15 Questions - Back to School with Lupus
1. My daughter is so anxious about school. Specifically, she is concerned with her classmate’s complaints regarding her accommodations for arthritis, such as less handwriting and special grips on her pencils. Any suggestions on how to empower her? Los Angeles, CA
This is a tough situation especially for children and adolescents who really do not want to be different than their peers. First, your daughter should just be upfront with her classmates about why she needs the accommodations. Learning to communicate about her lupus is very important as she is the one who is living and surviving with lupus. Often, I try to have children figure out in one sentence how to explain arthritis or their symptoms so that others can understand. For instance, many kids with lupus are fatigued and have generalized aches and pains - I tell kids to ask others if they have ever had the flu, which most people have and can recall those symptoms. Have your daughter just state that her joints feel like she has the flu- with some days they’re better and others they’re not. The accommodations she has just make sure that she can get through the day just like everyone else. You can also ask your local LFA chapter if they have any people that are willing to come into the classroom to explain the illness and dispel any concerns, worries or misconceptions that people may have of the disorder. Other good resources also are the Arthritis Foundation and the Juvenile Arthritis Alliance, which have brochures and support systems to help guide you through this process.
Lastly, having your daughter see a school counselor or some other neutral party to discuss these worries is very worthwhile. Learning these coping skills and empowerment strategies takes time and work. Often, the guidance of a specialist in the field can overcome the obstacles kids face.
2. My child is 15 and has just been diagnosed with Lupus over the summer. She's a very active kid, involved in many extracurricular activities and sports. Should she continue or should she slow down and lead a more peaceful life, away from sports and with as few extras as possible? What about the photosensitivity and outdoor gym? Should the school be informed of her new found condition? Schaumburg, IL
Kudos for your daughter for being a very active person! Overall, we want to encourage all of our patients to do everything that they possibly can even with lupus. We know that doing these activities is important not only from a physical standpoint, but also from psychological and quality of life standpoint. Having lupus does not mean that you have to stop living! As you already mentioned, DO TELL the school about her condition. They can make accommodations if she needs them such as moving her physical education schedule to less sunny times, allowing her to carry sunscreen or wear a hat if necessary, or even give her extra time if she needs to get from class to class. Without them knowing, it’s hard for them to help you. We advocate being realistic and pragmatic regarding the limitations you may need to set - for instance, if she does not routinely put sunscreen or cover her skin when out doing those activities, she should begin doing so and encourage her friends to do so as well as a general health measure. If the school needs a formal request to get these things done, then a 504 plan may be warranted, which is a legal document created by the school for students with disabilities to assist with instructional services.
3. This year will be my sophomore year of college. I was diagnosed last semester with both lupus and fibromyalgia. Since I live in a dorm, my resources are somewhat limited (i.e. food and access to close medical care), so with that in mind, what are small steps that I can feasibly take to (hopefully) go into remission, or at least make the flares less pronounced? Bloomington, IN
First off, congratulations are in order for continuing your educational goals. Pursuing a higher education can open up new opportunities for jobs that may be better suited to the nuances of living with a chronic condition such as lupus. I hope that you have already contacted the Office of Student Disability at your college. This is crucial for you to obtain services that you may require while at school, which can include priority class selection, priority housing, transportation and even assistance with note taking, career planning, and course scheduling. The most important thing is taking medicines if you have been prescribed if any; organizing yourself to get your school assignments done, exercise, sleep, and eat right; and work on your coping strategies when things get a bit out of hand. Unfortunately, life skills teaching isn’t always a class you can take and usually it is very individualized to know what the right balance is for all the activities you have planned. The biggest thing is learning to recognize when you are getting close to the tipping point and seeking assistance or using your set of coping strategies you have developed to hopefully keep it from escalating further.
