Distal renal tubular acidosis (dRTA) is a disease where the kidneys cannot effectively remove acids from the blood into the urine. dRTA can be inherited (primary dRTA) or be caused by another disorder or medication (secondary (acquired) dRTA). The primary, inherited form of primary dRTA is most commonly diagnosed in infants and children. The secondary (acquired) form of dRTA can happen at any age but is more commonly seen in adults.
Learning that your child has been diagnosed with primary distal renal tubular acidosis (dRTA) can bring on many emotions. Here are some practical ways to positively impact your child diagnosed with primary dRTA.
Learn about dRTA, treatments and explain it to your child
It is important to learn as much as you can about dRTA and treatment to help manage your child’s health.
- Don't try to explain more than your child can understand; however, you'd be surprised at how much even very young children may understand.
- Often times, children will accept information more easily than an adult.
- Encourage your child to ask questions and ensure them there is no such thing as a ‘dumb’ question.
- Let your child know that the goal of the healthcare team is to help them feel better.
- If your child has a needle fear, there are many practical tips for helping deal with this topic. The American Academy of Pediatrics offers the following tips
Keep up with all checkups
Make sure regular checkups are part of your child’s overall health, and make appointments as advised by your healthcare team. Let the doctor know if there are any new or sudden change in symptoms. Possible symptoms of dRTA can include the following:
- Confusion or decreased alertness
- Muscle weakness
- Breathing difficulties
- Increased heart rate or irregular heartbeat
- Muscle cramps and pain
- Pain in the back, sides or abdomen (known as flank pain)
- Bone pain
- Less urine output
- Difficulty hearing
Many parents find it helpful to write out all the details of their child's medical history, including dates and symptom onset. This is especially important when you come in contact with a new member of the healthcare team. You can also keep a log book of your child’s treatments, lab results, appointments, or any other information about your child’s overall health. You can take the book along to your appointments so you can discuss changes or new instructions with your healthcare team. Speak to a healthcare professional about access to your child’s lab results.
You can help your child understand about doctor’s offices, laboratories and medical tests. By helping your child understand the places that are filled with strange instruments and machines, you may help eliminate a lot of your child's fear.
Use medications properly
If your child needs to take certain medications, it is important to stick to their medication schedule.
- Read medication labels, and make sure they do not take more than the amount stated on the label, or more than their doctor or pharmacist recommends.
- Avoid prolonged use (longer than stated on the label or recommended).
- Drinking enough water with medication is also important.
- Be sure to let your healthcare team know about any medication side effects.
It is important to speak to your pediatrician before giving any new medicines to your child. For example, overuse of certain over-the-counter pain medicines may be harmful to the kidneys.
Finally, a matter-of-fact attitude is your best weapon in getting your child to take medication. If your child has difficulty swallowing medication, talk to your pharmacist about helpful ways to work through this.
Maintain a healthy diet for your child and help them understand any diet restrictions
Even a child as young as 2 or 3 can understand about "diet" if it is explained simply. Often, the child will be more compliant with dietary restrictions than an adult will. When visiting a dietician, you can have your child make a list of favorite foods to see if these can be incorporated into the diet plan.
Serving water instead of sugary drinks is a good way to cut down on sugar. Water is very important for good kidney health and helps the kidneys remove wastes from the blood in the form of urine. Having enough water to prevent dehydration is important, especially for children. You should check with your healthcare team to find out how much water your child should drink each day.
- It is important to follow any dietary recommendation made by the healthcare team.
- It is important to reinforce a healthy diet and good nutrition.
- Prepare meals that are the appropriate portion size.
Finally, one of the most important influences of a child’s behavior is the lifestyle choices that parents make. Children can learn healthy habits from their parents that can last a lifetime, and many of these habits can have a positive impact on their long-term health. Teaching your child how to eat better and get more physical activity, while they are young, can help them live a healthier lifestyle throughout their life.
Ask about special accommodations for your child at school
A disease such as primary dRTA may pose challenges in school. If these challenges are not addressed, you should speak with your healthcare team and school nurse if you need a letter that outlines key aspects of the medical needs for your child. The letter should address the following:
- What is dRTA
- Possible complications of dRTA
- Accommodations for academic education
- Accommodations for physical education
- Dietary accommodations if the child eats the food offered in the school cafeteria
- Medications that might need to need to be taken during the school day
- Possible missed school days due to medical appointments
- Instructions for the school if the child experiences certain symptoms during school
You should also ask your healthcare team and school if your child needs a 504 or IEP (individualized education program) plan to assist with academic needs for your child. These are programs to ensure that a child with a disability or illness attending an elementary or secondary school receives accommodations to support their academic and medical needs.
Share your experience and ask others for help
Do not be afraid to tell others what you are feeling and to ask for help and support when needed. Chances are they want to offer support and are just waiting for you to ask.
Different kinds of people can provide emotional support. They can be family and friends, a co-worker, a spiritual mentor or members of your healthcare team.
You can talk with other families of children living with dRTA. They can share their experiences and offer advice from a shared perspective (also known as peer support). You can ask your healthcare team for help finding peer support or contact an organization such as the National Kidney Foundation 855.NKF.CARES (855.653.2273), or firstname.lastname@example.org).