Education

Transitioning: The Independence of Self-Infusion


Transitioning from parent-assisted or clinical infusion to self-infusion can be a significant step toward independence for patients with a bleeding disorder. Self-infusing may help patients feel more in control of their bleeding disorder.


Some things to consider when transitioning are:

  • Age and maturity

  • Motor skills

  • Training 


Age and Maturity 

Some children begin to practice infusing (or assisting in the infusion process) as early as kindergarten. Most children can help with “pushing their factor” and can often tape the gauze on the infusion site by school age. Consider finding ways to have your child participate in the infusion process. As the child grows older, allow them to be more involved in the process and play a bigger role in the infusion. 

By the end of elementary school, it is ideal to have your child fully assisting in the process. Many children at this age can identify an appropriate vein for infusing and may also be ready to participate with the venipuncture. By middle school, it is beneficial for your child to be able to perform the self-infusion, whether under supervision or independently.


Motor Skills

Not all children develop equivalent fine motor skills at the same time. Your child’s ability to self-infuse very much depends on their fine motor skills. Typically by middle school, children can be trained to use a tourniquet, use an alcohol wipe to clean the infusion area, hold gauze, and apply tape or a bandage. Using a needle to infuse intravenously is a fine motor skill requiring training and practice. Encourage your child to practice under supervision. Treatment centers, bleeding disorder organizations, healthcare companies, and specialty pharmacies often hold self-infusion clinics or learning sessions. Encourage participation in such medically supervised events as it facilitates the self-infusion process under proper guidance.


Training

Whether for an adult or a child, self-infusion training should be conducted by a medical professional. There are many progressive ideas and helpful hints to help a person excel at infusing a loved one or self-infusion. As one becomes more adept at performing an infusion, preferences and techniques will develop. Be sure to practice safely, use caution, and follow your medical provider’s recommendations.


Home Infusion Steps and Helpful Tips

Even those very experienced in self-infusion sometimes miss a vein. For those living with a bleeding disorder on factor replacement therapy, this 3-page guide provides steps for successful home infusion. The guide also provides helpful tips for infusing a child.


Patient Navigation Program

Securing access to prescribed therapy, resolving insurance issues, and dealing with medically-related financial burdens represent some of the health system challenges faced by members of the bleeding disorders community. Our Patient Navigation Program is here to help!


DISCLAIMER: THIS IS NOT MEDICAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.


Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.


Transitioning to the Care of Another: A Guide to Help Transition Your Child to the Care of Another


Parents of children with a bleeding disorder may feel tethered to their child. It can be exhausting trying to explain all the details needed to care for them to another person. Because of this, some parents feel they can never leave their child’s side or that no one else can provide proper care for him or her. Lack of trust in others and feelings of being trapped can often take a toll, creating a significant amount of tension for families.

Transitioning the care of your child to another person (family member, babysitter, daycare, etc.) may cause stress if you’re not fully prepared. However, if you plan ahead and set an action plan in motion, a smooth and safe transition can take place, which may result in reduced stress!


Based on experiences from members of the bleeding disorders community, using these steps as a resource may help reduce stress during transition.

Steps for Transition

  1. Assess needs

  2. Review treatment plans and medical scenarios—train your caregiver

  3. Understand when hovering is too much


Assess needs

If your child is recently diagnosed with a bleeding disorder, review with your HTC or clinician his or her potential needs. Some items to consider:

  • Does your child wear a helmet or other protective gear?

  • Is your child limited in his/her physical ability?

  • Are you able to treat your child before leaving him/her in the care of another or will the caregiver need to administer medication?

  • Are there restrictions to what your child can or cannot do while in care of another?

A family offers this example: “My daughter uses factor weekly, and I administer it prior to her being in the care of another. Although she doesn’t have physical limitations, when leaving her in the care of another, I do not want her wrestling, playing contact sports, etc. I still leave my caregiver with a treatment plan scenario just in case!”


Review Treatment Plans

Depending on your child’s severity, your treatment plan scenario may be adjusted. 

Examples of what to include:

  • What to do in the case of a bloody nose

  • What to do if the child falls

  • What to do if the child hits their head

With each of these potential events, have a scenario planned, which almost always includes calling the parent and using RICE (Rest, Ice, Compress, and Elevate).

Parents of a more severely affected child may need to train their caregiver in the administration of factor if their dosing calls for more frequent treatment. In this case, ask a couple caregivers to consider going through the “self-infusion” protocol to learn how to administer your child’s medication.


