July 2016 Spotlight - UFAN (Utah Food Allergy Network)

Does Your Friend or Family Member Have Food Allergies or an Eosinophilic Disorder? If So, We’re Here to Help!

Who We Are

Utah Food Allergy Network (UFAN) is a local, non-profit, food allergy resource with a Medical Advisory Board. If you’re not familiar with us, take a moment to learn who we are, see what we’ve accomplished in our nine years, and peruse the many services we can offer. UFAN’s mission is to provide outreach to the newly diagnosed and the community at large, offering support,promoting education, building awareness of the severity of food allergies and anaphylaxis, and advocating for positive change.

What We’ve Done 

Founded in 2007 by a concerned group of moms, UFAN has flourished into a mighty force for good with well over 500 members including parents, adults, physicians, school nurses, community agencies, and schools. UFAN advocated for the passing of HB 101 Emergency Injection for Anaphylactic Reaction Act in 2008. Our former President and Pediatric Residents at PCMC created A Shot to Live (ashottolive.org), an online epinephrine training program approved by the Utah Department of Health and being used statewide.

UFAN recently opened a new Division of Eosinophilic Support (DOES) for those suffering from eosinophilic disorders as well. We have been invited to speak at numerous conferences and trainings including the Utah School Nurses Association annual conference and the Utah School Nurses Tele Health network.

What We Can Offer Your Friends and Family 

UFAN provides several online forums for patients to share support, recipes/substitutions, and tips for handling social situations. We host the annual Utah Food Allergy Conference and offer free or low-cost community activities like a food-free Easter egg hunt, a kid’s summer day-camp, and a food-free trunk-or- treat.

How You Can Partner With Us 

Help us spread the word. We constantly hear from new members that they wish they would have heard of us sooner! We are always looking for volunteers too! Join our mailing list by emailing support@utahfoodallergy.org so you can stay informed of our latest activities and initiatives. Visit us online at utahfoodallergy.org or facebook.com/utahfoodallergy.

We’ve loved working with the Utah Department of Health, the Utah Society of Allergy & Asthma, Utah School Nurses Association, Food Allergy Research & Educate (FARE—formerly known as FAAN) and many other professional organizations and businesses. We are grateful for the wonderful families and communities in Utah that has helped us to grow and we look forward to serving Utah kids and families further.

June 2016 - Kid of the Month

http://utahkidsfoundation.com/MeetOurUtahKids.aspx

March 2016 Spotlight - Scoliosis ( Dr. Gary Lee, D.C. )

Our spotlight this month is on Scoliosis.  Dr. Gary E. Lee, D.C. has been trained in a ground-breaking treatment technique, described in the excerpt below.


From the article:

I have been fortunate to have been trained in a new treatment technique called “ScoliBrace”.  This bracing technique developed by Dr. Jeb McAviney D.C. in Australia has been used in thousands of scoliosis cases, and shown to not only improve the overall posture, but to actually correct the vertebra deformed in the scoliosis.  It is actual correction of the deformed curvature, where the improvement in vertebral growth can be seen on x-rays, and improvement in the curvatures measured on x-rays.  

...

...

If you have noted changes to your child’s posture, or they have begun complaining about back pain, it is urgent to check them for scoliosis.  Scolibrace has developed a home evaluation tool you can pull up on your computer and evaluate your child. You can go to http:app.scoliscreen.com and follow the instructions.  If it indicates there may be a risk for scoliosis, call me for an evaluation.  Please mention this article to my receptionist and she will schedule your evaluation including x-rays AT NO CHARGE.

For the full article please go to this link: Scoliosis

The above information made available courtesy of:

Gary E. Lee, D.C.
Elevation Health
Non-Surgical Correction of Scoliosis
and Abnormal Postures
6216 South Redwood Road
Salt Lake City, UT 84123
801-974-5555

NOTE:  If you are a professional medical community with information that could benefit those with special needs (or their parents / caretakers) we welcome and encourage you to contact us via "info@utahkidsfoundation.com"

