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Galactosemia Support Group
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Galactosemia ForumsIntroductions & Personal Storiesalenna and cassidie's story
03/15/2010 10:36 PM
adcdiddy
Posts: 2
New Member

Hi everyone,

My name is Cassidie. I will be twentyfive this year. I have a daughter named Alenna, she is just over a year and she has classic galactosemia.

Alenna was five days old when I got a call from the state saying that I needed to rush her to the hospital becuase she might have a disease, and becuase I was breast feeding she might die!! That was by far the worst moment of my entire life. I was scared to death that my little baby may die.

I don't really remember what was said to me at the hospital, I actually can't really recall that two week waiting period, or the first metabolic appointment. It was so stressful and scary it just all blurred out.

Any how, Alenna is very healthy right now. Her levels keep going down, she is at a 2.4, and she is a happy happy baby.

I am glad I found this support group. I hope every one is healthy and happy!!!

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03/20/2010 01:55 PM  Top
hatbox121
hatbox121
 
Posts: 10501
VIP Member

Hey there. That is a very scary moment isn't it? We got that call too. Along with a flurry of activity rushing to the hospital, health dept, drs office, etc. And the dire warning against breast feeding. My daughter ended up as duarte though thankfully. Unfortunately though, there is even less research into the varients than the classic form, which doesn't have much either. Anyway, welcome to the group. Sorry you have a reason to be here but glad you found us.
Amy~ “When you come to the end of your rope, tie a knot and hang on.” ~Franklin D. Roosevelt

Current dxes-Ehlers Danlos Syndrome, Mitral Valve Prolapse w/regurg, 2 other heart valves with regurg, POTS, DDD, scoliosis, various OA, polyneuropathy of unknown origin, SI joint dysfunction/fusion/collapse, chronic rotar cuff tendonitis, impingement syndrome of the shoulder, chronic bursitis in various locations, degeneration of the sternum, vertigo, GERD, FM, CFS, CPS, various bone marrow lesions, brain lesions of unknown cause, migraines, TMJ, vertically bulging discs, Raynaud's, anemia, tinnitus, high copper levels, borderline glaucoma, colon polyps, intermittent RLS, Vit D deficiency, depression, Eye accomodation disorder, Essential tremor, recurrent kidney stones, sacral spine disorder, inflammed tendons, and inflammation of spinal nerves(no specific dx).

I'm am not a dr. I am not a substitute for a dr. All advice I give is based on research and my personal experiences.
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