You’ve heard what it’s like to be a friend to somebody who has lupus and you’ve heard what it’s like to be somebody with lupus but what is it like to have a child with lupus? We asked parents of children over a broad age range what it is like to be a parent to a child who suffers with the disease and their answers were…
We talked to Marla, mother of a beautiful daughter was has Lupus. Thank you for talking with us Marla, CelebMix wishes your family the best. Check out her story below:
What type of lupus does your child have?
She has SLE & Lupus Nephritis.
How old was your child when they were diagnosed?
It was two weeks after her sixth birthday, in May 2009.
How old is your child now?
She turned thirteen in May.
Do you also have lupus?
No. She is the only one in both sides of the family that has been diagnosed. I do have an uncle that had the type of lupus that is a reaction to medication (Drug Induced Lupus) , but once he came off the medication he had no more symptoms & that’s been over 20 years.
What made you suspect your child had Lupus?
I didn’t even realize kids that young could lupus. I just knew that something was wrong and there was nothing I could do to make it any better. I saw my sweet girl fade to almost nothing. Every child has that sparkle in their eyes and she always did, until then. Her eyes went completely flat and she hardly ever smiled. It absolutely broke my heart.
How long did it take to reach diagnosis?
Four and a half months.
She’d had her tonsils and adenoids taken out in late January 2009 and within three weeks she was still on the couch saying her legs hurt. ENT said she should have bounced back after a week or so. Her brother is three years older and he had really bad growing pains so that’s what I originally thought it all was. As a professional massage therapist, I would rub her legs to try to give some relief, but it would only last a few minutes, and after another couple weeks I started to notice the heat in her joints but she never had any swelling. So we waited, two months after surgery, she started losing her appetite (though she didn’t really eat a lot before that). She quit wanting something to drink and before she would ask for water all the time, I actually thought she might be diabetic. By late April she had noticeably lost some weight (she was only about 45lbs post surgery) and she was really tired all the time, she started sleeping all the time about twenty hours a day at diagnosis. She couldn’t stand to sit in a hard chair, didn’t have the energy to stand up to shower and to sit in the tub we had to lay a bunch of towels in the bottom. She couldn’t walk up the stairs to get to her room, so we either carried her or she slept on the couch. Mother’s Day that year was just before her birthday and she woke up the morning running the low grade fever. The fever never went above 101F, but it was there. Two trips to the pediatrician, two trips to the ER at our local children’s hospital and she was finally admitted. She only weighed 38lbs. They did a bone marrow biopsy to rule out leukemia (my father passed from chronic lymphatic leukemia in 2004.) Tests came back normal, so lupus was the next choice on the list. Out of the 11 common lupus symptoms, she had 7. We were very lucky that the Head of Pediatric Rheumatology at Emory University was her doctor from the start. He took really good care of her and did what was needed to get her immune system under control.
Does your child go to school? How do you work around school and lupus?
Yes, she has been able to stay in school the entire time. Luckily she was at the end of the school year and kindergarten at that before her symptoms really started to interfere with daily life. She has luckily only had to miss a few days of school over the years, she’s in 8th grade now, but it was usually a cold or bug that was the reason. It’s never really been because of her having lupus. We do make the school aware and there are times she knows she will have to sit out, but it really doesn’t affect her. She loves to draw and sing, she is mostly an indoor kid but we go camping, to amusement parks, shopping, whatever we want to.
What are the biggest challenges to deal with as a family while having a child with lupus?
I wouldn’t say we’ve had to deal with a lot, we are very fortunate. We use sunscreen if we’re out, but we’re a very pale family to begin with so it happens anyway. As far as her brother, he is her biggest fan and will do anything for her, they are 2 peas in a pod and other than the typical brother and sister banter, they really are each others best friend.
Any advice for parents who suspect their child has lupus or advice on how to cope as a family?
Every parent has an internal alarm – if you think something is wrong, don’t take no for an answer. Do your own research and not just on webMD. There is a lot of information out there, you just have to look, but specifically with lupus. Remember this – no two lupus patients are alike – they are very much snowflakes, each one unique in their symptoms, their treatment, their body’s response. We are very lucky that we caught it as early as we did, she could have been in total kidney failure if we had been forced to wait but we had good doctors, mostly because we are close to a major city. If there’s a doubt, get a second opinion.
There is huge network for lupus patients out there, all over the world. Use it. As a parent, I want to know about anything that could possibly be in my girls future – especially when it comes time for her to have her own kids. There’s no way to know if she’ll ever have another flare or not. We have tried to make her as aware as possible about her disease, whether she is having any symptoms, anything that can put her at risk for getting sick. We all saw her at her worst and remember how helpless we felt to fix it. So we will do whatever we have to to make sure she is good.