Understand When Hovering Is Too Much

“What?! I’m a hemo-parent, there is no such thing as too much hovering!” some parents will say. While many parents may identify with this, there is such a thing as too much hovering. Over time, trust builds as you leave your child in the care of another. Though it may be tough at first, hopefully you will eventually feel you can release your anxieties and stop calling the sitter every half hour. After realizing your caregiver follows your instructions and protocols as well as checks-in with you regularly, your anxieties will likely lessen. When you’re able to control the hovering, your child may begin to understand his or her condition is manageable. Your child may also feel less stress and fear—what a wonderful thought that is!

A mom shares, “I’ll confess that my hovering is sporadic. I hover right after a major-medical incident, and I hover during transition (to elementary school, to self-infusion, to high school, and even to college).”

Though as concerned parents we may have an inclination to hover, it’s emotionally and mentally beneficial to parents and children to recognize the tendency and control the urge.


Home Infusion Steps and Helpful Tips

Even those very experienced in self-infusion sometimes miss a vein. For those living with a bleeding disorder on factor replacement therapy, this 3-page guide provides steps for successful home infusion. The guide also provides helpful tips for infusing a child.


Patient Navigation Program

Securing access to prescribed therapy, resolving insurance issues, and dealing with medically-related financial burdens represent some of the health system challenges faced by members of the bleeding disorders community. Our Patient Navigation Program is here to help!


DISCLAIMER: THIS IS NOT MEDICAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.


Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.


Transitioning: The High School Know-How—A Guide to Help Your Child Transition to High School


The transition to high school is a nerve-wracking time for most teens. New school, new schedule, new teachers, and new friends may create anxiety and nervousness for both students and parents. When you add a bleeding disorder into the mix, it can be downright frightening—if you’re not prepared! This article will help ensure proper steps are being taken to help your child with a bleeding disorder transition to school with ease.


  1. Contact the School Counselor

  2. Continue or Establish a 504 Plan

  3. Contact the School Nurse

  4. Discussion or In-service with School Personnel

Whether you communicate with the various school personnel by phone, email, or face-to-face, be sure to document your discussions in writing. Keep a log of meetings with dates, times, subject matter, and results of meetings for future references.


1. Contact the School Counselor

Speak with the school counselor to discuss the potential impact your student’s medical condition and anticipated absences may have on their education. Discuss how past absences have affected your child and what can be done to minimize the effects. If your child has a 504 Plan, include modifications pertaining to multiple classes, and make sure all teachers are made aware.


2. Continue or Implement a 504 Plan

If a 504 Plan is not yet in place, establish a plan to address absences, makeup work, the inclusion of extra time to compensate for missed instruction related to illness, extra travel time between classes when needed, and any additional educational accommodations required. Your child’s doctor’s office should be able to fill out the medical paperwork needed to initiate the 504 Plan. It is important to consider implementing a 504 Plan regardless of whether your child ever actually needs the accommodations.


3. Contact the School Nurse

Contact the school nurse to discuss your child’s medical condition. Provide the school a letter (written on letterhead) from the child’s physician or medical team explaining the following:

  • Medical condition

  • Medication and ancillary storage needs

  • Instructions for care

  • Infusion protocol, if the child is to self-infuse
    at school

  • Emergency protocol, including whom to contact

If infusing at school, discuss with the nurse where your child can infuse and what assistance they may need.

Keep in mind not all nurses are familiar with infusion protocol, so it is important to review the steps with them in advance.


4. In-Person Discussion with School Personnel

Accommodations will vary from student to student and as each individual student Invite all school personnel who may interact with your child including teachers, counselor, nurse, administrators, etc. Discuss your desired plans for various scenarios, including bleed protocol. Inform those involved of what to do should a medical situation or medical emergency arise. Explain the need for your child to have freedom of action should he or she deem necessary.


Home Infusion Steps and Helpful Tips

Even those very experienced in self-infusion sometimes miss a vein. For those living with a bleeding disorder on factor replacement therapy, this 3-page guide provides steps for successful home infusion. The guide also provides helpful tips for infusing a child.


Patient Navigation Program

Securing access to prescribed therapy, resolving insurance issues, and dealing with medically-related financial burdens represent some of the health system challenges faced by members of the bleeding disorders community. Our Patient Navigation Program is here to help!


DISCLAIMER: THIS IS NOT MEDICAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.


Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.


Educational Series: 504 Plans


Plain and simple… all children deserve, and in our country, are entitled to an education. As part of a child’s right to an education, public schools are required by law to meet the needs of every child, including children with special needs. A 504 Plan helps support a child’s educational needs.

The difficulties of living with a chronic, rare, life-threatening disease or disorder are troubling enough without having to worry about its influence on education. Having a plan in place ahead of time can reduce challenges that may negatively impact a child’s education. The purpose of this educational series is to provide an overview of the 504 Plan and share information on its importance, function, and implementation.


What is a 504 Plan?

A 504 Plan is in reference to section 504 of the federal Rehabilitation Act of 1973. It is a federal anti-discrimination civil rights statute specifically stating no person with a disability can be excluded from participating in federally funded programs or activities including elementary, secondary, or post-secondary education; specifically, “…any person who has a physical or mental impairment which substantially limits one or more major life activities, has a record of such an impairment, or is regarded as having such an impairment.” A 504 Plan details the modifications necessary for students to have the opportunity to perform at the same level as their non-affected peers. 

A 504 Plan may be useful for a child with a bleeding disorder as it can provide modifications for occupational therapy, physical education, and playground time, especially during bleeding episodes or other issues individual to each child. Typically, 504 Plans are used when a child does not have a learning impairment, i.e. autism, Asperger’s syndrome, dyslexia, attention deficit hyperactivity disorder, or other difficulty that impedes learning.


Implementing and Renewing a 504 Plan

A 504 Plan should be implemented before a child enters the public school system or within a few weeks, but can be initiated at any time. A full evaluation should take place a minimum of every 3 years or when a significant change has taken place (i.e. entering middle or high school). While nothing determines the termination date of a 504 Plan, it is very important to review it annually even if the child has not used the safeguard modifications included. Reviewing it annually with school personnel ensures accommodations will continue without having to begin the entire process again.

Even if a student has an accommodating teacher or attends a school a parent is sure will do “what is right” for the child, it is advised that a 504 Plan still be put into place as a safeguard. 

Often, public colleges and universities honor existing Section 504 Plan accommodations. The Disability Resource Center at institutions of higher learning will use these recommendations to help affected students set in place safeguards for their education, especially as it pertains to absences when taking “for credit” classes. 


504 Plan Qualifications

A qualifying student would be age 3 to 22, with an impairment, whether obvious or not, that may have been caused by illness, injury, communicable diseases, chronic or life-threatening illness, learning impairment, or disability who are entitled to educational support under the Individuals with Disabilities Education Act (IDEA) of 1973 (modified into ADA). Qualifying diseases are not listed—only that a physical and/or mental disability limiting one or more of life’s major activities may qualify a child. 

School personnel will review a variety of sources to make a determination, which may include teacher reports, school administered tests, past grades, attendance records, medical reports, observation, and information from parents. 504 Plans are enforceable only at public education institutes, but other institutes may choose to abide by the guidelines and accommodations as well. 


Accommodations 

Accommodations will vary from student to student and as each individual student progresses through the grades. As much as possible, the child will be kept in regular classrooms rather than in a special class.

Common accommodations include: 

  • Extended time on tests, assignments, and post absence make-up work 

  • Class notes to be provided post-absence

  • Home services/supplements if the absences extend beyond 2 consecutive school days

  • Visual, verbal, or technology aids 

  • Extra travel time between classes

  • Extra set of text books for home use

  • Adjusted class schedule, grading, and homework requirements 

  • Preferential seating 

  • Adjustments to physical education class, elective school sports, and playground time 

  • Occupational or physical therapy


504 Plan Referral

A referral is all that is needed to establish a 504 Plan. In most states, a referral directly from a parent is acceptable; however, for a smoother process, obtain referral or recommendation notes from the child’s doctor, nurse, or clinician whenever possible. Typically, the referral is provided to the school counselor, but may also be submitted to the school nurse or child’s teacher. Medical documentation is not always needed, but prepare to share the following information:

  • Diagnosis

  • Schedule of doctor visits and any hospitalizations in the past year

  • School attendance records for the past year

  • A list of potential or foreseeable issues

  • A list of requested accommodations


Home Infusion Steps and Helpful Tips

Even those very experienced in self-infusion sometimes miss a vein. For those living with a bleeding disorder on factor replacement therapy, this 3-page guide provides steps for successful home infusion. The guide also provides helpful tips for infusing a child.