Utah Kids Foundation - Kid of the Month - March 2016

Lucas is 7 years old, Has Autism with flight risk, SPD, ADHD, seizures, and cyclic vomiting syndrome. Lucas also struggles with severe chewing and drastic vision loss.Lucas was a great baby, because of Zachary's issues I had milk free and soy free diet and he seemed to be thriving. he had no weight issues or failure to thrive. At 9 months old so he stopped talking he lost the words that he had. He was throwing up regularly at that point for 2 months and was diagnosed with cyclic vomiting syndrome. but he continued to thrive and not have any weight issues. he was a happy baby and met milestones early except talking. he had impulse issues as a toddler but we didn't think anything of it because most toddlers do. he also had a very high pain tolerance which the doctor was concerned about. At 2 he had his first seizures and a few months after that we went to Primary Children where they did tests and gave us no diagnosis. we were sent home to just wait and see. At 3 the doctor was starting to be concerned about a few things but couldn't quite put his finger on what was going on. he still wasn't sleeping through the night he was very impulsive and he seemed to not be able to communicate even though verbally he was well above his peers. his four year old check up the doctor finally referred him to a specialist. he wasn't understanding potty training and wasn't doing well and preschool intellectually he seemed above his peers but he was missing concepts and not being able to communicate. He was violent with his peers and struggled with any sort of friend relationship. after seeing the the specialist Dr Arch she diagnosed Lucas with autism and we started to see the things that everybody was missing. unfortunately 3 years ago in St George there was not any services for children with autism that were not on the autism waiver program. thankfully shortly after that he was on Medicaid and services open. He received in home services and Group services and was starting to make real progress on his 6th birthday he was finally potty trained and was finally thriving in kindergarten. we also find found out that he has over 150 IQ and struggled with being bored by having to stay with his peers. With the Carson Smith grant we change schools and put them in a smaller private school and he's doing amazing there he's now working on multiplication and division in first grade. Unfortunately Lucas also struggled with extreme vision loss.

They have struggled with everyday things like shopping and school.

We got a service dog for Lucas last year and he is doing great. Then our dog was attacked she was unable to work and we had to retire her. Lucas seems to be doing well with any sort of animal.

H & R Block Tax Refund - Fundraiser!

Lowe Syndrome

Hello Utah Kids Family.  My name is Molly Barrington and here is some information about Lowe Syndrome.

Lowe Syndrome is a rare genetic disorder that is also called Oculocerebralrenal Syndrome which means that this syndrome mainly affects the eyes, brain and kidneys.  Boys born with this syndrome are born with cataracts, varying degrees of intellectual disability, kidney disease, low muscle tone, and sometimes glaucoma and epilepsy. 

Lowe Syndrome is passed on the sex chromosome and is recessive.  Females carry it and males are affected by it. It is estimated that 1 in 500,000 people are affected by Lowe Syndrome and there are about 300 cases reported in the world right now.  I am a carrier of this syndrome and 2 of my 3 brothers were affected by it.  My son also has this syndrome.

My son Jonny is a happy, cheerful boy of 2.  He was born with cataracts and glaucoma and he had 5 surgeries and 8 other exams under anesthesia on his eyes before he has 6 months old.  He is legally blind without his glasses.  We hope that he will be able to have artificial lenses implanted after he turns 3.  He also spent the first 10 days of his life in the NICU because he had trouble eating and breathing.  

Jonny sees several therapists through the Early Intervention program Kids on the Move.  He rolls and scoots all over the place but we are still working on crawling, walking, and strength building.  He also has trouble with eating.  He has a g-tube to help him get enough to eat and drink.  We are working on eating pureed food.  Jonny takes several medicines to help his kidneys function properly and to help his body maintain proper balances.  He sees 3 different specialists at Primary Children’s Hospital and also has a wonderful Pediatrician.  Modern medicine has greatly improved the quality of life for people with Lowe Syndrome.  I have seen this change with my brothers and now my son.  We have high hopes for Jonny’s future and we look forward learning and growing.

For more information on Lowe Syndrome you can go to lowesyndrome.org or http://ghr.nlm.nih.gov/condition/lowe-syndrome

Utah Kids Foundation - Kid of the Month - February 2016

Makenzie was born December 22, 2005. We were so excited to have a happy healthy baby girl. But Nothing could prepare us for what was about to come our way. In February 2007 she got RSV which actually saved her life. They took an x-ray of her chest to see how bad the RSV was and that is when we found out she was born with Congenital Coronary Artery Disease and ended up with Cardiomyopathy. After her first open heart surgery at Primary Children's Hospital to correct her artery, we then found out in April that it didn't work and she needed a Heart Transplant. She got life flighted to Denver Colorado to wait for the perfect heart. 26 days later we got the call and she received the most precious gift anyone could ever give us. A second chance for our baby girl. 

