Never thought i would step foot in a childrens hospital! I never thought i would have to bring my child to a childrens hospital! I never imagined how it would feel. It was AWFUL!!!!!
I took Mikey 2 weeks ago to the doctor for a slight limp. Before i knew it we were refered to a hospital out of town! I have a history of "Hemihypertrophy" its defined as "The enlargement of one side of the body or part
of the body." Turns out Mikey takes after his mommy! When i was a kid they new nothing of this disorder. It wasnt until i was an adult that i did my own investigation. I have an extremely mild form of this syndrom and it appears Mikey does as well. In my case its my entire right hemisphere is larger than the left but about 1/2 and inch +/-. In Mikey's case he is about 1/4 of an inch larger in his right leg only. This is great news bc this means if he maintaines this discrepancy he will have no limitation growing up.
Bad news..... there is ALWAYS bad news right! ugh! The bad news is apparently it comes along with numerous other syndroms that have a high rate of childhood cancer. Some of these are, Beckwith-Wiedemann Syndrome, Wilms' tumor, Hepatoblastoma, Klippel-Trenaunay Syndrome, Cutis Marmorata Telangiectatica Congenita (CMTC), Proteus syndrome, and Macrocephaly-Capillary Malformation. In order to rule these out and ensure Mikey doesnt have any of the forms of cancer we will need to bring Mikey for routine check ups. They will perform the following tests on a weekly/monthly basis until he is a few years old or a syndrom is completely ruled out by genetics.
Abdominal Ultrasound: An abdominal ultrasound examination should be
performed every three months until 8 years of age. Until 4 years of age, the
ultrasound should include views of the liver, kidneys and other internal organs.
Because the risk for hepatoblastoma drops markedly after this age, the remaining
ultrasounds can focus specifically on the kidneys
Measurement of blood alpha-fetoprotein (AFP) concentration: A blood
test to measure serum AFP should be performed every six weeks until 4 years of
age. AFP is released by hepatoblastoma tumors and can be a highly sensitive way
to detect these cancers. Because AFP levels are normally high during the newborn
period, measurements should be performed regularly and reviewed by an
experienced pediatrician or pediatric oncologist.
We will also be visiting a genetics specialist who will review our history and take some blood and perform some genetics testing on Mikey. This will help rule out and narrow down why he has the hemihypertrophy as well as a treatment plan. Our appointment with genetics is next Wed 09/28/11. Then 10/6/11 we will be bringing Mikey for his ultra sound. I am anxious to get these results and know what we are in for.
As of right now we are in a wait and pray mode. We pray that if he does have one of these syndroms
Until next week.... we will be out and about having a TON of fun! So if you dont hear from me until then dont panic!!!
xoxoxoxox
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