الأربعاء، 30 مارس 2011

what do i do now?

The reaction to a diagnosis of periodic paralysis may be relief, shock, grief, despair, or any combination of emotions. It takes time to adjust to a chronic illness. Long cherished plans and dreams may have to be abandoned, some temporarily, others forever. For a time it may seem that the dominant focus in one's life is periodic paralysis, but as the news sinks in and adjustment comes a new balance can be achieved. The fact that one has a chronic illness is eventually assimilated and the necessary adaptations are made.

As the patient becomes aware of his own personal pattern, and learns to work within it, life is not so constricted. Physical limitations can usually be worked around or planned around, though most periodic paralysis patients have to live with some amount of physical disability.

Grief For Old Self

Symptoms of periodic paralysis often develop rapidly, and one morning you awaken unable to move. The contrast between before and after is sharp. The diagnosis may be devastating, like the sudden and unexpected death of a loved one. For a patient who has episodes for years without understanding the reason the diagnosis (at last!) may initially come as a relief, but when that sense of relief fades there is still a sense of loss.

The new patient may feel as if they are riding an emotional roller coaster. This is to be expected. The formerly reliable body has assumed a new and unpredictable aspect. There may be a change in roles when a wage-earner or homemaker becomes partially or totally dependent. The side effects of medications may include pain or discomfort. All this would be stressful for a healthy person to deal with. It is even more difficult to cope when in the grip of illness.

Patients often go through a grieving period similar to that associated with other kinds of loss. And, as with any loss, grief must be worked through before the integration of this new aspect of the self can occur. Some people will not allow themselves to grieve or will not acknowledge their grief. But grief is a natural process, a kind of journey, during which one comes to terms with life. Grief follows a recognized pattern which has five stages.

Stage 1: Denial

An emotional numbness descends after any significant trauma. For a time the person may not feel anything at all, may deny that anything is wrong, or deny that what has happened has affected them deeply. This denial may be emotional, verbal or physical, as in the patient who refuses to slow down and rest, but continues to push from one crisis to another.

Stage 2: Anger

Why me ? a patient may ask. I've never been sick a day in my life! Anger is sometimes directed at the doctor, the hospital, the medical establishment, family, friends, God, the family dog or any other nearby person or object. It's helpful to realize that this anger has its roots in frustration, disappointment, fear and emotional pain. Even when we are angry it's appropriate and necessary to let those around us know that they are not the source of our anger.

Anger is something we must take personal responsibility for, and work through. It's been taught for years that we shouldn't hold anger in, that it's better to let it all out. But new evidence has proven that just the opposite is true. By following patients with implantable cardiac defibrillators (ICDs) cardiac researchers have learned that expressing anger is a potent trigger for heart attacks, unstable heart rhythms and strokes, which are increased risk factors in some forms of PP. But for everyone, even unaffected people, studies now show that angry outbursts put people at risk for life-threatening cardiac events.

Since cardiac disease is the nation's number one killer most of us are potential cardiac patients. Living with unresolved anger is like living in a cage with a tiger. If you have anger issues and can't handle them on your own find an experienced counselor who can guide you.

Stage 3: Bargaining

Bargaining generally doesn't last long, and may merge into the first and second stages. The futility of trying to bargain one's way out of periodic paralysis is quickly apparent to most people and is soon abandoned.

Stage 4: Depression

Depression may arrive when we fully realize that this illness may cause long-term changes in our lives. We mourn the loss of our healthy self, and ambitions, dreams and opportunities we may have long held dear.

Depression can range from transient sadness to the total deep freeze of dysfunction. The depressed person may literally cry over spilt milk. Depression of a minor nature may not interfere with day-to-day function, but it may make life seem dull, worthless and miserable. Serious or major depression may include a number of symptoms which signal that professional help may be needed.

1. Change in sleeping patterns sleeping far too little or too much.
2. Mood alterations which go on too long in relation to the cause.
3. Listlessness, lack of interest in things that formerly gave pleasure.
4. Inability to concentrate.
5. Eating too much or too little.
6. Inappropriate feelings of guilt.
7. Suicidal thoughts.
8. Feeling of worthlessness.
9. Loss of interest in sex or inability to have sex.
10. Lack of energy which increases over time. This can be misconstrued as weakness and lead to an increase in doses of Prednisone, which can worsen the situation.

