No mother of the year for me
I have so many questions and so many things to vent about. My daughter is 15 and has recently been "diagnosed" with lupus. I have suspected for years that something has been wrong but could not get a Dr. to listen to me. (Sound familiar?) During bloodwork last year during a flare up, she tested positive for autoimmune, and hypothyroidism. She was also diagnosed with rheynauds syndrom quite a few years ago by her old family doctor. Her reumi wanted to wait to treat and referred us to an endo. The endo started her on the thyroid meds and she is now on 75 mcg. Thyroid has been great for about 5 months now. During testing by endo, her platelets were low (75). Testing was redone and platelets remained low. Saw a hemotologist, who said, no need for treatment, but ordered more blood work.
Here comes the mother of the year part - I took her on a 12 day cruise to Hawaii. I was not aware of the photosensitivity issue, and boy did we over do it in the sun! Lots of sunscreen, but still spent many hours in the sun each day. She did great until we got home. The following day she had a flareup. I felt horrible when I found out that it may have been the sun exposure. But, what are you gonna do? Its in the past now.
When I called her rheumi about the flare up, I asked if he had recieved the report from the hematologist, he had not and was upset that she now has a third complication from the autoimmune and set up an appointment for us to come in this week to discuss treatment. He says that he is worried that if we do not start treatment now, her kidneys and/or lungs may be next to be affected.
I am very concerned about treatment. DD does not react well to steroids (she has been on them previously for asthma). I discussed with rheumi in the beginning that the only time I would agree to steroids is if it is a life threatening illness. I have lots of questions for him this week, but am interested in anyone elses experiences with treatment or lack of.
For years she has seemed to have a flareup in spring and usually one toward the end of summer or early fall. Other than that, her daily symptoms are fatigue, and muscle and joint pain. I am just learning about this so there may be more that I dont realize at this point. Thats another thing. There seems to be so many factors to the autoimmune process, its hard to figure out what may be related.
Thank you for listening. Any opinions or help would be appreciated while I try to figure this out. Also, if you have any questions that I should ask the doctor that would be great too. Its hard to ask questions when your not sure what you are talking about. :?
I only have a second, but I saw this post and wanted to reply.
The first thing you can do for your daughter (and you) is to lighten up on yourself. This was not your fault. In fact, a trip like that sounds like heaven and she probably got in a lot of relaxation time that she sorely needed. You have been following up with doctors and doing everything possible to get the proper care for your daughter. Flares can happen for many reasons, so don't pin the blame just on sun or whatever--it can be a combination of many things, or something totally unrelated to the sun.
With me, if it's the sun setting me off, I know within a few hours... I get this horrible rash on my face--all over, not just in the butterfly pattern-- and my skin burns within minutes.
Keep up what you are doing. Maybe you can introduce her here on the boards, so she can get some first-hand interaction. I know that I had autoimmune symptoms way back when I was a teenager, but my mother told me it was in my head... so I ignored these symptoms until they "took over" at age 32.
Your daughter needs you to keep that positive attitude, not beat yourself up. Remember, teenagers and kids tend to blame themselves for mom's stress... lighten up Heck, even in the midst of a flare, I'd go on a cruise to Hawaii! Lucky daughter!
Please don't feel bad about the trip - there are many things that can cause a flare, and it might easily have happened with or without the sun exposure. And I'm sure you and your daughter enjoyed the trip!
There are a number of treatment options available for lupus, and most doctors now try to minimize the use of steroids, or avoid them altogether if possible. In lupus, the immune system is hyperactive, so the goal of treatment is to slow down or turn off the hyperactive immune response. Treatment can include antiinflammatory medicines like NSAIDs, steroids, antimalarial drugs such as plaquenil (which are also used to treat arthritic conditions), and immune suppressant drugs. Lifestyle changes - healthy diet, plenty of rest, avoiding sun exposure, and managing stress - are also important.
Your doctor will probably want to do tests to be sure that your daughter does not have any organ involvement. These tests could include blood tests, urinalysis, x-rays, ultrasound, and possibly, invasive tests like biopsies. Since testing depends a lot on the individual patient's symptoms, it's not really possible to know exactly what tests will be needed.
With her low platelets, the big concern in spontaneous bleeding. If she participates in sports, she could also be at higher risk for bleeding under the skin or into the joints. So this is something you might want to bring up with her doctor.
I know this is a really frightening thing for you to be facing. Bit the important thing to remember is that, with treatment, most people with lupus will lead fairly normal lives. As you learn more about your daughters disease, you will be able to identify triggers and patterns to her flares, and hopefully be able to minimize them.
I would really recommend buying a couple of books about lupus for your daughter to read. It's going to be important for her to learn as much as she can to manage the disease. One excellent book is The First Year - Lupus: An Essential Guide for the Newly Diagnosed (by Nancy C. Hanger, Elena Massarotti ). It is informative without being overwhelming. There are a number of books available - please let me know if you want a list.
A lot of us are moms too - so we really understand your concerns and fears. Please know that people are here anytime you have questions, or just need some support.
Hey, I reckon you sound like a great mum! Your support is what your daughter needs most and best intentions make up for mistakes!
They'll be lots of mistakes a long the way - you're both learning about a new disease that is really quite a mystery. If you're there during times of need then that Mother of the Year Award should definately go to you!
Unfortuantely, during my experiences with my step mom doctors dont take patients with lupus very seriously although it seems its getting better with time, The best thing I have fuond to do is remain patient keep a journal of all the stuff thats happenign to her and on what days and bring it in to all your doctors this will help them to realize you want to be taken seriously. Also know that this is a frustrating disease to dea wth since there is so little info on it. So Keep your head up and dont beat yourself up she probably lovedthe vacation and itwas probably a much needed break from all the other stuff sh has going on right now.