Metabolic moms! I need you! Fustrated with todays ER visit and our Metabolic Dr:( - Mothering Forums

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#1 of 5 Old 11-02-2008, 04:45 AM - Thread Starter
 
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This morning at 4am DD (29 mo today) starts throwing up, I think wonderful, she's got the stomach flu were all just getting over but she doesn't keep throwing up.
She throws up like clockwork every 45-60 minutes for the next several hours (she was dead asleep and just waking up to vomit but she also partied until almost 3am because my mom let her take a 3hour nap when she had her while I took other dd ToT'ing.) so I suspect its her BS dropping rather then the stomach flu since that was a very nasty flu and once you started vomiting
you don't stop for several hours with it coming out both directions. So I start checking BS and its bouncing around between 70s and 90s. Vomiting cycle doesn't stop until its over 100. Drops below 100 and vomiting starts again. I do the warm water trick to get her to pee in a cup and dip her urine and she's got ketones! Save a sample and take it with us to the ER to have them run a UA and confirm it so I have proof she can make ketones ( we were not sure). Anyway, its always been my understanding that I need to keep her BS over 100. So I take her to the ER where they get her hooked up and vomiting stops. They confirm the ketones (1+) and her BS is 95. Spend a couple hours on D10, (get her to eat refried beans and rice plus 7up when we first got there.) and check her BS, its 167, stop the D10 and wait an hour and she's already down to 108. Have metabolic Dr paged and get this, she told the ER Dr she wasn't even sure DD had SCHADD! She told me she was positive that's what it was and that they even consulted with some other specialist about it, then she went on about how she couldn't be making ketones if her BS was in the 70-90 range but yet she was and that a BS of 70 or higher is just fine but its not just fine for dd in my experience she needs a sugar of over 100. I am feeling really frustrated right now! Monday I'm going to go see the pedi and request she be sent for a 2nd opinion on
the SCHADD. Anyone have an opinion on UCLA's metabolic clinic? (I'm assuming they have one)

ps: in the past we have seen the sleep stupor, sudden wake up, vomit, be ok for a min or two when back asleep with sugars in the 70-90 range only to have it stop once we got her sugars above 100 so its not an isolated incident that BS in the 70-90 has made her vomit.

Seriously?
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#2 of 5 Old 11-02-2008, 09:58 AM
 
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Hey, Linden has lots of problems with low blood sugar, but it doesn't make him puke. I think thought that a lot of times moms notice a pattern loooooong before dr's are willing to accept it. We've had several things like that happen where I tell them about it and then several months down the road they're like "well, we've noticed a pattern" and I want to smack them. lol. I've never been to UCLA but if you're up for travel we absolutely love Dr. K in houtston TX. She's amazing and specializes in mito/meta.

Just keep on telling them, take tons of notes about blood sugar and vomiting and ketones, just log everything and take it to them.
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#3 of 5 Old 11-02-2008, 11:48 AM
 
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It's crap that a child cannot have ketones with a blood sugar below 70. I know a child that consistently has ketones with his BS around 50.

Nicole, mom of 3. Mitochondrial Disease.: Epilepsy
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#4 of 5 Old 11-02-2008, 11:59 AM
 
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I don't know much about the stuff going on but I heard UCLA is pretty good. That is where we were refered to to have ds1 evaluated from the psychiatrist here in town. He talked very highly of one doctor in particular. I will look for the stuff I have from him. We are waiting for an insurance change this month to go ahead with everything. I have to get the house ready for ds1' birthday party this am and will post later if I find her name.

Misty, mama to my nurslings William(11/4/02) and Parker(7/13/04).
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#5 of 5 Old 11-02-2008, 03:04 PM
 
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I was told that ketones are very good in that the body is protecting itself...it's lack of ketones during hypoglycemia that is so damaging. In Andrew's case he puts out loads of ketones even when he isn't particularly low in blood sugar. And while it shouldn't be that way in his disorder the doctors have told us it's better than the alternative. Andrew definitely has ketones in that 70 to 90 blood sugar range.

Two top specialists were still strongly suspecting VLCAD for him (though we didn't end up with that dx.) with that finding. So it doesn't make sense to me to question her diagnosis on the basis of ketones.

And my son shows symptoms at mildly low levels (not vomitting but sudden irritablity and extreme behavior). So while they don't get really concerned until a kid is below 70 here it seems, we see symptoms when he's mildly low.

I'm also confused by the metabolic doctor saying she might not have SCHADD. Did she have a skin biopsy? That would be definitive.

I think you do need a good doctor. I don't know anything about UCLA. You might ask on the FOD listserve though for who might be best around your area. http://www.fodsupport.org/ They were so helpful in answering all my questions when we were told that it was likely a fatty acid disorder with Andrew.

Rachelle, mommy to 8 year old boys! 

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