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2009/02/23

Xie 血管瘤[氣管胎記]-- Camryn

 
舌下Subglottic Hemangioma
A Glyconutrients Success Story
 
Look at the change in this little girls face in just 3 weeks on glyconutrients. Absolutely amazing!
 
Camryn was born 2/3/00 in Burlington, IA. At birth, we noticed some small 胎記birthmarksunder her neck, on her chin, and around her right ear. Our pediatrician assured us that they would go away in time or that they could be treated with laser surgery if it became necessary. At 2 weeks, Camryn began to sound wheezy, like a cold but no runny nose or congestion. We took her to the emergency room where after a series of tests ruling out any respiratory problems, we were told that her birthmarks may also be present in her airway and starting to cause a blockage. A bronchoscopy revealed this to be true. Camryn was diagnosed with Subglottic Hemangioma with external components on her face and neck area. Camryn was put on the類固醇靜注 IV steroid, Decadron. This seemed to immediately quiet her breathing. However, when the steroid wore off, the symptoms were back. We tried a few more doses of steroid with the same results. The amount was increased to the limit but still could not keep the hemagiomas from closing her airway. We were referred to the University of Iowa Hospital.
 
At 5 weeks, Camryn received a 氣切tracheostomy because her airway could not be maintained. We were informed that the hemangiomas would continue to grow through her first year and then start to resolve, completely disappearing in 5-10 years.
 
It was recommended at that time that we start Camryn on 干擾素Interferon which had been shown to have great effects in limiting the growth of hemangiomas and resolving them in often a year's time. We were encouraged that Camryn may only have to have the trach for 6 months to a year with using the Interferon. The Interferon was given as an injection, nightly without fail.
 
At 6 months, Camryn's subdermal hemangiomas under her neck had grown extensively. Fortunately, her small external hemangiomas had grown very little, only a few spots on her chin and behind each ear. We continued the Interferon hoping to start seeing some resolution.
 
At 12 months, and at 18 months, we were seeing no more signs of growth, but also no resolution of the hemangiomas. We decided to take Camryn off the Interferon because we were seeing no benefits and were tired of putting Camryn through shots every night and dealing with the side effects of a constant low-grade temperature, irritability and decreased appetite. During Camryn's first year she was classified as "Failure to Thrive" and recommended for a feeding tube. We worked very hard on our own to increase her calories and avoid the feeding tube. She managed to fairly consistently gain 1/2 pound per month so we kept her moving up slowly on her own little growth curve, fearing each illness that would set her back.
 
At 15 months, it was recommended that we try some very minimal laser therapy to try and open Camryn's airway enough to be able to have the trach removed. We were extremely reluctant because of the possibility of causing scar tissue in her airway that may present future airway problems for Camryn but saw no other alternatives. We even sought advice from other doctors across the country looking for an answer. The possibility of trying the chemotherapy drug, Vincristine, was recommended to us from a specialist in Arkansas who deals specifically in hemangiomas. But we later found that research has shown it to be most beneficial in the growth phase of hemangiomas and we were past that point so we declined. Since August, 2001, Camryn has had three laser surgeries which appear to have been successful and we were hoping to try and remove the trach in February, 2002.
 
On January 13, 2002, we were formally introduced to Glyconutritional products. We felt the Glyconutrients might be beneficial in reducing Camryn's hemangiomas more rapidly but also that the products would be beneficial nutritionally for her. We immediately started Camryn on 6-8 phytobears per day and 3-4 - 1/2 teaspoons of Glyconutrients per day. After a little over a week, we thought maybe she was reacting to the Glyconutrients because her heart rate was elevated and she seemed more restless while sleeping. We cut her back to 1 - 1/2 t. Glyconutrients per day for 3 days and then went up to 2 - 1/2 t. Glyconutrients per day. She was tolerating that well and seemed to be doing very well. We felt maybe we were starting to see some change in the subdermal hemangiomas of her neck area but very subtle. It's very hard to determine subtle changes when you see her on a daily basis. After almost 2 years, you always wonder if it's just wishful thinking.
 
On February 1, 2002, Camryn was admitted to the hospital with the RSV virus. We were very upset because she was scheduled to hopefully remove her trach the following week, and we knew that now with RSV she would have to wait another 8 weeks. But, God has a plan. Because of the RSV, Camryn was started on IV steroids that night. Amazingly, 2 days later, we were seeing a dramatic, very obvious change in her face. The subdermal hemangiomas were finally reducing. Our Camryn was finally looking like a totally different child with an almost normal looking face almost overnight. We were ecstatic! We knew in our hearts that it had to be the Glyconutrients that was finally allowing Camryn's cells to communicate effectively so that the steroid would finally work. Camryn continued on the steroids for approximately 10 days. At the end of that time, we felt that we were maybe noticing a little bit of regression in that the swelling in her neck has come back ever so slightly but we are still very pleased with what we are seeing. While Camryn was in the hospital we had also stopped the Glyconutrients for that week which probably did not help. Since her dismissal though, she has been back on the Glyconutrients, taking 2 - 1/2 t. per day and now we are working up to 3 - 1/2 t. per day. She gained 1 1/2 pounds in last month, which is amazing for Camryn and also probably due in part to the steroids. We'll see what next month brings.
 
On February 14, 2002, it was recommended that we start using the glyconutritional lotion on Camryn's face and neck areas where the hemangiomas are present. We have been applying the lotion two times per day. We are noticing some color change in the external hemangiomas. They are starting to look much lighter, which we have been told is the first sign of resolution.



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