If a person has more than one or two symptoms of depression for a period of more than two weeks it is time to seek help. Prednisone can cause mood changes, including irritability, insomnia, mania1 and depression, and if these side effects appear they need to be addressed.

Should a person threaten or talk about suicide, or appear to be contemplating suicide, medical help should be sought immediately. The family physician may be able to give appropriate advice and guidance, but studies suggest that family physicians often overlook depression in patients. If the family physician is hesitant seek help from a mental health agency or professional.

Mild depression forces us to stretch our limits and it can be a useful prod. It may make us look for alternate solutions simply because it is such an uncomfortable and miserable state of mind. Severe depression on the other hand may cause such apathy that the patient cannot marshal the force of will required to shake it. If depression is taking too long to resolve it may take professional help to affect the change from negative to positive, but it can be done, sometimes more quickly than thought possible. If medication proves necessary the new antidepressant medications are excellent and have far fewer side effects than older medications did.

Stage 5: Integration

When we have taken stock, evaluated what is left, and have determined to do the best we can with what we have, we have adjusted. Old dreams may be replaced by new ones, but these can be as much of a challenge and ultimately just as satisfying. Options may have narrowed, but while reevaluating our lives we may discover opportunities we never dreamed of before.

Every patient goes through a period of adjustment. The time it takes to adjust will vary according to the individual. Some people are resilient and bounce back quickly from the stresses of life. For others it is more of a struggle.
Joining a support group composed of other patients may help the newly diagnosed patient understand and come to grips with the disease. Even if you aren't a joiner by nature it's comforting to see others coping successfully with PP. These groups also give one the opportunity to compare attitudes and coping methods, because while every individual must develop their own, it helps to see what works best for someone else.

Basically there are two ways to cope; positively or negatively. Positive methods of coping reduce anxiety, bring peace of mind and restore the patient's inner equilibrium. Negative methods cause or reinforce anxiety, isolate the patient emotionally and induce stress.

Coping Strategies

Some Positive Methods of Coping Include:

1.Seeking Information
It's human nature to fear the unknown. Most patients want to know as much as possible about the disease. It's also helpful and of great emotional support to know how other patients manage. Information and peer support can be found through PP support groups on-line.

2. Spiritual Consolation
Gaining strength from one's spiritual values, prayer, faith communities, meditation and a belief in a benevolent Higher Power or greater purpose.

3. Positive Thinking
Remaining optimistic, and refusing to give in to the blues. Changing one's thoughts when they become sad or fearful.

4. Talking it Out
Verbalizing concerns, fears, anger with family, friends and other patients, seeking professional help when needed.

5. Recognizing Limits
Seeking to maintain a realistic level of independence while accepting the fact that some dependence on others may be necessary.

6. Maintaining a Strong Social Network
Close ties with family, friends and a strong support network are vital to both emotional and physical health. Helping others who may have just been diagnosed or are having problems adjusting is also a healthy coping mechanism.

7. Physical Adaptation
Maximize physical capabilities by analyzing the daily routine, and adapting it to conserve energy. Learning to rest when needed, rather than push beyond your capacity.

Among Negative Methods of Coping Are:

1. Denial
Denial can take several forms, denying the diagnosis, non-compliance with treatment, or pushing the body too hard. There is a difference between saying, I'm not going to let this get me down!, and I'm not going to give in to this disease an inch! It's healthy to do as much (or sometimes a little more) as one can. It's not healthy to consistently demand more of the body than it has to give.

2. Blaming
Bitterness or anger towards oneself or someone else is not healthy. Sometimes people feel they have become ill because they were bad, or that their worth as human beings is diminished by their illness. If we look around we see that illness is part of the human condition and we are not the only one dealing with it. Moreover, anger, bitterness or guilt interfere with the process of adjustment and may weaken our ability to heal.

3. Focusing on Illness
Allowing the illness to take over and control the entire life, letting it become the main focus of the thoughts, feelings and conversation or the only factor considered in decisions.

