Finding a Silver Lining from DKA

Finding a Silver Lining from DKA

Finding the Silver Lining from Diabetic Ketoacidosis

Finding a Silver Lining from DKA

Diabetic Ketoacidosis at
Freshman Orientation Camp

In August 2015, our 18 year old Type 1 Diabetic son set off for his college freshman orientation camp.

He almost did not make it home alive.

DKA is a demon. It shows no mercy. It sneaks in on your bad days and is always waiting in the wings to grab you if you let your guard down.

Type 1 Diabetes and Sports

Tristan Edgar is a college student at
Texas Tech University in Texas. 

What is DKA?

Diabetic ketoacidosis (DKA) is a complication from diabetes that can be serious and life-threatening. DKA is often a common factor when first diagnosed with Type 1 diabetes and can often be mistaken for flu symptoms. It also occurs during the management of the disease when the body is not receiving enough insulin to break down glucose. This forces the body to start breaking down fat as fuel and ketones are then released into the body. Elevated ketones in the urine, severe weight loss, extreme thirst, blurry vision, lethargy and disorientation are all signs of DKA. If left untreated, DKA will lead to coma and death. For more information on DKA, please visit Beyond Type 1 DKASource: Beyond Type 1 www.beyondtype1.org

 

Dehydration plays a role

DKA snagged my son within the first day of his camp. A stomach bug and dehydration gave DKA an invite to join his plans. No, his blood sugar was not necessarily high. It is important to note that blood sugars do not always have to be high for diabetic ketoacidosis.

Dehydration can have a huge impact as well. Combined with a stomach virus, that was a cocktail that could not be beat.

College freshmen are adults

Yes. The camp knew he was diabetic. Yes. They had a full clinic onsite. But a clinic that does not recognize the signs of DKA can’t help. A teen who does not realize how quickly things can go seriously wrong creates a perfect storm.

It is also important to remember, teens going off to college are adults. Due to HIPAA, a clinic will not take the initiative to call the parents.

Too sick to be here…at the hospital!

Between 6-7 hours after he stepped into the camp clinic, they sent a camp counselor to drive him to the hospital. He was so sick at this point, he needed to be in ICU!

The hospital took one look at him and said “He is too sick to be here!” So they shipped him  five hours by ambulance to the medical center in Houston. Two full time attendants on him – a moving Intensive Care Unit on wheels.

Very lucky

Everybody got very lucky on this one. Our son, our family and the university. We dodged the DKA bullet. And we ALL learned something very valuable.

With the development of new technology such as CGMs and close parental management, it is possible to go many years without a DKA incident.

That is fantastic for our T1s. But… that also means we forget.

DKA can be deadly

Unless your teen has had a recent diabetic ketoacidosis incident, it is easy for a teen to head off to college not realizing how serious and deadly it can be. And it’s fast. Immediate response to DKA is critical.

DKA likes to loom behind simple illnesses. Knowing how to handle a sick day is important for teens.

You can learn more about a College Sick Day plan here. 

Teach your Teen the Signs of DKA!

Headaches – Extreme Thirst – Frequent Urination
Fatigue & Weakness – Blurry Vision – Fruity Breath Odor
Rapid Deep Breathing –  Nausea & Vomiting
Pain in the abdomen – High Ketone Levels (blood/urine)
High Blood Glucose* – Dry/Flushed Skin

*BG does not always have to be high to develop ketones.
Dehydration and illness can impact DKA symptoms.

Remind your teen that these symptoms can also be mistaken for:
flu, virus, a stomach bug or strep throat.

Finding a silver lining

Our family tries to find the silver lining in the dark cloud of diabetes. We created Type 1 To Go Teen so we could share some of the challenges of T1D Teen years.

There are so many things to address before a teen leaves for college. DKA Awareness should be one of them.

Over the last year, I have spoken at many events. Parents and teens ask me what I think is the MOST important thing they should do to prepare to leave for college with diabetes.

My answer: Know the signs of DKA and have a Sick Day Plan.

DKA Awareness at the University

In addition to Type 1 To Go Teen, we have asked our son’s university to participate in the Beyond Type 1 DKA Campaign. University health services teams need to know the symptoms and seriousness of DKA.  They also need to be able to share that with their Type 1 students who are away from home for the first time.

