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.

An Answer........Kind of......

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?

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!