4. Withdrawal
Isolating oneself socially, giving up friends, interests and activities unnecessarily.

5. Depression
Sinking into apathy, sleeping too much or too little, engaging in obsessive behaviors, giving up on life.

No one copes well all the time

It's unrealistic to expect a person with a chronic illness to always be upbeat and optimistic, but when a person is having difficulty coping a lot of the time it is useful to look at the attitudes that characterize those who cope well and poorly.

Generally Speaking People Who Cope Well:

1.Are realistically optimistic about being able to cope with or solve their problems and generally maintain a high level of morale.
2.Are practical, ready to tackle immediate problems, rather than postponing action or wishing and waiting for some magical future solution.
3. Formulate a backup plan in case the current approach fails.
4. Project the consequences of their actions, reasoning from cause to effect.
5. Listen to suggestions, but retain the right to make their own decisions.
6. Tend to be emotionally stable, avoiding emotional extremes that might impair their judgment.
7. Are able to ask for help when they need it.

People Who Cope Poorly:

1.Tend to have unrealistically high expectations for themselves and find it difficult to compromise or ask for help.
2.Tend to be intolerant; see only in black and white.
3.Tend to deny and rationalize to an excessive degree, rather than face the problem at hand.
4.Find it hard to see and weigh alternatives, and postpone making decisions until a crisis, which may worsen the situation.

These people are not necessarily ineffective in dealing with everyday life, but their inflexibility and lack of confidence hampers their ability to cope in difficult times.

What's Going Right?

When we are under extreme stress there's a tendency to feel that everything is wrong when there are areas of life that are stable, Recognizing and drawing strength from these sources is an excellent coping mechanism.

Coping from the Inside out:

One way to cope with stress is to turn down our reaction to it. One way to do that is through meditation. Meditation has been practiced in cultures all over the world for thousands of years. It's now being used with increasing frequency by western physicians and health care organizations to treat a diverse range of medical conditions.

The purpose of meditation is to calm the mind and restore a sense of quiet. When the mind is quiet the body can restore the delicate chemical, hormonal and electrical balance that promotes health. When a person is under stress the blood pressure rises, the heart rate and respiration quicken. The immune system becomes less able to deal with invasion and more prone to self-destruction. Blood moves from the skin, hands and feet into the large muscles and vital organs.

When you're stressed your ability to think on your feet tends to vanish because the tiny capillaries in your brain clench down. Thus the blood supply to your brain, with the oxygen and nourishment it carries, is diminished during periods of stress while blood is channeled to the large muscles and heart. In many people stress is a chronic state and a significant contributor to disease states.

There are many ways to reduce stress. Exercise and vigorous physical activity are often promoted as stress reduction techniques. Unfortunately vigorous exercise is not an option for most people with periodic paralysis. Even gentle exercise regimes like yoga and tai chi can be too strenuous for some patients.

One proven way to reduce stress which all patients can practice, regardless of strength level, is meditation. Over the last 25 years a whole field of investigation has grown up around the practice of meditation. It is now known that the stress response in the brain is marked by low amplitude, high frequency beta wave patterns. Meditation induces just the opposite effect in the brain, and is characterized by a state with high amplitude, low frequency alpha and theta rhythms.

Harvard University professor Herbert Benson, MD began studying meditation over 30 years ago. He soon proved that meditation can be practiced independently of any religion. The benefits of meditation are available to anyone who is willing to invest 20 minutes of daily practice. It is the practice, and not the religious intent, that brings about what Dr. Benson called the relaxation response. Dr. Benson has documented the uniquely altered quality of the meditative state; it's not like sleeping and not like being fully awake. Deep meditation is characterized by distinct changes in metabolism, heart rate, respiration, blood pressure and brain chemistry.

There is significant data that meditation can enhance healing, says Saki Santorelli, director of the Center for Mindfulness in Medicine, Health Care and Society, University of Massachusetts.

So far, none of the hundreds of studies on meditation have looked specifically at periodic paralysis. However, stress is associated with higher adrenaline levels, which triggers episodes in PP and worsens symptoms in most chronic diseases. Many studies have shown meditation can significantly lower stress, chronic pain and anxiety.

