[deleted account] ( 4 moms have responded )
My daughter is 7, and although she has not been diagnosed yet, she has soooo many medical issues going on, we know there IS something wrong, we are just wanting to finally get it diagnosed so we can either fix it or start living effectively with the right medications and treatment.
I was hoping by joining this group, one of you moms that have been through this with all the specialists and tests etc. might have some advice for me as a mom. Also, I would like to post some of her symptoms in the hopes that some of what she is going through might be something one of you knows about. I will tell you that we have been to 2 endocrinologists (who were both jerks, sorry), 2 gastroenterologists (the second one is amazing), a urologist, nephrologist, neurologist, cardiologist, a Lipid Team, psychologist (we were sent here by the first GI dr.), and now we waiting for an appointment with a rheumatologist. All of the doctors so far have just been able to treat the symptoms. Here are her symptoms and some of the illnesses she has had:
Meningitis (4weeks old), colic, acid reflux, RSV (all as an infant)
over 50 UTIs in her lifetime
chronic bowel problems (alternating periods of extreme fecal blockages and then incontinence)
chronic moderate to severe pain in her joints, most prevalent in her neck, shoulders, back, and knees
frequent numbness in her feet and legs
high blood cholesterol
precocious puberty (the endo is not wanting to treat this, but I am worried about it)
This had gotten so severe last year that as a first grader she missed 66 days of school, even though she completed the work at home and I also worked at her school and her teacher was going to pass her. But the rules governing private schools in this state prevented her from being promoted to second grade, and with her symptoms worsening, I knew she would miss even more days this year. So I quit my job and we are homeschooling. Some days her pain is so bad that she lays in bed while I ask her the questions and write the answers for her. Sometimes I even have to hold her chapter books and turn the pages for her while she reads to me. Just going to the movie and then coming home causes so much pain and fatigue that she spends the next day in bed recovering. This is not right for a 7 year old little girl!!!
I am just praying that someone might have some suggestions. Her urologist was honest that he is just stumped, and even though he is successfully treating her UTIs, he said that those will not go away as long as she is having the bowel problems, which the GI dr. is trying to get to the bottom of, but he is even stumped so far. These doctors are not looking at whole picture though, and I am thinking there might be a diagnosis out there that they are not aware of.