I am writing today to let everyone know that we did get Carter started on genatropin, a growth hormone medicine. He began this last monday, the 6th of Decemeber and it has gone very well. He hasnt cried or anything, and sometimes even watches at what we are doing. I am so proud of Carter. What a brave boy.
The last couple of days I have noticed that Carter is much more thirsty than normal...he wants to drink and drink water. Cody and I wonder if this is a sign that the medicine is working? We are optimistic it is.
Preschool has been also going great for Carter...His time has increased to 10 1/2 hours a week, where as before it was 4 hours. He is indeed tired when it is time to pick him up at 12:30 and is normally napping for me by 1 pm! On a good day, Camden naps at the same time! ;) This past week he has been coming home singing Christmas songs, "Jingle Bells", to be precise. Its so fun to listen to him sing and clap! He has also been saying 'up, down' while putting his arms up and down..There are so many other little things I cant even think of right now that are new, and i know he must have learned it at preschool. His aide, Carol, is just wonderful too..She is so great with Carter Dale.
Thats about all for now! God Bless and Merry Christmas!!
Saturday, December 18, 2010
Tuesday, November 2, 2010
Persistance Pays Off!
So, after my last blog a few things happened...first off- I remeasured Carter to find he wasnt quite as tall as I had thought he was...He got very carefully and repeatedly measured @ 37 1/2 to 38 inches...and I thought he was 38 1/2...1/2 an inch to an inch may not seem like much..but in his world, it is.
After measuring Carter and feeling very disappointed in a certain doctor..I decided that I didnt think Carter should have to wait another month and a half. I called Sanford Pediatric Clinic and told them that Carter needed to be seen sooner. His height was @ the 5%, his weight at or above the 100% mark. His feet are the size of a 2 year old, and he will be 4 on November 20. I sobbed at wondering how hard his heart could be pumping, because all his weight seems to be in his belly-surrounding his major organs. I sobbed because his feet are supporting much more weight than they should be..Twice as much weight as other children with his foot size. He has already had physical set backs, and as his mom was going to try and avoid any un-neccasary delays to my best ability.
Carter's previous pedatric endocrinologist left early august and moved to Kansas...and because he was on the outs, seemed to kind of blow of my concerns as a parent. He was errogant, plain and simple. He frowned upon the calorie-reduced diet that I had started Carter on...thought it was too restrictive. Didnt think that Carter was 'that big' and didnt want to do anything other than keep waiting. He was leaving, so to my husband and I, he appeared not to care because he wasnt going to be Carter's doctor any longer anyways. His numbers for his growth hormone function were below normal, supporting my suspicions in July.
Since July, Carter has continued to gain weight but not grow taller...his feet havent grown in over a year, his arms and legs are shorter than other children his age, not helping his physical abilities..(ex: climbing stairs, bending down to his feet, etc.) I have watched him fall off the growing curve for two years and really dont want to have to.
What we found out yesterday: Carter's new doctor~Dr. Laura Davis-Keppen~ is a more knowledgable and competent doctor. She has been practicing since 1984. She reviewed Carter's chart while in with us, apologizing to us for not having looked at his records prior. She first talked with my mom and I about Carter..our concerns. After looking at his charts, she saw that Carter has tested under the normal range for his IGF1 level in July, like we were aware of. She then noticed a time before that, that he had also tested under normal, but even more so..which we were NOT aware of. Dr. Karmazin never told us. Disappointment came over me- disappointment in the previous doctor but yet a bit of relief because that will hopefully aide in getting Carter the help and treatment he needs. Carters height measured at 38 inches and his weight at 50.9 lbs!! His BMI is clear the heck off the charts, which is her major concern. She believes his brain diagnosis is what is causing lack of growth. The pituitary gland is very close to the part of the brain that he is missing, his corpus callosum. She seems to want to get started on growth hormone asap and see what it does for Carter. The paper work is getting started today, however this takes a few weeks. Also, to further support the insurance company to pay for this high cost medicine, she ordered another Igf1 level, thyroid check, diabetes screen, and bone age test (x-ray his left hand)..This all happened yesterday right away. What a relief.
