Wednesday, April 18, 2012
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......
Friday, April 6, 2012
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.
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.
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