We are losing too many young adults to DKA. That was almost us and we will never forget that. It was a great teachable opportunity for everyone involved.

Texas Tech University kicks off the Beyond Type 1 Type 1 Diabetes/DKA Campaign.

Texas Tech Health Services Team is “Guns Up” to promote
Type 1 Diabetes Awareness on their campuses!

A silver lining from my son’s DKA – Texas Tech University became the third Texas college to commit to the Beyond Type 1 DKA Awareness campaign. The Student Health Science center is a vital team player for our son’s well-being while he is at school.

I am super proud of Texas Tech University for increasing awareness for Type 1 Diabetes and DKA with their students.

Making friends at camp

Our son did not get to enjoy his college freshman orientation experience. Being in DKA prevented him from making new friends at the camp.

However, his friends made friends.  His friends introduced him to a sweet young girl from the camp the first week on campus.

They introduced him as “That kid who was in the hospital at camp”. She said “Oh, you’re that guy!” and he said “Yep, I’m THAT guy!”

And they have been together ever since!!!

Texas Tech Students support the Beyond Type 1 T1D/DKA Campaign

Tristan Edgar & Amanda Hodge met the first week at Texas Tech University.
They are excited to see Texas Tech increase Type 1 Diabetes awareness. 

That sweet girl has been a blessing to our family. Amanda is studying nursing and she keeps an eye on our Type 1 Diabetic son for us! She has even attended his endocrinology appointments with him. Our son adores her and so do we!

Now that’s truly finding a silver lining from DKA!!!

Written by Anne Imber
published on 7/12/2017 by www.Type1ToGo.com 

Anne Imber is the mom to a Type 1 Diabetic son diagnosed in 2009. As the Founder of Type 1 To Go Teen, Anne shares her experiences with other Type 1 families regarding many of the non-medical issues that Type 1 Diabetic Teens face. The website www.Type1ToGo.com provides support materials from her presentations. Anne is also the Co-Founder of Cy Fair Type One Connection, a T1 School Advocacy & Support Group for one of the largest school districts in Texas.

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This information provided for general use only.
It is not intended as medical and/or legal advice.
Always consult your doctor for medical advice.
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School Advocacy for Type 1 Diabetes

School Advocacy for Type 1 Diabetes

Type 1 Diabetes School Advocacy Blog Post Beyond Type 1

School Advocacy for Type 1 Diabetes

A featured blog from Beyond Type 1

 

School support is an important issue for families living with Type 1 Diabetes.  Beyond Type 1, a global non-profit Type 1 Diabetes organization,  recently posted a blog written by Anne Imber about school advocacy for Type 1 Diabetes. BT1 featured the blog about the team of school advocates in Texas aiming to create a voice for their Type 1 families.

Cy Fair Type One Connection is group of T1D parents  striving to create a positive and pro-active relationship with their school system on behalf of all their Type 1 families.

Read more below on Cy Fair Type One Connection!

Cy Fair Type One

A T1D School Advocacy & Support Group 

CFTOC Core Team Members (left to right)
Amy Josefy, Anne Imber, Carolyn Boardman,
Angela Vinson and Robin Hall.
(Not pictured, Ilka McCraren, Courtney Livingston)

Amy Josefy & Carolyn Boardman lead other T1D causes too such as the BT1 DKA Awareness campaign in Texas. With the help of their friends, family and fellow Cy Fair Type One families, they packed and shipped materials for pediatricians across the state.

Texas DKA Awareness Campaign

Cy Fair Type One Leader, Robin Hall (far right) has two T1D boys. She has been mentoring families in Cypress for years.The CFTOC committee meets often to discuss and propose T1D school solutions based on community feedback.
CFTOC Families stay connected through a closed Facebook Group

Supporting Type 1 Diabetes Non-Profit Organizations & Causes

Cy Fair Type One Supports BT1 DKA Awareness Campaign

Cy Fair Type One Connection Teens help with the BT1 DKA Awareness campaign. From left to right, Matthew Boardman, Macey Parr and Jackson Sutter.  T1D Teens serve their community together through CFTOC.

CFISD Millsap JDRF School Walk

Cy Fair Type One Leader, Anne Imber, conducts and supports JDRF School Walks within her school district. Raising T1D awareness is a priority of CFTOC.

