Thursday, May 27, 2010


Did I ever mention how much I hate waiting?
We got our scholarship application in yesterday, so now we wait to hear back on that. The good news is in the meantime we are working on getting a time slot for a consultation with Dr. H. The leading specialist in the field of RSS/SGA. I am so excited about this!!! I can not wait to meet with Dr. H and see what her opinion is on D.
Today, I called all of Daylon's doctor's to get copies of his medical records to take with us. I also called Shodair to see what all they tested for when they did the genetic testing last fall. All they checked on was 22q deletion and to make sure he had the right number of chromosomes etc. So, I asked them about running the tests for RSS just to make sure we aren't missing it. The genetic counselor is going to talk to the doctor and see what he thinks of testing the genetics that go along with RSS. They had decided in the beginning not to test him for it because he is symmetric. In other words, he does not have the obvious characteristics that some RSS children have. Either way the treatment would be the same. I just find it funny that several people we know have commented on how he reminds them of an RSS boy they took care of at one point and now we have the SGA diagnosis which is very similar to RSS, and then find out that it's never been ruled out. Guess we will see what happens.
Waiting for records. Waiting for HRC to call to get us set up with his meds. Waiting to hear back about the testing! Patience is not my strong point!!
You can find more information on RSS here.

Wednesday, May 26, 2010

The MAGIC Scholarship

I am so excited I am in the process of emailing over all of the information and the application for the MAGIC Convention Scholarship program. We are barely making the deadline. They wanted them in by no later than June 1st. Huge sigh of relief. As long as the computer doesn't act up we will be in good shape.

Tuesday, May 25, 2010

Growth Hormone Therapy: Not What You Think!

Growth hormone therapy is not what you think. It is NOT all about linear growth. We are not doing this just to make our son taller. We are doing this because growth hormone plays an important role in other functions of our body too. Yes a child may grow a couple inches on GHT but that doesn't show what has happened on the inside where the heart and lungs have become stronger and more efficient, so the child can breathe better. Growth hormone is the key to all cell growth and reproduction. You can find more information on this here.
If you were to think about it as though your child is not producing enough growth hormones or the hormones they are producing are inadequate what other cells in their little body are not growing as they should? So not only is the child short, but he may have other problems too. Lung issues, heart issues, bowel issues, you name it can all be affected by not having enough growth hormone.
It is no different than giving a child who is diabetic insulin because they can't produce it on their own. You would not think twice about whether or not to give the child insulin. Why should a parent of a child who is GHD or GH insufficient have to second guess themselves for giving their children something their body needs?

Starting Growth Hormone Therapy

We finally got a diagnosis for our little boy. He is SGA or Small for Gestational Age. So he will be put on Growth Hormone therapy for at least six months to see how he responds. If he responds well then we know that the growth hormone he produces on his own does not function properly. If he doesn't grow and get to feeling better, then we know we need to do more testing. It is possible that SGA may not be his final diagnosis. If he does not grow than we know that we need to do more testing on his IGF-1 levels.
So now we are waiting for the drug company to call us to set up shipment & training for our first months supply of Humatrope (HGH). Once we talk to them they will get it shipped out to us and will then start dealing with the insurance company to get approval.

The MAGIC Foundation

Daylon never caught up like I was told he would by the pediatricians. Everyone thought he would just take off and be back on the charts in no time, but he didn't. So I started looking into IUGR and other growth problems and stumbled across the MAGIC Foundation (Major Aspects of Growth In Children). They are amazing. It is a foundation made up of parents and families that have gone through most of the specific growth disorders. They have helped educate me about what could have or could be causing Daylon not to grow as he should.
In July they have an educational convention where you can go and talk to the leading doctors in the field pertaining to your child. We would love to go and are in the process of applying for a scholarship but we would still have to come up with the money for airfare. Things have been really tight around here with Shawn being out of work for a month and a half so we can't do it alone. We are asking our friends and family, even strangers to rally around us and help us get to the MAGIC Convention so we can learn more about Daylon's growth disorder and how we can help him be all that he can be. Not to mention how we can help his sister's understand why their little brother has to have a shot every night and network with other families to see how they are dealing with all of the challenges we face everyday.
Daylon has been diagnosed as SGA. The MAGIC Foundation has helped us in so many ways. So many wonderful people to talk to that know what it is like to go through life wondering what you are doing wrong that your child is not growing. Wonderful people that help you understand the importance of advocating for your child to be sure they get the help and treatment that they need.

Background Story

Our son Daylon was born May 11th, 2008 (Mother's Day). He was considered IUGR at birth and weighed only 5 lbs. 5 oz. and 18.5 in. long (although the length is probably off, considering he was 17 1/8 in. when he was 5 days old). In the nursery he had a lot of trouble maintaining his body heat and keeping his blood sugar up. After the second day of numerous pokes on the heel the doctor told the nurses they could quit poking him because he was "asymptomatic". So they did and his blood sugars haven't been an issue since. He also had a lump on his collar bone that was later found to be a 4th branchial arch remnant. Throughout his first year he was consistently below the charts, not even on them. At one year old he was 13 lbs. 7 oz. and 24 3/4 in. Now at 2 years old he weighs 19 lbs. 12 oz. and is 29.5 in. long. According to our Endocrinologist Daylon's height age is that of a 10.5 month old and weight age is that of a 10 month old.
You can find more background information on Daylon's Caring Bridge site