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Posts by nyveronica

At a Fragile X conference I attended last week, there was a whole session on apps for the iPad. It's staggering and amazing what's out there. And to reiterate what another poster said: Instant cool factor. This is so big. Show up with a Dynavox and you're already labeled as different. Show up with an iPad and you're a regular kid; a lucky  one at that.
I teach "birth mapping" in my childbirth classes. One destination, many possible paths. We need to be open to everything, see clearly and sometimes change course. In my job as an L&D nurse, I preach the same. When I see a very detailed, very rigid birth plan, I worry for my patient. My facility is very medical, very high epidural rate and a c/s rate over %50. I encourage my patients to keep 2 things paramount: Health of baby & health of mama. I teach them how to read...
We use a melatonin spray by Source Naturals that is sustained release. It's been very, very helpful with our sleepless Fragile X boy
Not at all what I'm saying. Genetics is a lot like math. The information is absolute when it can be pinned to a gene. Girls with X chromosome disorders can get them from their mother or father. Boys have to get them from their mother. I completely and totally understand that girls are affected with Autism spectrum disorders and I also understand that they are often missed and harder to diagnose (which is profoundly frustrating). Genetics isn't a theory.
That's the thing with genetics (and specifically genetic disorders). Only one gene needs to be affected for there to be a presentation of symptoms. Moms aren't to "blame" for passing along X chromosome disorders to their sons, it just "Is". Try not to take it that way.
Being the mother of a Fragile X boy, I found this article fascinating and I'd love to read the whole abstract of the study. A side note on genetics: We (mothers) pass and X along to our daughters as well as our sons. Boys are more affected, more readily diagnosed with x chromosome mutations because they only have one X to work from. Girls are trickier because they get two X's (one from each parent) and work from the good and bad X's.
Are you sure they're properly fit? Our first pair wasn't great, they got tweaked and now my 21 month old actually tries to put them on himself. A few times over the summer we took them off for the sandbox. Anyway, I'd start with the fit. Good luck!
The physical characteristics are more of a long-face & large-eared look. Go to www.fragilex.org and look over the Fragile X Foundation's site. It has really good, really grounded information. If your son gets a positive diagnosis, you can have his pediatrician or geneticist write you a prescription to be tested
My 21 month old son was just diagnosed with Fragile X early this summer. First off: Big hugs to you! This is a hard, hard time; all the waiting and wondering. Take it easy on yourself. Your question about one son having it and not the other? The answer is, yes it is possible to have one affected son and one unaffected son from the same parents providing you are not affected on both of you X chromosomes. You only pass along one to each son and you may have given your...
Quote: Originally Posted by faeriecurls Where do you work (you can PM me if you don't want to say in the thread)? I'm delivering in a hospital in NYC and it's pretty much toe the line there. I can't really be reported to CPS - it am a teacher and it would jeopardize my job. I work upstate, at a hospital in the city of Poughkeepsie. The law reads that the facility can report you and that it can't be held in any way liable if they give the meds...
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