Picture a small stream in a forest which a deer has muddied while wading across. Within a few minutes the mud, leaf litter, and debris which was stirred up by the deer has either settled, or has been swept away, leaving the stream clear. Now think of your mind as that stream. While sitting in meditation you allow your troubled thoughts, feelings and daily stress to settle or flow away, leaving your mind clear.

Meditation involves using any number of awareness techniques to quiet the mind and relax the body. Concentration practices and mindfulness meditation are perhaps the best known. These techniques focus on the silent repetition of a word, phrase, sound, or your own breathing. When attention wanders, it is gently brought back to the focus of concentration. Meditation allows you to respond rather than simply react to situations in your daily life. Meditation can also be used to get you through unpleasant or lengthy procedures. The ability to meditate can be invaluable at such times.

Meditation is simple to learn, but not easy to practice. It takes discipline to remain still and focused, physically and mentally, for the 20 minutes of daily practice required. But this repetition and stillness are at the core of meditation and the source of its many benefits.

How to Meditate:

Choose a quiet spot where you will not be interrupted. If you have a timer, set it for 10 - 15 minutes.
1.Sit quietly in a comfortable position. This can be in a firm but comfortable chair, or even lying down if you are unable to sit up. But the spine should be straight. Those who need to use a chair should sit upright with their feet touching the ground with the palms of the hands resting on the thighs.

2. The eyes should not be closed but the gaze should be focused downward to rest a couple of feet in front of the nose. The gaze is soft. The object is to reduce sensory input as much as possible.
3. Take several long, deep breaths. Breathe using the diaphragm, the lower belly should fill and expand, not the chest. The breath should be relaxed, natural and quiet.
4. Relax your muscles.
5. Breathe in slowly and naturally, and begin counting silently (or aloud if you prefer). As you inhale count one, and as you exhale count two , as you inhale the next time count three and as you exhale count four. Continue counting in this manner, focusing entirely on the breath and the count until you reach 10. Then begin again, counting to 10 as you inhale and exhale. If other thoughts intrude stop counting and begin again at one.
6. Assume a passive attitude. Don't worry about how well you're doing. When other thoughts intrude, simply acknowledge them, and gently return to your meditation.
7. Continue for your predetermined time.
8. Sit quietly for a minute or so, allowing other thoughts to return. Focus yourself and sit for another minute before rising.

Practice this technique twice daily. Expect it to take three or four weeks before you begin to be able to keep your mind still while you count, and before you'll begin to notice significant benefits. There are many meditation techniques. You may prefer a different technique. There are many books, tapes, CDs and videos available for purchase in bookstores. Just make sure that you are buying one which is consistent with your belief system, if that is important to you. There are also meditation teachers in most towns, so if you want a personal teacher or more information, seek out local resources through community colleges or health organizations.

Life on a Roller Coaster

It's important to cultivate a positive self-image. Even though there may be changes in a person's capabilities to perform certain tasks it's important to remember, I have a body, but I am not my body. Your body may find itself strong or weak, it may be well-rested or bone-tired, but that has nothing to do with your real self. Your body is an instrument of experience and action, but it is only an instrument. You must treat it well, cherish it, and seek to keep it in the best of health, but never mistake it for your real self: You have a body, but you are not your body.

Life can sometimes be difficult for patients and their families. When a family member is blind, an amputee or is disabled in a predictable way, the family knows what to expect from day-to-day. The family knows what their disabled family member can and can't do, knows what help they need, and what they can manage on their own. Unfortunately the nature of the symptoms of periodic paralysis means that abilities vary from day to day. It's often difficult to know what help is needed. Maintaining the balance between dependence and independence is much harder than in cases where disability is consistent.

Unless they are severe, PP symptoms may not even be noticeable to the outsider. The patient may not be strong enough to stand or perform the simplest task and yet may look quite normal. Perhaps, because of the invisible nature of the disease, families tend to forget how limited the strength of the patient can be. Patients (especially mothers) are frequently expected to function well beyond their physical capabilities. Many push themselves beyond their limits. Patients themselves must learn to to do what is possible independently, and ask for help when it is needed.

