• Assessment
  
• Blood tests and EKGs
  
• Seizures and seizure-detection tests
  

Just as there is no "magic bullet" medicine that can cure PDDs, no medical treatment currently available can treat all of the troublesome symptoms associated with these disorders. Responsible doctors take a top-down approach. Medication is prescribed only for symptoms causing the most distress, preferably after nondrug alternatives have been tried or in concert with such treatments.

Assessment

Interventions Prior to Using Medication

1. Education
2. Behavior modification (ABA)
3. Speech therapy
4. Sensory integration (SI) therapy, including deep pressure, skin brushing, vestibular stimulation
5. Relaxation therapy
6. Structured teaching (TEACCH)
7. Auditory integration training
8. Vitamin B6 plus magnesium
9. Dimethylglycine (DMG)
10. Allergy evaluation, including food sensitivities
11. Casein-free and gluten-free diet
12. Social stories

Even the most distressing problems, such as head-banging and other forms of self-injurious behavior (SIB), may be a form of communication. In fact, head-banging is often associated with ear infections, and may go away if the underlying infection is treated rather than the behavior. Likewise, hyperactivity in some children is related to an unresponsive sensory system, and can be ameliorated with sensory integration therapy as well as with stimulant medications. Unlike Ritalin, sensory integration has no side effects to worry about. The functional behavioral analysis techniques described in Chapter 6 can help you find the roots of problem behaviors and give you the tools you need to address them. Sometimes those tools are medical, sometimes not.

The assessment process should be followed by a discussion of strategies, including both the medical strategies discussed in this chapter and non-medical alternatives. This strategic plan should also consider seemingly unrelated health issues. Many people have found that what appeared to be a purely psychiatric symptom actually had roots in mundane physical problems.

My son experiences auditory hallucinations, but after one and a half days on antibiotics, the voices are nearly gone. He is feeling great, and was able to participate normally in classes today.

Who would have thought … an outer ear infection leading to voices! Which makes me really, really wonder--if ulcers are now known to be caused by bacteria in most cases, how many people classified with "mental" illnesses might show significant improvement if they went through a round or two of antibiotics? And what if I had taken him directly to the psychiatrist to deal with the voices, rather than the pediatrician, who looked in his ear? He would have sat across the desk from the doctor, who would have advised increasing the dosage of the psychiatric drugs.

I know this can't be the answer for everybody. But how many people are being evaluated on the basis of their "mental" symptoms, without their "physical" symptoms being considered simultaneously? --Lynn, mother of ten-year-old Richard

Help your doctor by answering questions as completely as possible during the assessment and strategic planning process. Ask whether medical testing, a metabolic workup, genetic screening, an immune-system test battery, or allergy testing should be pursued, based on the symptoms you have seen.

If your doctor isn't sure how to proceed, the DAN! Clinical Options Manual may be helpful. See the section "PDD-related studies" later in this chapter for more information on DAN!

If your doctor seems to be interested only in prescribing medications, or if follow-up is not handled well, find another physician.

Blood tests and EKGs

The EKG can be done in the doctor's office, and since it uses wires that stick on the chest with an adhesive patch or gooey substance, it doesn't hurt at all. You have to lie still, however, so it's a tough test for hyperactive children.

With some medications, such as the antispasmodic drug Depakote, regular blood tests will be required. These tests check physical functions or make sure the medication has reached its therapeutic level (the dosage at which it is effective without causing harm). These medications should be avoided by patients who do not have regular access to quality lab facilities, such as those living in remote areas, unless all other alternatives have been explored.

For those who can drop into a doctor's office for a blood draw once a month, however, monitoring soon becomes part of your regular routine. Good phlebotomists (blood-draw specialists) do not cause bruising or more than a twinge of pain when they do their job, unless the patient bruises very easily or has a low pain threshold. If this is the case, let the phlebotomist know--she may have a better way to obtain the sample.

For obvious reasons, children don't relish blood draws. Stickers, treats, and other rewards for bravery can help. Blood tests are especially tough on children who are sensory-defensive. An occupational therapist may be able to help you with techniques for desensitizing the area from which blood will need to be drawn. Numbing ointments can also help.

Seizures and seizure-detection tests

• Generalized seizures, which affect the whole brain.

  • Absence seizures are sometimes called petit mal seizures, although this term may be applied to other types of "mild" seizures as well. These brief events are characterized by blank staring and sometimes small, repetitive movements (automatisms).

  • Myoclonic seizures are jerking movements of muscles or muscle groups.

