Your Kids, DI, and Schools
Preparing for the Worst, and Hoping for the Best
By Jackie Duda

Schools have come a long way in accommodating students with disabilities or medical conditions. Meetings, individual education plans (IEPs) and specialized staff members can help your children work well within the "mainstream," but in this age of terrorism alerts and the threat of several-day-long lockdowns, is this enough? While most teachers and administrators are accustomed to dealing with asthmatic students or those who suffer from epileptic seizures; diabetes insipidus can leave some completely mystified or perhaps even a little skeptical. This is uncharted territory for some school officials, who may even confuse the affliction with insulin dependent diabetes (more commonly known as sugar diabetes). So how can a parent most effectively communicate their child's most basic need of endless water and bathroom privileges infinitum?

Be Open, Frank and Detailed...
Sabrina DuBois De Filippis, of Gaithersburg, MD, offers some sage advice, "Make friends with your child's teachers, get them on your side and you're usually good to go," she said. "Get a medic alert [bracelet] for your child and keep it up-to-date...be frank when discussing the risks, but emphasize that the condition is manageable." Her son Nick was diagnosed with DI at age five and now attends middle school in Montgomery County. Initially theorizing upon a variety of diagnoses, from severe allergic reactions to juvenile rheumatoid arthritis, a CAT scan revealed a large brain tumor that necessitated almost immediate removal.

Although Nick came through the surgery with "flying colors," he was left with a completely devastated pituitary gland and diminished vision. Since his pituitary is gone, Nick produces zero hormones. "This means, for instance, that he is at risk to go into shock if he is badly hurt and his dose of cortisol is not increased. He must also replace the thyroid hormone, the growth hormone, and use dDAVP to help him retain water," De Filippis said.

De Filippis recommends several fact sheets that helped her immensely. "We called up a huge number of articles on Medline, and pulled from the National Library of Medicine at the National Institute of Health (NIH). The medical jargon can be daunting, but a good medical dictionary will help in the translation. The NIH sheet is a straight download...and the very best resource for parents of children with panhypopituitarism is the MAGIC Foundation (www.magicfoundation.org), which took us years to find," she said. Another excellent source of information about diabetes insipidus is "Diabetes Insipidus" fact sheet available from the National Kidney and Urologic Diseases Information Clearinghouse. To find the fact sheet online, go to www.niddk.nih.gov and click on "Health Information."

The middle school Nick attends administers his lunchtime dose of Cortef in the form of a pill. "From the very start, we prepared a fact sheet on Nick for his teachers, summarizing the medical history an EMT or ER would need to know and explaining the relevance to the classroom, in detail. We do try to make it brief and non-frightening," De Filippis said. She actually did a classroom presentation in elementary school, explaining to Nick's classmates why he had to keep a water bottle on his desk, and why he couldn't trade food with them. "That helped enormously, although Nick would often choose to be absent that day," she conceded.

In middle school, De Filippis informed the teachers, but not the students, for fear that he would be teased. Moreover, Nick would prefer they not emphasize his differences at all.

De Filippis had volunteered a great deal in Nick's elementary school classroom or the school library, always carrying emergency medications and assuring that the school nurse knew where to find her. "This is probably the easiest way to handle the situation, but it's not for everyone of course," she says.

Middle school, however, has been a different story. "We offered to bring in a nurse to train the school health technician to administer the emergency IM shot and also offered to train the teachers and staff. The school originally refused to keep the emergency medication on grounds until our endocrinologist wrote a letter stating that they were endangering Nick's life by their refusal to do so," De Filippis said. The underlying issue was embedded in Montgomery County Public Schools regulations-only a nurse may give an IM injection or any shot that needs to be drawn. Under federal law, Nick's parents had two other options, find a nurse to cover, or transfer Nick to a school that had a full-time RN. "Under federal law," she says, "the school has the right to transfer students if that particular facility cannot meet your child's needs, so parents need to be aware of this if they push too hard."

Don't Wait till the School Year has Begun!
The De Filippis ended up drawing up an "emergency plan" containing all relevant medical history, plus a notarized release form for both EMT's and school personnel, authorizing them to administer the critical IM shot. "The nurse simply presented this as 'her' plan. While not quite what I expected, the plan was exactly what we had wanted. I would recommend drawing up your own plan. The key is to meet with teachers and administrators before school starts," she recommended. "Emphasize that you are available for questions and concerns, encourage staff to call or e-mail often, and reinforce the fact that you wish to work with them on your child's medical issues. If you are supportive of the teachers, they will go a long way toward making your child's life easier...most of Nick's teachers, for example, have pre-arranged a hand signal he can give when he needs to go to the bathroom, so he doesn't have to interrupt verbally to get permission."