Carter will be starting here in a few weeks on a growth hormone medicine that is pre-filled and ready to give daily, in the form of a shot. A nurse will come to our house to show us how to properly administer this medicine. I am so thankful that persistance is paying off. I am so thankful for a well educated and experienced doctor. I am so thankful for my mom to support us by going with when Cody couldnt. I am so thankful for a determined 3 year old who let the nurses mess with his again yesterday. I am so thankful for many things.
Also, I should mention that I am back to calorie counting with Carter. A dietician would like to see his calories restricted to under 700-800 per day. If Carter is going to grow taller, they would like to see his weight not also increase. This is fine, I am more than happy to measure things out because it is in Carter's best physical interest.
Sorry if parts of this blog maybe didnt make sense, it only took me an hour or so to write because of interruptions with my boys!! lol
Thanks for reading!
After measuring Carter and feeling very disappointed in a certain doctor..I decided that I didnt think Carter should have to wait another month and a half. I called Sanford Pediatric Clinic and told them that Carter needed to be seen sooner. His height was @ the 5%, his weight at or above the 100% mark. His feet are the size of a 2 year old, and he will be 4 on November 20. I sobbed at wondering how hard his heart could be pumping, because all his weight seems to be in his belly-surrounding his major organs. I sobbed because his feet are supporting much more weight than they should be..Twice as much weight as other children with his foot size. He has already had physical set backs, and as his mom was going to try and avoid any un-neccasary delays to my best ability.
Carter's previous pedatric endocrinologist left early august and moved to Kansas...and because he was on the outs, seemed to kind of blow of my concerns as a parent. He was errogant, plain and simple. He frowned upon the calorie-reduced diet that I had started Carter on...thought it was too restrictive. Didnt think that Carter was 'that big' and didnt want to do anything other than keep waiting. He was leaving, so to my husband and I, he appeared not to care because he wasnt going to be Carter's doctor any longer anyways. His numbers for his growth hormone function were below normal, supporting my suspicions in July.
Since July, Carter has continued to gain weight but not grow taller...his feet havent grown in over a year, his arms and legs are shorter than other children his age, not helping his physical abilities..(ex: climbing stairs, bending down to his feet, etc.) I have watched him fall off the growing curve for two years and really dont want to have to.
What we found out yesterday: Carter's new doctor~Dr. Laura Davis-Keppen~ is a more knowledgable and competent doctor. She has been practicing since 1984. She reviewed Carter's chart while in with us, apologizing to us for not having looked at his records prior. She first talked with my mom and I about Carter..our concerns. After looking at his charts, she saw that Carter has tested under the normal range for his IGF1 level in July, like we were aware of. She then noticed a time before that, that he had also tested under normal, but even more so..which we were NOT aware of. Dr. Karmazin never told us. Disappointment came over me- disappointment in the previous doctor but yet a bit of relief because that will hopefully aide in getting Carter the help and treatment he needs. Carters height measured at 38 inches and his weight at 50.9 lbs!! His BMI is clear the heck off the charts, which is her major concern. She believes his brain diagnosis is what is causing lack of growth. The pituitary gland is very close to the part of the brain that he is missing, his corpus callosum. She seems to want to get started on growth hormone asap and see what it does for Carter. The paper work is getting started today, however this takes a few weeks. Also, to further support the insurance company to pay for this high cost medicine, she ordered another Igf1 level, thyroid check, diabetes screen, and bone age test (x-ray his left hand)..This all happened yesterday right away. What a relief.
Carter will be starting here in a few weeks on a growth hormone medicine that is pre-filled and ready to give daily, in the form of a shot. A nurse will come to our house to show us how to properly administer this medicine. I am so thankful that persistance is paying off. I am so thankful for a well educated and experienced doctor. I am so thankful for my mom to support us by going with when Cody couldnt. I am so thankful for a determined 3 year old who let the nurses mess with his again yesterday. I am so thankful for many things.
Also, I should mention that I am back to calorie counting with Carter. A dietician would like to see his calories restricted to under 700-800 per day. If Carter is going to grow taller, they would like to see his weight not also increase. This is fine, I am more than happy to measure things out because it is in Carter's best physical interest.
