Anxiety and Depression in Parents of Fragile X Children

by Michael Tranfaglia, MD

As parents of children with Fragile X syndrome, we are all well aware of how stressful our jobs are; in addition, most of us understand that stress can cause a number of harmful effects. However, some common and serious medical disorders are often overlooked when we think about “stress-related conditions.” I am referring to Major Depression and Panic Disorder, two of the most common afflictions of mankind. There is a certain stigma attached to these illnesses, perhaps less true today than in the past, but definitely still present. This may be one reason why these conditions are not often addressed openly in the Fragile X community. Hopefully, this article will “destigmatize” the subject a bit, and get some beleaguered parents the help they need.

As parents of children with special needs, we are likely to be at a greater risk for developing Major Depression or Panic Disorder precisely because of this difficult role in which we find ourselves. It is important to remember that this is not the result of any weakness or personal failing; it’s not even a reflection of how well we are managing. Stress affects everyone, competent and incompetent alike. And unfortunately, more competent people often end up with more responsibility (and more stress) just because they are able.

This is the official term for what many people call melancholia, clinical depression, endogenous depression, or biological depression. It is not simply feeling blue for a little while. Major Depression is an incredibly common illness: recent studies estimate that nearly 25% of women in the US will develop at least one episode of Major Depression during the course of their lives; men suffer at about half that rate — still a hefty 10-12%. Much has been made of this 2 to 1 ratio, which seems to hold true around the world; current consensus holds that this is primarily a hormonal effect, and that men are simply more susceptible to other things (substance abuse and criminality, for example). Major Depression is also a potentially fatal illness: approximately 15% of sufferers eventually commit suicide. Others survive, but cannot function, and this is one of the leading causes of absenteeism and disability. Most disturbing is the finding that Major Depression significantly impairs the ability of parents to raise their children. Several studies have shown that children raised by depressed mothers are far more likely to suffer behavioral and emotional problems, even when genetic effects are accounted for.

These are the symptoms of Major Depression:
1. depressed or irritable mood most of the day, nearly every day (persistent dysphoria)
2. diminished interest or pleasure in most activities (anhedonia)
3. significant change in appetite or weight (either up or down)
4. insomnia or oversleeping nearly every day
5. physical restlessness (agitation) or slowing
6. fatigue or loss of energy nearly every day
7. constant feelings of worthlessness or guilt
8. decreased concentration or indecisiveness
9. recurrent thoughts of death or suicide

The presence of at least 5 of these symptoms for at least two weeks is diagnostic of Major Depression. Unfortunately, there is no blood test to confirm the diagnosis, and although there are numerous “biochemical markers” which have been discovered throughout the years, none of these is useful as a screening tool. Some medical conditions, like diabetes and hypothyroidism, may need to be ruled out. This is one of the most important reasons for anyone concerned about depression to start by seeing their primary care physician.

Just as many people with Major Depression are told “Everyone gets depressed now and then,” people with Panic Disorder are told “Everyone has anxiety.” However, most people don’t have panic attacks. Panic Disorder is a condition in which people experience recurrent, spontaneous panic attacks. It is difficult to convey the feeling of a panic attack to someone who has never had one, but it is defined as follows:

A period of intense fear developing abruptly and reaching a peak within 10 minutes, with at least 4 of these symptoms:

1. palpitations or pounding heart
2. sweating
3. trembling
4. shortness of breath or smothering
5. choking
6. chest pain
7. nausea or abdominal distress
8. feeling dizzy or faint
9. derealization or depersonalization (feeling detached from surroundings or oneself)
10. fear of losing control or going crazy
11. fear of dying
12. numbness or tingling
13. chills or hot flushes

These attacks feel quite “physical” and most people are convinced that this is a serious medical problem. They are right, but it’s not the usual problem like a heart attack or an ulcer. Many people even go to the emergency room with panic attacks, and although these are increasingly being recognized and treated appropriately, more often patients are simply given a pat on the back and told “Everything is fine.” But everything is not fine. Typically, the attacks continue, often becoming more and more frequent. Each one is a terrifying experience, and it is only normal human nature to do anything to avoid having another one; in most cases, people assume that something provoked the attack — being in an elevator or a large store or driving on the highway. They naturally avoid those situations, but the attacks continue (because they are actually happening more or less at random), so Panic Disorder sufferers often find their range of activities steadily shrinking, resulting in a secondary condition known as Agoraphobia (literally “fear of the marketplace”). In severe cases, people with Agoraphobia cannot leave their homes and sometimes they can’t even leave their beds.