Patient Navigation Program

Securing access to prescribed therapy, resolving insurance issues, and dealing with medically-related financial burdens represent some of the health system challenges faced by members of the bleeding disorders community. Our Patient Navigation Program is here to help!


DISCLAIMER: THIS IS NOT MEDICAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.


Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.


The College Send-Off: A Guide for a Smoother Transition


You have raised your child to adulthood, helped them through school, and now are preparing them for college. You helped with application and admissions, bought all the dorm room supplies, and set them up on a dining plan.

You feel confident you prepared them to manage their bleeding disorder. They’re ready for an independent life, but are they really ready? Do you both know where their medication will be shipped, or where to dispose of supplies post infusion? What happens if a medical incident prevents attendance in a credit-bearing class with a mandatory attendance rule? Does the school have parking options if the child has mobility issues? Even the most prepared parents might need an overview of some of the things to prepare for when sending your child with a bleeding disorder off to college.


1. Contact the Hemophilia Treatment Center, Hematologist or Physician

Ask the physician for a letter explaining your child’s medical condition and its potential impact on education. The note should also explain that due to the patient’s condition, medication must be kept readily on hand and in some cases, at a controlled temperature. The student may need use of a refrigerator in their dorm room for the sole purpose of storing medical products.


2. Contact Student Housing (On Campus Housing)

Contact the student housing manager to let them know that a student with a chronic medical condition is coming to live on campus. Ask what documentation needs to be presented to allow the student to keep medication and supplies on hand. Be certain you document (via email or fax) the housing manager with whom you spoke. Be sure to follow up 30 days prior to the start of school and within a day or two of the student moving into the dorms. 


3. Contact the Student Health Center

The providers at the Student Health Center will be the first line of defense in a medical situation. A basic bump, bruise, slip, or fall may not be a big deal to other students, but may present a bigger problem for a student with a bleeding disorder. By contacting the Student Health Center, you can provide an overview of bleeding disorders and protocols as it pertains to your student’s bleeding disorder.


4. Contact the Surrounding Medical Providers 

Locate healthcare providers near campus that may have some experience with bleeding disorders. Contact the identified providers ahead of time to make introductions and familiarize them with your student’s history and bleeding disorder needs.


5. Contact Shipping and Receiving 

Contact campus shipping and receiving for their policies and procedures for receiving packages on campus. Identify the process for your student’s campus, and request modifications for medication deliveries, if needed.


6. Work with the HTC or Hematologist and Partner with Industry for an In-Service

When a student goes to college, they are separated from their customary support system. They no longer have someone who has been trained to support, help find the vein, or assist in mixing their dose when needed. It’s important for the student to find a person they’re comfortable disclosing their medical condition with and to develop a new support system. Often, HTCs or homecare and specialty pharmacies can conduct a short in-service to teach bleeding disorder basics and the role of a patient’s support system. Once the student determines with whom they’re comfortable disclosing their condition, it might help to schedule a session.


7. Does Your Child Have Educational Accommodations (504 Plan)?

A 504 Plan for health impairment is enforceable in federally funded educational settings for students, ages 3-22. If your student had a 504 Plan for their bleeding disorder in high school, it can most likely be implemented in college, especially if they attend a state college or university. Don’t wait until absences have caused them to drop or fail a class. Schedule a meeting with the school’s Disability Resource Center (DRC) to discuss the student’s current 504 Plan.


Home Infusion Steps and Helpful Tips

Even those very experienced in self-infusion sometimes miss a vein. For those living with a bleeding disorder on factor replacement therapy, this 3-page guide provides steps for successful home infusion. The guide also provides helpful tips for infusing a child.


Patient Navigation Program

Securing access to prescribed therapy, resolving insurance issues, and dealing with medically-related financial burdens represent some of the health system challenges faced by members of the bleeding disorders community. Our Patient Navigation Program is here to help!


DISCLAIMER: THIS IS NOT MEDICAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.


Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.


Transitioning: Heading to School—A Guide to Help Transition Your Child to School


The transition to school for any parent may be a stressful time. For a parent of a child with a bleeding disorder, the stress and challenges are multiplied. This guide was created to help families avoid potential obstacles and create a school environment where their child with a bleeding disorder can excel.