4. My son, 16, diagnosed with MCTD in Sept 08. Seems to have flared last 2 years right after school starts. Any advice? He is positive anti-sm, RNP, and ANA. He is on plaquenil and 1x week Enbrel. Bradenton, FL
While going back to school is fun and exciting, the rigors of returning to a typical routine can be stressful especially if the summer has been less structured or scheduled. As you have already recognized there is a pattern to flaring after the start of school, you may want to prepare your son a couple of weeks before school start with beginning to have more structure and a routine so it’s less of a shock for the system. Also, at 16, we know that likely he wants to be more independent and may not be as good about taking medications as when he was younger. We actually recognize this as a very vulnerable time for flare and monitoring his medication intake may be helpful. Also, he may need medicines added just briefly around this time to help avoid the flare such as regular use of a non-steroidal such as Naproxen, especially if there is any change in weather or activity level (i.e. going back to regular PE or doing a sport). Also, as noted above, dealing with stress and trying to not get overwhelmed by school workload and assignments are big challenges.
5. My daughter has lupus, celiac disease and primary immune deficiency. She started 8th grade on August 30th. The second day she was already wiped out, emotional, needed a nap after school and couldn't focus on her school work. It took her over 3 hours to do a math review assignment and she didn't get to her other homework. She has some school accommodations in place, but due to the highs and lows of lupus & fatigue she seems normal to her teachers most of the time and it’s hard to ask/remind them she needs less stress & work without missing any concepts. With that said, I'm wondering how to navigate the school year & teachers, minimize fatigue and help her with evening concentration so she can get through school work and still have a little time for herself -without it being too demanding on myself, also having lupus? Duluth, MN
It sounds as if your daughter needs a 504 plan developed as I mentioned earlier above. If you are also concerned about her ability to understand assignments and there may be some cognitive (learning) issues that are happening, which by the way is not uncommon in patients with SLE, then you may also want to request an individualized educational program (IEP) to see if she qualifies for any extra services to help her with assignments or other learning strategies that the school may be able to offer. Often the IEP will entail some cognitive testing to help determine if there are deficits or areas that need addressing in your daughter’s learning ability. You may decide through these meetings with the school, teachers, counselors, and principal that she would benefit with a reduced course load, focusing on requirements and then seeing if she can catch up with electives or other classes at other times. Schools want their pupils to be successful and sometimes it means taking a non-traditional approach to achieve these goals. As I noted earlier, getting a structure and routine prior to school start will help the transition back into school a bit easier. Often, I liken the situation like trying to get back into shape - you don’t expect to run a marathon your first time out running but by slowly building to that goal, you will get there.
6. My daughter was diagnosed with Lupus in 2007 and has continued to have sores pop up on her head which cause bald spots. I know Lupus can cause skin reactions due to sunlight but can the lights at school cause this? It seems to be worse during the school year. Maybe fluorescent lighting? Memphis, TN
Theoretically, fluorescent lighting could cause issues if the exposure is long and persistent enough. Unfortunately, like the sun exposure, it is pretty difficult to avoid it altogether during daily life, especially in schools. To decrease the UV exposure use of acrylic diffusers, which tend to be used with this lighting can avoid the problems. If there are no covers, see if your school can put some in place in areas she will be at regularly. As noted above, have your daughter start doing the normal routine of using a moisturizer with sunblock to see if this reduces any of the harmful effects. The most important aspect of this is potentially to reapply during the day as needed - I usually suggest some time after lunch to ensure they still maintain blockage. As I stated before, you have to be practical about this and realize you cannot fully avoid every potential exposure that may trigger a flare. If your daughter were to learn another more practical habit, it would be good hand washing and avoiding people who may be ill. If there are still issues about the sores, seeing a dermatologist who works closely with your rheumatologist could provide other solutions - occasionally doing different topical medicines, injections of the sores, or even medicines such as thalidomide or revlimid may be options if skin is the primary problem.
7. My son is 15 years old he is doing great right now all his blood work is good does not have any symptoms of lupus except that his protein level is always high and his creatine is 0.7. What is his chance of reaching remission? El Paso, TX
With regard to the protein in the urine, sometimes this can demonstrate long-term damage from the lupus in the kidney and may not be evidence of active lupus. We work closely with the kidney doctors to help see if we can decrease the level of protein that is spilled through the kidneys using different types of blood pressure medications. Occasionally, we will do a kidney biopsy to see if the lupus is truly quiet from an inflammation standpoint and determine if the scarring from the healing of the kidneys potentially explains the chronic problem of the protein in the urine. In that case, sometimes we feel more comfortable about decreasing medicines to treat the lupus especially if it is under good control, but this is always based on closely following the patient and seeing if there are other signs of the lupus having problems besides the blood work (like heart or lung problems, arthritis, or unusual rashes).