Sorry if parts of this blog maybe didnt make sense, it only took me an hour or so to write because of interruptions with my boys!! lol
Thanks for reading!
Wednesday, October 20, 2010
Preschool & Growth
Hey all! It has been such a long time since I have blogged...I looked back, and nearly two months has passed since my last entry. Things have been going fairly well for my family, particularly Carter. He was in his first day of preschool the last time I wrote and so I thought I would update anyone on how its been going for him. First off, he has only been going two mornings a week..tuesday and thursdays- from 9-11ish. I wanted to start him off slow since he is my special little guy, not just throw him in. Gradual with Carter is usually better than all at once for him. He has really been loving preschool. The first few times, he was ready to get out the door when I would come pick him up, then there have been a few times where he would see me but keep at his activity and kind of ignore me! :) There has been a time where he was ready to go, but then the teacher turned on the music to go with a book they were learning and he would go over by the cd player and dance and clap.
He has brought home lots and lots of paper work, colorings, projects, books, etc...from his preschool! I havent thrown away a single paper yet and want to keep all of them! :) I couldn't be more pleased with Carter. He is learning and creating! His schedule for preschool is going to change next month, November. He will be 4 on November 20th, which I can hardly believe, and so we will update his IEP. I am thinking of having him go two full days, so that he can get used to the schedule. This means he will go to school, eat breakfast, have morning activities, recess, free time, lunch, nap, and more preschool just like all the other children do. I hope he will adjust if thats how it plays out. I also hope that I can adjust! Anyways~ All in all preschool is going great for him. I love his teacher-Linda, her aide-Melissa, and Carter's very own personal aide-Michelle! They are all wonderful with him.
Carters next doctor appointment isnt until December 13, in Sioux Falls. He goes to his new pediatric endocrinologist, Dr. Laura Davis Keppen (SP?)...who took over because Carters last doctor moved to KS. I hope that she is a proactive doctor or we will be finding someone else to go to. As Camden grows, his feet are only about 1/2-3/4 inch smaller than Carters, but Carter is 2 1/2 years older! Also, Camden's legs are nearly as long as Carters now. Its crazy. We started the whole growth hormone testing, bone age x-rays, etc in January 2009...so 21 months ago...and Carter is not growing like he should. I as a mom am tired of waiting..I want to do something about his growth, about the size of his feet (balance issues), about the length of his arms and legs (stairs issues), not to mention that he is a good 5 or so inches shorter than other little boys his age. Which for a 3 year old, is a lot.
Thanks for reading and caring!! Bless you!
He has brought home lots and lots of paper work, colorings, projects, books, etc...from his preschool! I havent thrown away a single paper yet and want to keep all of them! :) I couldn't be more pleased with Carter. He is learning and creating! His schedule for preschool is going to change next month, November. He will be 4 on November 20th, which I can hardly believe, and so we will update his IEP. I am thinking of having him go two full days, so that he can get used to the schedule. This means he will go to school, eat breakfast, have morning activities, recess, free time, lunch, nap, and more preschool just like all the other children do. I hope he will adjust if thats how it plays out. I also hope that I can adjust! Anyways~ All in all preschool is going great for him. I love his teacher-Linda, her aide-Melissa, and Carter's very own personal aide-Michelle! They are all wonderful with him.
Carters next doctor appointment isnt until December 13, in Sioux Falls. He goes to his new pediatric endocrinologist, Dr. Laura Davis Keppen (SP?)...who took over because Carters last doctor moved to KS. I hope that she is a proactive doctor or we will be finding someone else to go to. As Camden grows, his feet are only about 1/2-3/4 inch smaller than Carters, but Carter is 2 1/2 years older! Also, Camden's legs are nearly as long as Carters now. Its crazy. We started the whole growth hormone testing, bone age x-rays, etc in January 2009...so 21 months ago...and Carter is not growing like he should. I as a mom am tired of waiting..I want to do something about his growth, about the size of his feet (balance issues), about the length of his arms and legs (stairs issues), not to mention that he is a good 5 or so inches shorter than other little boys his age. Which for a 3 year old, is a lot.
Thanks for reading and caring!! Bless you!
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