  1. Have a Medical Plan in Place

  2. Meet with the School Nurse

  3. Contact the School Counselor

  4. Implement a 504 Plan

  5. Meet with Educators and Administrators

  6. Advocate for Your Child


1. Have a Medical Plan in Place

Having a medical plan in place can help the school nurses and teachers care for your child and keep him or her safe. Nose bleeds, bruising, hard bumps and falls, and head injuries are a few of the issues that may need to be addressed throughout the school year. Your child’s medical plan should include details such as who to contact and procedures for each incident. For example, Johnny falls on the playground hitting his knee, resulting in bruising. Protocol may include sending the child to the school nurse for evaluation (accompanied by another student or adult), immediately implementing RICE (rest, ice, compression, and elevation of the impacted area), calling the parents, and potentially initiating an infusion (if the student can self-infuse). Medical plans and procedures should be reviewed in person with the school staff and modified as often as needed, both verbally and in writing.


2. Meet with the School Nurse

Prior to meeting with the school nurse, obtain an official letter from your child’s physician or treatment center. The document should be on official letterhead and signed by the physician or member of the child’s medical team. Contents should include treatment protocol, emergency contact phone numbers, specific instructions regarding the child’s care, storage instructions for an emergency dose of factor, all needed ancillaries, a list of additional medications, and storage requirements. Provide a treatment protocol including whether the child is to self-infuse.

Arrange to meet with the school nurse to review the physician’s treatment protocol. Provide a “kit” and package all needed items together. The kit can then be quickly accessed in the event of an emergency at school.


3. Contact the School Counselor

Arrange a meeting to discuss your child’s bleeding disorder relative to school performance and emotional well-being with the school counselor or psychologist. The discussion should include how to treat bleeding episodes, chronic or episodic pain, class tardiness, or how being absent may impact his or her education. Discuss initiating a 504 Plan for the student, if one is not already in place.


4. Implement a 504 Plan

“A 504 Plan is a plan developed to ensure a child who has a disability identified under the law and is attending an elementary or secondary educational institution receives accommodations that will ensure their academic success and access to the learning environment.”*

A 504 is available to students, ages 3-22, who attend a school that receives federal funding (i.e. public school, universities, and colleges) and who has one or more life activities impacted by a qualifying health impairment. Physicians and parents alike may refer their child for a 504 evaluation. The child’s physician or medical team is required to submit medical forms verifying the student’s condition is considered chronic, qualifying him or her for a 504. Include specifics in the 504 such as how excess absences will be handled, the inclusion of extra time allocated to compensate for missed instruction, missed class work and homework, copies of notes, extra textbooks, as well as additional educational accommodations needed. 

Do not hesitate to put a 504 in place for your child. The 504 protects the student’s educational integrity given their medical condition. This does not categorize your child as “special education student” rather it protects his or her educational interest under similar protections from the Office of Civil Rights and specifically the American’s with Disabilities Amendment Act. Even if your child NEVER uses the 504 accommodations, it is best to repeatedly renew annually to avoid any disruption in the documentation process should your child ever need the accommodations.


5. Meet with Educators and Administrators

Request a meeting with all persons who will interact with your child to discuss your desired plans for various scenarios. All steps and protocols should be discussed in a face-to-face meeting as well as documented in writing. Be sure to keep a log of meetings for reference.


6. Advocate for Your Child

Sending your child to school can be a nerve-wracking event. Being prepared can help alleviate the anxiety and stress of this step in your child’s life. Please use this document as guidance for preparedness. You are your child’s best advocate; however, if you find yourself in need of assistance or information, please feel free to reach out and ask questions! We are with you every step of
the way!


Home Infusion Steps and Helpful Tips

Even those very experienced in self-infusion sometimes miss a vein. For those living with a bleeding disorder on factor replacement therapy, this 3-page guide provides steps for successful home infusion. The guide also provides helpful tips for infusing a child.


Patient Navigation Program

Securing access to prescribed therapy, resolving insurance issues, and dealing with medically-related financial burdens represent some of the health system challenges faced by members of the bleeding disorders community. Our Patient Navigation Program is here to help!


DISCLAIMER: THIS IS NOT MEDICAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.


Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.


*Source for 504 Plan can be found at: http://www.washington.edu/doit/what-difference-between-iep-and-504-plan.  Site accessed on 5/31/17.


Putting Your Mask on First


When on an airplane, the flight attendant procedurally says something like, “If oxygen masks release and you are traveling with a child, please secure your own mask first before assisting others.” Historically my thoughts were, “Wait, WHAT?!? You think I am going to selfishly put my mask on first when I could save my child? You’re crazy!” 


