Guest guest Posted October 8, 2004 Report Share Posted October 8, 2004 Thanks so much for the info. I know my son also has low tone in his mouth as he constantly drooling - although it's gotten better now that he follows our cue of 'wiping'. Did you get a prescription from your reg pediatrician for the Carnitor rather than ordering Carnitine from Kirkmans? +AFs-enzymes+AF0- Low-tone Maribeth, My son was 3 1/2 when he was finally tested and found severely deficient in Carnitine. At that time he could not even speak because he didn't have control of the muscles in his mouth and he did fall over a lot and would even fall over when other kids ran next to him. We have seen incredibly success with his prescription carnitine called Carnitor. This has kept him from getting sick all the time and his speech is always improving. He can run and jump now and it's caused the biggest change in him along with the GFCF diet+ACE- Kathy +AFs-Non-text portions of this message have been removed+AF0- +ACE- Groups Sponsor ADVERTISEMENT -------------------------------------------------------------------------------- +ACE- Groups Links a.. To visit your group on the web, go to: / b.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2004 Report Share Posted October 8, 2004 " My son was 3 1/2 when he was finally tested and found severely > deficient in Carnitine. " Hi Kathy, Who made the test that diagnose your son as deficient in Carnitine? I'm asking because my son (4 years old) has low tone too but our pediatrician don't have a clue what I'm talking about. He does OT 3 hours a week but I am looking for something that could give a extra help. Thank you, Giseli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2004 Report Share Posted October 8, 2004 Your doctor needs to order free & total carnitine levels (it is a blood test). However, with the whole concept of " biochemical individuality " , I wonder now how valid this test might be in a child with low muscle tone and normal values. I wonder if it would make sense to try carnitine anyway, despite normal values. Has anyone here supplemented with carnitine, but had normal blood values of carnitine? nat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2004 Report Share Posted October 9, 2004 When my son was first diagnosed more than a year ago, his pediatrician ran his carnitine level through Quest Diagnostics. To this day, I am unclear about what exactly occured next with the results. The first results showed low carnitine. The doc called the lab, who said, you couldn't really trust just those results, you had to run " the whole carnitine panel " (or something like that). They had enough blood left over to do so, and those results then showed " normal " carnitine. His ped decided we should try the carnitine anyway. We used the prescription form Carnitor. It made my son so happy and content, and allowed him to transition just beautifully. However, it also increased his stimming. As time went on, the stimming got worse and worse, and it seemed he was " falling into himself, " enjoying his good nature all alone. So we stopped it. We tried it once again later, and had the same effects. HTH, > Has anyone here supplemented with carnitine, but had normal blood > values of carnitine? > > nat Quote Link to comment Share on other sites More sharing options...
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