fhjmom Posted November 2, 2010 Share Posted November 2, 2010 DGS is 4 months old and had some odd skin lesions at birth. My step-daughter called today after finally seeing the dermatologist. The dermatologist is concerned it is a rare genetic disease that may potentially be very serious and referred them for genetic testing. If it is this particular disease it can vary widely in the severity of symptoms. Please pray that it isn't the suspected disease and is something harmless instead. If it is the disease, that it be mild. Also, please pray for DD; she is young (19 YO) and is already in a less than ideal situation. Having a child with medical needs is going to be very, very hard for her. (She had a *very* hard time just dealing with her sisters' hearing loss). Thanks! Oh, and you might say a few prayers for G-ma to be able to handle things diplomatically and provide support without telling them how to do things and alienating DSD in the process. Her relationship with us has been very trying over the past few years. Quote Link to comment Share on other sites More sharing options...
Heatherwith4 Posted November 2, 2010 Share Posted November 2, 2010 Praying! Quote Link to comment Share on other sites More sharing options...
cindergretta Posted November 2, 2010 Share Posted November 2, 2010 Praying! :grouphug: Quote Link to comment Share on other sites More sharing options...
5knights3maidens Posted November 2, 2010 Share Posted November 2, 2010 Sure I'll pray for you. :grouphug::grouphug: Is this disease EB? I can't remember the long name. :001_smile: Quote Link to comment Share on other sites More sharing options...
StaceyinLA Posted November 2, 2010 Share Posted November 2, 2010 For the baby, and all the family involved. Quote Link to comment Share on other sites More sharing options...
fhjmom Posted November 2, 2010 Author Share Posted November 2, 2010 Thanks all! I am still kind of in a fog. I am so worried even though I am telling myself to wait until we get the official diagnosis. Is this disease EB? I can't remember the long name. No, the abbreviation is TSC. It can cause epilepsy, cognitive disability and a host of other things. I truly appreciate the prayers. Quote Link to comment Share on other sites More sharing options...
Laurie4b Posted November 2, 2010 Share Posted November 2, 2010 Oh that would be so hard to wait for your baby's baby's results. Prayed! Friends of dh's had a 50-50 chance that their newborn son had a very serious genetic disease and they just got the test results back and he doesn't! Hope you get the same results. Quote Link to comment Share on other sites More sharing options...
love2read Posted November 4, 2010 Share Posted November 4, 2010 Praying and I'll be watching for an update. Quote Link to comment Share on other sites More sharing options...
JoyfulMama Posted November 4, 2010 Share Posted November 4, 2010 Praying! Just work through today - don't worry about tomorrow. :grouphug: Quote Link to comment Share on other sites More sharing options...
fhjmom Posted November 5, 2010 Author Share Posted November 5, 2010 Thanks to everyone! They have an appointment with the neurosurgeon on November 16th that saw DGS after the car wreck they had when he was 4 days old. This disorder has some neurological manifestations, including seizures. Since he had already seen this doctor and was due for a follow-up anyway, it was the quickest route to see someone and hopefully get some answers. Please keep praying and I will update then! Quote Link to comment Share on other sites More sharing options...
Teachin'Mine Posted November 5, 2010 Share Posted November 5, 2010 I'm praying for everyone. :grouphug: Quote Link to comment Share on other sites More sharing options...
Sparkle Posted November 5, 2010 Share Posted November 5, 2010 Praying! Quote Link to comment Share on other sites More sharing options...
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