Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Hello Vicky my name is shannon l lost my little girl to lieghs dis... last year.. she also had those jerks and they came often several times a day.. they put her on clonipine also but do you know what Mito dis. your baby has that will help alot to know what the baby has and tell use some of the symtoms the baby is having .. like those jerks they call them spikes becareful cause they can come into sezures started out haveing those jerks and went straight into sez.. they also have what they call coctails vitamns B1 B6 there is alot of them she was also on q10 which is a vitamn to she was on conatior to which makes the urine smell real fishy like but any time you have a question just ask some one will be able to answer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Hello Vicky my name is shannon l lost my little girl to lieghs dis... last year.. she also had those jerks and they came often several times a day.. they put her on clonipine also but do you know what Mito dis. your baby has that will help alot to know what the baby has and tell use some of the symtoms the baby is having .. like those jerks they call them spikes becareful cause they can come into sezures started out haveing those jerks and went straight into sez.. they also have what they call coctails vitamns B1 B6 there is alot of them she was also on q10 which is a vitamn to she was on conatior to which makes the urine smell real fishy like but any time you have a question just ask some one will be able to answer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Hello Vicky my name is shannon l lost my little girl to lieghs dis... last year.. she also had those jerks and they came often several times a day.. they put her on clonipine also but do you know what Mito dis. your baby has that will help alot to know what the baby has and tell use some of the symtoms the baby is having .. like those jerks they call them spikes becareful cause they can come into sezures started out haveing those jerks and went straight into sez.. they also have what they call coctails vitamns B1 B6 there is alot of them she was also on q10 which is a vitamn to she was on conatior to which makes the urine smell real fishy like but any time you have a question just ask some one will be able to answer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Su hijo esta muy GUAPO! Bienvenido a esta groupo. Es siempre bueno hacer padres quien queren aprender acerca de mitochondrial disease. Espero que su hijo no esta enfermo. Perdoname para mi espanol. No hablo espanol para viente anos. (estudio espanol in la Republica Dominicana) Mi hijo esta tres anos con mitochondrial disease. Otra vez, Bienvenidos, Sue Ann Bube Felipe´s Photos 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 Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Su hijo esta muy GUAPO! Bienvenido a esta groupo. Es siempre bueno hacer padres quien queren aprender acerca de mitochondrial disease. Espero que su hijo no esta enfermo. Perdoname para mi espanol. No hablo espanol para viente anos. (estudio espanol in la Republica Dominicana) Mi hijo esta tres anos con mitochondrial disease. Otra vez, Bienvenidos, Sue Ann Bube Felipe´s Photos 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 Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Su hijo esta muy GUAPO! Bienvenido a esta groupo. Es siempre bueno hacer padres quien queren aprender acerca de mitochondrial disease. Espero que su hijo no esta enfermo. Perdoname para mi espanol. No hablo espanol para viente anos. (estudio espanol in la Republica Dominicana) Mi hijo esta tres anos con mitochondrial disease. Otra vez, Bienvenidos, Sue Ann Bube Felipe´s Photos 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 Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Oh wow!! Is he ever cute!!! He brought a huge smile to my face. Please ask questions. I'm sure there are many of us on this site would say come stay with us when you come to the States. Just to get your son diagnosed and on the right track. That is important. Some things you can maintain by yourself once you understand what is going on. It is a shame that you are cut off and have to pay for things on your own. Here in the states you fill out LOTS of paperwork; but you can get help with many things to get you through medical issues and just surviving with a special needs child. Good luck and keep us informed on what is going on with you and your family. Nerenhausen mom to Leah Vicky Castro wrote: 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 Please contact mito-owner with any problems or questions. This message scanned for viruses by Corecomm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Oh wow!! Is he ever cute!!! He brought a huge smile to my face. Please ask questions. I'm sure there are many of us on this site would say come stay with us when you come to the States. Just to get your son diagnosed and on the right track. That is important. Some things you can maintain by yourself once you understand what is going on. It is a shame that you are cut off and have to pay for things on your own. Here in the states you fill out LOTS of paperwork; but you can get help with many things to get you through medical issues and just surviving with a special needs child. Good luck and keep us informed on what is going on with you and your family. Nerenhausen mom to Leah Vicky Castro wrote: 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 Please contact mito-owner with any problems or questions. This message scanned for viruses by Corecomm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 What a BEAUTIFUL baby! I shared Felipe's pictures with everyone in the office, and we all agree that he is an exceptionally handsome boy! You have come to the right place for help in learning about Mitochondrial Diseases. The people in this group are a wealth of information and experiences, and are always willing to share both! Just post your questions and I know there will be someone who can help! My thoughts are with you and Felipe as you seek the care that he needs. Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 What a BEAUTIFUL baby! I shared Felipe's pictures with everyone in the office, and we all agree that he is an exceptionally handsome boy! You have come to the right place for help in learning about Mitochondrial Diseases. The people in this group are a wealth of information and experiences, and are always willing to share both! Just post your questions and I know there will be someone who can help! My thoughts are with you and Felipe as you seek the care that he needs. Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Dear Vicky, What a beautiful baby you have. Welcome to our group. We will try to help as much as we can. Do you know the mutation and form of mito he has? MAY God bless you, and do not hesitate to ask any questions at all. Everyone in this group is so helpful for everything. Love, Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna with same disease. Samya's Memorial Site: www.Samya.org Email: Suhad1970@... Alt Email: Suhad@... AiM Chat: Suhad1970 From: Vicky Castro Sent: Monday, March 08, 2004 11:25 AM To: Mito Subject: Felipe´s Photos 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 Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2004 Report Share Posted March 9, 2004 Hi: Felipe´s photos in photos.yahoo.com: http://f2.pg.photos.yahoo.com/ph/jaimevale/my_photos Valencia, Felipe´s dad > 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. (...) > > Best regards > > Vicky Castro, Felipe´s mothers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2004 Report Share Posted March 10, 2004 Thank you for sharing! Felipe is absolutely beautiful! Best Wishes, Colleen - Mom to Calley 6 (Mito - Complex IV, gtube, trach - decannulated 4/17/00) Dylan 11 & 15 Read Calley's story @ http://www.shaklee.net/concepts4health/aboutme Quote Link to comment Share on other sites More sharing options...
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