Tristan Finally Starts His Growth Hormone Therapy
September 16, 2011 – What can I say besides I am tired, but extremely thankful and excited about the future, and Tristan’s start of growth hormone therapy! Thankfully today Michael was able to come with me and the kids (who by the way were so good I cannot thank my lucky stars enough) to Kennedy Krieger Institute in Baltimore, Maryland for Tristan’s first growth hormone (GH) treatment.
The appointment went really well. Most of it was spent signing consent forms, listening to the possible side-effects, and anything else to consider. With everything there always comes some risk, but as for Michael and I we are confident this is totally worth it for Tristan to grow as tall as he genetically can before he hits puberty. There is no guarantee that what we are doing will even have an effect on his growth, but we will never know until we try.
Tristan will be given a GH dose every night with a small needle subcutaneously under his skin. We have to give it to him in the evening because that is the best time the body naturally synthesizes GH. We cannot give the GH before or after a shower/bath, because the warm water will make the GH ooze out of his skin. So we plan to give it to him once he falls asleep. Yes, I as his mother, who has never given a shot in her life to anyone, gave him his first dose of GH in the exam room. It was terrifying, and after I gave him his shot I cried a little and hugged him, and I told him I was so sorry and that I loved him so much. Before that, however, THANK GOD Michael let me use him as a pin cushion before I tried it on Tristan. Dr. Germain-Lee and her assistants seemed a little surprised he would want to do this, but he wanted to make sure I did it right on Tristan. The first time I went in at a 45 degree angle, but I was too cautious and the sterile practice water blebbed up under his skin. He said it was the most painful shot he ever received, but he just smiled to not scare Tristan. I felt bad, but I also now joke he better behave because I know how to inflict pain with a needle. Michael told me to do it again, and the second attempt was at a 90 degree angle and Michael said he barely felt it. So, Tristan screamed and carried on long after I gave him his shot. I do not even think he realized I gave it, but I give huge thanks to Michael, because I would have died had I caused Tristan any major pain like I did with the first shot on Michael.
Tristan will be monitored very closely now with regular blood draws every three months. Dr. Germain-Lee must monitor his thyroid more closely, because one of the side effects is that it can decrease thyroid levels. They also need to monitor his glucose levels, because it can also alter insulin levels. He will get x-rays taken to follow his growth plate progression, which thankfully now are at the age they should be. This is very exciting for Dr. Germain-Lee, because Tristan is so young, and most kids with Albright Hereditary Osteodystrophy (AHO) already have bones of seven or eight year olds. Also, kids often come to her later on in life, and the window before they hit puberty is very short.
This GH treatment will not make Tristan seven feet tall, but if it does work it will give him the greatest opportunity to grow as tall as is genetically possible. I hope and pray when he is a grown man that he will appreciate what Dr. Germain-Lee and we try to do to help him. Tristan’s results also could help many other kids who are sufficient with growth hormone, but do not grow properly. We looked at Tristan’s growth numbers and at one point he was at the 6th percentile, but that was two years ago, and since then he grew little. He is now at the 4th percentile, so as he ages it would only get worse without intervention. We will know if the treatments are consistently working about a year from now. Most kids on GH treatment grow anywhere from 3 to 5 inches taller during the first year. In the subsequent years the growth velocity will decrease to about 2 to 3 inches per year until their bone plates fuse sometime during puberty. I cannot wait to watch him sprout, and to buy him new clothes even if it means I buy several different sizes this year. It is totally worth every penny spent.
I am thankful to my God, to my husband, to my family, and to Dr. Germain-Lee and her assistants. I sit here exhausted and a bit emotionally drained, but please know that Michael and I love our son so much. Tristan is my right hand little man, and I would do anything for him. I have said it before that Tristan is my “light”. He teaches me more every day I live on how to be a better me, and for that I cannot thank him enough.
Thank you everyone for all your prayers, comments, and concerns. I will keep you updated on this journey, and we can all watch him grow or at least that is my hope.