(AGES 12 TO 17 YEARS)
The teenage years can be tough. Your teens are coming into themselves, fighting to create a sense of identity. And while their experience with Classic Galactosemia is only one aspect of that, it can have a long-lasting impact. Teens with Galactosemia can struggle with social issues or mental health as a result of their condition. So, as your child enters their teen years, there are certain symptoms of Galactosemia that you can look out for.
Puberty and fertility issues While puberty delays can affect children as young as 8, some female children may need puberty inducement (such as hormone therapy) in their teen years. They may also need to monitor menstrual cycles for symptoms of primary ovarian insufficiency, or POI. Male teens with Galactosemia can also experience delays in puberty.
Growth delays Many teens with Galactosemia may experience delays in physical growth, meaning they may not reach the typical height of their peers by adulthood. While some variety in growth is normal for all children, your teen may feel self-conscious about height or other developmental delays.
Anxiety and depression People with Galactosemia experience anxiety and depression more frequently than their peers. Symptoms of anxiety are varied, but include irritability, restlessness, lack of concentration, unwanted thoughts, insomnia, and excessive worry or fear.
Social issues These can range from autism spectrum disorders to complications from anxiety. For teens with Galactosemia, symptoms of social issues can result in struggling to create relationships with others or difficulty staying positive.
Learning difficulties Complications that children experience early in life may persist into their teen years. Knowing your child's strengths and struggles when it comes to learning can help them prepare for school.
What monitoring may be appropriate for my teenager?
12 to 17 years
Neuropsychological assessment for executive function
This series of standardized tests can continue to help you and your teen's doctor understand how your teenager's brain processes information, solves problems, makes decisions, and regulates their thoughts and feelings.
Additional psychological and cognitive testing
These tests continue to assess your teenager's mental wellness, from monitoring for signs of anxiety to testing their cognitive (learning, processing, and understanding) development.
Bone density screening
Once screening starts at age 8, your child's doctor will likely continue to monitor the amount of important minerals in his/her bones every year. After puberty, bone density screening is typically performed once every 5 years.
Hormone testing (for females)
As your daughter goes through puberty, her doctor will likely perform blood tests that check the amount of estrogen hormones.
Know Your Healthcare Team
This doctor specializes in female healthcare. They can help your daughter navigate her changing body and help perform assessments for primary ovarian insufficiency or reduced hormone activity.
These experts specialize in metabolic disorders. They help to coordinate the right care for your teen with Galactosemia.
Your dietitian can offer lifelong advice on your teen's Galactosemia-friendly diet. For your teenager, the dietitian can work with both of you to make sure your teen can navigate their diet choices more independently.
While your teen is still in school, their pediatrician may still play a large role in their care and management of their condition.
If your teen continues to have vision problems or develops them over time, an ophthalmologist can perform necessary tests, including identifying potential cataract formation, to provide the vision care they may need.
A seamless transition
Talk with your teen's pediatrician about when it might be time to transfer to a family practice doctor.
Just like you had to learn the ins and outs of a Galactosemia-friendly diet, your growing child has the same opportunity to take charge of their diet. While every teenager has a different capacity to handle responsibility, there are some general guidelines you can follow to make sure they are ready to successfully manage their own diet.
Reading food labels
Share what you know about reading food labels. If you're not sure where to start, you can find more information here.
Choosing the right foods
Your teen likely already knows how to identify and politely turn down foods, but as they get older it may be helpful to let them start proactively choosing their own foods (for example, ordering for themselves at the restaurant, or doing research on what they plan to eat before going out with friends).
Learning cooking basics
If your teen is capable of helping in the kitchen, now is a great time to help them understand some cooking basics.
Keep busy. Participate in everything! Just keep recommended snacks and/or meals with you at all times. Don't miss life because of your inability to eat dairy! Sharon H. | patient
Galactosemia doesn't define my son, but it is a part of who he is and impacts our daily lives. Tara T. | caregiver