CFISD Millsap JDRF School Walk

Core Team Leader, Courtney Livingston, participates in Cy Fair Type One picnic for the American Diabetes Association’s Camp Rainbow.  Families raised money for this Type 1 Diabetes camp during this fun event.

Education and Connection 

CFTOC Educational T1D Event

Cy Fair Type One hosts educational events for the families with Type 1 Diabetes. Events include Teen Talk, 504s, Psychological Side of T1D, Preparing for Kindergarten with T1D and more.

Brandon Green speaks to families about playing sports with Type 1 Diabetes

Brandon Green, T1D and Retired NFL Football player, speaks to families about sports with Type 1 Diabetes. Cy Fair Type One focuses on Extracurricular Activities for T1D students.

Cy Fair Type One Camp Rainbow Picnic

Cy Fair Type One Connection is about connecting families living with Type 1 Diabetes. The group was formed to support one school district but events are always open to all families in the Houston, Texas area.

Written by Anne Imber
published on 5/30/2017
Anne Imber is the mom to a Type 1 Diabetic son diagnosed in 2009. As the Founder of Type 1 To Go Teen, Anne shares her experiences with other Type 1 families regarding many of the non-medical issues that Type 1 Diabetic Teens face. The website www.Type1ToGo.com provides support materials from her presentations. Anne is also the Co-Founder of Cy Fair Type One Connection, a T1 School Advocacy & Support Group for one of the largest school districts in Texas.

This information provided for general use only.
It is not intended as medical and/or legal advice.
Always consult your doctor for medical advice.
All Rights Reserved. 

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T1D Extracurricular Activities and School Requirements

T1D Extracurricular Activities and School Requirements

T1D Extracurricular Activities and
School Requirements

School support is required

In our blog, 504 Plans and Extracurricular Activities  we addressed the risky gaps in care for Type 1 Diabetics. We had discovered parents were just assuming it was not covered by the school. Or simply, they picked up the slack and worry.

Simply stated – school support is legally required.

This does not mean the school has to keep the clinic open or provide a nurse. There are other various “accommodations”  a school can provide during the “off” hours to provide support.

Extracurricular Activities include
Band, Drill Team, Theater and more….

Here is what the school should provide:

  • Designate a TRAINED staff member to be responsible for the student during non-school hour Extracurricular Activities. This should also include all off-campus activities.
  • Provide Type 1 Diabetes Awareness Training to appropriate staff.
    • Differences between Type 1 vs. Type 2
    • Signs of High/Low blood sugars
    • Treatment responses for High/Low blood sugars
    • Emergency Response Procedure
    • Glucagon Training depending on the situation
  • Designate a staff member who will always have immediate access to emergency diabetes supplies.
    In some cases, requiring staff to carry and keep extra supplies throughout all activities on and off campus.
  • Depending on the activity and situation, the school may train staff in Glucagon administration.

Coaches Playbook for Diabetics

Share Brandon Green’s Handout with Coaches!

What is the parent’s role?

  • Informing the school of the student’s activity involvement.
  • Providing an extra set of emergency supplies including an EXTRA Glucagon.
  • Providing extra snacks/drinks for the activity
  • Knowing who is responsible for the child during activities. Know how to reach this person. This is important for parents who are monitoring on a CGM. During non-school hours, school phones may not be answered.
  • Allow the school to choose the staff member responsible to train. (The school can’t require non-medical staff to do training/treatment so another staff member may need to be chosen.)
  • Be ahead of the game. Inform the school with advance notice so they can train staff prior to the start of the extracurricular activity.
  • Don’t forget summer camps and summer training activities.

Communication is key

Good news! Most Extracurricular Activities occur in Middle School and High School. Even then, not all Type 1 Diabetic students may be able to self-manage completely depending on the stage since diagnosis. However, T1 students can and should communicate with their parents about a plan for these types of activities.

Communication is key when working with the school.

Information allows for accommodations

Most importantly, the Type 1 Diabetic student should not have to hide his condition to participate. Yes, there will be times a student may not be able to fully participate due to diabetes issues.

An informed and trained staff member should always accommodate the student in those situations. Diabetes should never prevent our kids from participating in the things they love.

Extracurricular Activities

Use this Checklist to Plan for Extracurricular Activities 

Type 1 To Go provides more information on reports and letters issued by the U.S. Department of Education specifically regarding students with disabilities and extracurricular activities. Please visit our Extracurricular Page for these resources.

