Putting the pieces together of this complex autoimmune puzzle
Hunter's favorite past time, with the exception of the ipad and iphone (his "appsession"), is to build puzzles. He can take an entire bag of mixed puzzles and sort them correctly and piece each one together. At two years of age, he could rebuild the Melissa and Doug states puzzle. I'm amazed by his skills to analyze, sort, and join all of these pieces into a clear picture.
I guess I could list puzzles as my new past time. I am constantly attempting to piece together each new bit of information and figure out how to make a clear picture of my son.
Following along with my autoimmune hypothesis (eczema, category 8 excessive high risk for Celiac, gluten sensitivity, and PANDAS), I had researched Hunter's skin discoloration on his face and his hips. Vitiligo, a common depigmenting disorder affecting approximately 1-2% of the world population, was one of the causes that stood out to me. When researching its origin, it was listed as an autoimmune disorder. If the root of his regression was truly autoimmune in nature, then the Vitiligo would conjoin correctly in the puzzle. At Hunter's birthday party, under the bright lights in the gymnasium, when he lay on the trampoline, it looked as if he had a white mask surrounding his eyes. I mentioned it to our pediatrician, who at that time, thought it was just eczema, since it was patchy and dry. This summer, as his face tanned, the pigmentation discoloration was more apparent. Dr. V urged us to see the pediatric dermatologist who we had seen in the past.
Today, I presented my concerns to the highly recommended dermatologist, and he at first glance agreed with Dr. V's interpretation of eczema. However, when he shone the purple specialized light, he diagnosed my hypothesis: Vitiligo. The spot on his hips that had developed post-infection had grown in size, and when he saw that, he said immediately Vitiligo, as it is the most common place for Vitiligo to start.
His information was disheartening and encouraging at the same time. Vitiligo is a common ACQUIRED disorder where the selective destruction of functioning epidermal melanocytes causes depigmentation of the skin. It is likely not one disease but a common endpoint of MULTIPLE causes. Many etiologic hypotheses have been formed for vitiligo, including biochemical, neural, and autoimmune mechanisms. The most compelling of these suggests a combination of GENETIC and IMMUNOLOGIC factors that INTERACT and result in an autoimmune melanocyte destruction.
Disheartening as the condition can progress. A famous person to link to vitiligo is Michael Jackson. The dermatologist didn't think we needed to topically treat it at this time due to the fact that his fair skin hides the depigmentation. Also, the Protopic typically prescribed has been linked to lymphoma in rats. NO THANK YOU.
Encouraging as I go back to my puzzle...
Insert strep infection and autoimmune antibodies that attack nerve endings instead of a particular virus or germs.
Interlock eczema, risk of Celiac, gluten sensitivity, and Vitiligo.
I see the picture! It's not clear, and it's not glued together like some puzzle masters do when they complete a complex, large, million-piece puzzle. However, I feel like I am making progress and have had a glimpse of the boy who we knew at 16 months.
Some puzzles are not meant to be solved. Others are in place to test your limits. This puzzle has tested our limits to the utmost degree, but we will not be defeated.
"The art of simplicity is a puzzle of complexity." Doug Horton
I guess I could list puzzles as my new past time. I am constantly attempting to piece together each new bit of information and figure out how to make a clear picture of my son.
Following along with my autoimmune hypothesis (eczema, category 8 excessive high risk for Celiac, gluten sensitivity, and PANDAS), I had researched Hunter's skin discoloration on his face and his hips. Vitiligo, a common depigmenting disorder affecting approximately 1-2% of the world population, was one of the causes that stood out to me. When researching its origin, it was listed as an autoimmune disorder. If the root of his regression was truly autoimmune in nature, then the Vitiligo would conjoin correctly in the puzzle. At Hunter's birthday party, under the bright lights in the gymnasium, when he lay on the trampoline, it looked as if he had a white mask surrounding his eyes. I mentioned it to our pediatrician, who at that time, thought it was just eczema, since it was patchy and dry. This summer, as his face tanned, the pigmentation discoloration was more apparent. Dr. V urged us to see the pediatric dermatologist who we had seen in the past.
Today, I presented my concerns to the highly recommended dermatologist, and he at first glance agreed with Dr. V's interpretation of eczema. However, when he shone the purple specialized light, he diagnosed my hypothesis: Vitiligo. The spot on his hips that had developed post-infection had grown in size, and when he saw that, he said immediately Vitiligo, as it is the most common place for Vitiligo to start.
His information was disheartening and encouraging at the same time. Vitiligo is a common ACQUIRED disorder where the selective destruction of functioning epidermal melanocytes causes depigmentation of the skin. It is likely not one disease but a common endpoint of MULTIPLE causes. Many etiologic hypotheses have been formed for vitiligo, including biochemical, neural, and autoimmune mechanisms. The most compelling of these suggests a combination of GENETIC and IMMUNOLOGIC factors that INTERACT and result in an autoimmune melanocyte destruction.
Disheartening as the condition can progress. A famous person to link to vitiligo is Michael Jackson. The dermatologist didn't think we needed to topically treat it at this time due to the fact that his fair skin hides the depigmentation. Also, the Protopic typically prescribed has been linked to lymphoma in rats. NO THANK YOU.
Encouraging as I go back to my puzzle...
Insert strep infection and autoimmune antibodies that attack nerve endings instead of a particular virus or germs.
Interlock eczema, risk of Celiac, gluten sensitivity, and Vitiligo.
I see the picture! It's not clear, and it's not glued together like some puzzle masters do when they complete a complex, large, million-piece puzzle. However, I feel like I am making progress and have had a glimpse of the boy who we knew at 16 months.
Some puzzles are not meant to be solved. Others are in place to test your limits. This puzzle has tested our limits to the utmost degree, but we will not be defeated.
"The art of simplicity is a puzzle of complexity." Doug Horton
Comments
Post a Comment