Why mention both of these conditions together? One reason is that they occur together in many individuals; about half the people with Panic Disorder will eventually have an episode of Major Depression, and the same 2:1 female:male ratio applies to Panic Disorder. Another reason is that most cases of Panic Disorder respond to the same treatments used in depression, even if patients aren’t depressed at the time. Both conditions are thought to be stress-related, and both are thought to have significant genetic underpinnings. One way to conceptualize the interaction between an underlying genetic susceptibility and stress in the environment is through the “weak link hypothesis.” Basically, this states that enough stress will make just about anyone sick (something which has been well demonstrated by research), but that how you get sick is determined by what you are most vulnerable to (the weak link in the chain).

In fact, most people who become depressed or suffer from anxiety disorders have been through periods of extraordinary stress. This runs counter to the old notion of “reactive depression”, the idea that “anyone would be depressed in that situation”. We now know that this sort of stress is typical and that it does not mean that a discrete disorder should not be treated or that it will not respond to treatment. This is precisely the predicament many Fragile X parents find themselves in: they are overwhelmed by stresses which would probably affect anyone.

Part of this misconception about the nature of Major Depression and Panic Disorder arises from a fundamental misunderstanding of what stress is. The old school of thought stated that stress was primarily generated by loss, disappointment, or conflict. While these are certainly stressful, it is crucial to recognize that good things can be stressful, too. From a biological perspective, getting married is just as stressful as getting divorced and receiving a promotion is as stressful as being laid off. Change seems to be inherently stressful, whether good or bad.

Psychiatry is beginning to understand the biological basis of Major Depression and Panic Disorder, and it appears that stress hormones play a pivotal role. It seems that there is a normal mechanism in the brain for regulating moods and suppressing anxiety. This mechanism acts something like the automatic transmission in a car: under normal circumstances, our mood shifts automatically to suit the driving conditions. Many people like to think they are in control of this process, but there really is no manual override. Under prolonged stress, the transmission can get burned out and stuck in low gear. The transmission fluid in this analogy is a neurotransmitter called serotonin, and it’s probably no accident that most of the medications which treat depression and anxiety disorders enhance the actions of serotonin.

The best news of all is that Panic Disorder and Major Depression are just about the most treatable of all medical conditions. Many different treatment options exist and there is simply no way to review all of them here; however, a brief overview may be helpful.

Psychotherapy is a tried and true technique which is still an effective treatment for depression and anxiety disorders. However, there are many different types of psychotherapy, and many different types of professionals who do it; a choice can be difficult. The type of psychotherapy best established as an effective treatment for depression is cognitive therapy, a type of brief psychotherapy in which the numerous cognitive distortions and illogical thinking which accompany depression are directly confronted and overcome, often using “homework” assignments outside the therapy sessions. A similar technique, cognitive/behavioral therapy is the most effective form of psychotherapy for treating anxiety disorders; it typically blends writing assignments with actual excursions to confront avoided situations (like shopping malls or elevators). Unfortunately, only a tiny fraction of the psychotherapists currently practicing are well versed in these techniques; a referral from a friend or a support group is worth its weight in gold.

Interpersonal psychotherapy is another type of therapy which can be of benefit in treating depression (but probably not anxiety disorders); it focuses on problems in relationships as a cause of stress and depression, and seeks to improve function within relationships as a way of treating depression. Traditional psychodynamic psychotherapy may also be helpful, but this has been difficult to establish scientifically; it may also be a moot point, since few insurance companies will pay for this sort of long-term therapy, which effectively puts it beyond the means of the average person.

Whichever type of psychotherapy is chosen, it is advisable to keep a few general points in mind:

1. Set definite goals to resolve specific problems (symptoms)
2. Expect results in 8-10 sessions
3. Enlist those around you to objectively evaluate your progress; ask your spouse if there has been noticeable improvement
4. Be prepared to try another therapist if you are not making progress (don’t accept rationalizations for lack of progress, i.e. “this goes way back to childhood, we’ll need to work on this in more depth”)
5. An effective therapist is not necessarily the one you like the best
6. Therapy is not supposed to be fun, but it shouldn’t be torture either
7. Get a second opinion if things aren’t going well

Medications are the other mainstay of treatment for anxiety disorders and depression; the combination of antidepressant medication and appropriate psychotherapy has been shown over and over to be the most effective treatment for these conditions. The first-line treatment for depression and most anxiety disorders these day is a class of medications collectively referred to as selective serotonin reuptake inhibitors (SSRIs). Currently available from this class in the US are Prozac (fluoxetine), Zoloft (sertraline), Paxil (paroxetine), Celexa (or Lexapro — both citalopram), and Luvox (fluvoxamine). They all have the advantages of convenient, once-a-day dosing, a broad spectrum of activity in many different disorders, and great safety (they are not toxic at any dose). Their major disadvantage is that they are expensive, but generic equivalents (at least for Prozac, Paxil, and Luvox) have recently become available. They share many of the same side effects: common nausea or heartburn, occasional jitters or insomnia, and frequent sexual dysfunction. Fortunately, most of these side effects subside quickly as the body adjusts to the presence of the drug.

