We had to wait until last week to get an answer back from the doctor as to what we would do next. I was hoping that there might be some explanation for C's changes but when I spoke with his doctor, she wanted to repeat a testosterone level and bone age. She was not sure why he was physically changing and was hoping that the implants are just taking a little longer to suppress.
We took C in for his blood test earlier this week and our goal was to have the testosterone value below 3. We received the results and it's at 3 which means that it's going down.(In December is was 5). I must admit that I am still very confused and concerned as to why he is still physically changing. One of the more obvious changes is his weight. He went from 50lbs at the beginning of December 2011 to 54lbs at the end of December. It is all solid muscle, not fat. He is also having trouble sleeping and he's very moody. He looks older than he is and it just breaks my heart that he is still dealing with these changes.
It's difficult to understand especially when we have someone to compare him to. His twin brother T seems to be responding beautifully to the 3 month Lupron injection. He does not look like he has progressed any farther and we are thrilled with that.
I know that the doctor was wanting to have the testosterone level lower this time (and it is) but to me that is almost worse because it only makes it more difficult to answer the question why. Why is his body still acting like he is in puberty when the test results show a different story?
Saturday, January 28, 2012
Saturday, January 7, 2012
2 steps forward.....one step back
So I was anxiously waiting for C's 2 implants to suppress his puberty and in December we got great news....his testosterone was at the lowest level since we first started all the testing! I must admit I was cautiously optimistic about the results. C has been the anomaly from the beginning. The only time he showed that he was in Precocious Puberty was when we did the "stimulation test".(which we have done 3 times now) Because the testosterone was so low I didn't worry that the symptoms he still exhibited. However that changed over Christmas break. His body is still drastically changing and there doesn't seem to be an explanation. I called his doctor this week and I am waiting to hear back to see what she thinks.
I am so frustrated that we can't seem to get C's body under control. His body is changing and there is nothing that seems to stop it. I can't help but wonder what started it. We have tried to find out if there is something we are exposing him to that is causing this issue but we have not found a "smoking gun". I hope we can find an answer soon!
I am so frustrated that we can't seem to get C's body under control. His body is changing and there is nothing that seems to stop it. I can't help but wonder what started it. We have tried to find out if there is something we are exposing him to that is causing this issue but we have not found a "smoking gun". I hope we can find an answer soon!
Thursday, November 17, 2011
Still waiting on Supprelin.....
I am not sure how many other families are using the Supprelin implant, C has 2 of them in right now and we are still waiting on them to do their thing. We had them placed in September of this year and are so hopefully that they will work but I have not seen a change yet. I feel so bad for him. He's got some of the hormones of a teenager but he's 5. I heard back from our endocrinologist today and we will go have more labs drawn to see if things have changed, stayed the same, or gotten worse.....Sometimes I wish I could have a crystal ball to see into the future and know that everything will be OK.
Thursday, November 3, 2011
Diagnosis: Central Precocious Puberty......Now What?
I wanted to start this blog to share information about Central Precocious Puberty (CPP). I want to tell my story in the hopes of helping other parents who have children with CPP. I hope that this can be helpful to others looking for answers.
I think that I am like most parents. I worry about my kids being healthy and safe. I wonder if I am doing enough as a mother to help them learn and grow and be ready for the world. I try to always stay one step ahead of common childhood illnesses and problems but nothing would have prepared me for hearing that my three year old son was starting puberty. I was lucky enough to have worked with a wonderful endocrinologist six months before my son started showing significant changes. I don't think that I would have been so persistent in asking questions to the pediatrician if I had not had some previous knowledge. I didn't know that little children could go through puberty just like a regular teen, but when a patient came into the clinic for the Lupron injection I had questions. The doctor explained that sometimes the signal to start puberty is turned too early and the child's body responds just like a teenager and starts to change. Usually they experience a growth spurt and changes in anatomy. They can have more hair growth and body odor as well. For girls they can have a menstrual cycle and breast development. Boys can be a little more challenging....a growth spurt can be overlooked as "normal" and changes in the genitals can be subtle to start.
