Monthly advice on how to write your child's Letter of Intent,
also known as a Life Plan
This issue of the Life Planners newsletter is the fourth in a five-month series on medical considerations. Last month we took a close-up view of the medical history section of your Letter of Intent. We included an excerpt from an actual Letter of Intent for you to view.
This month we will cover a new topic—medical care. For those of you with medically fragile children, this may be a very long section in your child's Letter of Intent.
The sample we will show you is about a boy with Down Syndrome. Much is known about Down syndrome, yet is not all accessible in one place, so this parent decided to gather up some of the most relevant information and place it in the Letter of Intent. This parent could have chosen, instead, to shorten the section greatly by referring to a few good books. You might do it this way, too. Remember, the Letter of Intent is mostly for describing a child, not a diagnosis.
Note: If your child's diagnosis is rare, or little is known about it, and you have found someone who has a child like yours, you might want to include information about the other child someplace in your Letter of Intent. The Medical Care section might be a good place. Be sure and secure permission from the other parent if you want to include any identifying information.
The sample below is a long section, and, happily, it is not necessary for you to read every word of it to get the idea. Rather, just look it over. Get a feel for its length, its categories, and its tone. Then decide how you will write your own medical care section, which, no doubt, will look quite different.
Lastly, as with all sections in your Letter of Intent, use your own judgment as to how much information to include in the medical care section. And remember that this is a working document—you can always add more later.
Following is the Medical Care entry from an actual Letter of Intent:
In addition to mental retardation, people with Down syndrome have many conditions that you must understand and monitor to optimize growth and development.
Daniel is developmentally delayed and functions at approximately the four-year-old level in most activities, except for fine motor coordination (use of the fingers), where he functions at about the level of a two-year-old, and safety awareness, where he approximates the skills of a three-year-old.
Like most children with Down syndrome, Daniel is quite small for his age. Daniel's endocrinologist, Dr. Manuela Almaguer of Wayne, New Jersey, has examined Daniel in the past (the last time was November of 1997) to see if his slow growth is caused by some condition other than Down syndrome, but she is satisfied that it is not. Dr. Almaguer gave us a growth chart for boys with Down syndrome that Daniel's doctor should use to chart his growth. Dr. Sherman has the chart and should refer Daniel back to Dr. Almaguer if he sees any deviations.
The thyroid gland sits at the base of the front of the neck and makes thyroid hormone. The thyroid hormone is essential for growth and development in children, and for normal metabolism at all ages. Some children with Down syndrome suffer from abnormalities of the thyroid gland that can cause serious complications if left untreated. Some of these complications include slow growth, decreased development, an enlarged tongue, decreased muscle tone, dry skin, and constipation. Unfortunately, all of these conditions occur regularly in children with Down syndrome that have normal thyroids, so it is impossible to diagnose thyroid malfunction just by waiting for symptoms. Daniel needs to get annual thyroid tests. His last test was in December of 2002 and it was normal. Daniel's thyroid has tested as normal each time despite the fact that he exhibits many of the above symptoms-he has avoided dry skin and constipation but does exhibit the rest. The name of the thyroid abnormality most associated with Down syndrome is called hypothyroidism, meaning the thyroid does not make enough thyroid hormone. People with Down syndrome can exhibit this condition at birth or it can be acquired at any age. Daniel avoided the congenital condition, but could develop the acquired form at any time, which can have one of two causes:
There are three blood levels that need to be tested each year:
If Daniel is someday diagnosed with hypothyroidism, the usual treatment is to take regular doses of T4 (a treatment known as thyroid hormone replacement therapy). Regular blood tests are required to ensure that the dosage causes the right levels of T3 to be produced from the T4, and that the T3 levels are not too high or too low. Once hypothyroidism is detected, treatment is usually required for life. Once treatment starts, you may notice that a calm, sedate person who has been suffering from hypothyroidism becomes more animated or even hyperactive. This is not a side effect of any treatment, but rather a return of the person to his or her natural state, which had been masked by hypothyroidism previously.