8. We live in Florida and my daughter plays soccer. Along with obvious concerns regarding exposure to sunlight beyond sunscreen what if anything can be done to mitigate effects? Fort Myers, FL
As I noted in question 1 and earlier in 6, being active is really important and it sometimes is difficult to avoid sun exposure to live this active life. My advice always is to be practical about this - Use any protective sun clothing in addition to the sunscreen. Remember to reapply the sunscreen very frequently especially when she is playing. It may be impossible to fix the schedule of practices and games but try to avoid the peak sun times of 10AM to 2pm (probably a bit later in FL). No one wants your daughter to be a hermit or develop vampire hours- it takes some education, patience, and routine building and she potentially do whatever she wants (within reason, of course) outdoors!
9. I have been in college going on two years now. Towards the end of each semester, I seem to have a flare, causing me to withdraw from school. This results in me being further behind. How can I manage the stress of finals where I can successfully finish my semester?
In question 3, I have mentioned items that you should explore at your college/university. Again, seek the Office of Student Disability for guidance- they can best figure out what they can do for you and your situation. If you do not have an accommodating institution, then you may want to consider finding a place that can work with you about how your lupus affects you and your schooling. Sometimes doing a combination of face-to-face classes with some online classes could help balance out the stressors. Talking to the professors at the beginning of the semester may be helpful to outline contingencies of completing school. You need to figure out what class load is most manageable for you and that the timeline to finish school may have to be a different path than others to ensure success. I commend you for your efforts and know that you will figure this out, but it will take much preparation, talking, and anticipation to get this done.
10. Are there any vaccines a child with lupus shouldn't get and how do you feel about the new HPV vaccine? Centerville, TN
Generally, we advocate vaccinations for all of our patients with SLE. The exception usually is if the person is on significant immunosuppression (such as high dose steroids, medicines like methotrexate, azathioprine, cytoxan or mycophenolate), then that person should avoid any vaccinations that are live viruses. Examples are the chicken pox (varicella) vaccination, measles, mumps, rubella (MMR) vaccination, or the nasal influenza vaccination (FluMist).
As for the HPV vaccination (Gardisil), a recent report from Chicago looking at the vaccination in SLE patients did not reveal any increase adverse effects and it seems to be safe. I have been recommending separating this set of shots from the meningitis (Menactra) vaccination if possible just to make sure there are no unusual reactions or ill effects.
11. My son was diagnosed with SLE over the summer and I am so nervous about sending him back to school....mainly because of his suppressed immune system and all the GERMS! Any words of wisdom?
Even if you put your child in a bubble, there are millions of organisms that we can be exposed to or even are already in our system that still could make you sick. Things he should do - learn to wash his hands regularly, especially before eating or after using the toilet; avoid obviously sick people - it is nearly impossible to know who is sick but if he notes someone coughing or sneezing, then he should steer clear; and try not to share foods, personal hygiene items, or even things like cell phones. It is just routine good hygiene practices. While we are concerned about infections, good common sense practices can avoid the majority of problems, and often we are always trying to balance the level of immune suppression to keep the lupus under control without causing significant illness.
12. Is it possible for a 16 month old to have discoid lupus? I’ve read it’s uncommon.
It can happen and yes, it is rare. This is a situation that a biopsy likely needs to be done to prove the diagnosis. The most important thing is to make sure that no systemic findings occur, which usually means being followed by a rheumatologist (preferably pediatric), as isolated discoid lupus in children is pretty unusual.
13. What is the best preventive treatment approach to protect the bones of children with lupus who have to take corticosteroids?
Exercise, which at its least form should be weight bearing (standing) for at least 30 minutes daily. Ensure adequate dietary intake of calcium and vitamin D. Given the fact that most kids do not drink or eat enough dairy products and we are advising against sun exposure for vitamin D, a supplement is usually advisable. Occasionally, medications to prevent bone absorption can be used to help slow the process of bone loss if it is severe but this is not used right away and the above measures needs to be addressed first.