I noticed that "C" (I won't use names for privacy) was aware of a certain part of his body at a very early age. He was only 12 months old. I had the pediatrician examine him and he said that everything was fine. I was still concerned at 15 months and again at 18 months and each time I was told by the pediatrician that he was fine, just very aware of his body. He was the smaller of my twins but once he turned two, his body physically started to change. He was passing up his twin brother in height and weight. He was looking like a little miniature man and I was determined to see why there were such drastic differences between him and his twin brother "T". I took C back in to the pediatrician and finally got the OK to do a bone age test (a wrist x-ray to help determine the age of the bones in your body. It's similar to counting rings of a tree trunk to see the true age of the tree. The radiologist checks the spaces between all the little bones in the wrist and hand to determine a bone age of an individual). We also did a DHEA (a blood test that can give a basic picture of what the reproductive hormones are doing). The bone age came back....C had just turned three and his bone age was five and a half. Two or three years older than his true age....The blood test came back normal but the bone age was enough to get a referral to an endocrinologist (a doctor who specializes in the diagnosis and treatment of conditions affecting hormones or other parts of the endocrine system). Most endocrinologists can diagnose and treat early or late puberty but we were fortunate enough to be referred to the same endocrinologist that I had worked with previously, whose field of expertise is treating children with early or late puberty.
Our first appointment confirmed that there was changes but not enough to start treatment, so we waited. A few months later we were back in and did a follicle stimulation test. (This test is usually done at the endocrinologists office. They will draw the patients blood before the GnRH antagonist is injected. Once the patient has been given the injection they wait one hour and then draw another set of labs. They will compare the 1st and 2nd set of labs to if there is an increase in hormones like testosterone). C's showed what we had suspected. He had precocious puberty. He was three years old. Now what?
We did all of the tests including a MRI of the brain and lots of blood work to rule out the scary stuff like cancer, tumors and adrenal issues. We were left with the diagnosis of "idiopathic central precocious puberty" (translation....the doctors don't know why the signal in his brain went from off to on and started puberty). We were told that we needed to start Lupron injections (it's medication that turns off the signal for puberty). We started the injections in July 2010.
Lupron works for most kids. It's an injection that must be given every 28 days and you need to continue treatment until the "normal" age of puberty, which is 11 or 12 years old for boys. Unfortunately C was the exception. We increased the dose and lessened the time between injections and it wasn't suppressing his condition. We were approved for the Supprelin implant in December 2010. The implant is placed in the arm like Norplant, which is a birth control implant. Norplant lasts five years, but Supprelin is placed and removed every year. Supprelin is not a form of birth control. It works to suppress puberty until the appropriate age. We had it placed in February of this year. Again we were very hopeful that we could get his puberty suppressed. Usually the implant works quickly. We waited two months and didn't see any change so we talked with our endocrine doctor and started a nasal spray called Synarel. The nasal spray is probably the most inconvenient of all the treatments for precocious puberty. You have to administer it two times a day at the same time. If you give it at 8 am in the morning you must give it again at 8 pm, every day. After using the nasal spray and leaving the implant in, we did start to see improvement this past summer, and we stopped using the Nafarelin. We thought we were on our way to C living a "normal" childhood.
The improvement did not last long. By August C was showing signs of puberty again. Another follicle stimulation test showed that he was somewhat suppressed but not 100%, so we discussed all the options and went with the placement of two implants at the same time. The doctors took out the original implant so that C wouldn't have to have a surgery every six months to replace an implant. We had the implants placed September of this year and are anxiously awaiting results. If the implants don't work, I am not sure what is left.
On top of all of that, we learned in September of this year that C's twin T has CPP as well. They are fraternal twins and both boys. CPP is a lot more common for girls. We now have two boys with the same diagnosis of idiopathic CPP. The odds of that being a random chance are so small that we are now wondering whether there is a genetic cause, some kind of side-effect from medicine I was prescribed to stop early labor, or something else. This is the hardest part....why is it happening and why is it increasing?
T had his first Lupron injection yesterday. It was the new kind that lasts for three months, so we're thankful that he won't need monthly injections.
I am hopefully that we can find answers and start a dialog about early puberty. This is not something to be embarrassed or ashamed of. Sometimes we can not control our bodies....as much as we might all want to, but we can get the word out there that this is happening and we want to know why. I want parents to know that it does occur in boys and there is treatment.
I think that I am like most parents. I worry about my kids being healthy and safe. I wonder if I am doing enough as a mother to help them learn and grow and be ready for the world. I try to always stay one step ahead of common childhood illnesses and problems but nothing would have prepared me for hearing that my three year old son was starting puberty. I was lucky enough to have worked with a wonderful endocrinologist six months before my son started showing significant changes. I don't think that I would have been so persistent in asking questions to the pediatrician if I had not had some previous knowledge. I didn't know that little children could go through puberty just like a regular teen, but when a patient came into the clinic for the Lupron injection I had questions. The doctor explained that sometimes the signal to start puberty is turned too early and the child's body responds just like a teenager and starts to change. Usually they experience a growth spurt and changes in anatomy. They can have more hair growth and body odor as well. For girls they can have a menstrual cycle and breast development. Boys can be a little more challenging....a growth spurt can be overlooked as "normal" and changes in the genitals can be subtle to start.
I noticed that "C" (I won't use names for privacy) was aware of a certain part of his body at a very early age. He was only 12 months old. I had the pediatrician examine him and he said that everything was fine. I was still concerned at 15 months and again at 18 months and each time I was told by the pediatrician that he was fine, just very aware of his body. He was the smaller of my twins but once he turned two, his body physically started to change. He was passing up his twin brother in height and weight. He was looking like a little miniature man and I was determined to see why there were such drastic differences between him and his twin brother "T". I took C back in to the pediatrician and finally got the OK to do a bone age test (a wrist x-ray to help determine the age of the bones in your body. It's similar to counting rings of a tree trunk to see the true age of the tree. The radiologist checks the spaces between all the little bones in the wrist and hand to determine a bone age of an individual). We also did a DHEA (a blood test that can give a basic picture of what the reproductive hormones are doing). The bone age came back....C had just turned three and his bone age was five and a half. Two or three years older than his true age....The blood test came back normal but the bone age was enough to get a referral to an endocrinologist (a doctor who specializes in the diagnosis and treatment of conditions affecting hormones or other parts of the endocrine system). Most endocrinologists can diagnose and treat early or late puberty but we were fortunate enough to be referred to the same endocrinologist that I had worked with previously, whose field of expertise is treating children with early or late puberty.
Our first appointment confirmed that there was changes but not enough to start treatment, so we waited. A few months later we were back in and did a follicle stimulation test. (This test is usually done at the endocrinologists office. They will draw the patients blood before the GnRH antagonist is injected. Once the patient has been given the injection they wait one hour and then draw another set of labs. They will compare the 1st and 2nd set of labs to if there is an increase in hormones like testosterone). C's showed what we had suspected. He had precocious puberty. He was three years old. Now what?
We did all of the tests including a MRI of the brain and lots of blood work to rule out the scary stuff like cancer, tumors and adrenal issues. We were left with the diagnosis of "idiopathic central precocious puberty" (translation....the doctors don't know why the signal in his brain went from off to on and started puberty). We were told that we needed to start Lupron injections (it's medication that turns off the signal for puberty). We started the injections in July 2010.
Lupron works for most kids. It's an injection that must be given every 28 days and you need to continue treatment until the "normal" age of puberty, which is 11 or 12 years old for boys. Unfortunately C was the exception. We increased the dose and lessened the time between injections and it wasn't suppressing his condition. We were approved for the Supprelin implant in December 2010. The implant is placed in the arm like Norplant, which is a birth control implant. Norplant lasts five years, but Supprelin is placed and removed every year. Supprelin is not a form of birth control. It works to suppress puberty until the appropriate age. We had it placed in February of this year. Again we were very hopeful that we could get his puberty suppressed. Usually the implant works quickly. We waited two months and didn't see any change so we talked with our endocrine doctor and started a nasal spray called Synarel. The nasal spray is probably the most inconvenient of all the treatments for precocious puberty. You have to administer it two times a day at the same time. If you give it at 8 am in the morning you must give it again at 8 pm, every day. After using the nasal spray and leaving the implant in, we did start to see improvement this past summer, and we stopped using the Nafarelin. We thought we were on our way to C living a "normal" childhood.
The improvement did not last long. By August C was showing signs of puberty again. Another follicle stimulation test showed that he was somewhat suppressed but not 100%, so we discussed all the options and went with the placement of two implants at the same time. The doctors took out the original implant so that C wouldn't have to have a surgery every six months to replace an implant. We had the implants placed September of this year and are anxiously awaiting results. If the implants don't work, I am not sure what is left.
On top of all of that, we learned in September of this year that C's twin T has CPP as well. They are fraternal twins and both boys. CPP is a lot more common for girls. We now have two boys with the same diagnosis of idiopathic CPP. The odds of that being a random chance are so small that we are now wondering whether there is a genetic cause, some kind of side-effect from medicine I was prescribed to stop early labor, or something else. This is the hardest part....why is it happening and why is it increasing?
T had his first Lupron injection yesterday. It was the new kind that lasts for three months, so we're thankful that he won't need monthly injections.
I am hopefully that we can find answers and start a dialog about early puberty. This is not something to be embarrassed or ashamed of. Sometimes we can not control our bodies....as much as we might all want to, but we can get the word out there that this is happening and we want to know why. I want parents to know that it does occur in boys and there is treatment.
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