Less frequently, hyperthyroidism is diagnosed in people with Down syndrome (between 1% and 5% of all people with Down syndrome). Hyperthyroidism is marked by low TSH levels and elevated T3 and T4 levels. There are several treatments for this condition, ranging from drugs to surgery to radiation, but there is no consensus among experts at the moment as to what the best treatment is for someone with Down syndrome.
You may occasionally see claims that all children with Down syndrome should be given thyroid hormone replacement therapy, but there is no strong evidence that this is beneficial, and it could even be dangerous. Some even claim that hypothyroidism cannot be detected in people with Down syndrome with blood tests, but there is no scientific evidence supporting this, either. We recommend that Daniel continue to have his thyroid checked each year by his family physician at his annual checkup, withholding treatment unless abnormal test levels are detected.
Everyone needs vision, hearing, and other checkups, but people with Down syndrome have unusual tendencies that require special attention.
Like most children, Daniel has endured a few bouts of conjunctivitis, but no other diseases of the eyes. Daniel does wear eyeglasses. You frequently see glasses on children with Down syndrome because they seem to have more vision problems than typical people. Daniel has several different problems with his eyes, but it is not clear which of them are related to Down syndrome. People with Down syndrome are more susceptible to glaucoma, a very serious disease where increased intraocular pressure leads to vision loss. They also are more likely to suffer from myopia (nearsightedness), strabismus (crossed eyes), and amblyopia (lazy eye), but Daniel does not have any of these. Elderly people with Down syndrome are prone to keratoconus (a progressive thinning of the cornea that causes severe vision problems).
Daniel has nystagmus, which describes a shaking of the pupils that makes it hard to focus. Daniel has a specific type of nystagmus called latent nystagmus, meaning that the shaking is exacerbated when one eye is covered. Because you spend a lot more time with both eyes open (when Daniel's shaking is minimal), this is a less serious form of nystagmus. Daniel does show some shaking with both eyes open, and you may see him tilt his head backward at a slight angle to steady his eyes when he is concentrating. Dr. Mickey believes that this is an excellent way for Daniel to compensate for his vision condition and recommended that no surgery be performed to correct this condition unless it significantly worsens.
Daniel also has a mild astigmatism, which can affect his ability to do very close work, such as reading. Daniel wears glasses to correct this astigmatism. An unexpected result is that the glasses appear to have helped his nystagmus as well. His prescription is mild and, although he can wear the glasses exclusively for reading, he seems to do better wearing them all the time. Daniel also suffers from farsightedness, but this condition has actually improved, which sometimes happens as children mature.
You can have Daniel's glasses made and repaired anywhere, but shopping for a place that accepts the AT&T Benefits' Vision Card will get you a discount. We've most recently used Pearle Vision.
If you're like us and don't know anything about glasses, this is how you take care of them:
Daniel is able to take off his glasses properly, but does not always put them down in a safe place. Daniel's glasses have a band that lets the glasses hang around his neck when he takes them off, which has dramatically decreased searching for lost glasses. Daniel is good at putting his glasses on, as long as the glasses are kept adjusted so they don't slide down his nose. (The glasses can't be permanently adjusted to eliminate this problem because Daniel has the flat nasal bridge characteristic of people with Down syndrome.)
Children with Down syndrome often suffer hearing loss, possibly due to undiagnosed ear infections, so checking Daniel's hearing is more important than for typical children. Luckily, Daniel has had remarkably few ear infections-no more than any typical child. As a baby, Daniel had two auditory evoked potential (BAER) tests, which found him within the normal range. The first was in May of 1992 by Dr. S. Parnes at Albany Medical Center in Albany, New York. The second was in August of 1992 by Duchess Physiatric Associates at St. Francis Hospital in Poughkeepsie, New York.
Daniel's hearing has been tested numerous times at the Institute for Child Development at the Tomorrow's Children Center at the Hackensack Medical Center in Hackensack, New Jersey (201-996-5327). The early tests (July of 1994, November of 1994, and June of 1995) were inconclusive because of testing errors, but the test in May of 1996 showed Daniel's hearing to be within the normal range. Recent tests (June of 1997, July of 1998, and October of 2000) were even more extensive, and showed Daniel's hearing to be well within normal range.
