Sarah, I don;t have any helpful words however, I do know what you are going through and I am feeling for you. We spent the first hmmm maybe 3 years of Finn's...
Dearest Sarah I have posted to you on the other site as well regarding a bit of Finn's history. Listen, you are Superwoman:)))). You are doing a fantastic...
Sarah, Candra had so many infections as a young child that she become immune to all but two antibiotics. Aftre we discovered this we kept that in mind. She...
Dear Sarah I've read your email and my heart goes out to you. I think you should definitely go back to your doctor not only for Ireland, but for your own sake...
Thank you all for your kind words and advice. I have taken it to heart and am acting on it. I started her on zithro again yesterday, and with the fever meds,...
Sarah, My heart goes out to you too. You sound like a remarkable woman to be able to look after your little one and set up an internet site too. I think it's...
While I was out today the nurse from the genetics department called. She keeps missing me, so today she finally gave in and told me via answering machine that...
Hey All, Hope this December is being good to you. Can't say its my favorite month. I am just posting because of a funny thing that has been happening lately....
Dear Sarah I expect Ireland is afraid of the noise the hoover makes. I have noticed that many children with Overgrowth are sensitive to noise. Shannon is 6,...
Hi Sarah, What test did they do on you, if you don't mind me asking? Did they do the NDS1 gene test for deletion and/or mutation or did they do "karyotyping"?...
Just the Karyotype, not the NSD1, but right now that is good enough for me. I am about to be involved in a study for trichotillomania, and they will be doing...
PS, I am so sorry to hear about your miscarriages. I have had a couple, and I know it may not be the same for you, but I certainly can sympathize with how...
Thank you for the kind words....it is very hard...but when I realized I was pregnant this last time...I did not get my hopes too high in an effort to keep...
Pam, Are you taking those super-early home pregnancy tests? My last miscarriage, a few months before I got pregnant with Ireland, I took a pregnancy test 3...
Yes I was using early tests....I knew I was preggers before the tests though...felt pregnant...morning sickness and heartburn...that I only get when pregnant!...
... She is feeling good. She's always somewhat "sick", but right now she's great compared to usual, thanks for asking! I'm glad she has an older sister,...
Thanks for the compliment....some days I feel like I am crazy to want another one! LOL! I think it would be sooo wonderful for Kevin. He really likes his 18...
I just wanted to say hello to everyone. Also, today in speech therapy, using a toy telephone, they got Ireland to say her version of "hello"!!!!! Watching...
my name is jan ferguson and my son jeremy was dx with soto for 2 years and now that they have done the gene test it is undx overgrowth syndrome. yesterday they...
sorry but forgot to tell you about jeremy; abdominal situs inversus, asplenia,malrotation,mild aortic valve with a small leak, he does have large kidneys but...
... hi and thank you... abdominal situs inversus is everything below his heart is reversed. normally someone with situs inversus has dextracartia or levacartia...
Hi Jan, and welcome to the group. I hope you find answers here. I wish I could help, but I really don't know anything about the things you mentioned, but...
Hi Jan does this mean that because the NSD1 test came back neg they are now saying he does not havbe Sotos? Because I understood that this test was not...
Hi everyone i work with a little girl called Clareese and she was diagnosed with Fragile x syndrome and i wanna no people with the syndrome or people caring...
Hi Lisa. My daughter Ireland has Sotos, and her paternal half-sister is in the process of being tested for fragile x, but we do not know yet. I hope someone...
Birthday Reminder from the Calendar of UndiagnosedOvergrowthSyndromes http://groups.yahoo.com/group/UndiagnosedOvergrowthSyndromes/cal Sarah's Birthday ...
UndiagnosedOvergrowth...
UndiagnosedOvergrowth...
Dec 24, 2003 5:40 am
105
Reminder from the Calendar of UndiagnosedOvergrowthSyndromes http://groups.yahoo.com/group/UndiagnosedOvergrowthSyndromes/cal Merry Christmas! Thursday...
UndiagnosedOvergrowth...
UndiagnosedOvergrowth...
Dec 25, 2003 5:51 am
107
Hello everyone. I am just feeling antsy and running out of things to clean, so thought I would post. Ireland and her sister have been at Ireland's dad's...
Hi guys, this is totally off the topic of this board, but I thought it might be interesting. Have you all seen the ads for the new movie, "Big Fish"? Well,...
Having problems with message search?
Fill out this form to ensure your group is one of the first to be migrated to the new message search system.
