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How you can help your child with PH
For kids, there may be unique challenges to adjusting to life with PH. There are obvious ways that your child might need your help: staying on top of their hyperhydration, managing their appointments, or comforting them after a kidney stone procedure. Being a parent of a child with PH can mean supporting them in many different ways.
Work with your healthcare provider to figure out age-appropriate answers to your child’s questions about PH and help them understand that PH is a part of what makes them unique.
10 ways to help kids drink more water
Put water within reach with a step stool near the sink and cups on the counter
Try fun straws to encourage children to consume more water
Infuse water with fruits or vegetables or try water enhancer drops to add flavor without sugar
Place a water bottle in every room
Replenish water bottles frequently while keeping track of total ounces
Teach your children to fill up their own water bottle
Allow children to choose water bottles with their favorite characters or colors
Use smart water bottles to track fluid intake and set daily goals
Use a reminder system (such as written reminders, alarms, or triggers, like always drinking at the start of class)
Ask other adults, like your child’s teacher, coach, or babysitter, to help with reminders
Want a downloadable hyperhydration guide for kids?
"Expecting a 4-year-old who is only awake roughly 11 hours per day to drink 2 liters of water is virtually impossible. It’s especially hard at school, where he’s not drinking nearly as often or as much as necessary.”
– Mother of 4-year-old with PH3
How does hyperhydration work in infants and small children? Infants and small children who struggle to drink enough water may need a gastrostomy tube, also known as a G-tube. Talk to your child’s healthcare provider to determine if a G-tube may be necessary.
Tips for bed-wetting
With all that extra water your child has to drink, sometimes bed-wetting can be a challenge. Here are some tips to help:
Routine bathroom stops
Make going to the bathroom right before bedtime part of the nightly routine.
Superabsorbent training pants
Training pants designed for sleeping can help protect against leaks that wet the bed and interrupt your child’s sleep.
Bed-wetting alarms
These devices may be inserted into pajamas or bedding, where they sound an alarm as soon as they detect moisture. The alarm alerts the child to wake up and go to the bathroom.
Waterproof sheets and a change of clothes
Layer a waterproof sheet over the mattress, then a regular sheet and a blanket. For easier changes in the middle of the night, repeat those layers again and keep some fresh pajamas or disposable underwear nearby. Then you or your child can strip off the wet clothes and bedding and quickly get into dry replacements.
Bathroom breaks and 504 plans
Drinking enough water can certainly be a challenge for children, but so can dealing with all the necessary bathroom breaks. A 504 plan can help make it easier for kids to get the accommodations they need to succeed in school.
A 504 plan requires any US school that receives federal funding to accommodate the needs of any child with a physical or a mental impairment that affects major life activities. For kids with PH, accommodations might include excused bathroom breaks or trips to the drinking fountain. A 504 plan is unique to each child’s situation.
How to request a 504 plan for a child with PH
Document your child’s needs and evidence of a disability
Include any records of a medical diagnosis. Under Section 504, an individual with a disability is defined as a person who: (1) has a physical or a mental impairment that greatly limits a major life activity, and (2) has a record of this impairment or is regarded as having this impairment. Under this law, major bodily functions are considered major life activities.
Contact the school’s 504 coordinator
The school’s 504 coordinator may also be the individualized educational program (IEP) coordinator. You can usually find the coordinator’s name and contact information on the school’s website, but if you can’t, reach out to the principal for assistance.
Make a formal written request for a 504 plan
In your request, be specific about why you’re asking for the plan. For example, you might say: “I would like a 504 plan for my child who has a genetic disease called primary hyperoxaluria. As a consequence of this condition, he/she needs frequent bathroom and water breaks throughout the day.”
Work with the school on a plan
After your request is approved, team up with the school to create a 504 plan for your child.
Visit Understood.org or the US Department of Education website for more information on 504 plans.
Your child has a right to accommodations that allow them to learn like their peers. For guidance on how to dispute your child’s 504 plan or how it is implemented, learn about the steps you can take. You can also contact the US Department of Education Office of Civil Rights to file a complaint.
To inform school staff of your child’s needs and enlist their support, download our School Discussion Guide below. It answers commonly asked questions and includes points to emphasize to teachers and class aides about your child’s hyperhydration needs to help your child succeed at school.
Keep it all organized
Keep contact information for healthcare providers and other essential PH information organized and readily available. Try putting it all on a single document that you keep on your fridge or desk, or take a picture with your phone so you can access it anywhere. You can also share a copy with your child’s school.
Most healthcare providers offer an online platform to access important health information and test results, such as an access portal. Just ask your provider about which tool they offer and sign up for it.
Get updates
Get email updates on PH treatments and news. You can also receive resources that may help you or your loved one manage PH.
Preparing for your next appointment
Find tips for preparing for an effective appointment and a Discussion Guide for talking with your doctor.