Though the household routine may need adaptation, every attempt should be made to maintain a sense of normal family life. The patient should be as independent as possible but they should have the necessary support in place for times when they are unable to handle daily tasks.

You Look Wonderful!

It is sometimes disheartening for the person with PP to hear, But you look so well! No one wants to look sick, but somehow it's hard not to feel defensive when it's subtly implied that you couldn't possibly be as sick as you let on. Because those with periodic paralysis do tend to look better than they feel, it's easy for others to assume that they are capable of more than they are. It takes courage, determination and creativity to lead as active and joyous a life as is possible under the circumstances. When energy is in limited supply it's wise to spend it carefully on those things that bring you and the ones you love the most happiness.

Most PP patients can lead normal (though adapted) lifestyles. "Normal" does not mean they will be able to keep up with their friends and family, or lead the life they led before their symptoms began, but it means they are able to live at home, with their families, rather than in a care facility. It may take time and a good many trials to get the right combination of medications, to learn to eat a potassium and carbohydrate diet, and to get symptoms under control. Daily management is the key and most patients experience improvement with good therapy and management and some eventually have no symptoms at all.

It's helpful to remember that many others share or have shared your battle and have won! Attention should be focused on the positives which remain, and not on what has been put on hold or lost. The person with PP may not be able to take their children skating but can listen when they need to talk, which is more than lots of physically active people ever do. It's not what you can't do that makes you the person you are, it's what you do with what you have.

Some Words For The Family

Having a family member with a chronic illness puts an enormous strain on family relationships. Everyone must adjust and learn to cope. Tasks not only must be reassigned and the household routine upset or interrupted, but additional time and energy may often be devoted to caring for the patient.

This may be only an inconvenience if the illness is of short duration, but when the illness is chronic the adjustments may cause serious problems. It is not unusual for marriages to break down under the additional stress of chronic illness, especially when the partner who falls ill is the woman. We have high expectations of ourselves, our partners and of marriage itself. When illness intervenes and it becomes impossible to even approach (let alone fulfill) these expectations, relationships may literally come apart.

While it may not be true for all PP patients, families often expect more of a person with periodic paralysis than they are able to give. Because PP is not highly visible and strength levels vary so much, it is easy to forget how disabling the illness can be. It is hard for the unaffected person to fully realize the enormous amount of effort and self-discipline it requires for the patient to perform even simple daily tasks. The loss of the sense of accomplishment, and the lack of control over the illness itself, cause distress enough to most patients.

Unfortunately, families often add to the psychological trauma by resenting the changes imposed by the illness.
Roles and relationships may change as the family goes through the grieving process and adapts to the reality of the situation. It is important to maintain realistic expectations, ones which allow the patient both support and independence. Some families find this a difficult process and may need to seek outside counseling. It is unrealistic to expect total patience, total self-sacrifice and unconditional acceptance of anyone. There will be good days and bad, times when the household runs smoothly and times of total chaos.

A great deal of satisfaction can be derived from working together to overcome obstacles. Difficult circumstances can bring families closer together. Unfortunately, many of us have not been taught to persevere in the face of adversity. Past generations were brought up to expect a great deal of hard work and very few comforts. They didn't anticipate easy lives. This very attitude helped them through times of hardship and crisis. Considering that life itself is full of challenges, it seems that this philosophy could be as useful to us today as it was to our ancestors.

The expression of mutual support and a determination to see the crisis through can go a long way toward cementing relationships. Family counseling can be a big help in adjusting to the changes that chronic illness brings to a home. It is very helpful if the entire family understands PP and works to minimize its impact together.

Adapted from, You, Me and Myasthenia Gravis; Third Edition; Deborah Cavel-Greant; Ed: MW Nicolle MD, FRCPC, D.Phil.; Ku:Reh Press, 2006, Used with permission, Deborah Cavel-Greant

الجمعة، 16 أبريل 2010

School Accomodation Documents and the Child With Periodic Paralysis

Parents of Children with Periodic Paralysis must work with the school to achieve a plan which will allow their child to reach their full potential. The information below reflects the experiences of children in US schools. We hope it will be helpful to parents, school administrators, teachers, school nurses and physicians as they work together.