Daniel's latest tests (October of 2002 and January of 2003) showed a slight degradation in his hearing at high frequencies. "Normal" hearing range would show that sounds at all frequencies are heard at 20 decibels of volume. Daniel recognized all frequencies at that volume except for high frequency, which he recognized only when the volume was increased to 25 decibels. This might indicate that Daniel has trouble hearing soft sounds such as "shhh" or "thhh" but should not cause other problems. It is common for children with Down syndrome to sometimes show this kind of hearing loss as they age, because a typical child's eardrum becomes round as it grows (enhancing hearing) but the eardrum of a child with Down syndrome remains flat. If Daniel's hearing does not degrade further, there is no need to treat this slight problem.
Dr. Sherman has records of all of these tests. Daniel's hearing was shown to be stable in January, but his hearing should be reevaluated every year (or earlier if problems are suspected).
Down syndrome is associated with numerous oral problems that Dr. Frey is aware of:
We have recently informed Dr. Frey that an early warning sign of leukemia is the appearance of oral lesions or gingival hemorrhage. Daniel must have his dentist check for these symptoms at each checkup.
A very good medical paper on this subject is: "Dental care for the patient with Down syndrome" by Dr. Angela Pilcher (Down Syndrome Research and Practice Volume 5 Number 3, pp 111-116, 1998). We have provided it to Dr. Frey.
Over the years, Daniel has gradually reduced his fear of dental exams, but he still needs some coaxing. At his last appointment, in February of 2003, Daniel tolerated the exam and cleaning better than ever, but unfortunately he swallowed too much fluoride and vomited in the office. Next time, the hygienist will try to use less toothpaste and we will avoid feeding Danny before his appointment.
Daniel usually speaks in full sentences, but you have to listen closely to understand him. Like many people with Down syndrome, he speaks mostly in the present tense about concrete things, but in the last couple of years, Daniel has begun to speak in past and future tense, which was a real breakthrough for him. He seems to be working on concepts of "before" and "after" and asks lots of questions about what we will do next or when we will do something in the future. Daniel seems to be a lot more conversational at home than at school.
It takes some time to understand Daniel's language and you might assume that he hasn't much to say if you don't pay attention. Daniel actually has a lot to say, so you need to take the time to really listen. If you don't know what he is saying, you can ask him questions or ask him to repeat what he says-he's usually very patient about saying things again. Sometimes our other children understand him when we don't.
Daniel's receptive language, while also delayed, shows a much richer vocabulary. Daniel always understands simple commands such as "Come in for lunch." Daniel responds to "Bring your plate into the kitchen" after each meal and often clears the whole table without being asked. At times Daniel ignores commands, but this is not usually traceable to lack of understanding as much as lack of interest in complying. He understands compound commands, such as "Put the fork in the sink and the paper plate in the garbage," or "Pick up the book and put it on the shelf in the living room." Although I've listed just a few specific examples here, Daniel actually seems to understand most of the conversation that goes on around him. Daniel responds to more complex questions such as, "Tell me about this worksheet" or "Who did you see on your trip?" or "What was your favorite part of your school day?"
It's easy to get the impression that Daniel won't understand a lot of things that are happening to him, but it's not true. Sometimes Daniel will say "no" when you ask him to do something (such as take a pill). If you explain to him, "You need to take this pill so that your nose will stop running," he usually complies happily. It's very important to explain everything to Daniel, because he understands more than you'd think. Because of his disability, Daniel actually needs more explanation, not less. Sometimes Daniel needs visual cues to help him understand. For example, you could touch your throat as you say, "Daniel, do you have a sore throat?" If you still don't think he understands, you could take his hand and have him touch his own throat as you ask.
Sometimes Daniel needs to have the right responses modeled for him. For example, if I say, "Daniel, please come upstairs" and he fails to respond or says, "No," sometimes it helps to say, "Daniel, you mean 'yes'." Or you can simply repeat the request and say "Yes, Daddy" after it, just as you'd like him to do. Often, he'll repeat it and comply with the request. Daniel also learns more easily (whether it's speech or anything else) if you use rituals. If you create a pattern that leads Daniel to complete the pattern each time, that helps him comply.
Giving Daniel a chance to identify a pattern also raises compliance. For example, asking Daniel, "What do we do before we go to bed?" is more likely to cause Daniel to brush his teeth than directing him to do so.