14. I know that lupus affects major organs. What about children with nephritis? How often are children placed on dialysis?
Nephritis means inflammation of the kidneys, which is a more common presentation and finding of childhood onset lupus affecting about 50-75% of patients when compared to adult onset lupus. Sometimes, patients’ kidneys become very inflamed causing the shutdown of the kidneys temporarily requiring a machine to clean the blood and manage the fluids in the body, which is what dialysis does. Occasionally, patients will not recover their kidney function because there is too much damage in the kidney from the lupus affecting the filtering units (called glomeruli), the pipes in the system (called tubules), and the blood vessels. Some studies estimate that about 10-15% of all patients with lupus nephritis develop end stage renal dysfunction requiring dialysis and/or transplant, but newer treatments are trying to reduce those numbers with less toxic effects.
15. My daughter has lupus which has affected her kidneys. She has been complaining of headaches. Are migraine headaches common in children with lupus?
Headaches are not uncommon in SLE, especially migraine-like ones. We are always trying to make sure that it is not related to other causes including medications, high blood pressure, eye problems, or other factors, but sometimes it is just a manifestation of lupus itself. Occasionally we do worry that it can be sign of more serious problem such as a bleed or clot in the brain (stroke) and it does seem that certain patients with antiphospholipid antibodies may be more prone to headaches than others. Treatment varies - for some traditional migraine medications are effective but often strong pain medications such as narcotics do not help the headache.
16. What do you think of CellCept? My 17 year old daughter was diagnosed in Nov 2009. She just got over her first flare. Doing well for about 3 months. Her doctor has been weaning her down from prednisone since Nov. Her Complements are real low again. Instead of increasing her steroids he wants to start her on CellCept. She is also taking Plaquenil. Has CellCept been used very much for lupus? What are your thoughts on this drug? Nicholasville, KY
CellCept or mycophenolate mofetil is an oral immunosuppressive agent used in lupus. It was developed to assist with preventing rejection from solid organ transplant and has entered the treatment options for lupus over the past decade. In adult studies, it seems to be an effective medication similar to one of the most powerful agents used cyclophosphamide to get lupus under control, especially when significant organs such as the kidney or brain are affected. It has a good safety profile and seems to be well tolerated. For pediatric lupus, it also is used quite often with good effect- the only downside is with many adolescent patients, we do know that the adherence to taking the medicine sometimes is not great since you have to take it 2 times daily. As with many medications, we know that they work well only if you actually take them! So occasionally, other options are offered or used to help teens get their lupus under control making the treatment as easy on their lives as possible. We have plenty of patients on mycophenolate who are doing quite well so we do like it as a steroid sparing medication.
17. How does having a kidney biopsy help the physician decide which medication to use? My 17 year old daughter has been referred for one and she has had SLE for 4 years now. Augusta, NJ
Unfortunately, many of our routine blood and urine laboratory studies are unable to reveal the extent and damage that could be going on in the kidneys and the best way to evaluate is to get tissue from the kidney itself and see microscopically what is happening by doing a biopsy. When this gets done, we look at how inflamed (the activity) and how damaged (chronicity) the kidney has been impacted by the lupus. There is a special classification system which incorporates both of the active and chronic findings, and then they assign a number to the classification and also decide if there are lots of signs of activity and/or chronicity. For many children/teens with lupus, they have Class III or Class IV nephritis, which can lead to significant kidney damage, loss of function leading to dialysis and potentially, a kidney transplant. As I tell our patients with lupus in the kidneys, you always want to have your own body parts to do their job so dialysis and transplant are not options we want to discuss if we can avoid it, and the point of treatment is the make sure that is the case. By doing the biopsy, often we can decide if the kidneys can recover from the damage if it is not too extensive and how aggressive to treat. Usually if there is just active inflammation and no scar or damage, we can presume that the lupus in the kidney can be reversed. Sometimes we can be surprised that the classification is less than the findings we see from the urine tests, and other times (more the case for kids with lupus), we see the damage and inflammation are more than what the urine test shows us. As I noted earlier, there are times that we only see scar in the kidney and no active signs of lupus, making us comfortable that the previous treatment was effective and potentially the current treatment is maintaining the patient in this quiet state.