There are two formalized ways of working with the school; One is the Individualized Education Plan (IEP) - A detailed description of the educational goals, assessment methods, behavioral management plan, and educational performance of a student requiring special education services.

The other is a 504 Plan. 504 plans ensure equal access to education for students with disabilities. To qualify, a childs disability must adversely affect educational performance and progress, even if the child is achieving good grades.

What do these plan cover? IEPs address the need for physical assistance, academic adaptations, specialized instruction, technology and equipment, and related services like occupational, physical and speech therapy. 504 plans address all the same areas as IEPs, with the exception of specialized instruction.

The educational team includes parents, teachers, administrators and people like physiotherapists, speech therapists etc. An IEP team must meet at least once a year. Changes cannot be made to the plan without the parents OK.

Some Questions and Answers:
A parent asked: Is placing a child on a 504 plan a bad thing from the school's point of view? What are the steps to get a 504 in place?


Schools do not like 504 plans because the special education department (who gets the funding) is not responsible for overseeing 504 plans. The regular teachers and staff are responsible. Some schools may choose to implement an IEP because they get better funding and the responsibility for the student falls on the special ed teacher instead of the regular classroom teacher.

There is no problem with being on an IEP as long as the child is getting their needs met but special education doesn't like to be responsible for accommodations and modifications that can be met in the regular classroom, especially with a student that doesn't have cognitive problems. If a student with PP is put on an IEP, they would probably also qualify under OHI (Other Health Impaired) if there are no consistent cognitive problems.

The question is who is responsible for the paperwork, follow-ups, meetings etc? If your student has frequent absences and needs home instruction, or has cognitive problems due to periodic paralysis an IEP is probably better than a 504. Special education teachers are better trained to meet these needs.

If they only need allowances for snacks, water (or Klor-Con), standing up to stretch, resting when necessary, etc. these can be handled by a regular classroom teacher so a 504 is fine. A 504 Plan is implemented with a doctor's diagnosis and request for accommodations or modifications, where implementing an IEP usually requires that the student go through the series of cognitive tests. Unless the child is having weakness most PP students will pass these tests with no trouble. Don't let them refuse you due to not passing IEP testing. They may not test for cognitive problems which is fine. But they should be made aware that the child's cognitive problems may not be apparent unless they are experiencing potassium fluctuation at the time of testing. If your school wants to go with an IEP instead of a 504 it is not a problem as long as the special education teacher goes into the regular classroom to monitor to ensure that the accom./mods are being met.

If your student has episodes that last for days and is missing a lot of school, you may want an IEP so you can request home instruction. You should not be paying for tutoring. There are legal limits on failing students with special needs.

Every district has a maximum number of days a student is allowed to be absent before going on the "failure review list". This is a list of students that are brought before the faculty or chosen committee to determine if they should be retained another year. Students that have missed more than the maximum number of days are included on this list.

If the student may be absent more than the maximum amount of days due to their disabling condition, the 504 Plan or IEP should state that the maximum is lifted and failure/passing is determined only on academic accomplishment. This coupled with additional days allowed for assignments and/or length or number of assignments can allow students to pass without meeting the maximum days limit. The length and number of assignments required for passing should be limited to what is minimally required to show mastery of subject matter. (This is referred to as "Couple Days".)

A doctor's note stating that the student may miss days or be tardy due to the diagnosed medical condition is sometimes required. A doctor's excuse should not be required because of waking up paralyzed and getting to school late, and being too weak to get to school should not require a doctor's visit.

Document the date and condition and turn this into the school and doctor periodically to support general doctor's note. If the doctor doesn't want to cooperate see if documenting the date and situation is acceptable to the school.

It's important to make sure that the student is responsible and works their hardest when they can, and there's no perception that the student is taking advantage of the situation, or the Plan will fail.

