Yesterday I wrote about my fears of my six year old son developing Celiac Disease. I was diagnosed in the summer of 2009, and have realized the severity of my own case over these past few years. Just as with cancer, diabetes, and heart disease patients are told to alert their families of a diagnosis because it could be hereditary. With my complex medical history along with my family's strong history of autoimmune diseases, my husband and I are on constant alert with our little guy.
He came home from school on Monday with a rash. The rash persisted and did not respond to allergy medication orally or topically. I took him into his pediatrician yesterday with my heart set on getting him screened for Celiac Disease even if his opinion of the rash pointed him otherwise. I wanted a baseline, a warning, some sort of tangible evidence leading us to look for Celiac or let our guards down.
I have been extremely lucky with pediatricians for my son. This one in particular has followed him for about 4 years. He really takes the time to sit with me and explain his thinking when treating or diagnosing. His first impression of the rash was of course and allergic reaction to something. The good news, it does not look systemic. It looks more like a contact reaction. That means rather than him ingesting or inhaling an allergen that caused the rash, he rubbed up against something that caused the rash. This could happen even through clothing.
My son is an active child who gets in and out of anything and everything so this was no surprise to me. At home we use hypoallergenic everything, but at school or at the river or on the playground anything could be the cause. Considering he had a very active weekend outdoors and then went for his second day of school, I felt relieved thinking it could be totally random.
I still expressed my concerns about Celiac Disease. Explaining again to his doctor my medical history and our goal for catching things early for my son if need be. He acknowledge my concerns and gave his thoughts on it. In lay men's terms he essentially said these things are considered hereditary. Of course if someone in your family has cancer, or diabetes, or Celiac Disease, or heart disease than you are at a higher risk of developing it, but it is not a guarantee.
Yes, there is initial blood testing for Celiac Disease, but to actually have a diagnosis in place you must (according to the National GI guidelines) have a biopsy of your small intestine confirming the diagnosis. With the blood test there are two genetic markers they check as well as antibodies. If your genetic markers come back positive, that does not mean you have Celiac Disease or will get it just the same as for the breast cancer markers. Many women who have the genetic marker for breast cancer and a strong family history have a mastectomy as a precaution never knowing for sure if they would've ever actually developed breast cancer in their lifetime. Our pediatrician views Celiac Disease the same way.
A blood test for a small child is traumatizing enough. I don't even remember having my blood drawn until I was in my preteens, and that was devastating. Then, what happens if the markers come back positive? There is no pediatric GI doctor in our area so we would have to be referred 5 hrs away. Then our six year old would have to go through an endoscopy and a biopsy. Awfully dramatic for a preventative measure. Even at that, what if the markers are positive but he has no antibodies and the biopsy is clear.....then we see our son as a ticking time bomb for the rest of his life unless the disease develops and presents itself. Any way you look at this it would just add more stress and worry to the situation.
Now, to discuss hereditary. The way the pediatrician described it to me made so much sense. Now in science we have the technology to look at DNA. We can isolate any gene and research it until we are blue in the face. Any disease or disorder is a mutation. You will see it somewhere in the persons DNA. If the genes were immaculate, there would be no disease. Therefore, people with similar diseases will have similarly deformed or mutated genes whether they be family or not. So, hereditary is really an umbrella term. OK, hair color, eye color, physical appearance, etc. are all hereditary, but again it is just the same mutation in the DNA causing the differences or similarities in people. In this day and age we have access to so much knowledge.
Knowledge is good. Knowledge is power. But it can also lead to unnecessary hardships. Wake up with a sniffle one day and go to any search engine. Type in your symptoms and see what comes back. The likely cause of your sniffle may be a sinus infection or allergies, but the Internet may lead you to spinal cord leakage. A pimple in an unusual place on your body may lead you to some sort of cancer. These scary and highly unusual cases do happen or there would be no information on them. Unless there is some red flag pointing you away from the common, why allow your mind to go there. This goes back to the saying, "Only worry about what you can control".
That is something I need to be constantly reminded of.......what is not in my control is in God's hands.
The pediatrician went on to explain the signs and symptoms of Celiac Disease which I am well aware of due to my own experience and research. He continued with explaining a case he just diagnosed not too long ago in a one year old. He was reassuring me that he does realize this is a more common illness than previously thought and it certainly can develop or present itself early in life. His opinion of our son was not a potential case of Celiac Disease. When or IF a red flag arises we will address it then, but in the meantime adding stress to our plates as well as concerning our son and putting him through the testing is just not practical at this point. He was very open and left the final decision up to my husband and I. He realizes that his seeing our son for 15 minutes at a time every few months does not lead to "close relationship", but medically speaking he is sound.....we as parents have to be the ultimate judges.
End result? Hydro cortisone cream topically til rash subsides. Keep an eye out for a recurrence so, if necessary, we can isolate the allergen. In the meantime, we will continue living our lives as care free as we can. Live for today. Pray for tomorrow.
Thank God for pediatricians/ doctors who take time to care for their patients as opposed to looking at their bottom line. Thank God for children. They bring joy and innocence into this crazy world. Thank God for family. If we three weren't a team, these minor scares and major trials would be impossible. Thank God for today.
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