It has been a very scary but humbling journey. She is now 10 years old, she is in 4th grade, she loves to read and loves science. She loves to play with her 3 sisters and 2 brother. Her favorite thing to do is bake and cook. We always have baked goods in the house. Her favorite band is 1D and she loves to watch movies with the family. Her favorite season is summer because she gets to play out side and doesn't have to wear a mask everywhere (germs yuck)! 

BE a Hero Be a Donor! CHD 1-100

For immediate release: Student Advocacy Groups Oppose Utah Bill HB75

Charity - Valentine's mini photo shoots - ENDS Midnight, 14th of February

Limited quantities so don't delay!

Amazing new Respite Care and Day Program in Riverton

I had the opportunity this weekend to check out Bear-O Care, a new business venture of Michael and Ruth Braga.  They realized that there are few options for respite in the community and even less options where siblings can stay with their special needs child.  With their son Brandon (age 17 with Autism) nearing completion from High School, they also wanted an adult day program that would cater to his needs.

The mission of Bear-O Care is to "provide a unique community approach to caring for individuals with multiple disabilities.  By including and collaborating with families, caregivers, and educators.they will provide a safe, supportive environment that maintains and builds upon the abilities and communication methods used by each individual."

They plan to begin with their day program for those individuals age 18 and up.  They will run from 9 AM to 3 PM, Monday thru Friday for 46 weeks per year.  They have a physical therapy and occupational therapy room, a recreation room, a cafeteria and crafts room along with adaptive restrooms.  There is also a sensory / cool off room for those who might need a little quiet time.  There will be 2 adults per room at all times, including the restroom for those clients needing assistance.

Respite care will be available on Friday and Saturday nights from 6 to 9 PM.  Unlike other programs, they will take in siblings ages 6 - 17 years old along with the client.  They plan to cap the total number of children as follows:

15 children with special needs
20 siblings (without special needs)

for a total of 35 children.

There will be nursing on staff to handle feeding tubes and trach care.

Bear-O Care is located at 2464 West 12600 South Suite 180, Riverton, UT 84065.  Their phone is (801) 419-4731.  They will be opening a location in Lehi this year.

While they are pending final approval to open and for their nonprofit status to be complete, they are still looking for many items.  Those items can be found at http://www.bearocare.org/#!donate/c1ghi

Utah Kids Foundation looks forward to partnering with Bear-O Care for future events!

~ Syndi

Utah Kids Foundation - Kid of the Month - January 2016

Zachary 9 years old, has had many issues since 2 weeks old. He had projectile vomiting and wasn't gaining weight they initially diagnosed him with a milk intolerance and then added soy but he continued to vomit so they ran every other test possible. Come to find out the daycare he was at was not paying attention and was feeding him milk the entire time therefore damaging his intestines possibly permanently. We left at 15 months and he was starting to get better. He also wasnt talking and add a year old we found out that he had a lot of hearing loss from ear infections . When we took him out of the take care of 15 months we also put tubes in his ears and by 18 months he was talking. He has been fine developmentally since then he's just very small and has had failure to thrive. He has had sensory issues and anxiety issues since two years old . at nine years old now it looks like they are going to add a diagnosis of cyclic vomiting syndrome.

Zachary loves legos and a shirt join the lego league at school in is doing well there he also likes to dance doing hip-hop and half and perform this question these are both really good thing for his social anxiety.

He has Milk soy Protien Intolerance, Sensory Processing Disorder, Failure to Thrive, Severe Food Allergies, OCD, ADHD, anxiety and depression, also medically induced PTSD. He was just diagnosed with cyclic vomiting syndrome possibly needing a feeding tube. 

We got a service dog for Lucas last year and he is doing great. Then our dog was attacked she was unable to work and we had to retire her. Zachary has had some regression since then. A friend gifted us a dog and he is great but needs additional training. We are working on getting training for the dog. And Lucas seems to be doing well with any sort of animal.