THE STORY OF ONE FAMILY'S JOURNEY WITH TYPE 1 DIABETES AND CELIAC DISEASE.
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School * 504 Plan

This 504 Plan has been a work in progress for a few years.  I suppose that won't be changing anytime soon, because I'm learning that each year brings new and unique challenges.  Feel free to copy and paste this document and tweak it to your Candy Heart's content!


Just as parents have done throughout the history of time, we must learn from each other's experiences.  Several decades ago, maps were created by the parents who have gone before us to help you and I navigate this difficult course today.  By giving and sharing information, we are paving the road for the 40 who are diagnosed tomorrow, and the next day, and the day after that....

With that in mind, PLEASE take a moment to contact me if you think of something important that I've left out.  I'm always interested in hearing other parent's tips and tricks for school success.  Your feedback is always welcome!

Thanks,
Wendy
candyheartsblog@gmail.com
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Here's a few links specific to sending diabetes to school....I've found this information very helpful in my 504 planning process:

Juvenile Diabetes Research Foundation (JDRF)
American Diabetes Association (ADA)
From the ADA -- YOUR State Laws, Regulations, and Policies

This is also an extremely helpful PDF pamphlet produced by NIH that can be easily e-mailed to school staff as an introduction to help familiarize them with the unique challenges specific to children with diabetes in the school environment.


This, this, and this are LOADED with helpful stuff from Reyna.  Do NOT miss her blog as you embark on the journey of sending diabetes to school! (Reyna, YOU are a (diabetes) BACK TO SCHOOL ROCKSTAR, MY FRIEND!!!!!!!!!)  UPDATE 8/11  -- This is an amazing post of awesome resources written by Reyna...bookmark it.

Heidi's LANYARD TAGS are BRILLIANT!  You MUST check them out!!!  And don't miss this document for your child's substitute teacher folder.

OVERVIEW:


__________ has Type I (Juvenile) Diabetes. This is a condition in which the pancreas is unable to make insulin. Without insulin, the body cannot convert glucose (sugar) into the energy a person needs. To compensate for the lack of natural insulin, she wears an insulin pump (Animas Ping). We use her insulin pump to administer the correct doses of insulin to match the carbohydrates in the food she eats (bolus) and the amount her body needs without food (basal rates).

__________ basal rates and boluses must be balanced with her meals, snacks, health, stress level, and physical activity. To consistently achieve this balance, she must check her blood glucose frequently. __________ will need to have her blood glucose levels checked every 2 -3 hours; including before lunch, before academic testing, whenever an adult suspects a blood glucose problem, and whenever she alerts someone that she feels her blood glucose is too low or too high.  It may also be necessary to check her blood glucose level before, during and/or after physical activity, especially in situations of prolonged exertion.


__________ target blood sugar range throughout the school day is 90 - 180.

While __________ is achieving independence in self-management of her diabetes, the adults who work with her will need to be supportive and understanding about the daily regimen.  At this time, she is unable to perform her diabetes care independently.  Her self-care needs will be integrated into the school day in an attempt to provide minimal interruptions of the learning environment. 

In addition to Type 1 Diabetes, __________ also has Celiac Disease.  Celiac Disease is a lifelong, digestive disorder.  Celiac Disease is NOT an allergy.  It is an autoimmune disorder.  When people with Celiac Disease eat foods that contain gluten, it creates an immune-mediated toxic reaction that causes damage to the small intestine and does not allow food to be properly absorbed. Even small amounts of gluten in foods can affect those with Celiac Disease and cause serious health problems. Damage can occur to the small bowel even when there are no symptoms present.  

Gluten is the common name for the proteins in specific grains that are harmful to persons with Celiac Disease. These proteins are found in ALL forms of wheat (including durum, semolina, spelt, kamut, einkorn and faro) and related grains rye, barley and triticale and MUST be completely eliminated.



COMMUNICATION AND SUPPLIES:

__________ parents must be contacted for any of the following reasons: her infusion set comes out (insulin pump no longer connected to her body), her pump alarms and cannot be remedied, her blood sugar is less than 60, her blood glucose exceeds 300, she has ketones in her urine, she becomes nauseated, or if she begins vomiting.

All school staff will be notified each year that __________ has diabetes and will be instructed on what to do in the event of a hypoglycemic episode.

If a concern arises regarding __________ health or academic progress, as affected by diabetes, there will be no hesitation to arrange a meeting among appropriate school personnel and parents.

Teacher's sub folder will contain information regarding __________ diabetes. This includes all specialty classes such as PE, Art, Music etc.