In addition, T1TG offers the following To Go Tools for families including several guides from Brandon Green, T1D and former NFL football player. Check out the T1ToGo tools!

Extracurricular Activities with Type 1 Diabetes  is definitely a Team Sport between student, parents and school!

Get your game plan going!
Written by Anne Imber
published on 5/22/2017

Anne Imber is the mom to a Type 1 Diabetic son diagnosed in 2009. As the Founder of Type 1 To Go Teen, Anne shares her experiences with other Type 1 families regarding many of the non-medical issues that Type 1 Diabetic Teens face. The website www.Type1ToGo.com provides support materials from her presentations. Anne is also the Co-Founder of Cy Fair Type One Connection, a T1 School Advocacy & Support Group for one of the largest school districts in Texas.

This information provided for general use only.
It is not intended as medical and/or legal advice.
Always consult your doctor for medical advice.
All Rights Reserved. 

Related Blogs 

Related Pages to this Blog

Extracurricular Activities
Brandon Green (Sports with T1D)
504 Plans for Type 1s 

 

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Turning 18 for High School Seniors Presents a Medical Dilemma

Turning 18 for High School Seniors Presents a Medical Dilemma

Turning 18 for High School Seniors

An Important Reminder for Parents! 

Turning 18 for High School Seniors presents a medical dilemma. This is an important reminder for parents. Once your child turns 18, you no longer have access to their medical records and doctors. That magic number 18 shuts doors for parents still trying to assist their child when making medical decisions.

Managing a child with a chronic illness? Parents, add this to your List of Things To Do Senior Year.

Of course those same issues apply for ANY parent and teen.  If you have a High School Senior, it is important to review this before your teen leaves the nest.

Trust me! Two hospitals and a five hour ambulance ride with our 18 year old taught us how important it is!

Teens are not always ready

Life with Type 1 Diabetes  involves far too many medical appointments and hospital visits. Hundreds of medical decisions and appointments shared together with my kid.

Even when a “child” suddenly turns 18 and qualifies as an “adult”, they are not always ready to take on responsibility of all their medical decisions.

Speaking from experience

Within 24 hours of sending our Type 1 Diabetic son to his College Freshman Camp, we received a call from a college camp counselor that our son was being admitted to a hospital. He was in serious DKA from his diabetes. DKA can be deadly. It is so serious the hospital in that small Texas town could not handle him.

They were going to be shipping him out… anywhere…just some place capable of handling his potentially deadly condition.

Over 250 miles from home and the hospital was preparing to ship him out to another hospital within a 500 mile radius from us.

Scary.  We had not even been able to speak with our son. We just started driving…and hoped they would tell us where he was going.

At 18, he was officially an adult

At 18, he was officially an adult but he was still my child. And he was far too sick to be making any decisions for himself.

There is nothing worse than being in that situation and the hospital won’t let you speak to your child.  They won’t give you any information either. All because of the rules with HIPAA.

For any parent with a High School Senior, I highly recommend you read up on HIPAA. You and your teen are going to need to know this.

We were prepared

Thankfully, we were prepared for just this type of situation. We had a Medical Power of Attorney in place for our son so we could make decisions for him. It also gave the hospital the right to speak with us about his condition.

My son really did not want to get the bills from the hospital either! This also gave us the right to speak with the hospital regarding billing.

Having the appropriate legal documentation in place allowed us to still be involved with our son’s medical care.

HIPAA - LEARN MORE!

Every family needs to know this. 

Are YOU ready?

I know it’s so easy to get caught up with Graduation parties and decorating dorm rooms.  But this is one more thing you need to add to your List of Things To Do.

If you happen to have a child with a chronic health condition like we do, it is an absolute must. Type 1 To Go has a great Turning 18 page you can review for reference.

It applies to ALL teens turning 18, we just happen to have one who is Type 1 Diabetic.  If you know friends with graduating High School seniors, share this with them too.

Check out our Turning 18 Page!

A must read for parents of High School Seniors. 

Five hours by ambulance – a moving ICU

After driving two and a half hours to reach our son, the hospital decided to send our son to The Medical Center in Houston, Texas. It would be a five hour ambulance ride manned by two attendants in addition to a driver. A moving Intensive Care Unit.