Question: Can you explain the legal obligation to provide service that an IEP mandates? Are the requirements (for the school's compliance) as strict as with a 504 Plan? I have never felt entirely certain that schools are held to the same stringent requirements with a 504 plan as they are with the IEP. This leaves me feeling very vulnerable as it seems compliance is dependent on the teacher's cooperation from year to year. It is my belief if the school doesn't fully follow a 504 plan there may be no penalties for them - but an IEP may be more binding.

Answer: 504 Plans are under the ADA Act (Americans with Disabilities Act) where an IEP is under IDEA (Individuals with Disabilities Education Act). If the school refuses to comply with IDEA (IEP) you must go through Due Process before going to court, which takes longer. Complaints under ADA can go straight to court. It is actually easier and faster to get action with a 504 Plan than an IEP. Both are federal laws so they must comply.

If schools know that you know your rights you rarely have to go to court. So it is actually easier and faster to get compliance with a 504 Plan than an IEP.

Question: What if I need help getting the school to implement my child's plan?

Answer: There is a website that you can look up contacts for local dispute resolutions for special needs students in any state of the US. Pull up the website and put in your state. CADRE = Center for Appropriate Dispute Resolution in Special Education www.directionservice.org/CADRE


Guidelines for Parents of Children with Periodic Paralysis.

1. Ask your principal who is in charge of writing and approving 504s in your district.

2. Get a doctors diagnosis and the need for student accommodations in writing to provide to the school. Parents may get the best results by writing the plan they want for their child, providing it to the doctor, and asking that they put it on their letterhead and sign it. This can save the doctor a lot of time and avoid the frustration and/or disappointments that occur when the doctor doesn't include all the accommodations that your child needs.

3. Some schools will allow the 504 team, administration and parents to determine accommodations. Some schools will require that this be developed with your doctor and provided to the school.

4. Either way, the parent and doctor should develop a general protocol for the school to follow in case of breathing problems, irregular heart rate, extreme weakness or paralysis.

5. Enter first meeting with documentation and confident yet pleasant attitude. Try to develop a team atmosphere with the 504 team. These meetings can be very stressful. Take someone who understands the needs of your child, and can speak up if you need support. If you have information that you want the staff to review bring enough copies for everyone. This is very important! Do not expect anyone else to make copies for others during or after the meeting. It often does not happen.

Time is almost always limited. Teachers and staff will leave when time is up! Keep any information distributed clear, organized and very concise. Highlight each person's copy if necessary. Prepare a clear written agenda of what must be covered! Organize by priority, most important issue first, second most issue second etc. Also take a photograph of your child which can be placed on the table or passed around, to remind participants that this meeting is about a child's educational needs, not about departmental politics and budgets.

6. Understand that the school has an entire student body, many students and many needs to accommodate but your child deserves accommodations which will allow access to an education that will provide a foundation for future goals.

Here is a list of suggestions that I have advocated for my students or have seen advocated for students to meet the requirements of the IDEA Act. Check the items that pertain to your student and use them as a guideline for negotiations. If documented by physician *cognitive symptoms* may move student into IEP status.

Length of episodes:

Hours: Give ___extra day(s) to complete assignments.

Couple days: Extend maximum days allowed to be absent per district policy.

Abortive Attacks: Home Instruction (taught in your home by district approved teacher). This will usually move you into an IEP status.

Moving between classes: Student who change rooms for classes may need to be dismissed a few minutes early from classes in order to move safely to their next classroom. A classmate, friend or helper may carry books and other materials between classes.


If breathing or heart rate is affected call emergency. Make sure student is in a safe position, place in "coma" position to avoid choking on own secretions. Follow protocol provided by doctor and parents.

Areas of Weakness or Stiffness:___________________

Physical Education Guidelines:
In PE class a child may push beyond safe capacity in order to keep up with their peers. Teacher should monitor the student for signs of weakness, clumsiness, change in color (may become flushed or ashen) and/or shaking.

Student must constantly self-monitor physical activity.
Student may stop activity at any time that the student feels necessary.
Provide alternate PE assignments for activities that cannot be done safely as outlined below.

The heart may be affected when potassium fluctuates.
If pulse is not steady and consistent follow doctor/parent protocol.
If child complains of chest pain and/or shortness of breath follow doctor/parent protocol.

