my dd is 2 years old and was diagnosed with 3mcc through expanded newborn screening. she is taking biotin and l-carnitine. prior to taking the carnitine, bella had very hard bowel movements that were waxing in nature and smelled horrid (small and hard almost like raisinettes candy).
since starting the carnitine her bowel movements have been more "normal" in texture, quantity and smell. however recently i have noticed diarrhea anytime she east anything with a high sugar count. i would normally say if something makes your stomach upset don't eat that thing, however it is a small sized piece of birthday cake or a snowcone on a hot day, even a piece of fruit.
i should mention i don't think carnitine is the issue i think the issue was "masked" by her body not breaking downs foods/protien efficiently prior to the medication and now that her body is breaking down foods properly we can now see this issue. i hope this makes sense.
she has no other symptoms -- is eating well (for a 2 year old), and has no complaints of aches and plays normal even with the diarrhea.
i put a call into her pedi and will call her geneticist later. has any other 3mcc children had problems digesting foods high in sugar? been asked to avoid sugar foods? would love some insight if you have any
thanks in advance for your thoughts and response
beth
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3mcc -- frequent diahrrea?
- By bellas_mom
- Posted July 28, 2008 at 1:59 pm · 3 replies
- In Getting a diagnosis
- Shared with the public
- Edited July 28, 2008 at 4:38 pm
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- By psjaquith
- Posted September 8, 2008 at 3:14 am
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Hi Bella's mom. I'm a member of an Organic Acidemia group which is a support group for families who are dealing with a variety of metabolic disorders. You will find a wealth of information there as well as answers to your questions posed here. A lot of us have been through it. I think there are other children diagnosed with the same disorder as yours.
Carnitine can indeed cause loose stools if the dose is too much. The doctor needs to be notified that stools have changed since starting.
Carnitine is needed to carry out wastes/toxins from the blood which doesn't not process out otherwise, so despite the fishy odor it's best to stay on it until your genetics fellow thinks it would be safe to take her off.
On the OAA site, you will be able to talk to others about issues such as stooling, rashes, food restrictions, seizures, and a full spectrum of what can be seen. There are also a few adults on the site which is helpful as they can express what they are feeling when they are sick.
www.oaanews.org You can check out the site on line and see what you think. There is one other mom who joined the group that I met here. I believe you will find it useful to the challenges you face with a metabolic child.
Blessings,
Penny Jaquith
Sherry - D-2-Hydroxyglutaric Aciduria
Grace* D-2-HGA (dob/dod 12-28-93)
Nathan - Hydromethylmalonic Acidosis
- By 3MCCmommy
- Posted September 18, 2008 at 9:37 am
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Hi Bella's Mom...
I am Taylors mom who also has 3MCC. She was diagnosed on NB screen as well...is on Carnitor.
We did notice her having looser stools when Carnitor dose was really high-they have since adjusted and the loose stools and fishy order has almost disappeared.
When she was a NB (she is 4 now) she would get really fussy after her dose-chalked it up to stomach upset b.c of med.
She is ok with sugary foods but we notice sometimes if she eats something high in calcium (a slice of cheese, ice cream) she will almost immediatly go to the bathroom after (#2). Hope this helps...I would love to discuss your 3MCC experience with you. Email me
- By mikki080
- Posted January 27, 2009 at 10:07 am
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I'm Gavin's Mom --- Gavin is a one year old who was diagnosed with 3MCC at the newborn screening. I'm just wondering if anyone knows why this disorder wasn't tested for 10 years ago .... and why.... if it's such a major problem, they weren't aware of it years ago. Along with my son when he was born, I have also been diagnosed with the disorder. They ran tests on myself once they realized why his levels were so "off". I have never had a single problem, have never limited my supply of food (I'm 23 years old), rarely get sick... i'm just beginning to wonder if this isn't the healthcare industry's way of making money. my son's genetic test cost $7,000 alone.
If anyone feels the same, email me back....mikki080@yahoo.com
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