Jeesh!! (the medical side of it...)
Seems like I was just on here posting gobs of updates...and here I am 11 days or so later...not that I have much to say.
We've been in Utah for the past few days. Up until then, I don't think much was going on.
Kaylee had an awful flare-up of spots on her left foot. She had several painful blood blisters on her toes, as well as the bottom of her foot. Other than that-spots come and go, no stomach pain to really report, and a few days of joint pain.
We had Kaylee tested at LifeClinic with Kherna, who has been doing EDS testing for over 10 years now. EDS is basically, an alternative heath method combining acupuncture points, a computer, meridian points, homeopathics, and supplements--working together to balance your body...so yes, obviously Kaylee's body is WAY STRESSED...so hopefully with the different supplements and homeopathics, we can get her body to do what it needs to, or at least as healthy as we can so her body can heal! I've been there myself over the past few years and have found it very helpful.
We also saw Dr. Bohnsack, who specializes in Pediatric Rheumatology and Immunology, at University Medical/Primary Children's. He says he diagnoses 45-50 patients a year with HSP...and manages the more difficult cases. So, he has some experience with what Kaylee is going through. He basically confirmed what Michael and I were thinking~meaning we weren't off base with how we felt or what we thought was going on. He agreed with us (and our family doctor) to try and get Kaylee off of her prednisone, to use it only in cases of stomach flare-ups. He also had another med we could use, that wouldn't "cure" her condition, but would suppress the symptoms more, (something called Dapsone which has been used to treat leprosy)...but he left it to us to decide if we wanted to use it...since we'd have to deal with a whole new batch of side effects. He also mentioned that he's had a few cases last for several years...and that Kaylee's situation/case isn't something uncommon with what he has taken care of.
Anyhow...I would say between the two people we saw, definitely Kherna was perhaps the most helpful, but Dr. Bohnsack did spend an hour with us too, listening and basically giving us "pats on the back" and giving us encouragement that it will end...someday.
So, that's the jist of the health visits we had from our UT visit...
We've been in Utah for the past few days. Up until then, I don't think much was going on.
Kaylee had an awful flare-up of spots on her left foot. She had several painful blood blisters on her toes, as well as the bottom of her foot. Other than that-spots come and go, no stomach pain to really report, and a few days of joint pain.
We had Kaylee tested at LifeClinic with Kherna, who has been doing EDS testing for over 10 years now. EDS is basically, an alternative heath method combining acupuncture points, a computer, meridian points, homeopathics, and supplements--working together to balance your body...so yes, obviously Kaylee's body is WAY STRESSED...so hopefully with the different supplements and homeopathics, we can get her body to do what it needs to, or at least as healthy as we can so her body can heal! I've been there myself over the past few years and have found it very helpful.
We also saw Dr. Bohnsack, who specializes in Pediatric Rheumatology and Immunology, at University Medical/Primary Children's. He says he diagnoses 45-50 patients a year with HSP...and manages the more difficult cases. So, he has some experience with what Kaylee is going through. He basically confirmed what Michael and I were thinking~meaning we weren't off base with how we felt or what we thought was going on. He agreed with us (and our family doctor) to try and get Kaylee off of her prednisone, to use it only in cases of stomach flare-ups. He also had another med we could use, that wouldn't "cure" her condition, but would suppress the symptoms more, (something called Dapsone which has been used to treat leprosy)...but he left it to us to decide if we wanted to use it...since we'd have to deal with a whole new batch of side effects. He also mentioned that he's had a few cases last for several years...and that Kaylee's situation/case isn't something uncommon with what he has taken care of.
Anyhow...I would say between the two people we saw, definitely Kherna was perhaps the most helpful, but Dr. Bohnsack did spend an hour with us too, listening and basically giving us "pats on the back" and giving us encouragement that it will end...someday.
So, that's the jist of the health visits we had from our UT visit...
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