As we&rsquo;ve seen it develop, it&rsquo;s become our way of serving,&rdquo; Vicki said. &ldquo;There were so many times when we were blessed by others on the oncology floor.&rdquo;</p>

<p>Although they aren&rsquo;t in the medical center as much as they were when Bel was here, Vicki, Clar and Jess continue to make their rounds, giving comfort items to patients and families along the way.</p>

<p>&ldquo;To know that we are helping other people just like Bel did is a gift,&rdquo; Vicki said. &ldquo;It&rsquo;s been a lot of work but it&rsquo;s been so healing.The 24/7 fever, appointments and everything else at the medical center; we still have a purpose.&rdquo;</p>]]></description><category><![CDATA[Main,cancer,Bellanne,Hematology,Oncology,Non-hodgkins Lymphoma,non,hodgkins,lymphoma,B-Cell Blood disorder,Blood,disorder,Legacy,Bellanne Butterfly Blessings,Featured]]></category>
            <pubDate>Fri, 27 Sep 2019 10:37:33 -0500</pubDate>
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                        <title>What can Ronda Rousey teach us about speech therapy?</title>
                        <link>https://www.checkupnewsroom.com/what-can-ronda-rousey-teach-us-about-speech-therapy/</link>
                        <guid>https://www.checkupnewsroom.com/what-can-ronda-rousey-teach-us-about-speech-therapy/</guid><pp:caseid>84916</pp:caseid><pp:subtitle>Our speech pathologist talks Ronda Rousey and Childhood Apraxia of Speech (CAS)</pp:subtitle><description><![CDATA[<p>Who doesn&rsquo;t love a shoutout from Ronda Rousey? Speech language pathologists sure do, especially when we hear Ronda say this: &ldquo;Shoutout to all speech therapists. You&rsquo;re all awesome. And the best thing about my recovery was that I was never allowed to feel inferior.&rdquo; It&rsquo;s hard to imagine Rousey, UFC bantamweight champion, feeling like she was anywhere but on top of the world. But that wasn&rsquo;t always the case.</p>

<p><img alt="" src="http://content.presspage.com/uploads/1065/500_rondarousey.jpg" style="width: 500px; height: 333px; border-width: 2px; border-style: solid; float: right; margin: 5px;" />As a child, Rousey was diagnosed with Childhood Apraxia of Speech (CAS), a motor speech disorder. In recent interviews&nbsp;Rousey reports struggling with feeling of insecurity and inferiority following her diagnosis of CAS. During Rousey&rsquo;s early years, there was question as to whether she would ever be able to use conversational speech. But with perseverance, intervention, and encouragement from her speech therapist and family, Rousey is now a well-spoken adult with a message to children with CAS: anything can be overcome with hard work no matter how insurmountable the odds seem.</p>

<p>Children with CAS have problems saying sounds, syllables and words in the absence of muscle weakness or paralysis. Basically, the brain has trouble telling the body parts necessary for speech how to move in order to form speech. Children diagnosed with CAS don&rsquo;t follow normal speech sound development and won&rsquo;t &ldquo;catch up&rdquo; to their peers without intervention.</p>

<p>So what causes CAS? Unfortunately, in most cases we don&rsquo;t know. CAS is a motor speech disorder, meaning something is interfering with the brain&rsquo;s ability to tell the mouth muscles how to make the right sounds. Possible causes include genetic syndromes, stroke, or brain injuries or abnormalities. While there is no cure, we know miraculous progress can be made given skilled intervention.</p>

<p>Not all children diagnosed with CAS will present the same way, but diagnostic signs or symptoms do exist. A child with CAS:</p>

<ul>
<li>May not babble or coo very consistently during infancy.</li>
<li>Uses very few consonant and vowel sounds and has a hard time combining sounds to form words.</li>
<li>Understands much more than he can tell us.</li>
<li>May say a word clearly once or twice, but then doesn&rsquo;t say it again.</li>
<li>Struggles to imitate speech models. You may even be able to see him groping or struggling to coordinate his mouth when trying to talk.</li>
<li>Has more difficulty saying long phrases and sentences than short ones.</li>
<li>May have choppy speech with long pauses between sounds.</li>
<li>Can be very difficult to understand, especially if you aren&rsquo;t familiar with his speech patterns</li>
<li>May have some difficulty eating</li>
</ul>

<p>If this sounds like your child, an evaluation by a speech-language pathologist is imperative. A skilled therapist will help determine the best course of intervention. All children are so very unique, and therefore, treatment plans will be custom created based on several factors, including age, severity, and of course, your family&rsquo;s schedule. However, research shows children diagnosed with CAS have a greater likelihood of success if they:</p>

<ul>
<li>Receive frequent and intensive intervention (think 2-4 sessions per week in a perfect world). It&rsquo;s important to remember the age and tolerance of your little guy when scheduling therapy. Four sessions a week may be too much for him.</li>
<li>Have the opportunity to work one on one with their therapist.</li>
<li>Are exposed to a &ldquo;multi-modality&rdquo; approach to intervention. This is just a fancy way to say using many different cues and strategies to help them create the sounds, including touch (helping him move his lips to say &ldquo;pa&rdquo;), visual (looking in a mirror), and proprioceptive (pairing movement with sounds) cues. These kiddos need to learn and remember HOW to move their speech muscles so your therapist may encourage them to repeat a word or syllable many times.</li>
<li>Practice, practice, practice at home! Even an intensive therapy program will give your child 3-5 hours a week AT MOST with his speech therapist, meaning he has 163-165 hours per week OUT of therapy room. Use those hours wisely and carve out time to practice everyday to see progress!</li>
</ul>

<p>Resources for families:</p>

<p><a href="http://www.apraxia-kids.org/">Apraxia-kids.org</a></p>

<p>References:</p>

<p><a href="http://www.asha.org/public/speech/disorders/ChildhoodApraxia/">ASHA.org - Childhood apraxia</a></p>

<p>*<a href="https://www.facebook.com/ronda.cips">Photo from Ronda Rousey's Facebook page.</a></p>

<p>&nbsp;</p><p><span><img alt="" src="http://content.presspage.com/uploads/1065/500_amandafyfepicture.jpg" style="width: 96px; height: 96px; margin: 5px; float: left;" /></span><strong>About the author</strong></p>

<p><span>Amanda Fyfe is a s</span><a href="http://www.cookchildrens.org/SpecialtyServices/Rehabilitation/Services/Pages/SpeechTherapy.aspx">peech-language pathologist at Cook Children's</a>&nbsp;<span>in Arlington and Mansfield.&nbsp;Speech/language pathologists focus on oral motor, speech, language and communication skills to enhance development, restore function and to prevent disability from pediatric conditions, illness or injury. Click</span>&nbsp;<a href="http://www.cookchildrens.org/SpecialtyServices/Rehabilitation/Locations/Pages/default.aspx">here</a>&nbsp;<span>to find the closest Cook Children's Rehabilition Services near you.</span></p>]]></description><category><![CDATA[Blogs,Ronda Rousey,speech language pathologist,speech therapy,Language,pathology,Rolling Stone,UFC,childhood apraxia,childhood apraxia of speech,Speech,CAS,motor speech,disorder]]></category>
            <pubDate>Wed, 19 Aug 2015 15:11:58 -0500</pubDate>
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