  • Atonic seizures, also called drop attacks, are seizures in which the body has a sudden loss of muscle tone and cannot stand or sit upright.

  • Tonic/clonic seizures, formerly called grand mal seizures, are the best-known and most obvious type of seizure. The body is rigid during the tonic phase, and jerks during the clonic phase. Tonic/clonic seizures are often followed by a "foggy" feeling, headaches, or sleep.

• Partial seizures, also called focal or local seizures, which affect only part of the brain.

  • Simple partial seizures, in which one part of the body, or several body parts on one side only, may twitch uncontrollably. Alternatively, the person may see, hear, or smell things that are not there, or have a sudden flood of emotions. The person may feel confused and unsure of where they are. They will, however, be conscious.

  • Complex partial seizures are like a simple partial seizure, but with loss of consciousness. The person may walk, talk, or move around, but won't remember doing so afterward.

• Status epilepticus, a dangerous and possibly life-threatening condition in which multiple seizures occur one after another, without regained consciousness in between. Patients in the throes of status epilepticus need to be transported to the closest emergency room. Thankfully, this type of seizure is very rare.

One has a better idea of a person's prognosis when he or she reaches puberty. It is estimated that 20 to 25 percent experience seizures for the first time around puberty. This can range from grand mal seizures to subclinical seizures. I have known a few individuals who were not treated for these seizures, and they went from high-functioning to low-functioning. --Dr. Stephen M. Edelson, director, Center for the Study of Autism

Diagnosis of seizure disorders

Most EEGs take one or two hours. The EEG technician may try to get a reading asleep, at rest, wide awake, during deep breathing exercises, and while a light is flashing. The test is not painful at all, and some little kids think it's "cool," in a Frankenstein's laboratory kind of way.

If the short EEG is inconclusive, the doctor may order a sleep-deprived EEG. As the name indicates, the patient needs to be awake but bone-tired for this test. Parents can take turns keeping a child up all through the night, then bring him to the test site first thing in the morning. You can imagine how much fun this will be with a willful, cranky child! Movie marathons, midnight bowling, and shopping trips to the all-night convenience store are among the carrots that have kept some young ones (and many sleepy adults as well) awake through the night. The idea is for the exhausted patient to drop into a deep sleep right away, and it usually works.

But even this procedure may not show clear evidence of seizures. In cases where the doctor still suspects seizure activity, she may order 24-, 36-, or 48-hour EEG monitoring. This procedure can be done at home with a portable EEG unit or in a hospital setting. The portable units are certainly more convenient, but they're rather cumbersome, and wires have a tendency to come loose. If they do, the test must be redone.

Other types of brain scans are available, but they are also much more expensive than EEGs. These include magnetic resonance imagery (MRI), single photon emission computed tomography (SPECT, also called NeuroSPECT), and positron emission tomography (PET) scans. An MRI can actually show physical changes that are associated with seizure activity; SPECT scans can show cerebral blood flow, which may be a helpful clue to areas where neural activity is abnormally high or low; and PET images can show changes in cerebral metabolism.

Temporal lobe epilepsy, usually now called complex partial seizure disorder, is hard to diagnose. People with temporal lobe epilepsy experience odd states of mind rather than the easier-to-recognize physical seizures that result from activity in the parts of the brain that govern movement. During a temporal lobe seizure, the person's environment may suddenly seem "unreal," for example. Objects and sounds may take on a hallucinatory quality. Strong emotions, such as fear or disgust, may come on in a rush, and with no relationship to reality. Actual auditory and visual hallucinations may occur, often similar to the classic migraine aura or epileptic aura that brings visions of patterns and colors, or creates the sensation of smelling or tasting something that's not there. Some patients describe an internal sensation that "flows up" from their stomach to their head as a seizure begins.

Still more difficult to detect are electrical malfunctions that may occur deep within the brain. Physicians believe these occur in some people, but diagnosis of hidden events is hit-and-miss: it would be surprising if one just happened to occur while an expensive brain scan (or even an EEG) is taking place.

Coping with seizures

1. Move the person to the floor and make sure anything nearby that could cause injury is moved.

2. Turn the person on her side to prevent choking. Never put an object in the person's mouth, as there's no chance that he will swallow his tongue.

3. Loosen any tight clothing.

4. Stay with the person until the seizure ends.

5. Help the person get comfortable as they recover from the seizure.

6. If a seizure lasts more than five minutes, or if seizures continue to follow each other during a ten-minute period, call for emergency medical care and wait with the person until it arrives.