View Full Version : Well....
03-27-2008, 10:07 AM
I heard from the genecists yesturday afternoon. Christina does have Muenke Syndrome. They are going to test my husband and I during Christina's post-op appointments. I really think she got it from me and my family but we'll see.
03-27-2008, 10:13 AM
So sorry to hear your new's, the only possitive from this is you know where to go from here.
And it's just another "label" to add to your princess xx
I know EXACTLY how you feel Carol. I am thankful that Muenke is considered a "non-syndromatic" syndrome. I have a couple of great articles about it if you are interested. I too feel that Bradley got it from me and my side of the family. I am going to get tested as well. I just hate that now he and his brother have a chance of passing this on to their children which increases the chances of cranio in them as well. PM me or call anytime you want to talk, rant, or just chat!
03-27-2008, 11:59 AM
Carol- I am so sorry to hear this. BUT, of all the syndromes isn't this one of the mildest??? I think that no one even needs to know (outside of us, of course) unless you want them to know. Aren't these kiddos perfectly normal except for a few mild things?? I have not read too much on it, though!
Yes I agree with you Sadie. I will never put this on any of his school or other records. These symptoms were just labeled as a syndrome in the last 10 years. There are 100's and maybe even 1,000's of people that may have it and not even know it, myself included. I did tell his pediatrician and opthamologist, but that is the extent of it I believe. Even the WORST cases of it only appear as developmental delays (which as long as it is just delays, doesn't matter to me one bit), and mild hearing loss-that is not tone-related, meaning the patients that did indicate they had mild hearing loss did not wear hearing aids. It is more of a background noise/interference type of hearing impairment, not deafness.
After I researched it a bit, I felt MUCH better about it.
03-28-2008, 10:18 AM
I thought that she may have had it back in November when we met with the genecists. It sunk in last night that she really has it. I know it isn't like cancer or anything severe like that but yet I'm still feeling like crap over it. I mean like, me feeling guilty because I could have done something different or I should have known type thing. How am I supposed to tell her that her children have a 50/50 chance of having to go through hell over surgery? Chris and I will be tested...what if that comes up as one of us having? I want more children but....
I'm just not having the best of days with this.
Children with Muenke have probable chance of developmental delays or learning disabilities. I went through that, my mother went through that. I don't want that for her. I know what it is like on the receving end to be made fun of as a kid because you are just "dumb" and can't keep up. My mother and I both also have hearing loss. (sensuro nero) What if it is connected?? I don't want that for her and in a way, I feel like I gave her this....
Sorry for my rant.
03-28-2008, 12:59 PM
But you know about it early so the delays can be dealt with as they come and she should never feel "dumb". Don't worry it will all be ok. You have a smart, beautiful little girl and I am sure you will both rise to this challenge!
03-28-2008, 02:26 PM
Hey Carol! YOu know what? I still love that little angel Christina!! She is still beautiful no matter what! :adore :smooch
<TABLE id=table43 style="TABLE-LAYOUT: fixed" cellSpacing=0 cellPadding=0 width="100%" border=0><TBODY><TR><TD class=textNormal12>Chris- you cannot beat yourself up over this. You had no way of knowing if you had this syndrome. But I do understand how you feel. I am pretty sure I have it before even getting tested. It really bothers me to have to tell Bradley one day that their is a chance his children will have muenke, therefore possible cranio, as well as our older child that doesn't even have it. He can still carry it and pass it to his children. I hate for them to have to go through this with their children, but at the same time, I don't want them to let this stop them from all the joys of having children brings to your life.
Here is an excellent article written by our genetecist, and Dr. Muenke himself.
I hope you find it helpful.
<!--li/Paragraph #1--><!--/Unordered List--><!--Subsection level=4 #1--></TD></TR><TR><TD class=textNormal12> </TD></TR><TR><TD class=textNormal12>
</TD></TR><TR><TD height=5> </TD></TR><TR><TD class=textNormal12> (http://www.geneclinics.org/servlet/access?id=8888890&key=2rVN8v6y1iy89&gry=INSERTGRY&fcn=y&fw=53IJ&filename=/glossary/profiles/muenke/index.html)
03-28-2008, 05:48 PM
Oh Carol please dont blame yourself, your daughter is beautiful and has 2 wonderful parents that whatever happens in her future will be there for her. We all struggle in one way or another as we grow up & sometimes this makes us stronger and better as adults so try and stay positive for Christina. It's just another label & your little one will just continue to amaze you. Hugs xxx
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