At times Daniel may truly not understand what you are saying. Daniel can sometimes fool you with "jargoning," ritualizing certain speech patterns, such as "I forget" or "Oh, I see" or "In a couple of minutes" or "I already did" even in cases where he may not actually understand what you said. It can help for you to explain things more or ask a few questions that require different responses to test Daniel's understanding.
Daniel receives speech therapy at Valley School, so you can also speak to the speech therapist to learn more about Daniel's development. Keep in mind, however, that the speech therapist won't know Daniel as well as you do, and remember that Daniel is less talkative at school than at home.
Daniel has never seen a mental health professional except through the school for psychological evaluation as part of his Individualized Education Plan (IEP). Danny doesn't have (and doesn't need) a behavior plan at school. If a behavior problem should arise at school, we recommend quickly requesting a behavior plan from his case manager, because doing so will prevent deterioration of a good placement.
Regardless, mental health problems, especially depression, are common in adults with Down syndrome-some studies show it to be more common than with typical adults. In people with Down syndrome, the symptoms of depression are limited to tearfulness, decreased appetite, weight loss, social withdrawal (especially silence), and slowness of movement. Suicidal thoughts (and the guilty feelings associated with depression in typical adults) are rare in depressed people with Down syndrome, possibly because their cognitive functioning does not allow them. Sharon and I have not seen any studies to bear this out, but we think it is possible that Daniel may avoid this high rate of depression due to his deep faith in God and his high self-awareness. He knows that he has Down syndrome. He knows that it makes some things difficult for him. But he also knows that God made him this way and has a plan for his life. Perhaps this will make no difference for Daniel, but we are teaching Daniel these attitudes and we think they may prevent depression. Before concluding that Daniel is suffering from depression, get his thyroid checked. Hypothyroidism can cause mental slowness that appears to be depression.
Alzheimer's disease is another major risk. It was once thought that all adults with Down syndrome developed Alzheimer's disease if they lived long enough, but recent studies have shown this not to be the case. If increased irritability, social withdrawal, confusion, or other similar symptoms are observed, treatment should first be considered for depression before assuming that Alzheimer's disease is the culprit. Still, 25% of 45-year-olds and 40% of 60-year-olds with Down syndrome do develop Alzheimer's disease (versus about 5% of typical 60-year-olds). 77% of 70-year-olds with Down syndrome develop it. This makes sense because the Familial Alzheimer's Dementia gene has been identified as occurring on chromosome 21 (the gene which is tripled rather than doubled in those with Down syndrome). All adults with Down syndrome should receive annual cognitive screenings starting at age 30.
Daniel has no history of seizures but people with Down syndrome between 10 and 30 are far more prone to them than the general population. Seizures can be caused by the onset of Alzheimer's disease, tumors, infection, or unknown causes. Use of an electroencephalogram (EEG), magnetic resonance imaging (MRI) or spinal fluid analysis may be recommended to pinpoint the cause. Use of anticonvulsants is usually effective as a treatment, unless the cause is Alzheimer's disease (where the progression of the disease makes the treatment less and less effective over time).
Daniel has shown symptoms of a mild case of a relatively rare condition called obsessional slowness. At times, Daniel goes through the motions of a common act (such as picking up a dropped utensil) in slow motion, sometimes stopping and restarting the act several times before completing it. These symptoms are mild, but there are numerous cases of people with Down syndrome taking hours to perform routine tasks such as bathing and dressing. Some researchers believe that obsessional slowness is a variant of the more well-known obsessive compulsive disorder (OCD), while others believe it is a separate condition because OCD sufferers typically are anxious, while obsessional slowness patients seem not to have any abnormal anxiety. A few researchers theorize that obsessional slowness comes in many forms, with some patients that have low anxiety and engage in ordering rituals while more extreme cases are very anxious and resemble OCD more closely. Treatment for OCD usually consists of exposing patients to situations and teaching them to prevent their OCD responses, but successful treatment of obsessional slowness consists of behavioral shaping techniques (prompting patients and helping them with their pacing). The literature suggests that obsessional slowness begins with symptoms in late adolescence or early adulthood, so it is not clear that the symptoms we observe in Daniel truly are sign of obsessional slowness. Educating people around Daniel about this condition can be helpful, so they don't mistake his responses as stubbornness or laziness.
