Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Hello everyone: My name is Vicky Castro. I have a five months old who has been diagnosed with MITO. We live in Colombia, South America. We joint the UMDF recently. I want to introduce my family since I want all of you to be closer to us because we feel so alone. With my son desease I have tree handicaps: 1) I don´t speak English so I have to translate every thought I have or every question I want to make hoping it does not get to rough. 2) There are not doctors on methabolic deseases here in Colombia so for my son health I have to resot to the members of this wonderful group that can help me with their experiences. 3) Since it was a congenital desease we were cut out of medical insurance so now we have to pay for every thing for the baby privately. So as you can see I NEED YOU so much specially in terms of getting some light regarding the different and weird symthoms of this desease. For instance when baby doctor give us some medication we do not know if the medication is MITO safe. So I will post to see if any of you has some experience with that specific drug. Last time we went to the neurologist he gave us Clonacepam (Rivotril) for his myoclonic jerks. Has somebody have some experience with it? Currently we are not giving the baby any treatment besides Dolex for pain but we have started to save money and exchange it to dollars to see if we can bring the baby to the States for him to be seen by a specialist. Thank you very much for been ther and thank you very much to the UMDF for been. Best regards Vicky Castro, Felipe´s mothers Quote Link to comment Share on other sites More sharing options...
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