Hi. I am mother to a five year old G/D girl named Madison. At day 9, the dr. office called me and told me to IMMEDIATELY stop all nursing and milk formula, to go to the health dept., that they were opening a special Sat. clinic just for her, and to report to the outpatient lab at the hospital as soon as they opened on that Monday. Needless to say, I was scared out of my wits. She was dxed with D/G with a level that I can't recall. I know the number is not supposed to ever go down, but I can't help noticing that she has issues that sound alot like CG. Madison has a speech delay, developmental delays, possibly an autisim spectrum disorder PDD, and vision problems. I can't help but wonder if despite the "experts" saying that they will not have any issues, if all of this is related. Perhaps it's just a coincidence but I am having her levels tested again anyway. I do remember that she was at the 5% levels at one year. Anyone else feel this way or have children with delays?
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Duarte Galactosemia
- By hatbox121
- Posted May 1, 2009 at 5:42 pm · 2 replies
- In Tips for caregivers
- Shared with the public
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- By Sandy_in_Ohio
- Posted July 18, 2009 at 8:20 pm
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Hi,
I have a 6 yr old son also diagnosed with DG. I don't remember the exact numbers but his levels at the last screening were somewhat higher than you report. He too has speech delays and hearing issues. I think you might be right that there are more ramifications to DG than are currently shared with parents. Do you know anyone else with DG?
Sandy
- By dd_indy
- Posted October 23, 2009 at 4:53 pm
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We have a 7 year old daughter who was determined to be a DG. We found out because, on recommendation of a friend, we ordered about a $100 kit (through a private company) that tested for various conditions (blood spect. first but then genetic if a positive hit on any of those) in addition to the Indiana state mandatory newborn tests done with the heel prick. We got a hit on galactosemia so they did the genetic phase of our private testing - about 1/2 day after the doctor's office called in a panic telling us the same thing (stop all milk), we received the genetic confirmation that she only had DG, not GG (classic). So we knew nearly immediately that she wasn't as bad as some.
She has progressed nicely without any problems so far - in addition to being pretty she's doing good in school (but I am daddy :-).
We have always been careful with her diet but not insane. We do let her have cheese, milk, ice cream, (never let her binge or really have a lot of any in a given day) but we buy her soy milk for her dominant milk product.
From my own research (I'm an engineer and a lawyer so I know how to research a bit, but I'm still not an expert), I note they say that you don't have to control diets, but in an abundance of caution, we play it a little safe to this day. We talked to the genetic metabolists (or metaboilic geneticists, not sure which way) at Riley Children's Hospital in Indy and I'm thinking about contacting them again so we can have a better understanding of what we should and should not do in the way of diet. I feel we are more restrictive than necessary, and now that she's noticing her diet, I want to back off if we can.
We did a challenge test when she was a little over a year or so, but I don't recall specifics other than they told us we were okay. For the life of me, I cannot recall whether Riley even recommended a restricted diet of any sort - we just did it and my memory tells me it was a me thing, not a doctor thing.
So bottom line, talk to the experts and have trust in them. If you're worried enough, regardless of what they say, then maybe it will give you peace of mind to restrict her diet a little - it's not that hard to do, albeit a bit more expensive.
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