Daniel, like most people with Down syndrome, has gross motor delays but he has shown few other problems.
Daniel learned to walk in July of 1995, but does not have the agility you would expect from a boy his age. Daniel can generally hold his own in a playground situation without getting knocked about as he did in years past, but there are a lot of things he still can't do, such as using the swings or climbing monkey bars, or swinging from chinning bars. Daniel usually knows his limitations, but he still bears fairly close watching in any situation that requires a lot of mobility or dexterity, such as a playground.
Daniel's former home physical therapist, Louise Simmons, worked extensively with Daniel to help him walk and to go up and down stairs. Daniel can walk upright up and down the stairs while holding the banister, and no longer needs to put both feet on each step as he goes. (He's still fairly slow on the stairs, though, which is safer for him.) Even though it's been a long time since she worked with Daniel, Louise is a good resource for questions and would be eager to help.
Daniel has been wearing orthotics in his shoes since April of 1995. It's important that Daniel wear his orthotics for several hours each day-they are usually installed in his sneakers. Daniel needs orthotics to stop him from walking incorrectly-if unchecked he'd be walking on the bones instead of the fleshy part of his feet, causing him pain and maybe even surgery later in life. Check the orthotics every six months and probably replace them once a year while he's still growing.
Daniel's physical therapist at the Valley School is responsible for checking his orthotics, but you should ensure they are checked once a year by the orthotist. They were replaced in May of 2001. Daniel's orthotist is Adam Canvisser at the Orange, New Jersey office of Jack Gold Surgical Appliances (973-674-8050).
The orthotics are installed in Daniel's sneakers-they look like the glued-in sole, but they are not. Remove them and re-install them in new sneakers by ripping out the glued-in insole and putting the orthotics in. When you buy new sneakers, buy wide sneakers one size larger than his foot measures. We strongly recommend buying at the Wyckoff Stride-Rite, because the staff will allow you to rip out the insole, put in the orthotics, and try them on Daniel before buying. We also suggest buying Velcro sneakers, because Daniel can manage the Velcro by himself.
The orthotics are custom-made for Daniel by the orthotist. It takes multiple office visits to fit them properly and takes hours to make. They have been covered by our current insurance, but I think that we'd have to pay hundreds of dollars for a replacement in the event they were damaged or lost. Knowing this will help you be careful with the orthotics. Remember that losing Daniel's sneakers means losing his orthotics.
Many people with Down syndrome never acquire the balance to ride a bicycle, but Daniel can probably someday learn to ride a tricycle. Before he outgrew it, Sharon had been working with him using a special tricycle that has a push handle in the back. Sharon pushed the tricycle and Danny just needed to learn to steer. Some large, specially-made tricycles may eventually be the right equipment for Danny, but we haven't thoroughly investigated that yet. If one is purchased, it might be reimbursable from the AT&T Special Children Assistance Program (as described in "Special Coverage" on page 20) or the New Jersey State Department of Developmental Disabilities (DDD) (as described in "Services and Benefits" on page 53).
Daniel's middle and ring fingers on both hands have been observed to suffer from occasional "triggering-the term used when a finger "freezes" in a bent position.
An orthopedist, Dr. Louis Moore of Dumont, New Jersey, saw Daniel for this condition in November of 1997 and provided the triggering diagnosis. We have seen the condition several times since, but not since 1998. You can sometimes relieve this triggering by flexing the fingers when they are warm, such as in the bath. (Never force the fingers to flex.) Triggering is not harmful unless it persists for several weeks, when it can cause bone damage. If the condition persists for more than a week, Daniel should be brought back to Dr. Moore. There is a simple surgical procedure that can correct the problem if necessary, but we've been reluctant to do something that invasive. Uncle Ralph consulted a rheumatologist who suggested having a physical therapist use ultrasound to reduce the swelling in the tendon, which could be tried to avoid surgery.