__________ parents will provide a note in her lunch box for daily communication with the school nurse. The note will include the carbohydrate amounts in __________ snack/lunch so the school nurse can calculate the appropriate amount to enter into __________ pump. At least one of __________ parents will always be available via telephone or e-mail.

__________ parents will send all supplies for her insulin pump, blood glucose monitoring, and ketone monitoring. They will provide juice boxes, gluten-free snacks, and Glucagon for treating hypoglycemia.

__________ will carry her diabetes supplies with her whenever she leaves the classroom.  This bag will include the remote meter and all testing supplies.  This bag will travel with __________ to and from school each day.

The nurse will notify __________ parents when supplies are getting low.

 SNACKS AND MEALS:

 __________ parents will provide juice boxes and gluten free snacks to be kept in the Health Office for treatment of hypoglycemia, class parties, and snack times.

__________ will be permitted enough time to finish her snacks and meals. She will require 10 minutes before her scheduled lunch time to go to the nurse for glucose monitoring and insulin administration.  After her insulin is administered, she will need to begin eating as soon as possible to prevent hypoglycemia.  She will require a minimum of 20 minutes to finish ALL of her lunch.

It is IMPERATIVE that __________ finish ALL of her lunch.  __________ lunch/snacks should NOT be cleaned up and thrown away until a school staff member confirms that __________ has eaten everything.  If she is resistant to finishing her meals/snacks, the school nurse or a parent should be contacted for assistance.
All school personnel will permit __________ to eat a snack wherever she is (including, but not limited to: classrooms, gym, auditorium, school grounds, field trips, and school bus) whenever necessary to treat, prevent, or follow a hypoglycemic episode.

__________ should not be excluded from class celebrations, including birthday and holiday parties.  __________ parents will provide a gluten-free alternative to be stored in the Health Office freezer for such events.  She will need to receive insulin for the carbohydrates in the item(s) she eats/drinks prior to consumption.  __________ parents should be advised whenever unanticipated/extra insulin is given.

Whenever possible, class celebrations should be scheduled around __________ routine care to allow for optimal blood glucose monitoring.    

__________ should NEVER be given food/drinks that contain gluten.  If an item is questionable, please contact a parent for further clarification.  To prevent cross-contamination issues, __________ food should always be placed on a clean plate/napkin and NEVER directly on a surface area that has come into contact with gluten.

Additionally, if __________ handles gluten containing items (play dough, pasta/cereal for stringing necklaces, etc.), she must wash her hands thoroughly (with special attention given to the areas under and around her fingernail beds) immediately following the activity.  It is preferred that __________ use gluten-free items during these activities whenever possible.

GLUCOSE AND KETONE MONITORING:

Whenever __________ comes to the nurse’s office her blood glucose must be tested, regardless of the reason for the visit.

At least two adults will be trained in blood glucose testing, pump operation, medication administration, and ketone testing. At least one trained adult will be available on school property or field trips to address __________ medical needs at all times.  Parents are happy to provide necessary training as requested by school staff.  It is the school’s responsibility to ensure staff is prepared to accommodate __________ needs.  In addition to recognition of a blood glucose problem and how to check __________ blood sugar, training should also include administration of medication, which involves knowing how to perform insulin boluses using __________ pump and knowing how to administer both insulin and Glucagon via injection in the event of a medical emergency.

When administering insulin, the current blood sugar and amount of “Insulin On Board” (IOB) should always be taken into consideration.  This information can be found at the top of the Status Screen-2 from both the insulin pump and the remote.  It can also be found on the final bolus delivery screen from both the insulin pump and the remote.  __________ pump will calculate the recommended dose using the IOB information, regardless of whether or not the IOB was given for a correction or carbohydrate bolus.  

__________ insulin pump should NEVER be disconnected for any reason without prior authorization from her parents.  __________’s insulin pump is waterproof.

__________’s insulin pump system includes a remote feature that should be used for all blood sugar checks and insulin administration.  The remote feature is NOT waterproof and should be protected from water at all times.  A back up meter will be kept in __________ supply bag to be used in the event of a pump-meter malfunction ONLY.

__________ requires assistance to understand what her glucose reading means.

__________ will need to have her blood glucose levels checked before lunch, before academic testing, whenever an adult suspects a blood glucose problem, and whenever she alerts someone that she feels her blood glucose is too low or too high.  It may also be necessary to check her blood glucose level before, during and after physical activity, especially in situations of prolonged exertion.

