I am designing this blog to help other parents like my husband and I who are going through the challange of raising a child with Lupus. Sorry for the length of this first post. The subsequent post will not be this long. I just felt it necessary to get the fact out about SLM.
Our daughter is currently 20 years old. She has been a sick child all her life. We have had many ups and downs but, she is an incredible young lady who just keeps fighting with a bright smile and positive attitude. I truly feel she is a gift and she has taught us so much about living life to it's fullest. She truly is my HERO!
SLM (as I will call her here for her privacy) was born with Craniosynostosis. She has went through countless surgeries. I thought that alone was the worst thing my husband and I would ever go through as parents.
Then she started getting sick with strange rashes, fevers, stomach aches, and never seemed to feel well. That was at the age of 8. Our doctor could never explain why she was always sick and no one else was. As parents we decided to find a more aggressive pediatrician. I contacted our local University Hospital and asked for a pediatrician that dealt with children who were out of the norm. We met with that pediatrician who did extensive blood work since our daughter had been on antibiotics at that point for months from an "unexplained" fever. Low and behold the test came back with a positive ANA. At that time it was decided to put her on a stronger course of antibiotics and watch her blood work. She continued to have many health problems. But they didn't want to label her!
Being the strong child she was she got sick of "being" sick all the time and pushed through the fevers, headaches, sore throats, stomach aches etc. She went on to be quite the equestrian showing horses through 4H and then onto the AQHA circuit. We even went as far as to let her do virtual school so that she could show horses and work around her health issues.
She graduated in May of 09. Showed her horse all summer until October and then it was time to give up the sport and prepare to start school in Jan of 2010. November of 2009 her health fell apart. She slowed down and wow it hit her hard. She was hospitalized with stomach issues twice with in a six week period. They tested her for everything and the ANA was still high - 9 years of this and no one would admit it was LUPUS. We went through thousands of stomach test and a needless appendectomy. There was always findings of swollen intestines, granular spots etc on the intestines but there were no answers!
Then in Feb 2010 as parents we requested to see an adult Rheumatologist. We sat down with this doctor and within minutes he looked at the three of us and said. SLM has LUPUS. The sigh in the room was audible. Not that any of us wanted her to be sick nor did she was to be sick but finally we had an answer!
From there things changed drastically as far as her care went. Dr A started her on steroids, plaquenil, and methotroxate. We saw some vast improvements within about four months. We had hope for the first time in a long time!
Keep in mind at this point she has not attend college. Well this fall it was time. Things seemed to be settling down and she enrolled out West (we live in the midwest) at her dream college. We dropped her off on 8/18/10. We left her there with the biggest smile you have ever seen on her face and she was ready! The first few weeks we got many happy calls about how wonderful everything was. We as parents for the first time ever had started to relax.
Tonight as I write this, my husband is picking her up out west. The Lupus has once again taken over. A week ago she became very sick in the dorms and a couple of her friends took her to the look ER thinking she had a UTI. Sure enough she did but she also had a very high Lipase level (again). She was admitted and my husband hopped on a plane the next morning. I can't travel right now due to a little accident where I broke my leg. URGH! She remained at the local small town hospital for a few days and then she was stable enough to make the trip three hours away to another large University Hospital. Part of the agreement of letting her go so far away from home was that we had established care out there before leaving her with a rheum doctor. When she arrived they ran more blood test and found that her Lipase was coming down but still not normal. The Denver team looked at the blood work along with a CT Scan and Ultrasound they had did. Dr. K then sent her back to SBS and said to keep her quiet until all test were in etc. Dr K then called us yesterday to say she has what is called Sphincter of Oddi. This will need a surgical procedure and recovery. Is this related to Lupus know one knows. It could be could not be.
Tomorrow SLM will be flying home with her dad and missing out on this first semester of college. I am sitting here thinking WHY / WHY MY DAUGHTER?
Do other parents feel like this? I look forward to hearing from you about your experiences with your children / young adults who have Lupus. There is so many more details I have not shared. Feel free to ask. I would love to discuss this with all of you Luppie Parents!
Thanks for reading.
BKM - SLM's Mom
