Case #5
John's baby teeth came in so perfectly, that I felt thankful for something in his little body not being affected by the prenatal exposure to alcohol that had such adverse effects on his heart, his bones, his eyes, and his brain. His first dental problem, as perceived by the dentist, was thumb sucking.

First we tried the Thum medicine at bedtime, but he just sucked it off. We tried tying his hands in socks, but he just sucked through them. The dentist installed a wire prong appliance to the roof of his mouth, which was effective during the six-months it was wired in, but as soon as it was removed, the thumb sucking resumed. I wish now we had just left it alone, perhaps he would have stopped on his own. Perhaps not. John still sucks his thumb at bedtime, and it has not caused an overbite or any other problems. His suck is not very strong anyway, so no harm is done.

When his secondary teeth began to emerge on time, I was horrified that they began coming in crooked and were misshapen. He required dental surgery to remove 9 adult teeth, including one extra front tooth. The doctors couldn't tell which of the three in the x-rays was the extra one, but I think they must have guessed right, because the two that came in were relatively well positioned. Of course, John required major orthodontia, wearing braces for over 6 years to the tune of about $12,000, only half of which was covered by systems such as private insurance, state health care, and adoption subsidy. He surprisingly tolerated the followup year of wearing a retainer at night, never losing or destroying it.

Flouride treatment was a problem for John, because it entailed a swish-and-spit routine that was difficult for him to follow. When a child with FAS, who has the emotional/social development of a child half his chronological age, is expected to have something sweet in his mouth and then spit, it is more than likely going to be swallowed inadvertently on impulse, with the child have little or no control over that impulse.

John tolerates dental care relatively well now, but as a child, it was an experience full of anxiety and fear. John's FAS disability includes sensory integration issues, which means that John experiences input to his senses in abnormal ways. His sense of hearing and touch are extremely sensitive, so that minor noises startle him easily and what would be considered mild pain for most people would be felt as extreme pain for John, depending on the situation.

Emotionally, John was very easily frightened by many things as a child, especially things that made sudden or loud noises, such as motorcycles, sewing machines, vacuum cleaners, and - you guesssed it - dental drills. This is very typical for children with FAS or FAE. John needed me close by for all types of dental or medical procedures, to keep him calm so he wouldn't lose control and bring the procedure to a screaming halt. It was difficult for me to convince medical and dental personnel that I was not just an overprotective mother, that I knew what I was talking about when I said John needed to have me present. John also went through emotional developmental levels much later than normal, so at age 4 and 5, he was still experiencing separation anxiety. Although he never really had any fear of strangers, he had many unreasonable fears of other sorts, and often that was not understood by the professionals treating him.

Other aspects of the FAS disability that affect John's teeth include poor enamel and excessive saliva, which I think counteracted the poor enamel. John had sealants applied to his teeth when he was younger, but eventually the sealants must have worn off, and he ended up with about 3 small cavities a few years ago (about age 18). The increased saliva presented a great problem while John was growing up. Specialists explained that John's salivary glands were producing more saliva than he needed, that he had a reverse tongue thrust, and that his lips had decreased sensation, and that his jaw was underdeveloped, and all these contriubted to the drooling. This was a big problem in that he accidentally spit on people while talking, soaked his shirt, and got his school work wet. When John started to take Ritalin, I noticed that the saliva production seemed to normalize. I also noticed that he dried up to a normal amount when he took antihistamines like Benadryl. Now that John is on Ritalin during the entire day, the excess saliva is no longer a problem.

My advice to anyone giving treatment to a child or young adult with FAS or FAE is to consider the lower social/emotional developmental in this person. The general rule of thumb is to take the chronological age and divide by two. Most teens with FAS have the emotional and social skills of a 6 year old, even those with normal or near normal intelligence, even those with few of the facial characteristics.

How can you tell a patient has FAS or FAE without the facial characteristics? You can't. But you can assume the child MIGHT be alcohol effected if the child is a foster child or is adopted, as 80% of children in the foster/adopt system are born to women who abuse alcohol and are at risk of being FAE, possibly without diagnosis or recognition. If the patient acts inappropriately or is unusually friendly, you might consider that this patient could have alcohol effects and proceed with caution.

Warn him/her about the equipment you are about to use, try to avoid making him/her wait too long. Be patient with behavior problems and reassure the mother that you understand. Don't assume that problem behaviors are a result of poor parenting skills, the mothers hear this all the time, and they are probably trying their best to work on the child's behavior problems. Sensory integration issues (sensitivity to light, sound and touch) are important. The noise of the drill could be extremely scary and cause lots of anxiety. Even the motor used to position the chair can set off a child with FAS/FAE. It might be a good idea to let them try it themselves before they even sit in the chair. Let them know each time you are going to use anything that makes noise, raise or lower the chair, turn on the big light, etc.

There may be increased or decreased pain tolerance (or combined, which is not unusual). A child might be very sensitive to pain in the mouth, but not be bothered by stubbing his toe. Often a child will not be bothered much by mouth pain, and therefore the parent and provider need to be extra alert for conditions that would eicit complaints in a non-disabled person, as symptoms could be masked by altered pain tolerance.

Some children with FAS or FAE might take shorter or longer time periods for pain medications to take effect. They might need their doses altered to every three hours if the usual dose is every four hours because of their altered rate of metabolism.

Don't assume the mother is the birth mother, and don't assume the birth mother is still abusing alcohol. The few birth moms who keep their children who are affected are usually in recovery and need support and understanding. Most birth moms are dead by the time the child (now in foster/adoptive care) starts school.

Please be aware that when it comes to juvenile patients, many of the children who will be seen are going to be UNRECOGNIZED victims of FAS or FAE. Only 11% of these kids get diagnosed early before they have severe social behavioral problems.

The effects of prenatal exposure to alcohol last a lifetime, and parents will be taking care of these children well beyond the time they legally reach adulthood. Caring for children with FAS/FAE is extremely stressful and is emotionally draining. Your understanding and patience will be greatly appreciated. Thank you for taking the time to learn about Fetal Alcohol Syndrome and Effects.

Teresa in Tucson, Arizona
Mother of John (FAS, 22)

 

 

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