That was until I experienced my first signs of caregiver burnout. The frustration, anxiety, and difficulties with my own health became more prevalent, and I became, at times, unable to physically or emotionally care for my own child with a medical condition. It was at this point I learned the healthier I am, the better, more attentive, and more capable parent I can be.

 Why did it take so long to figure this out? The fear of being a “burnout” or something other than a superhero, was overwhelming. The fear someone else might not care for my child the way I would, or that I would miss something if I took a moment for myself was overwhelming. Any parent who has skipped taking a shower, slept on a child’s floor, or forgotten to eat because they were too busy taking care of their child, knows EXACTLY what I am talking about… these pointers are for you! 

Telltale signs and symptoms of caregiver stress that may lead to burnout include:

  • Feeling tired

  • Anxiety, depression, irritability

  • Trouble sleeping

  • Increased personal health problems

  • Difficulty concentrating

  • Feeling overwhelmed or without adequate support while caring for your loved one


Methods to Help Mitigate Burnout

Practice stress-reduction strategies, such as meditation or stretching

Get as much rest as possible… naps are acceptable!

Maintain a routine including nutritious meals, and assign yourself a regular bedtime

Exercise—even if that means parking a bit further from your destination, walking will get your blood flowing. Exercise can also combat depression. Try to exercise at least 10 minutes a day.

Schedule time off from care giving. Don’t be afraid to ask for help from a family member, friend, or neighbor. It’s healthy to take a break, if even for just a few moments.

Reach out for support to help you with your feelings. Talk to your medical provider, family member, trusted friend, or a counselor. Many communities have support groups for caregivers as well.

Remember, you must care for yourself in order to care for someone else. There is nothing selfish about caring for your own health.


BioMatrix Specialty Pharmacy offers exceptional service and support for patients requiring infused or injectable medications.

Our tailored approach for a broad range of therapeutic categories helps improve quality of life for patients while producing positive outcomes along the entire healthcare continuum.  

Through individualized specialty pharmacy services, timely access to care, and focused education and support, we are making a difference in the communities we serve, one patient at a time.


To learn more about the therapies we serve, click below:


DISCLAIMER: THIS IS NOT MEDICAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.


Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.


Video: The 411 on 504's (2022)

For caregivers of children with a chronic health condition, it is important to understand legal rights for academic accommodations.

Join BioMatrix as we host a webinar focused on facilitating academic success for children with special healthcare needs.

Overview: This program is designed to empower parents to understand their child’s rights for accommodations in the academic setting. The presentation provides information and resources to design and implement effective 504 plans, transition between grades, schools, and alternate academic settings during the time of COVID-19. Presented by a mother and educator with children who have multiple chronic health conditions, this presentation draws on research, resources, and personal experience.

Key Learning Objectives:

  • Understand qualifying conditions and rights for academic accommodations

  • Understand the components of a 504 plan

  • Learn how to effectively set-up, implement, utilize, and preserve a 504 plan

  • Understand 504 coverage in Pre-kindergarten, Primary, Secondary and Post-Secondary environments

  • Understand the impact of COVID-19 on 504's and other accommodations

  • Identify resources and support to help during the upcoming school year

Please direct any questions related to this webinar by email to: education@biomatrixsprx.com

Thank you!


About Kelly Lynn Gonzalez
Regional Care Coordinator / Education Development Specialist @ BioMatrix Specialty Pharmacy

Kelly Lynn Gonzalez is a patient, parent of patients, and spouse in the rare disease community. Having personal experience with bleeding disorders, autoimmune disease, PIDD, epilepsy, and cancer – Kelly presents material colored by nearly three decades of experience managing chronic health conditions.

Her presentation style draws on both personal journey and professional expertise to educate, inspire and empower audiences. She channels a sincere passion for helping others facing chronic illness with previous experience as a teacher to lead heartfelt and dynamic programming. Kelly holds an MBA and MA in Education.


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Sign up for our monthly e-newsletter, BioMatrix Abstract.

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Video: Safer Travels

This program is designed to help prepare a person to travel with reduced stress and anxiety.

Through travel tips, regulations, and rights as it pertains to traveling with chronic conditions, you can feel confident to navigate it all on your next trip.

