I have just found out that Alana has Triple X syndrome. Basically instead of having 2 X chromosomes, she has three. I have only found out a little amount of info at this stage, but from what I gather it can show no or few symptoms, to some having slight learning/developmental delays. So this could be the connection to Alana's delayed develpoment, like slow at walking and speech. We have an app with the Neuro dr at the end of this month, so hopefully he will shed some more light on this.
I have also found out that there is some abnormalities from an MRI that Alana had of her brain. Her CF paed didn't know much about it, but said that he will try to find more out and ring this afternoon. I am a little worried about this. I hope that there isn't anything serious She has enough already!
lara,
my son has a chromosone condition as well. If you want to talk about it you can e-mail me at odette_oz@yahoo.com.au and I can talk about it to you in private.
HTH
Odette
I hope all is okay with Alana. Did he say what kind of abnormalities? I dont think it was very good form for them to tell you something without giving you the info that you need at the same time. Layla has a metabolic disorder and when they told me about it, the paed just said "oh I dont really know anything about it - we think its benign." Yeah, that really put my mind at ease
Natalie basically all he could say was that it was like there was 9 small spots on her brain where it was like blood did not flow. What ever that means!He never called me back so unfortunately I am still none the wiser. I think I would actually just prefer to wait until her neuro appointment and have someone who knows what their talking about explain it to me.
Odette thankyou, I might take you up on the offer! I'll email soon.
Lara, how awful that you have more worrying news, after all you've been through. I've heard of triple X, don't know much about it, but understand that symptoms can be very mild? Hope the MRI scan was just an anomaly. Poor little Alana.
Lara, so sorry that you don't have any answers yet. Maybe you could give the Dr a call and just ask for a run down on the phone, something to tide you through to your appt??
I really hope that it's nothing too serious, Alana already has enough on her plate poor bubba. Hugs to you and Alana
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Triple X Syndrome
She has enough already!
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