We had labs drawn early last week on Ayden Jane. We were checking thyroid and IGF-1 level for endocrinology and some things for immunology. So far we have heard on the endo stuff. Thyroid still looks good, check. IGF-1 has come down, but still not far enough so we are dropping her gh dose by 0.1.
In the aftermath, of all of this I have had some lengthy conversations with Dr. Miller about all things Ayden Jane. She has rechecked her diet for carbs that could be giving a 'false raise' to her IGF-1 level. She does not see anything in her diet (no hidden carbs) that would be adding any problems. So, basically, we know that Ayden Jane is simply metabolizing the gh differently than she did before illness (BI). Not sure if this was going to happen anyway or if it was brought on by illness, but guessing that illness was at least a piece. The improvement in IGF-1 is one way we can see improvement through lab work.
Other ways I see improvement include the recent jump in social skills, sleeping through the night (most of the time) and very recently a jump in her energy level.
Evidence of her energy level was Labor Day Weekend. Saturday, after the 2 plus hours bouncing I mentioned in an earlier post Ayden Jane followed that up with wanting to 'run' to the playground and play. She is cute when we go 'running'. We walk, then she picks out a mailbox or something to run to and we run, walk and repeat... Anyway, we made it the 0.8 miles there, played and then back. Whew. So what did she want to do at that point? She wanted to ride our bikes to the playground and repeat!
Sunday came and after church we spent several hours at the beach...
Monday we went to the water park and she never slowed down! We did, however, revisit an old issue. She ran so hard she absolutely crashed. Melt down in the wave pool! It was irrational and she didn't make sense. I knew she needed food and tried to get her to eat but she refused... It was about time to go anyway so we just gathered the other girls and headed out. She snoozed in the car on the way home, after sobbing a bit. When I got home she still was irritable and irrational. She refused to eat anything we had in the house. Finally, I got her to eat some grapes and a calm, sweet voice chimed in, Mom, can I still have a plum? It was like somebody flipped a switch.
Sounds awful you say? It was, but I was almost happy it happened because it was how she used to be... You know BI. So, I would say we are seeing continued signs that Ayden Jane's little body is still trying to recover from last winters illness, and it is recovering.... just..... very...... slowly.
In the aftermath, of all of this I have had some lengthy conversations with Dr. Miller about all things Ayden Jane. She has rechecked her diet for carbs that could be giving a 'false raise' to her IGF-1 level. She does not see anything in her diet (no hidden carbs) that would be adding any problems. So, basically, we know that Ayden Jane is simply metabolizing the gh differently than she did before illness (BI). Not sure if this was going to happen anyway or if it was brought on by illness, but guessing that illness was at least a piece. The improvement in IGF-1 is one way we can see improvement through lab work.
Other ways I see improvement include the recent jump in social skills, sleeping through the night (most of the time) and very recently a jump in her energy level.
Evidence of her energy level was Labor Day Weekend. Saturday, after the 2 plus hours bouncing I mentioned in an earlier post Ayden Jane followed that up with wanting to 'run' to the playground and play. She is cute when we go 'running'. We walk, then she picks out a mailbox or something to run to and we run, walk and repeat... Anyway, we made it the 0.8 miles there, played and then back. Whew. So what did she want to do at that point? She wanted to ride our bikes to the playground and repeat!
Sunday came and after church we spent several hours at the beach...
Monday we went to the water park and she never slowed down! We did, however, revisit an old issue. She ran so hard she absolutely crashed. Melt down in the wave pool! It was irrational and she didn't make sense. I knew she needed food and tried to get her to eat but she refused... It was about time to go anyway so we just gathered the other girls and headed out. She snoozed in the car on the way home, after sobbing a bit. When I got home she still was irritable and irrational. She refused to eat anything we had in the house. Finally, I got her to eat some grapes and a calm, sweet voice chimed in, Mom, can I still have a plum? It was like somebody flipped a switch.
Sounds awful you say? It was, but I was almost happy it happened because it was how she used to be... You know BI. So, I would say we are seeing continued signs that Ayden Jane's little body is still trying to recover from last winters illness, and it is recovering.... just..... very...... slowly.
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