Urine ketones should be tested whenever __________ blood sugar is above 300.  If ketones are present, please contact parents. 

LOW BLOOD SUGAR (HYPOGLYCEMIA):

__________ may appear tired, hungry, confused, “spacey“, whiney, uncooperative, combative, off balance/difficulty walking, or even say something like “I’m low” when her blood sugar is low.

If __________ appears to have a low blood sugar, the nurse will be contacted IMMEDIATELY so that __________ blood glucose can be tested and treated as quickly as possible.  If it is not possible to check __________ blood glucose immediately, a juice box should be given under the assumption that her blood sugar is low.  Her blood glucose must be checked 10 - 15 minutes later to verify that it is over 100.  If it is over 300, please contact parents for further instructions.    

When low blood sugar is suspected, __________ must not be left alone.  In the event of suspected low blood sugar, with obvious warning signs, it is preferred that a trained staff member come to __________ to check her blood glucose and treat her whenever necessary. 

If the nurse is unable to come to ________, is essential that and adult (not a student) accompany __________ to the nurse for immediate medical attention when indicated.  

HIGH BLOOD SUGAR (HYPERGLYCEMIA):

__________ may feel thirsty, sluggish, hungry, have a headache, blurred vision, and/or need to urinate often when her blood glucose is high. 

Hyperglycemia (high blood sugar) should be monitored closely.  Whenever __________’s blood glucose is over 300, the nurse should also check for ketones using the urine ketone strips.

Lack of insulin supply, which can occur with a pump malfunction or an occlusion in the tubing or infusion site, may lead to diabetic ketoacidosis (DKA) within a few hours.    Diabetic ketoacidosis is an emergency medical condition that can be life-threatening if not treated promptly.

 WATER AND BATHROOM ACCESS:

__________ shall be permitted to have access to water at all times.

__________ shall be permitted to use the bathroom without restriction.

__________ teacher will notify her parents if drinking or bathroom frequency seems excessive.


FIELD TRIPS AND EXTRACURRICULAR ACTIVITIES

__________ will be permitted to participate in all field trips and extracurricular activities without restriction.

The teacher will notify __________ parents of field trip dates as early as possible.

Whenever possible, a parent will accompany  __________ on class field trips specifically to attend to her medical needs. If a parent is unable accompany __________ on a field trip, someone who is qualified to administer all diabetes related care will be provided by the school to accompany her.

DISCIPLINARY ACTION:

__________ behavior is often related to blood glucose levels. She can feel thirsty, sluggish, hungry and might have abdominal pain, a headache, blurred vision, or need to urinate often when her blood glucose is high.  She may appear tired, hungry, confused, “spacey”, whiney, uncooperative, combative, off balance/difficulty walking or say something like “I’m low” when it is low. 

If __________ behaves in a manner that is out of character (i.e. disrespectful/ belligerent/defiant, hard time staying in her seat, sleepy, lethargic), her blood glucose must immediately be taken.

__________ blood glucose level should fall within normal range (90 - 180) before disciplinary action is taken.  Additionally, she shall not be subject to disciplinary action for the first 60 minutes following a blood sugar problem, as it is possible that her recovery could take an extended amount of time.

TESTS AND CLASSROOM WORK:

__________ will have access to the school nurse and her diabetes supplies whenever necessary.

Blood glucose levels should fall within normal range (90-180) for optimal learning and testing of academic skills.  __________ should never be subject to testing (standardized or otherwise) if her blood sugar is less than 80 or greater than 300.


If __________ is affected by high or low blood glucose levels at the time of regular or standardized testing, she will be permitted to take the test at another time without penalty.

If __________ needs to take breaks to use the water fountain or bathroom, perform a blood glucose test, or treat hypoglycemia or hyperglycemia during a test, she will be given extra time to finish without penalty.

Similarly, if __________ needs to take breaks to use the water fountain or bathroom, perform a blood glucose test, or treat hypoglycemia or hyperglycemia during class, she will be given extra time to finish classroom work without penalty.


__________ will not be penalized for absences or tardiness required for medical appointments, illness, visits to the office, or time necessary to maintain blood glucose control.

This plan shall be reviewed and amended at the beginning of each school year or more often if necessary. 



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While I'm happy to share our experiences with what works, and what doesn't work, for the management of Type 1 Diabetes and Celiac Disease in our house, please do not mistake anything you read here for medical advice. Decisions regarding your/your child's health care should be made only with the assistance of your medical care team. Use any information from this blog at your own risk.