New Implants and finally suppression!

I know that I haven't posted since last summer, which is actually a good thing. We found out last fall that the twins are finally suppressed! Finally! They both have the Supprelin LA implants. Our endocrinologist decided that we could test them every 3 months and as long as their numbers stayed consistent, we could keep the implants in. Fast forward today....we were able to keep the implants for 18 months (the normal length of time is 1 year).  The doctor had actually toyed with the idea of taking the implants out and seeing how their bodies respond.....maybe even stayed suppressed after removing the implants. We had hope that maybe the twins could be spared yearly procedures of pulling out the old implant and putting new ones in, but at their most recent visit the doctor felt like they were too young and too difficult to suppress to take that chance. So the process has begun.

We were lucky to extend things an extra 6 months but now we need to move forward with new implants because their bodies can start to reject them or they can get an infection. For any of you who don't know, each implant costs about $17,500. Thankfully we have health insurance which will help cover the cost of over $35,000 but we still have our portion, which will be over $5000. This has to be paid up front before the implants can ship. Normally we are more prepared for this but we have had extenuating circumstances this year that are making that very difficult. I have posted more details about all of that on my new blog: Someone Took my Easy Card (someonetookmyeasycard.blogspot.com).

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.
       

A new discovery

We have been busy with life and waiting for the nasal spray to work and tonight I was helping C get ready for bed when I noticed changes. It was chest hair....on my 5 year old boy.(it's still blonde and fine but it's there and it wasn't 4 weeks ago) It was like a punch in the gut. It made me so sad to see his little body changing even after 4 weeks on the nasal spray. I am at a loss. Everything we are doing should be turning the signal off and it's not. I am worried about T as well. He is still growing and seems to be changing as well. We have their next set of tests in July but that might be to far in the future. I sure wish we knew what was going on......

Now there are two......

I have not posted for a while because we have been playing the waiting game. Sometimes I feel like we are living the Dr. Seuss story, "Oh the Places You Go". If you haven't read it, do, it's a good book that can describe life's ups and downs. Anyway I feel like we are stuck in the "waiting place". Everyone is just waiting.....we are waiting to see if we can get C's and T's puberty under control. They had their follow up appointment at the end of February and we did more labs and x-rays in preparation for it.

 We were assuming that T was doing OK because he seemed to tolerate both injections well (3 month Lupron injections). But upon physical exam he is not suppressed. (his LH is also still higher than normal) His Doctor indicated that we might need to do the 3 month Lupron injections every 2 months. She wanted to give him just a little more time so we will not make that decision until July of this year when we do another stimulation test.

C is also struggling to be suppressed. His labs and x-ray were OK but his physical exam also indicated that he is not completely suppressed. (His testosterone is lower but not low enough)  He is basically maintaining at "simmer" which means his body will not completely shut off the signal or his body has managed to breakthrough the implants. His doctor has spent hours trying to figure out why he is not responding like her other patients. Right now there are only a few patients throughout the country that have two implants and so far all have responded to the increased treatment besides C.

 So.....we had to start another medication on top of the two implants. It's called Synarel. It's a twice daily nasal spray that must given at the same time each day.  If you do the dose at 8am, you must do it at 8pm as well. Everyday must be on the same schedule without missing a dose. This becomes very challenging if C sleeps in or we are out at night longer than expected. Most of the time if there is even a slight possibility of being out later at night I bring it with us.  The nasal spray takes about four weeks to really start working and when you start it, it will increase the symptoms of puberty before it decreases them. That has also been a challenge because C is just five but he can have the same "hormonal changes" as a teenager. We have experienced many fluctuations in mood in the past 2 1/2 weeks but I think he is finally starting to turn the corner. I truly hope he will be able to get some relief and get the puberty signal to turn off. I would love for him to be a normal 5 year old that doesn't have to worry about "teen" issues.

Our next step......T will have his next injection is May and then T and C will both have a stimulation test in July. We will just have to evaluate the course of treatment after that.