By talking with us, the ER doctor decided Houston would be the best place for him. We are thankful for the smart and compassionate doctor who treated him in our absence with our input over the phone.

We were thankful we were able to tell the hospital that we had Medical Power of Attorney for our son so they would speak with us. We also have this documentation in an electronic format so we can easily share it with others in an emergency.

The billing

Since HIPAA impacts billing, my son was grateful that we could pay the two hospital visits and five hour ambulance ride. Without the proper documentation, we would not have been able to negotiate the bill on his behalf.

Oh yea, and if you have not already ordered an extra Health Savings Account card or Flex Spending Account card for your kid, you should get right on that.

We plan for the worst

Type 1 Diabetes teaches you to plan for the worst. We have had a rough ride with this brutal disease during our son’s teen years. Some close calls have taught us to always be prepared for the worst case scenario. Oh the stories we could tell…

We are just sharing what we learned so other parents can be prepared too.

Written by Anne Imber
published on 4/19/2017

Anne Imber is the mom to a Type 1 Diabetic son diagnosed in 2009. As the Founder of Type 1 To Go Teen, Anne shares her experiences with other Type 1 families regarding many of the non-medical issues that Type 1 Diabetic Teens face. The website www.Type1ToGo.com provides support materials from her presentations. Anne is also the Co-Founder of Cy Fair Type One Connection, a T1 School Advocacy & Support Group for one of the largest school districts in Texas.

This information provided for general use only.
It is not intended as medical and/or legal advice.
Always consult your doctor for medical advice.
All Rights Reserved. 

Suggested Type 1 To Go Pages
Turning 18
HIPAA

 

Type 1 To Go Tool
Turning 18 Checklist 

 

 

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Preparing for Kindergarten with Type 1 Diabetes

Preparing for Kindergarten with Type 1 Diabetes

Kindergarten with Type 1 Diabetes

Preparing for Kindergarten with Type 1 Diabetes

Preparing for Kindergarten with Type 1 Diabetes can be daunting. Not for the kid but for the parent! Remember, your child will assume that everything will be ok. It’s the parents that need a little reassurance!

Through our T1D school advocacy group, we recently hosted a “Preparing for Kindergarten with T1D” event. A member from our school district administration’s Student Health Services spoke and shared some tips for a smooth transition.

Here is is a recap of some of those tips with a few of our own!

Safety is a priority

Safety is a priority for all students but especially for Type 1 Diabetics. The laws for school nurses are actually written with the safety of the student in mind.

The Diabetes Medical Treatment Plan

On or before the first day of school, you will need to meet with the school nurse or clinic to establish your child’s Diabetes Medical Management Plan (DMTP).  Your school may also call it an Individualized Health Plan. No matter the name, this document will outline the procedure for treating your T1 student in the school setting.

This will be the most important thing you put in place for your child at school.
It is NOT a 504 Plan – the DMMP outlines medical treatment at school.

Schedule an appointment with the school nurse

At Kindergarten registration, you should meet your nurse and explain you have a Type 1 Diabetic student. Ask when she would prefer to get together before school starts in the Fall.  It varies for each nurse and campus. At the end of summer, just before school starts, this nurse/cinic meeting is when you will need to bring your student’s doctor’s orders and extra supplies.

Remember, nurses may only start the week before school starts. They may also be completing their own Back to School training. Setting an appointment will ensure you have the nurse’s complete attention for the paperwork.

Back to School Packet – Health Care Provider Orders

Your child’s endocrinologist will provide you with detailed written orders called Health Care Provider Orders.  These are for the school nurse to include in the DMMP. These orders are valid for one year at school. Most families receive them over the summer.

Review the Doctor’s Orders. Parents are NOT allowed to override these orders.You can however update them with your doctor.

  • Verify that they are correct.
  • Include all medical devices including cell phones
  • Make sure it notes the max distance share devices can be from the child.
  • For CGMs, it should also designate alarm parameters.
  • Include the use of Wi-Fi if needed.
  • Review the list of items on these orders that you need to provide the school.

Note: The school will not be providing low blood sugar snacks or Ketone strips.

The 504 Plan comes later

You do NOT need a 504 Plan on the very first day of school for a Kindergarten student. You do need the Diabetes Medical Treatment Plan. They are two different things.