Potassium fluctuations may affect academic function. Some cases of PP are associated with ADD and ADHD, which may become worse when the student is weak, fatigued, overstimulated or hungry.
Potassium fluctuation may produce cognitive clouding and/or labile emotions, child may lose focus, be unable to organize or function as normal. The student may withdraw emotionally and physically (i.e. head down on desk) in order to conserve energy stores and avoid emotional displays, such as tears, which are acutely embarrassing.

Chest and Diaphragm Muscles
Chest muscles/diaphragm can become fatigued causing breathing problems.
Do not require student to sing if they are weak.
Do not require student to do activities that will cause them to breathe heavily.
Do not require students to breathe cold air.

Trunk muscle fatigue can cause problems sitting upright and walking.
Limit required length of walking distance to ____ feet at a time.
Allow students to stop walking when necessary.
Do not require students to sit on bleachers or upright for more than __ mins.

Avoid over use of finger movement.
Allow taping for notes, copy of notes or open notes.
Do not require holding objects for an extended period of time.

Avoid overuse of arm muscles.
Avoid carrying over ____ lbs.
Do not require student to hold arms up above waist high for more than ___ mins.
Provide a set of text books at student's home.
Allow student to keep textbook in classroom if not needed for homework.
Allow students to visit locker at any time to switch materials and supplies.
Sit student in a location where the student can stretch arms when necessary.

Avoid overuse of leg muscles.
Provide classes on one level if an elevator is not available.
Sit student in a location where the student can get up and stretch legs when necessary.
Do not require students to stand in line for more than ____ mins.
Limit required distance or time spent walking to distance ____ or minutes at a time.
Allow students to stop walking when necessary.

Jaw and Throat Muscles:
Overuse of throat muscles can cause swallowing or speaking problems.
Small regular movements but not constant movement is best.
Do not require student to talk for over ____ mins at a time.
Sit student where the student can stretch jaw without drawing attention to self.
Do not require student to sing.
Do not require students to breathe cold air.

Eyelids may become weak or paralyzed.
Drooping eyelids are not indicative of drug abuse.
Drooping eyelids are not indicative of sleep deprivation.
If students eyelids are drooping, ask student if he is getting weak; it could be a sign that the student needs to follow doctor/parent protocol.


Hunger: Allow students to keep snacks at hand (in backpack or desk) and to snack if needed to help avert episode. Type of snack depends on the form of PP the child has.

Dehydration: Students should carry water bottle and be allowed to drink as needed.

Cold: Avoid chilling: Do not require student to be exposed to cold or wet weather for more than ___ mins.

Extreme Heat: Avoid overheating, provide shade, water, limit activity in hot and/or humid conditions. Do not require student to be exposed to temperature over ___ degrees for more than ___ mins.

Exercise: Allow student to signal when they have reached their limit on physical exercise. Watch that student doesn't push beyond capacity in order to keep up with peers.

Rest after Exercise: Watch student after exercise or assign a peer buddy to monitor after exercise in case extreme weakness or paralysis occurs. At first sign of weakness or student's request follow Doctor/Parent Protocol.

Inactivity: Allow student to sit where they may get up and stretch legs periodically if needed. Some children can ward off attacks caused by immobility by chewing gum. This should be discussed and discreetly allowed.

Sleep: Sleep is a strong trigger of episodes, so student may awaken with muscle weakness or paralysis. Arrange schedule so 1st period is study hall or a non-academic class (i.e. art, music) so student doesn't fall behind academically if missed. Do not count the student tardy if the parents notify the school that the student is late due to an episode of PP.

Lack of sleep: Parents should notify school if student had a lack of sleep the night before so the faculty will know it may be a harder day medically for the student.

Stress causes adrenaline release which triggers weakness: If the student becomes visibly stressed back off and deal with the situation in a less stressful manner or after the student is sitting or lying in private in a safe location should paralysis occur.

Medication: Asthma type "puffer" or potassium supplementation are commonly used to abort an episode of paralysis but must be taken immediately upon recognition of first signs of an attack, so provision for these measures should be discussed as arranged with doctor and school.