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Frequently Asked Questions About Miscellaneous Topics
Should you inform the school system when your child is diagnosed?
While this is a personal decision, it is a good idea to inform the school of your child's diagnosis. If personnel at the school don't know what is going on with your child, they will not be able to help. If your child needs special accommodations in school, the school will need to have some information. You can request a letter from you doctor that explains your child's diagnosis.
What accommodations is my child entitled to under the law concerning school?
Children with “special health care needs” that are chronic in nature are entitled to special accommodations from their school district (this agreement between the family and the school is called a Section 504 plan, or a Chapter 15 service agreement). If you think your child needs extra support or accommodations, call your school principal. Some school districts will ask that you write a letter to the principal explaining what your child needs. Visit the Education Law Center's publications page and scroll down to "Fact Sheets" to find sample letters to request a 504 plan, sample 504 plans, and more information.
How do I assure my child's needs are met in school?
Talk with school personnel and let them know what is going on. Some schools will be cooperative and make accommodations as needed. It's always helpful to set up a 504 plan with the school. Read more about 504 plans here. If your child needs special education, he or she may be eligible for an IEP, or individualized education plan. Read more about IEPs at the Education Law Center's publications page.
From whom do we get an excuse if our child cannot participate in gym or misses school due too being in the hospital?
If your child is admitted to the hospital, notify the school. Before discharge, make sure to ask your child's nurse for a school excuse. Ask the child's doctor if your child has any restrictions when he or she returns to school. If so, ask the doctor to provide a letter outlining these restrictions.
If your child has NOT been admitted to the hospital but is missing gym or school days, call your doctor's office and ask to speak with the nurse. Let the nurse know how your child is feeling and why he or she is missing school or gym. After the nurse discusses this with your child's doctor, they can provide a letter to you that you can provide to the school. If you would like the letter sent directly to the school, you must fill out and sign a "Release of Protected Health Information". Mail or fax this release to the doctor's office. Please call the office if you have questions about filling out this form.
My son/daughter has RND (reflex neurovascular dystrophy) and is entering college in the fall. How do we prepare for this step?
Help your child become more independent with his/her care. If your child has been through a therapy program, he or she should know what to do in terms of exercise and what to do in case of a flare. You should not need to remind your child to practice his or her exercises or remain active. Have your child call to make his or her own appointments, and allow him or her to see the physician alone, at least for part of the visit. If your child is seeing a counselor, they should discuss this transition. The counselor may be able to help find a counselor near the school so your child can continue with counseling. When looking at schools, look for offered activities and ways to stay active.
Who do we contact at the school she will be attending?
Contact the school's disabilities counselor, who most likely will need a letter stating your child's diagnosis and any special accommodations he or she may need. The counselor also can notify professors for missed exams or classes due to doctor's appointments or medical issues.
Are there ways to make this transition easier for my child?
The transition from high school to college is hard for any child. Encourage your child's independence but remain supportive. Talk with friends who have had children go off to college — sometimes this transition is harder on the parents than it is on the child!
How can I find out if my child qualifies for PA Medical Assistance?
Some children with chronic illness may qualify for medical assistance based on their diagnosis (regardless of their parents’ income) through a program called the Medical Assistance Loophole (or MA Loophole). The Pennsylvania Health Law Project is a nationally recognized expert and consultant on access to health care. Review their publication on the MA Loophole (PH-95) to see if your child will qualify for medical assistance based on his or her diagnosis. For more information, call your rheumatologist’s office and ask to speak with the social worker.
How do I apply for Medical Assistance?
Applying for Medical Assistance is a lengthy process. Contact your local county assistance office to get started. You can also apply online; however, it might be best to apply in the office with a caseworker. If you apply in the office, your caseworker can spot missing information, which could cause your application to be denied if you apply online. It is also helpful to have your caseworker’s contact information in case you have questions while your application is being processed. If you apply online, you don't have a specific contact person. Some county assistance offices will ask that you apply for SSI (supplemental security income). While your child likely won't qualify for SSI, a denial letter from SSI is needed for your medical assistance application. If you child does qualify for SSI, he or she will automatically get medical assistance along with a monthly cash benefit.
What are the best exercises for JDM patients? How often? What about nest winter exercises when it is cold?
Low-weight, high-repetition total body exercises like walking, swimming, riding a bike, and stretching are the best exercises for patients with dermatomyositis. As far as the winter is concerned, stretching, walking, climbing stairs, and using a heated pool or warm bath are important to warm and loosen joints.
As patients grow and gain weight, how do you determine if medication should be increased?
If a child feels well and the exam is normal, we might just leave them at his or her current dose of medication. If the child is not doing well, than we may want to increase the medicine dose.
Is there an approved eating plan for SLE patients?
There is not a scientifically recommended "lupus diet." In general a well-balanced diet is recommended. If a patient is taking prednisone, we want him or her to watch salt intake and fat intake.
Can patients be active in sports such as soccer or gymnastics that are harsh on the joints?
We try to avoid putting any limitations on the kids. If their arthritis is under good control, than they can do anything. If they are having joint pain and swelling, than it is probably a good idea to stick with non-weight-bearing activities (swimming, biking) until the arthritis is better controlled.
When a child who is seen by Rheumatology has a fever, at what fever or body temperature do we call the office?
Any temperature of 101 or higher should be evaluated by the primary doctor. We also like to receive updates on the status of your child
What can I do if my child gets nauseous BEFORE I give her a shot?
The Behavioral Health Service has a counselor who works with kids on relaxation and distraction if they get sick prior to getting medicine. Call 412-692-5589 and ask for Dr. Noll.
Can I get a copy of blood lab results?
If you would like a copy of the lab results, just notify our office and we can mail them to you.
My child will be 18 soon. At what age should my child see an adult rheumatologist?
18-23, depending on the discussion your child has with your physician.
What vitamins should my child take?
If your child is getting a well-balanced diet, vitamins are not mandatory. Otherwise, a multi-vitamin is recommended.
Are all vaccines safe for the Rheumatology patient? Which are not?
If a patient is taking medicine that lowers the immune system, than we would like him or her to avoid "live" vaccines. These would include varicella (chickenpox) and MMR (measles, mumps, and rubella).
My sharps container is full, and we aren't due for a visit. Is there any other place I can drop it off?
Call your pediatrician's office. they should be happy to dispose of the sharps container for you.
We are going on vacation and will be flying. How can we pack our child's injection medicines and get it through security?
Call your airline's customer service number in advance, and they can advise you as to what you will need to do. Always keep medication and supplies in your carry-on, never stow it in luggage whether traveling by plane, bus, or car. Keep medication/syringes in purse or carry-on luggage. All medication should be kept in its original container so that the pharmacy label is with the medication, which will specify the medicine, dosage, directions, and the prescribing physician's name and phone number.
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July 5, 2013
July 5, 2013