Did the school say “No” to a 504 Plan?

It will help if you understand the following about 504 Plans:

It is a more complex and longer process because it involves more school staff. The Individual with Disabilities Education Act actually requires school districts to do an  evaluation process to determine if a child may need other learning accommodations at the same time. It will involve the nurse, 504 Coordinator and the teacher and there is lots of paperwork involved even for you!

 

Did they mean “Not Now?”

“No” may just mean “Not now”. Back to School time is CRAZY for all school staff. A 504 Plan should be purposeful and individualized. It requires HOMEWORK.

The evaluation, paperwork, process and meetings all take time. Be patient. Many families do not even implement their 504 Plans until 2nd grade in preparation for standardized testing.

So breathe – the 504 comes later.

Your student will still be covered for all their medical care with the
Health Plan/DMTP you put in place with the school nurse/clinic

 

Start stocking up!

Start stocking up on extra supplies – Glucagon, meters, test strips, insulin, Ketone strips, back up insulin pens/needles, infusion sets, batteries etc. Make sure your endocrinologist knows you need EXTRA supplies for school so they can write prescriptions accordingly.

Spring stocking! Start in the Spring so that you have the extra supplies you need by Fall. Plus it spreads out the cost over a longer period of time.

You may find a sheet like this in your
Health Care Provider Orders/Back to School Packet.

 

Create supply boxes

In addition to medical supplies, you will need low blood sugar treats/juices. All of this can go in one box for the clinic.
Provide your students supplies in a container with the name on it. A refillable water bottle will also come in handy.

You will want to create some extra classroom snack boxes too for Lockdown Emergencies. You can ask your nurse for the school plan on Lock Downs when you create your child’s Diabetes Medical Treatment Plan. 

Bus transportation

If you plan for your Kindergarten student to ride the bus, notify the nurse in advance. For extra precaution, you should also notify transportation services. The school district will provide a handout and  training to the bus driver regarding the student’s condition. It is important to communicate with your school district if your T1D Kindergarten student will ride the bus.

 School lunches

For school lunches you should plan to provide the carbs on each item when you prepare the lunch. The school nurse can’t be expected to determine carbohydrates on items prepared and brought from home. Labeling each item individually allows adjustments to be made with picky eaters. The nurse will make insulin doses based on the day’s lunch.

Buying lunches at school is also an option. To ensure proper dosing, plan to print the weekly lunch menu and obtain the carbs from the school website. You can involve your child in the process of deciding what they want to eat. By involving the child in the process, the student is more likely to eat the foods chosen.

Lunchtime is the busiest time for school nurses. These little tips will help with a smooth transition especially that first week of school.

 Important reminders

Since doctor’s orders will be written for your child, nurses are NOT legally allowed to deviate from those orders.
They are also NOT allowed to make changes to treatment based on a parent’s instructions. That’s a legal and a safety issue for our school nurses. If you understand that, it will eliminate some of the frustration that may occur.

If the doctor’s orders provided are not working, request changes to your doctor and resubmit them to the nurse. It is not unusual to make changes such as these. In fact, that will likely happen many times over the course of your student’s school career with Type 1 Diabetes.

Communication and collaboration

As the parent of a Type 1 Diabetic, you will have a great deal of communication with the school clinic. This will be an important relationship for your family. Try to start on the right foot by asking what you can do to help on your end.

A positive collaboration with your school nurse will make for a positive environment for your Type 1 Diabetic student.

Written by Anne Imber
published on 4/13/2017

Anne Imber is the mom to a Type 1 Diabetic son diagnosed in 2009. As the Founder of Type 1 To Go Teen, Anne shares her experiences with other Type 1 families regarding many of the non-medical issues that Type 1 Diabetic Teens face. The website www.Type1ToGo.com provides support materials from her presentations. Anne is also the Co-Founder of Cy Fair Type One Connection, a T1 School Advocacy & Support Group for one of the largest school districts in Texas.

This information provided for general use only.
It is not intended as medical and/or legal advice.
Always consult your doctor for medical advice.
All Rights Reserved. 

Suggest Type 1 To Go Pages

Get updates on T1ToGo Blogs and Events
Like our Facebook Page

Copyright © 2017 Type 1 To Go Resolutions. All Rights Reserved.
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