Lupus has ultimately left us with more questions than answers during Lupus Awareness Month in the UK. CelebMix Cares has been researching Lupus for a whole month to try and shed a little light on this brutal disease. During our research we have found a lot of information on adults with the chronic disease but we haven’t found many personal stories of just how families cope when those families have children with Lupus.
Children with Lupus is not unheard of, according to Lupus Research Alliance (formerly SLE Lupus Foundation)
“Of the more than 1.5 million Americans with this serious chronic illness, an estimated 5,000 to 10,000 are diagnosed under the age of 18.”“Approximately 1 in 3 children with lupus have mild disease, but most have a moderate disease that may be severe at times, but usually responds well to treatment. With proper diagnosis and treatment only a small number of children develop severe and life-threatening lupus”
CelebMix Cares has contacted three families to talk about how their experiences impacted family life when they discovered that their child has Lupus. Carry on reading below to hear about Cathy’s experience when her daughter was diagnosed with Lupus.
Tell us a little bit about yourself:
I worked as an office manager, but I stay home now. I like to quilt, bake, garden & the family likes to go camping and four wheeling, we also like to ride bikes.
What type of lupus does your child have?
She has the kind that affects her organs or can affect any part of the body – Systemic Lupus Erythematosus
How old was your child when they were diagnosed with lupus?
She was 12 when diagnosed and she will be 21 in December. I have been tested, but they just tell me something is going on but can’t say it’s Lupus.
What made you suspect your child could have lupus?
I knew that something was wrong with my daughter she was always complaining that her hands, feet, legs etc. hurt. She would wrap them in wet washcloths, then she started loosing weight and we went on a trip she got a bladder infection and she had these blister’s appear on her arm. When we got home I wrote all of her symptoms down with all of the family medical history, the doctor thought I was crazy. The list was three pages worth of info and symptoms. I the doctor that I wanted her to be tested for Lupus and also for the rest of the medical conditions that run in the family. My mom had Lupus, besides a lot of other health issues.
That doctor ran test two different times, he told me it wasn’t Lupus and that if she didn’t feel better by November to bring her back – this was in the first part of August. In September she still wasn’t feeling well and she wouldn’t eat one night, so I called the next day and told the doctor that I wanted her to go see a heart specialist (she had heart issues when she was born) I needed a doctor’s referral so we went back in to see the main doctor here to get the referral. He listened to her heart went out to his office came back asked if we could go to Albuquerque, which is three hours away as we live in a small town. I said yes I don’t know what he heard when he listened to her heart but it must have been something because he called the other doctor himself. We went to Albuquerque and the heart doctor ran tests, he came out and asked us if we wanted the good or bad news first? He said all her heart conditions had fixed themselves – the heart conditions she was born with – but the doctor had to admit her to the hospital because he thought she had Leukaemia, Lupus and I don’t remember the third diagnosis. I figured it was Lupus like I had her tested for it before. I don’t think that doctor knew what he needed to look for. She was in the hospital for 2 weeks, it hit her heart, pancreas, kidneys & liver. She had protein coming out of her urine instead of the kidneys filtering it out so her legs and her body were swelling. They started her on chemo to help get the Lupus under control and we started trying to find out what was going on with her around the first/middle of August. She was in the hospital in October and she came home Halloween. Before we knew what was wrong, but if I hadn’t insisted on going to a heart specialist I don’t think we would have her.
Does your child go to school? How do you work around school and lupus?
She was out of school until around the first of the year if I remember she went back in Jan sometime before that the school worked with us and we picked up her school work. It took awhile to get the Lupus under control after she went back to school & the swelling started going down. Her back was hurting so we took her back to the hospital and had X-ray’s done, she had compress fractures in her back. So then we had another doctor to go to and more medication. I didn’t work after she was diagnosed because the doctors were a three hour drive one way and we were going at least once a month sometimes more – sometimes they scheduled the appointments so we did them in two days. Before, when she was still doing chemo, the doctors would all come to us which made seeing all of them easier but when she was done with chemo we had about six or seven specialist doctors to go visit.
They have the Lupus under control now and my daughter has done very well, the first of this year she had shingles and she had to be off work for almost a month but, other then that, she has done good and she has two jobs at one time.
What are the biggest challenges to deal with as a family while having a child with lupus?
When she was first diagnosed the biggest challenge was money because of all the expense for medication and traveling so much to go see the doctors and the co-pays etc. We were always going to doctors somewhere, thank goodness I was able to stay home and do that, I am sure a lot of people aren’t able to do that. Money was tight but we made it work. I would also have to say that not being able to talk to another parent to know how to help her cope with everything that was going on was challenging. You see during this time when we found out she had the compress fractures in her back, my mom passed away, so I was also dealing with that. It was hard to know the right things to say or how to help her, I tried to find information that would help but at the time but I couldn’t find any. I have since found things that tell of different stages that the person goes through, I do believe she went through them but at the time I didn’t have that info.
Do you have any advice for parents who suspect their child has lupus or advice on how to cope as a family?
As for advice to other parents – if you think something is wrong with you child keep going to doctors until you find out what’s wrong and listen to your gut, I knew something was wrong with my daughter even though the doctor told me it was just her age and she was fine. You know your kids better than the doctors do. As far as coping with it get all the information you can and the support groups on Facebook and the internet are wonderful tools. Take time out for yourself, I wasn’t able to do that and started having health issues, probably because of the stress. I would also say to listen to your kids if they complain about something don’t brush it off as growing pains or that they are whiny. One thing I have learned with my mom and daughter is that the pain tolerance is a lot higher than most people and when they complain they have a reason also, they won’t always let you know they aren’t feeling good so watch their body language, moods etc. Do things for them and help them when they are having a bad day. My daughter is very independent and doesn’t always want help, try not to over mother them even though that’s what you want to do to protect them. We also changed the what we eat and try to eat healthy and of course follow the doctors orders and take the meds.
I do know it’s totally different having a child have it than having a parent have it. I didn’t see my mom go through all the emotion’s when she was diagnosed with it like I did with my daughter so seeing it both ways has been interesting.