Post by stacy (FINALLY back!) on Jun 12, 2009 0:16:12 GMT -5
My fellow brother and sisters in poetry,
I just wanted to take a moment to let you all know about something very personal going on with my life. You all know, or at least I would hope that you know by now, how much I think of you all as part of my extended family. Some of you have sent me pm's inquiring on what has been going on with my son, etc, since the assaults earlier in March of this year. That is still pretty much where it was, and I don't really know anything more than what I did.
The assaults were a blessing in disguise. Let me explain. My son was born with a lot of congenital health problems. He was born without thumbs on either hand, he had plagiocephaly, torticollis, smaller than normal radius and ulnar bones in both arms, and they immediately sent him to a genetics clinic at the local Children's Hospital, James Whitcomb Riley Hospital, in Indianapolis for treatment and testing. Of every medical test under the son performed, out of all the genetics testing we had to go through, nobody could give me a reason as to why my son was born the way that he was. We learned to live with it and accepted him as the miracle from God that he was to us. The doctor called me today to let me know something showed up on his CT scan from the assault when he was taken to the local emergency room. I guess it didn't show up initially, and had we not had the CT done (and clearly it would not have been if the assault had not taken place, hence that is why I said it was a blessing in disguise), then we would not have know that Mitchell has a lacunar infarct of the right internal capsule within his brain. The only thing his doctor could tell me was this...he normally sees it in children much younger than Mitchell and this was puzzling to him, but he wanted to get him into a pediatric neurologist ASAP. They told me to research it online to see what information I could find out about it, and they were going to do the same.
So, when I started researching earlier this evening, I could only find out information pertaining to the older adult and strokes. But, when I typed in "lacunar infarcts in the pediatric patient" I was stunned to say the least at what I found. Every site that popped up on my search engine was titled "moyamoya syndrome" or "moyamoya disease". Upon further research, I learned that just about every documented case to date of a lacunar infarct in a child is directly resulted from this condition. It is a genetic condition and clearly was present during the assaults and not manifested as a result of the assaults and the head trauma. It affects 1 in 2 million live births. So it is clear to me why it was so easily missed, if this is, in fact, what my son suffers from. I'm not sure what the prognosis is, but from the information I learned, it can be pretty grave. But if treated promptly, the outcome can be equally positive as well.
I clearly don't know if this is what he has, I don't even know if his diagnosis is related to moyamoya or not. We should be hearing something relatively soon from his doctor as to when we go see the pediatric neurologist. And of course, we will know more then when we see that doctor. So, if I'm not on here much, you know why. I am going to continue to devote all of my time to TPS, but that might even have to take a backseat to what is going on, as my children have, and always will be, my #1 concern. I just wanted to share this with all of you so that you all didn't think I was ignoring you, or whatever. Thanks for being the wonderful souls that you are. Your friendship is something in this life that I highly treasure and thank God for every day.
Hugs and love~~~
Stacy
I just wanted to take a moment to let you all know about something very personal going on with my life. You all know, or at least I would hope that you know by now, how much I think of you all as part of my extended family. Some of you have sent me pm's inquiring on what has been going on with my son, etc, since the assaults earlier in March of this year. That is still pretty much where it was, and I don't really know anything more than what I did.
The assaults were a blessing in disguise. Let me explain. My son was born with a lot of congenital health problems. He was born without thumbs on either hand, he had plagiocephaly, torticollis, smaller than normal radius and ulnar bones in both arms, and they immediately sent him to a genetics clinic at the local Children's Hospital, James Whitcomb Riley Hospital, in Indianapolis for treatment and testing. Of every medical test under the son performed, out of all the genetics testing we had to go through, nobody could give me a reason as to why my son was born the way that he was. We learned to live with it and accepted him as the miracle from God that he was to us. The doctor called me today to let me know something showed up on his CT scan from the assault when he was taken to the local emergency room. I guess it didn't show up initially, and had we not had the CT done (and clearly it would not have been if the assault had not taken place, hence that is why I said it was a blessing in disguise), then we would not have know that Mitchell has a lacunar infarct of the right internal capsule within his brain. The only thing his doctor could tell me was this...he normally sees it in children much younger than Mitchell and this was puzzling to him, but he wanted to get him into a pediatric neurologist ASAP. They told me to research it online to see what information I could find out about it, and they were going to do the same.
So, when I started researching earlier this evening, I could only find out information pertaining to the older adult and strokes. But, when I typed in "lacunar infarcts in the pediatric patient" I was stunned to say the least at what I found. Every site that popped up on my search engine was titled "moyamoya syndrome" or "moyamoya disease". Upon further research, I learned that just about every documented case to date of a lacunar infarct in a child is directly resulted from this condition. It is a genetic condition and clearly was present during the assaults and not manifested as a result of the assaults and the head trauma. It affects 1 in 2 million live births. So it is clear to me why it was so easily missed, if this is, in fact, what my son suffers from. I'm not sure what the prognosis is, but from the information I learned, it can be pretty grave. But if treated promptly, the outcome can be equally positive as well.
I clearly don't know if this is what he has, I don't even know if his diagnosis is related to moyamoya or not. We should be hearing something relatively soon from his doctor as to when we go see the pediatric neurologist. And of course, we will know more then when we see that doctor. So, if I'm not on here much, you know why. I am going to continue to devote all of my time to TPS, but that might even have to take a backseat to what is going on, as my children have, and always will be, my #1 concern. I just wanted to share this with all of you so that you all didn't think I was ignoring you, or whatever. Thanks for being the wonderful souls that you are. Your friendship is something in this life that I highly treasure and thank God for every day.
Hugs and love~~~
Stacy
