We are left scratching our heads, if Kara's blood work shows no huge issues, why is she so lethargic? It is her innate nature to be a couch kartoshka? I do not feel like it is normal for a young child to want to lie down so much. I assumed her lack of energy was from iron deficiency, and prayed it was nothing worse than that. TSH normal in lower midrange, though I am wondering why the pediatrician did not order T-3 and 4 tests too.
Moms out there, what else should we look at for Kara and should we assume she is worn out from the heat?
Meghan and Amanda's blood work was also all normal, some low end, but normal. Amanda having the highest counts, makes sense, she gets sick less often than our other two little girls.
3 comments:
Glad blood work was ok.
Hope you can figure out what is going on with Kara... she has always seemed so go go go in the past.
Could be the heat but if she has been this way during the rainy times you have had lately. Then it does not seem the heat would be the reason.
I am a medical librarian and today when I checked the new book list I saw this title and it brought to mind that one of your daughters has this condition. I have no idea of knowing if this is a good book etc but thought I would let you know.
Nerby, Jill Ann:
Aniridia and WAGR Syndrome: A Guide for Patients and Their Families (Book with CD-ROM) 9780195389302
$35.00
"Annotations:
Our hope is to enlighten and encourage those affected by aniridia and WAGR Syndrome by providing patient support and medical information. There is information to inform parents, teachers, doctors, employers, and the public about aniridia and what it is like to live with it. Several renowned doctors contribute medical chapters. Personal experiences from individuals with aniridia and parents with children with aniridia provide encouragement. Contact information for Aniridia Foundation International (AFI) is included.
When a child is born without a complete iris, it is usually a symptom of a broader condition. Known as aniridia, this condition can also be a sign other parts of the eye are underdeveloped as well. Moreover, recent research shows that the gene involved can also affect the kidneys, pancreas and forebrain, so aniridia can coincide with a range of symptoms known as WAGR syndrome. Until recently, however, there was very little information available on aniridia and WAGR Syndrome. Even now, not all of the available information is current or correct, so that when a child is diagnosed with aniridia, the parents often find or are given information that is confusing and even frightening.
We created this book to help those families see that they are not alone, and there are a lot of answers and a great deal of hope. It contains information about aniridia and WAGR Syndrome for parents, other family members, friends, teachers, doctors, and employers. We have been very fortunate to have several renowned doctors contribute current and comprehensive medical information that will help to provide concrete answers to basic questions and demystify these conditions. The book has many personal stories from individuals and parents that will help to give a more complete picture of what it is like to live with aniridia and WAGR Syndrome and provide encouragement and comfort. It also contains information about where to go for more answers and support, including the Aniridia Foundation International (AFI), www.aniridia.net a non-profit organization created by one of the authors, Jill Nerby.
We hope that you will read this book and join us in creating a better future for those with aniridia and WAGR Syndrome."
Not sure if you've already found more answers for Kara's lethargy, but I just wanted to offer you encouragement. You know her, and you know your mommy's instincts. So if you feel that something is wrong, then it is. Just because the Dr doesn't care as passionately about her as you do is no reason to quit till you find the answers you need!
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