Resource Updates from Amy
Here are the latest updates from our Resources Coordinator Amy Reese, R.N. She has compiled another great list for the UCD community and we thank her so very much. Just click any of the blue descriptions as hyperlinks to view the content (the pictures are not the links).
FREE APP: Protein Tracking/Daily Nutrient Tracker/Add Recipes/Export Your Records
My Metabolic App
Calculating and tracking protein intake can be a very hard and troublesome task for those with protein-restricted diets.
People living with metabolic disorders are generally prescribed a certain daily protein restriction by their doctor or dietitian. These daily goals often need to be changed based on each person’s nutritional needs and age requirements. To minimize the build up of ammonia in the blood, Urea Cycle Disorder patients are typically prescribed a low protein diet and are carefully monitored by a genetics team. My Metabolic App is supported and recommended by GMDI (Genetic Metabolic Dietitians International-a 501c3) and also by TIDE BC (Treatable Intellectual Disability Endeavor in B.C.). Both are dedicated to nutritional health and prevention of intellectual disabilities of those who live with metabolic disorders.
This app focuses on all Urea Cycle Disorders, as well as other metabolic conditions such as PKU, Prop, MSUD, PDE, MMA, GA1, HCY, IVA, and TYR1. It has a protein tracker and the information provided is supported by a foundation run by dietitians (RD’s, MS, PhD’s).
This app is absolutely FREE so don’t miss out on a great app for protein tracking, nutritional info, adding recipes, and downloadable capability to export your records. Supported by Metabolic Pro Database (GMDI).
Feeding Tube Awareness Foundation
Many of our UCD community families live with day to day feedings and medicine administration by g-tubes. This foundation is a great resource for g-tube information.
This website is dedicated to providing pragmatic information for parents and caregivers on handling every aspect of tube feeding and navigating day-to-day life with a child who is tube-fed. Our education materials are written in lay terms by those with personal experience. They are reviewed by medical professionals, and have been distributed by hundreds of children’s hospitals, medical practices, and medical supply companies.
Cook For Love
Cook for Love evolved out of sheer stubbornness in 2008. As a mom, Brenda refused to accept that her daughter had to eat foods that she did not find palatable. Providing nourishment is one of the most basic responsibilities of any parent. The stakes are just so much higher and the road so much more complicated when your child is diagnosed with PKU or any other IEM. When Brenda received that devastating phone call, she too was lost and did not know where to begin. The kitchen seemed like a good place to start. Cooking for a person is an expression of love. Never is that statement more true when your child’s ability to reach their potential is dependent upon the foods they eat.
United Healthcare Children’s Foundation
Helping kids. Changing Lives.
Our mission is to improve children’s lives and help families gain access to the care they need through medical grants. We invite you to become a part of UHCCF’s legacy and help us achieve our new goal of awarding 20,000 UHCCF medical grants to children and their families nationwide by 2020!
This foundation is a truly wonderful resource, it offers up to $5,000 per year to $10,000 per lifetime for medical needs (equipment, therapies, etc.) for children up to age 16. There are family income requirements that must be met but they are more generous than most. The child cannot be on Medicaid/Medicare to qualify. Check out their website!
Families with critically ill relatives face an enormous dilemma: Stay with and support their hospitalized family member or go to work and earn income required to pay the bills. Most working family members have two weeks of vacation leave and one week of sick leave available to them. When paid time off is used up, they must take unpaid leave to remain with their family member in the hospital; an option not financially viable to many working families.
This is a regional program and offers assistance with mortgage payments if a child is hospitalized for 2 or more weeks in a 90 day period. This program does not have income guidelines, they have a frequency of eligibility provision, and they can approve your application in up to 10 minutes. Check out their website for more information.
State waivers and grants: Some states offer very little support to families of children with special needs or adults with special needs. Some states offer a significant amount of assistance. Waivers are addressed thoroughly on this website. This website has a map of the USA and it allows you to click on your state. This will launch the page which explains the availability of waivers and programs in your state. There are other resources by state which will be listed and will have clickable links to access once your state page loads.
Several states offer funding to stay home and care for their medically fragile child. Some of these states include California, Minnesota, Kentucky, Colorado. There are other states as well so please take the time to research the resources in your state. This program is not spoken of much but it is incredibly helpful and certainly available. Information about how to get paid to stay at home and care for your child is not shared willingly, but it does exist. IF your state offers this AND your care for your loved one meets criteria under IRS 2014-7 (so a 1915(c) waiver, not a state grant; care to provide assistance with activities of daily living, not nursing-which means you can provide nursing level skills but the payments are qualified under activities of daily living; living in the same home as the individual receiving care), these funds are exempt for state and federal taxes.
You can take at the IRS description about exclusionary income at the IRS webpage listed here:
Women, Infants and Children (WIC)
The Special Supplemental Nutrition Program for Women, Infants, and Children – better known as the WIC Program – serves to safeguard the health of low-income pregnant, postpartum, and breastfeeding women, infants, and children up to age 5 who are at nutritional risk by providing nutritious foods to supplement diets, information on healthy eating including breastfeeding promotion and support, and referrals to health care.
This website is maintained by the Food and Nutrition Service (FNS), a Federal agency of the U.S. Department of Agriculture, responsible for administering the WIC Program at the national and regional levels.
For our new UCD mothers who qualify, this program will help with prescribed formula but you may need to fill the vouchers at a pharmacy, or if a pharmacy can not obtain it either in your region, the WIC office may order it directly. This includes Cyclinex, Prophree, EAA, etc. (prescribed formulas).
There is an incredible amount of information that will answer any question you may have about this program on the website. Please take the time to read about the services offered through WIC for our newly diagnosed UCD infants and mothers to help alleviate the initial worry about getting your newborn (and up to age 5 with medical conditions) their medical formulas.
Smiles Change Lives
At Smiles Change Lives they understand that for many families, braces are simply out of reach because of their cost. However, they don’t believe braces should be considered a luxury. Every child deserves to feel good about their smile!
Together with over 750 partnering orthodontists, they’ve been able to give nearly 12,000 young people the confidence to smile. Their hope is that they can do the same for you and your family.
For additional information, see the FAQ’s listed on their website.
Resources: General Tips
-What is an external review and why would I need one?
-If you are struggling with insurance approving a medication, doctor, or treatment, you have the option of filing an External Review. The External Review process is essentially an insurance appeal, except your insurance company submits their coverage policy and their determinations regarding your case. You and your doctors submit the information showing the need present and the request and the External Review examines it by providing qualified doctors to review the entire situation as well as applicable laws.
Every state has the External Review process available by federal law, so find yours by clicking the link provided below.
Healthcare.gov has guidance on what it is and how you can find out about your states External Review here: