The Results are in.....

C and T had their MRI's on the same day in June. Both had to be sedated because of their age. They both did wonderful! We anxiously awaited the results. Dr. Swineyard called us and went over the MRI results. C's is still normal which is a good thing. It's difficult to understand why his CPP is so challenging to treat but at least it's not something concerning like a tumor. T did have something show up on the MRI which does not explain the CPP, but it's good that we know. He has an Arachnoid Cyst in his brain. This is a fluid filled cyst that is small in size. As long as it stays small and does not start to cause symptoms we should be able to leave it alone. If he does start to develop symptoms then he might have to endure further testing and possible surgery to remove the cyst. My hope is that it will just stay the same and not bother him. We will repeat an MRI in two years to make sure the cyst is staying unchanged. Dr. Swineyard also changed the course of action for the twins. He reviewed all of the medical records again and decided that it would be better to remove the implants and immediately start the 28 day Lupron injections for both of them. So it looks like we will be starting Lupron this year in October. I feel for the twins, the injections can be painful because of the size of the needle and the thickness of the medication. I am sure they will be strong, like they have in the past but it does break my heart to see them go through all of this. On the bright side they will be 7 soon and that means we should be down to the last 4 years of treatment.

Second Opinion

So this week we met with a new Pediatric Endocrinologist. We wanted to to see if a fresh pair of eyes could see if we have missed something or if we have the wrong diagnosis. He was great! He examined both C and T and went over the history, which was very lengthy! After getting a better picture he thought that the best course for the twins would be to basically start from square one. That means that when it's time to change the implants in September, we will not replace them. We will give their bodies a little time after the implants are taken out, to be free of the medicine, and then do a new Follicle Stimulation Test. We are hoping that if we start back at square one we will be able to get a new perspective on their puberty. Once we have the results from the Follicle Stimulation test we will be able to determine which course of treatment, if any, we will take. The doctor explained that some younger patients, such as the twins, can have a break-through on the longer acting medications such as the 3 month Lupron or year long implant.

 He said that a colleague of his has been studying Lupron for over 20 years and what they found is the younger patients tend to brake through the medication. What that means is that using the longer acting medications such as the 3 month Lupron injection, can have a higher likely hood of not being fully suppressed for the entire 3 months. So for a young patient like T, Lupron every 28 days might have done a better job for him than the Lupron every 84 days or the implant that is suppose to last a year.

After he explained the differences in medication he expressed a need to repeat the MRI for C. He was also concerned that T had not had an MRI because there are some benign brain tumors that can be causing this issue and mimicking Precocious Puberty. He thought that the likely hood of T having a tumor was small, and reassured us that he thought it would most likely be negative for a brain tumor but we need to do the MRI just to be sure. Overall he thought that at least for now we have the correct diagnosis and that starting over will really just reassess everything.

After this appointment we left feeling hopeful that we might have an answer as to why the twins are still showing signs of puberty, even after all the treatments we have tried. I am hoping that we might finally have some peace of mind that we are doing the right thing for them.

Follow up appointment leaves us wondering.....

C and T had a follow up appointment this past week. We were scheduled for an appointment in April, but when I took C into his pediatrician in December, he noticed that C was physically changing again. He was concerned enough to tell me to let Dr. Foster know and see what she wanted to. I Called the endocrine nurse the next day to let her know what was going on. Dr. Foster ordered labs and a bone age for both C and T. I had those done the following week and waited to hear the results.

We went to doctor Foster's on Tuesday and the good news is that the bone age for both C and T is still 8 years old. Labs looked great as well. The bad news is that C is physically changing and there isn't an explanation as to why. I am at a loss. Dr. Foster feels like C just might continue to have slight changes but overall stay suppressed. I just wish my little boy could stay a little boy until it's time for him to grow up. He's only 6 1/2 and has to deal with issues that are at least 5+ years ahead of him. I wish I could understand better what is going on with his body. I wish I could understand why puberty is starting so much earlier for boys and girls. I know that researchers are getting closer to understanding why it's happening to so many girls, but I think too many parents are unaware of what is truly going on with their boys because they don't know this problem exists. Dr Foster said that C and T are not the only ones who are difficult to suppress. They are growing in numbers at her clinic. I hope we can find an answer soon.......

New Implants, New Hope

I know that I haven't posted in a little while but I wanted to see what progress the twins would make after their new implants. C received two new implants to replace the two he had and T received one implant to start with which would be replacing the need for the Lupron injection.
         One of the other things that we had been considering were items we had in our home that we were using on a daily basis that might be contributing to their CPP(Central Precocious Puberty). There are several different factors that can contribute to the onset of CPP. Unfortunately, there isn't one chemical or one factor that we could eliminate from our home that could make everything turn off in the twins. We had to really read and research to understand what things we could try to eliminate to help. One of the first things we got rid of was plastic.......well we got rid of as much plastic as we could. All plastic bottles, plates, cups, utensils, storage containers, and anything that was easy to dispose of. That also included cheap toys and items that were in our home that we could live with out. I also stopped using anything that was plastic that needed to heat up because the heat helps to release the chemicals in plastic. We stated eating beef that was organic and grass fed instead of regular beef which can contain hormones, which can be stored in the fat of the meat and is released when you cook it. We also started drinking coconut milk and organic milk instead of soy milk. (Recent studies are showing that soy milk seems to have more negatives than previously thought so we decided to remove that as well).
       I think that one of the biggest things we took a chance on was moving. I know this sounds extreme but we wanted to remove all the possibilities for the CPP. Environment can be a factor and the only way to know is to remove the twins from the environment for 6 months and see if it makes a difference. This was a very difficult decision but after much consideration we knew we had to give it a chance. We moved in October 2012.
        The twins had their follow up appointment after the implants in October and for the first time it looks like the puberty has finally slowed down, especially for C. We remain cautiously optimistic that the implants will do their job and all the changes we made will finally make a difference and the puberty can be turned off. We will be doing another bone age and exam in February and I am hopeful that I will hear good news.