Key Learning Objectives:

  • Learn about travel regulations, restrictions, and the impact they have on persons with chronic conditions

  • Learn travel preparedness opportunities

  • Understand how to seek access to care when out of state/country

  • Become informed about transporting medications while traveling

  • Alleviate stress and anxiety related to traveling

Please direct any questions related to this webinar by email to: education@biomatrixsprx.com

Thank you!


About Kelly Lynn Gonzalez
Regional Care Coordinator / Education Development Specialist @ BioMatrix Specialty Pharmacy

Kelly Lynn Gonzalez is a patient, parent of patients, and spouse in the rare disease community. Having personal experience with bleeding disorders, autoimmune disease, PIDD, epilepsy, and cancer – Kelly presents material colored by nearly three decades of experience managing chronic health conditions.

Her presentation style draws on both personal journey and professional expertise to educate, inspire and empower audiences. She channels a sincere passion for helping others facing chronic illness with previous experience as a teacher to lead heartfelt and dynamic programming. Kelly holds an MBA and MA in Education.


Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

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Video: The 411 on 504's (2021)

For caregivers of children with a chronic health condition, it is important to understand legal rights for academic accommodations.

Join BioMatrix as we host a webinar focused on facilitating academic success for children with special healthcare needs.

Overview: This program is designed to empower parents to understand their child’s rights for accommodations in the academic setting. The presentation provides information and resources to design and implement effective 504 plans, transition between grades, schools, and alternate academic settings during the time of COVID-19. Presented by a mother and educator with children who have multiple chronic health conditions, this presentation draws on research, resources, and personal experience.

Key Learning Objectives:

  • Understand qualifying conditions and rights for academic accommodations

  • Understand the components of a 504 plan

  • Learn how to effectively set-up, implement, utilize, and preserve a 504 plan

  • Understand 504 coverage in Pre-kindergarten, Primary, Secondary and Post-Secondary environments

  • Understand the impact of COVID-19 on 504's and other accommodations

  • Identify resources and support to help during the upcoming school year

Please direct any questions related to this webinar by email to: education@biomatrixsprx.com

Thank you!


About Kelly Lynn Gonzalez
Regional Care Coordinator / Education Development Specialist @ BioMatrix Specialty Pharmacy

Kelly Lynn Gonzalez is a patient, parent of patients, and spouse in the rare disease community. Having personal experience with bleeding disorders, autoimmune disease, PIDD, epilepsy, and cancer – Kelly presents material colored by nearly three decades of experience managing chronic health conditions.

Her presentation style draws on both personal journey and professional expertise to educate, inspire and empower audiences. She channels a sincere passion for helping others facing chronic illness with previous experience as a teacher to lead heartfelt and dynamic programming. Kelly holds an MBA and MA in Education.


Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

We value your privacy. Review our Privacy Policy here.

Video: The 411 on 504's

BMX-411504-01.jpg

For caregivers of children with a chronic health condition, it is important to understand legal rights for academic accommodations.

Join BioMatrix as we host a webinar focused on facilitating academic success for children with special healthcare needs.

Overview: This program is designed to empower parents to understand their child’s rights for accommodations in the academic setting. The presentation provides information and resources to design and implement effective 504 plans, transition between grades, schools, and alternate academic settings during the time of COVID-19. Presented by a mother and educator with children who have multiple chronic health conditions, this presentation draws on research, resources, and personal experience.

Key Learning Objectives:

  • Understand qualifying conditions and rights for academic accommodations

  • Understand the components of a 504 plan

  • Learn how to effectively set-up, implement, utilize, and preserve a 504 plan

  • Understand 504 coverage in Pre-kindergarten, Primary, Secondary and Post-Secondary environments

  • Understand the impact of COVID-19 on 504's and other accommodations

  • Identify resources and support to help during the upcoming school year

Please direct any questions related to this webinar by email to: education@biomatrixsprx.com

Thank you!


About Kelly Lynn Gonzalez
Regional Care Coordinator / Education Development Specialist @ BioMatrix Specialty Pharmacy

Kelly Lynn Gonzalez is a patient, parent of patients, and spouse in the rare disease community. Having personal experience with bleeding disorders, autoimmune disease, PIDD, epilepsy, and cancer – Kelly presents material colored by nearly three decades of experience managing chronic health conditions.

Her presentation style draws on both personal journey and professional expertise to educate, inspire and empower audiences. She channels a sincere passion for helping others facing chronic illness with previous experience as a teacher to lead heartfelt and dynamic programming. Kelly holds an MBA and MA in Education.


Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

We value your privacy. Review our Privacy Policy here.