Thought I should mention one very important thing... The moment we got Hank's diagnosis, we made an appointment with our Naturopath, Dr. Robert Thiel. We packed up and headed to his office, 350 miles away. We have been going to Dr. Thiel off and on for about 5 years and know and trust his abilities.
I had called Dr. Thiel before the appointment and filled him in on Hank's condition. By the time we got down there, he had done his own research and was ready for us. He put Hank on supplements for his thyroid and immune system, as well as vitamin D, which helps in collagen production. He thinks Hank has a bacterial infection and gave him something to fight that off as well. We have been going to him every 6 weeks and some supplements or dosages change depending on how Hank is.
Long story short...From November to February, Hank has gained 3 lbs and grown over 2 1/2 inches. For a kid who has been growing very slowly the last two years, this is unheard of! Not only is he finally wearing a size 7, he's actually growing out of some of the stuff! (He wore a 5 for almost 2 years!) I took Hank off of all high-fructose corn syrup products and have noticed that the discoloration on his face is fading.
I would say that overall, Hank is the healthiest he has ever been...well, except for the PRS. It is my belief that Dr. Thiel is slowing the progression and boosting Hank's overall well-being. Hank made it through all the holidays, plus January and February without catching the cold and flu bugs that plagued the rest of us! When Charlie and Lucy were hacking up a lung, Hank continued on cold virus-free! Amazing! This is a kid who missed 20 days of kindergarten because of illness!
I think this is really helping Jeff and I too. We are not sitting around waiting to see doctors or just watching the progression...we are taking an active part in Hank's care. And Hank, ever the trooper, actually asks for his pills, if we don't set them out quick enough for him. He is so proud that he is able to swallow pills instead of having them mixed in a drink. (which tasted terrible!)
I believe that Dr. Thiel will find the answer we are looking for. We have seen him have great successes with other family members and friends. Serious illnesses, not just easy stuff! It will just take time...
On October 16, 2008, our then 7 year old son was diagnosed with Parry Romberg Syndrome: an extremely rare, progressive, "incurable" auto-immune disease that causes facial atrophy...meaning it causes half the face to "waste" away. Some cases include seizures, strokes or other neurological problems. This is the story of our family, and specifically our son, Hank, as we struggle with diagnosis, search for a cause and a cure and go to the ends of the earth for treatment.
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