Older antidepressants are still used and can still be quite effective. The tricyclic antidepressants (TCAs) most commonly prescribed are imipramine, desipramine, amitriptyline, and nortriptyline. All are available in generic form, which is quite economical. They have significantly greater side effects than SSRIs, but they are different side effects, which might be easier for a given individual to tolerate. They usually cause dry mouth, sedation, constipation, and some dizziness; in addition, these medications are very toxic in overdose, and should always be kept away from children. TCAs are just as effective as SSRIs in treating Major Depression and Panic Disorder, though they are much less effective for some other conditions such as Obsessive-Compulsive Disorder or Eating Disorders, for which SSRIs are the treatment of choice.

Two newer antidepressants, Effexor (venlafaxine) and Serzone (nefazodone), do not fit neatly into any class, but share many of the features of the other newer antidpressants. The major difference is that both require 2-3 time daily dosing, so they are somewhat less convenient. There are still other types of antidepressant medications too numerous to list. Ask your doctor for written information about the medication he prescribes for you; it is impossible to remember all the complex information relayed during an office visit.

Anti-anxiety medications (minor tranquilizers) are often used together with antidepressants for quicker relief of symptoms such as insomnia and restlessness. While some people find them useful, they are not adequate treatment for Major Depression by themselves. Some people with Panic Disorder (and without depression) find that this type of medication alone can prevent panic attacks and allow them to function normally; however, relatively high doses are required for this purpose. The antidepressants are generally considered superior in the long run, especially since they prevent the occurrence of depression (something to which people with Panic Disorder are highly susceptible).

Some general considerations when taking these medications for anxiety and depression:

1. Make sure you understand how the medication should be taken.
2. Know who to call if there are problems or questions.
3. Remember that antidepressants all take 2-3 weeks to start working, and that the effect is greatest after 10-12 weeks — a long wait, but worth it.
4. Most side effects occur in the first few weeks — hang in there!
5. Call your doctor before deciding to stop these medications; stopping abruptly can cause some unpleasant effects.
6. If the medication is not working after a long enough time, tell your doctor — you may not be taking enough; the effective doses vary greatly from person to person.
7. Many primary care doctors are quite comfortable prescribing these medications, but if yours isn’t, see a specialist (a psychiatrist).
8. If you feel that your doctor (whichever kind) is not taking the time to explain the treatment to you, or is not available to answer questions about your medications, get a second opinion.
9. The more you know, the better; read as much as you can, and ask your spouse or family to read about your treatment — they may have many misconceptions.

When fighting either depression or an anxiety disorder, knowledge is your greatest weapon. Learn as much as you can; you will need this information to combat the general ignorance in society at large concerning these illnesses. The following come highly recommended:

“Feeling Good”, “The Feeling Good Handbook”, and “Ten Days to Self-Esteem” by David Burns MD — one of the founders of Cognitive Therapy explains how to do it yourself. These texts also have nice chapters explaining medications.
“The Anxiety Disease” by David Sheehan MD — a classic description of Panic Disorder and its treatment which is especially good for helping family members understand what a panic sufferer is going through.
“You Mean I Don’t Have to Feel This Way?” by Colette Dowling — written by a woman who has Panic Disorder and Major Depression; well-researched, extensively referenced, fascinating and still easy to read.
“Don’t Panic” by R. Reid Wilson PhD — the best non-medical source for do-it-yourself techniques to control Panic Disorder, written by the leading authority on non-medical interventions for anxiety disorders. It also has a short section on medications.

Panic Disorder and Major Depression are two of the most common afflictions of the human race, yet both are terribly under-recognized and under-treated. Parents of children with Fragile X may be at particular risk for developing these illnesses, because of the tremendous stress of raising developmentally disabled children. These conditions can be effectively treated, but misconceptions in our society and even in the health care profession can impede appropriate treatment. If you have suffered debilitating anxiety or depression, please realize that it is not your fault, and that you will almost certainly get well with proper treatment.

Medication Guide for Fragile X

Medication Guide for Fragile X: Drug Reference