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When your child is diagnosed with PKU

Today, a child who has PKU can grow up happy and healthy. But it was not that long ago that a diagnosis of PKU meant a life of severe mental retardation and behavior problems.1 By keeping your child on a careful treatment program of Phe control, you can protect his or her brain, and avoid the terrible outcomes of uncontrolled PKU.2

People with PKU lack an important enzyme in their bodies. The enzyme breaks down an amino acid called "phenylalanine," or "Phe" for short, into other chemicals the body needs. Without it, Phe builds up in the blood.1

Phe is toxic to the brain.2 In babies and children, too much Phe causes brain damage that cannot be repaired.1 As your child grows older, the risk of brain damage is less.2 But high Phe can still cause other problems like lower intelligence, depression, anxiety, problems focusing, and problems getting along with others.1,3,4,5,6

You are in charge of your child's healthy growth

As the parent of a child with PKU, you will need to learn how to keep your child's Phe low every day. You'll learn what your child can and can't eat safely. You'll take care of making low Phe foods, and finding Phe-free formula to supply needed foods. If your child takes medication to lower Phe, you'll make sure they take the right amount at the right times. Taking these steps will protect your child's growing brain.

It can seem like a lot at times. But thousands of parents just like you deal with the same issues every day. There is a lot of support and many resources to help. Register and join the PKUniverse community now. Follow a blogger in the PKUniverse who is dealing with these issues.

In people living with PKU, high Phe levels can cause mood problems including depression.6

It may be depression if you have many of the following symptoms:8

  • Overall sad mood, state of worry and/or feeling "empty"
  • Not wanting to do the activities you like, or enjoying them when you do
  • Being hungry all the time, or not at all. Losing weight without meaning to, or gaining a lot of weight very fast.
  • Trouble sleeping or sleeping too much
  • Feeling tired all the time
  • Body movements or actions you are not aware of
  • Feeling worthless or not having hope
  • Inability to focus or make decisions
  • Not wanting to live
    (If you have thoughts about not wanting to live, contact a doctor right away)

High Phe may be causing you to feel this way. If you suspect depression, talk with a doctor or therapist.6

High Phe levels can cause a range of mood problems including social anxiety.6

Here are common symptoms of social anxiety:8

  • Fear of doing something that will be embarrassing
  • Fear that other people are judging you
  • Not doing activities because of anxiety
  • Anxiety and stress when doing something
  • Panic attacks — sudden and strong fear that happens without warning and causes body symptoms like blushing, heart pounding, sweating, stomach ache, and trembling

High Phe may be causing you to feel this way.6,9 If you suspect social anxiety, talk with a doctor or therapist.6

High Phe levels can cause a range of mood problems including "panic disorder."6,9

Panic disorder is when you often have panic attacks, or worry about having panic attacks, or avoid events or places because you're afraid of having a panic attack.

A panic attack is a strong, sudden fear that has body symptoms such as:8

  • Strong or fast heartbeat
  • Sweating
  • Trembling or shaking
  • Hard time breathing
  • Choking
  • Chest pain
  • Upset stomach
  • Being dizzy or faint
  • Feeling "unreal" or detached
  • Fear of losing control or going crazy
  • Tingling or numbness
  • Chills or hot flushes
  • Fear of dying

Symptoms of a panic attack are usually strongest in the first 10 minutes. People who have had a panic attack in one kind of place (like a crowded room, or elevator, or bridge) may come to fear that kind of place and avoid it.8

If you have frequent panic attacks and think you might have panic disorder it may be caused by high Phe. You should talk with a doctor or therapist.6

High Phe can cause a range of mood problems including agoraphobia.9

Studies show people with PKU are more likely to be afraid of going out, for fear of having a panic attack or other problem in public. This is a condition known as agoraphobia.9

It may be agoraphobia if you:8

  • Worry about being in places where you would be unable to get away or get help if you were to have a panic attack or other problem
  • Avoid doing activities you would like to do because of this worry

If you are having symptoms of agoraphobia, it may be caused by high Phe. You should talk with a doctor or therapist.9

  • Symptoms of Depression
  • Social Anxiety Symptoms
  • Symptoms of a Panic Disorder
  • Agoraphobia Symptoms

Next: Keeping your child with PKU healthy