For extreme, unexpected situations, such as "lockdowns" or terrorism alerts, Nick's parents ensure that the school has a two-day supply of his regular medication on hand, except the growth hormone, complete with doctor's orders. The De Filippis have equipped each of Nick's classrooms with individual bottled water. "In reality though," she said, "They would probably just call us to come get him."

Nick's parents attend all field trips and carry emergency medications with them. In the case of sports, which Nick doesn't currently play, the coaches would have to agree to carry the medications and administer the IM shot in their absence. Since lawsuits can be prevalent, another notarized release form, signed by both parents, would also be in order.

Keeping Teachers Informed
Criss Barin, from Ashville, North Carolina, has a high-school age son, Noah, who was diagnosed with DI in the fifth grade through a water deprivation test, after doctors had run through a gamut of medical diagnoses, including obsessive compulsive disorder.

"Every year, I send a note to his teachers, introducing them to Noah and educating them about DI. I always emphasize in the letter that this is not DM [diabetes mellitus], and go into detail outlining the differences," she said. Barin has found teachers to be very responsive to the letter; she also follows up with a phone call.

She has also searched the Internet for appropriate fact sheets, written in laymen's terms. "I don't expect high school teachers to be familiar with endocrine jargon," she said. She looks for sheets that are clear and concise, using bulleted statements for easier reading and has even developed some of her own, specific to Noah and his condition. "The main thing I emphasize is that he is never to be denied the privilege to go to the bathroom. When some teachers have reservations that this may be 'abused,' I simply tell them to call me if they feel this is occurring, but he is not to be denied the ability to go," she said.

Barin has also requested that Noah be permitted to carry a water bottle with him at all times, to help him cope with a breakthrough. She also expounds on Noah's other interests, skateboarding, and playing the viola. "He also sings... he's a typical teenager. I don't want them to look at him as the kid with an unusual diagnosis; instead, I want them to see Noah and all of his wonderful strengths and potential," she said.

As with De Filippis, Barin also found schools not quite so accommodating when it comes to medication. A student health center exists on campus, but it is not always open, or the nurse may not always be available. "School policy dictates that all prescription medications must be kept with the school nurse, so if Noah is having a breakthrough and the nurse isn't available, I have to leave work and bring a dose of dDAVP," she said.

Barin noted that Noah's medication is kept at the school, but nothing further has been planned for emergencies. She has educated his teachers concerning sodium levels, and informed them of particular symptoms, such as headache, lethargy, and listlessness that would necessitate calling the nurse or Barin herself, immediately.

Educating Noah's Jr. ROTC instructors has also proven invaluable. Barin made herself available for questions and noted that Noah's accommodations were indeed met.

"I think my biggest fear has been that someone would deny Noah the chance to go to the restroom and that he would urinate on himself...it's a nightmare for me to even think of the possibility that Noah's dignity would be compromised," she said. "Approach your child's teachers as if you are all on the same team, don't go in expecting them to be automatically receptive, and most certainly, don't charge in on the automatic defensive. Assert yourself, but do not become aggressive; if you feel as though you're not being heard, take someone with you who can help you remain calm as you advocate for your child."

Barin encourages parents to become familiar with the ADA Section 504, which makes provisions for children with medical conditions. A 504 plan may come in handy if your child's school has a strict attendance policy; read the school's handbook beforehand and familiarize yourself with current policies and guidelines. "Parents also need to be aware of their own feelings about school, some are comfortable talking with their child's teachers, while others may have had a bad experience in the school that they attended, and therefore shy away. It's important for parents to be aware of their own abilities to be able to assert themselves in a positive way for their child's sake," she explained.

A Physician's Note Can Go a Long Way
Sharon LeBlond's daughter, Elizabeth, never drank from a bottle, except when offered water. So this Cincinnati, Ohio mom breastfed her infant until she was 14 months old. A water balance test conducted at ages four, five and six indicated that Elizabeth had passed with the lowest acceptable score and her parents were subsequently told that her problem was behavioral. Always hypotonic, an MRI at five months of age never indicated a problem, and Elizabeth's working diagnosis was mild hypotonic cerebral palsy.

