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Down Syndrome Australia
Q. Our 15 year old son is having difficulty with acne the last year or so. Treatment has been hard because everything we have been given causes drying of the skin. He has had eczema since he was a baby and the combination of his already dry skin and the acne treatments is really tough. Do children with Down syndrome just have bad skin? Are there any special treatments that might help?
A. Although acne is not found with any increased frequency in patients with Down syndrome, it is more difficult to treat because of the tendency toward dry skin that nearly 75% of adolescents and adults with DS suffer from. The combination of acne and eczema is tough to treat without side-effects, and I would recommend discussing options with a dermatologist.
I do receive many questions about skin problems in patients with DS. While there are no skin disorders that are specific to individuals with DS, there are a number that occur more commonly than in the general population. Conditions that are observed in persons with DS with high frequency [over 50% of patients] include xerosis [dry skin], atopic dermatitis [eczema], fungal infections [athlete's foot, etc], and bacterial folliculitis [hair follicle infections].
Xerosis In the infant with DS, the skin is soft and normal. In later childhood, the skin becomes dry, pale, and somewhat lax or loose. By the age of 15, over 75% of persons show significant dryness. Xerosis is best managed by the limited use of nondrying soaps [Lever 2000/Dove/Ivory] and the use of lubricating creams.
Atopic Dermatitis Atopic dermatitis [eczema] usually presents in the first two years of life as scaly, red patches and redness and dryness in the creases of the neck, elbow and knee. This condition is apparent in over 50% of children with DS. These lesions are often very itchy and can become thickened secondary to rubbing and scratching. Treatment is aimed at controlling itching, dryness and inflammation. This typically involves the use of hydrocortisone based cream or ointment, moisturizing creams and lotions and oral antihistamines.
Fungal Infections Fungal infections affect a little less than 50% of DS patients by the time they are 15 years old. The most common is the typical "athlete's foot", which presents as itching, redness and peeling between the toes. You can also have small circular patches of infections on the body or scalp, and this is often termed "ringworm" because of its appearance. These infections on the body or feet can usually be readily treated with topical anti-fungal creams such as Lotrimen or Lamisil. The scalp variety, as well as a less common form that can infect the toenails and fingernails, must be treated with an oral anti-fungal medication.
Folliculitis When skin is excessively dry [and especially with eczema] there is an increased risk in the hair follicles becoming infected. These infections are common from puberty on and are typically caused by staphylococcal bacteria. Mild infections can often be managed with topical antibiotics, but more widespread involvement requires oral antibiotics as well. In patients who suffer from recurrent folliculitis there are now some programs experimenting with topical antibiotic lotions [usually used in treating acne] as a prevention tool.
Beware of these skin problems. Each of them can be a real nuisance, but are all readily treatable. Also keep in mind that summer is coming and sunscreen should be on your shelf, in your car and in the sports bag [oh yes, and on your skin].
Q. Our 11-year-old daughter is already starting to have some physical changes of puberty. Is this too early? Do children with Down syndrome have earlier adolescence or different problems during puberty? What do you see as the problems facing us and our daughter during the next 5 or 10 years?
A. Welcome to the next stage of the parenting marathon. Adolescence is a challenging time for parents regardless of how many chromosomes the child happens to possess. The transition from childhood to adulthood is marked by a longing for and a fear of independence (by both parents and children). Physical appearance becomes much more important as puberty brings changes to the body. For the adolescent with Down syndrome it also becomes a time for evaluation of the skills developed throughout childhood and a time for new directions more focused toward specific vocational aims.
The first children with Down syndrome to benefit from home rearing [and specific educational and medical support] are now in their teenage years and early adulthood. They are continually challenging our outdated perceptions of their abilities to make this transition. It is a time of sensitivity and new opportunity.
From the medical standpoint many of the special problems are really only "special" to puberty as opposed to Down syndrome. A normal sequence of development of primary and secondary sexual characteristics occurs. When this sequence is either delayed or accelerated, thyroid function needs to be first investigated. More than one-half of all Down syndrome individuals with thyroid abnormalities will have them show up during the second decade of life. I strongly recommend yearly or every-other year thyroid function testing during these years.
The problems of adolescent sexuality are complex under the best of circumstances and even more difficult when developmental disability must be considered. It was once thought that the majority of Down syndrome patients were infertile. This is clearly not the case with a large portion of females and a few males. Because fertility must be assumed, the area of reproductive health must be considered by all parents. For the girls this means menstrual hygiene management and prevention of sexual abuse and unwanted pregnancies. An excellent resource on these subjects is a book by Edwards and Wilkins titled Just Between Us: A Social Sexual Training Guide for Parents and Professionals.