People with Down syndrome can have a spine and neck condition called Atlanto-Axial Instability (AAI) that makes them susceptible to paralysis. Daniel was X-rayed in August of 1998 and was shown to be free of this problem, but should be X-rayed again at age 12. Dr. Sherman has the X-ray and Uncle Ralph can provide guidance on this issue if needed. Some studies show, however, that 85% of people with Down syndrome have AAI but only 20% of the cases are detectable by X-ray. Only 2% of all cases require treatment, but it is not yet known if this 2% is within the 20% that are detected or whether some fall outside that 20%.
Hip dysplasia, a misalignment of the hip that causes pain and inhibits walking, occurs in as many as 4% of children with Down syndrome, increasing with age to affect almost 20% of 70-year-olds with Down syndrome.
With increasing age, degenerative osteoarthritis spinal degeneration is common in adults with Down syndrome, and can cause severe mobility problems.
60% of children with Down syndrome are born with a serious heart defect, typically a hole in the atrium called an Atrium Septum Defect (ASD). Daniel was given an echocardiogram shortly after birth and we were told that he has no such defect. This condition frequently goes undetected at birth, so Dr. Zvi Marans of Paramus, New Jersey (201-599-0026) performed an echocardiogram on February 3, 2003 and definitively ruled out ASD. He said that Daniel requires no follow-up unless symptoms are manifested.
Nearly 50% of adults with Down syndrome develop Mitral Valve Prolapse (MVP). In patients with MVP, the mitral valve flaps are enlarged, causing collapse into the atrium, sending small amounts of blood to flow back into the atrium. MVP causes the heart to pump harder to make up for the blood loss, leading to shortness of breath. More severe cases require surgery.
30% of adults with Down syndrome develop sleep apnea, where breathing stops while asleep, which causes heart failure in some cases. Frequently , adults with Down syndrome also develop other cardiac problems (aortic insufficiency, congestive heart failure, and even heart attack) and should have annual chest X-rays, echocardiograms, and lipid profiles after the age of 18. Shortness of breath or chest pains requires immediate attention.
When Daniel was born, he suffered mild lung problems typical of premature infants. The lack of surfactant in his lungs caused him to require oxygen for several days. Outside of the normal number of respiratory infections typical of any child, Daniel has shown no signs of lung problems since.
Daniel should be continually monitored, however, because sleep apnea is common in people with Down syndrome due to the enlarged tongue and uvula as well as low muscle tone. Daniel's snoring has lessened since his tonsillectomy and adenoidectomy, but he still snores a bit. If you should notice his snoring increase or notice him becoming irritable or sleepy during the day, he should undergo a sleep study to rule out apnea. Sleep apnea is a known cause of heart attack and can be easily corrected with Continuous Positive Airway Pressure (CPAP) devices or surgery.
People with Down syndrome, unfortunately, are far more susceptible to white blood cell disorders than the general population. Leukemia, which is literally a cancer of the blood cells, occurs when white blood cells reproduce uncontrollably. There are two kinds of leukemia that are most common:
Daniel has no nursing needs.
Daniel receives physical, occupational, and speech therapy as part of his Individualized Education Program (IEP) at Valley School. The goals of these therapies are listed in Daniel's IEP, which is in the file cabinet in the garage. Dr. Mia Leslie of Valley School is his case manager and can also retrieve a copy of his IEP.
"Take what you like and leave the rest." This is a slogan used often in the 12-step meetings (those meetings which address addictions.) It's a great slogan.
There are few rules when it comes to writing your Letter of Intent. In fact, pretty much the only rule is, "Get started!" Beyond, that, you do not have to write your Letter of Intent as thoroughly as the sample shown here.
It's much more important for you to discern what is dearest to your heart about your child—the facts which you would want her caregivers to know, in the event that you are no longer able to take care of her yourself.
Therefore, rather than find these newsletters overwhelming, regard them simply as a nudge to do something. In other words, take what you like, and leave the rest.
Feel free to give out copies of this newsletter and our sample Letter of Intent to friends and special-needs professionals. We only ask this—if you know of any disability-related web site that might like to link to us, would you recommend our newsletter as a worthy link?
The link is: http://www.betterwaypress.com/lifeplanners. You can even e-mail the link right now to someone:
Thank you.
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