Elizabeth began falling off the growth charts at age two and a subsequent MRI revealed a tiny germinoma tumor on her pituitary gland. She had chemo and radiation post surgery and a year later, began taking growth hormone, as well as Cortef and Synthroid, which is also kept at her elementary school. LeBlond says that they also store SoluCortef for emergencies and several staff members are trained to administer the medication in her absence.

"DDVAP controls her DI most of the time," LeBlond said. "But school personnel also know that she is not to be restricted from water or bathrooms. Elizabeth plays many sports with no problem...we just take note of bathroom locations along the way."

LeBlond has a letter from Elizabeth's doctor, stating that she requires unrestricted access to water and bathrooms. "I do not allow school personnel to second guess that, unrestricted. We've had few question it since we are very 'up front' about that fact, and we stand firm," she explained.

A Word from the Schools
Frederick County Maryland Public Schools (FCPS) Health Specialist, Helen Monk, recently attended an all day training session that discussed crisis management for all types of situations, creating awareness and providing a format for schools to develop their own individual plans in regard to students' safety and those with chronic medical conditions. The session's main focus was underscored by a representative from FEMA.

"We talked about installing a crisis management manager and a logistics person; it's going to be quite valuable for our schools. The crisis response will send a team of people to assist schools, dependent upon the type of emergency," Monk said. We are also articulating plans with emergency people within the school communities, developing a relationship with them to coordinate the best possible response. Whether it's a natural disaster, sniper in the building, act of terrorism, or any of the numerous things that can occur, the response will essentially be the same to keep students safe and address their health issues."

In the case of a child's special medical requirements, Monk advises open communication between parents and schools, so staff can be made aware of his or her individual medical needs, whether it's snacks for people with diabetes mellitus or water for children with DI. Monk also spoke with Dan Cunningham, FCPS Associate Superintendent, who in turn has talked with the Frederick County Sheriff's Office, regarding emergency lockdowns. Cunningham stated that the plan is to ask schools to store food for an eight-hour period; schools foresee having sufficient food and drink available for that time period. However, space is a major issue, as buildings simply cannot store items meant for longer periods of time.

"Individual schools should be made aware of a child's medical needs, so they can properly respond and know how to handle a student's condition. And whoever is in charge of the building in the event of an emergency would have to ensure that this occurs, for example, so that children with DI can reach a bathroom or obtain water, if needed," Monk said.

"The most extreme emergency situation would result in a total lockdown, where parents could not enter the building. Precautionary lockdowns indicate that the parents can enter the school, with the proper I.D., as school administrators will monitor those going in and out," she noted.

"A lockdown means that students can move within the building itself, accompanied by an adult, so they usually aren't restricted to one room or area," Monk added. "FCPS is in the process of planning our emergency responses, which is indeed a step forward, to be prepared."

Many schools will allow parents to prepare an "emergency shoebox" for children with special needs, such as children with DI. Jody Vilschick, after calls to the principal of her six-year-old son's elementary school in Howard County, MD, arranged to send in a three-day supply of low and no-sodium food and medications (with detailed instructions) in the event of a lock down. Her son, Eli, was diagnosed with nephogenic DI at the age of five weeks. "I was told in such an emergency, the students would be given food from the cafeteria-so high in sodium and without his medications, he would dehydrate quickly," she said. "I had to convince school administrators to make a special exception for my son, and they said that as long as I could get everything to fit within a shoebox I could do it." After much experimentation, Vilschick discovered that low-sodium peanut butter and low-sodium Ritz crackers fit easily in a shoebox. "I still worry about his getting enough water in an emergency-my son can drink a gallon and a half, and that's when he's taking his medications and on a low-sodium [less than 600 mg/sodium/day] diet," she said. "But I've done everything I possibly can to ensure his well-being."

And being prepared is becoming familiar territory to parents, especially those with children affected by DI. Communication between parents and schools is essential in educating your child's teachers and school administrators about DI. Be sure they do not confuse the condition with DM, and keep everyone involved with your child, from the English teacher to the basketball coach, informed about the main issues vital to your child's optimum health and well being, adequate water supply, proper medications, and the ability to go to the bathroom whenever necessary. Be assertive, remain calm, and be your child's best advocate.

A former public school teacher, Jackie Duda is a writer and editor living in Monrovia, Maryland.