Puberty is accompanied by a normal weight gain spurt in DS patients, but may often not have a proportionate height increase. This may significantly add to the already present tendency toward obesity. As obesity can very badly impact both their health and their self-esteem at a sensitive time, good nutritional counseling and a daily exercise program should be high priorities.
Although most of the medical problems in this age group are more related to puberty than DS, there are some special concerns with noting. Although the major eye or vision problems should have been well under control by 12 years of age, the incidence of refractive errors requiring glasses continues to be quite high (70+% in some studies) and an abnormality of the cornea called keratoconus occurs in 15% of DS individuals. This disorder presents with decreased vision, tearing and redness of the eye. Surgical replacement of the cornea may be necessary. Visual screening should occur yearly and referral to the ophthalmologist as indicated.
Skin problems plague all teenagers including those with Down syndrome. Acne seems to be no greater or lesser a problem in DS patients, but their inherently dry skin makes treatment a bit more difficult. Another skin lesion more specific to DS patients is folliculitis or staphylococcal blisters. These skin and hair follicle infections occur in up to 50% of this age group and often occur in the genital area, buttocks and thighs. These may require both oral and topical antibiotic therapy.
Lastly, a young person with Down syndrome may become antisocial, moody or depressed (of course this describes the "normal" adolescent as well!). As parents and physicians also tend to become "moody" when dealing with teenagers, this is a common time to seek appropriate referral for counseling if needed.
Q. We just had a parent-teacher conference with our son's 2nd grade teacher. She is concerned that he is easily distracted and has a poor attention span. She suggested we should look into testing him for ADD/ADHD. This issue has never been brought up before. Why is this suddenly an issue and how can we get testing done?
A. Attention deficit hyperactivity disorder, or ADHD [ADD is without hyperactivity], is a commonly diagnosed childhood problem. ADHD is characterized by distractibility, impulsively, decreased attentiveness and may have nondirected motor activity. When these very normal traits interfere with a child's function in the classroom setting, the diagnosis is often considered. I attended a recent conference discussing children with special needs and will pass on to you the approach used by Dr. Dianne McBrien, who is a developmental pediatrician at the University of Iowa and has a special interest in children with Down syndrome.
All children, including children with DS, display these traits on a daily basis. Children with DS may exhibit these traits more often than other children their age, but there is no evidence that ADD occurs more commonly in children with DS. There is even some research suggesting that ADD is less common in children with DS than in the general population. In clinical studies done by Dr. McBrien and others, it has been found that children with DS who display enough of these traits to come to the attention of the child's teachers or parents were more often found to have either medical or educational problems as opposed to ADD. Therefore, I would urge you to investigate those issues before pursuing the diagnosis of ADD. There is no test for ADD at this time. It is a diagnosis of exclusion based on no other explanation for the symptoms of distractibility, impulsively and poor attention span.
There are a number of common medical problems that could lead to a classroom teacher to be concerned about possible ADD:
Hearing and vision problems can easily cause a child to appear inattentive or distracted. Both of these problems are quite common in children with DS and if untreated can lead to severe learning issues. Hearing and vision should be tested yearly.
Thyroid problems affect over 35% of people with DS, often with an onset during the school years. Hypothyroidism [underactive thyroid gland] often causes a child to appear listless and apathetic. Hyperthyroidism [overactive] can cause agitation and restlessness. I have had patients with each of these conditions who were first diagnosed because of concerns at school. Because thyroid disease is so common in the DS population, and because it is difficult to detect by exam, I recommend an annual blood test for thyroid function. Sleep disorders commonly are diagnosed in the process of evaluating learning/school problems in both the general population and in children with DS. Patients with these disorders often have obstructive sleep apnea and awaken hundreds of time per night. You can imagine how these sleep-deprived children do in school the next day. If your child snores constantly, thrashes about while sleeping, or appears tired all the time, I would encourage you to discuss the possibility of a sleep disorder with your child's physician. Communication problems affect all DS children and can make classroom participation very difficult. Children with DS often understand very well and express what they know with much more difficulty. This often leads to frustration that might be expressed by acting out [hyperactivity] or tuning out [inattention].
As with all children, Children with DS may also have specific learning disabilities or emotional reasons that would lead to the symptoms associated with ADD. Both parents [the experts on their child] and teachers [the educational experts] need to consider these possibilities carefully before attaching the label of ADD.
If your son's evaluation does not reveal any medical, educational or emotional causes for his symptoms, I would then [and only then] suggest speaking with your pediatrician about evaluating him for ADD.