Ileum meconial and ostomies in my new baby

C

Clauddy

New member
<P>Hi,</P>
<P> </P>
<P>I live in Santiago, Chile, here CF is very uncommon. My new and first baby has been diagnosed with CF. She is almost 2 months old and she already has had 2 surgeries. One for Ileum meconial and and after two ostomies. Her stools don t get to the colon because it is still inmature so she uses an extra diaper  around her stomach (where the holes of the ostomies are) </P>
<P> She is still in the clinic because she can t gain weight , she is having enzimes (3 little balls of Panzitrat every hour) and having her milk called Neocate through a tube in her nose. </P>
<P>What do doctors do in your country? what are the treatments like?</P>
<P> </P>
<P>Sorry for my bad english, I am a spanish native speaker.</P>
<P> </P>
<P>Thanks for your help.</P>
 
C

Clauddy

New member
<P>Hi,</P>
<P></P>
<P>I live in Santiago, Chile, here CF is very uncommon. My new and first baby has been diagnosed with CF. She is almost 2 months old and she already has had 2 surgeries. One for Ileum meconial and and after two ostomies. Her stools don t get to the colon because it is still inmature so she uses an extra diaper around her stomach (where the holes of the ostomies are)</P>
<P>She is still in the clinic because she can t gain weight , she is having enzimes (3 little balls of Panzitrat every hour) and having her milk called Neocate through a tube in her nose.</P>
<P>What do doctors do in your country? what are the treatments like?</P>
<P></P>
<P>Sorry for my bad english, I am a spanish native speaker.</P>
<P></P>
<P>Thanks for your help.</P>
 
C

Clauddy

New member
<P>Hi,</P>
<P></P>
<P>I live in Santiago, Chile, here CF is very uncommon. My new and first baby has been diagnosed with CF. She is almost 2 months old and she already has had 2 surgeries. One for Ileum meconial and and after two ostomies. Her stools don t get to the colon because it is still inmature so she uses an extra diaper around her stomach (where the holes of the ostomies are)</P>
<P>She is still in the clinic because she can t gain weight , she is having enzimes (3 little balls of Panzitrat every hour) and having her milk called Neocate through a tube in her nose.<BR></P>
<P>What do doctors do in your country? what are the treatments like?</P>
<P></P>
<P>Sorry for my bad english, I am a spanish native speaker.</P>
<P></P>
<P>Thanks for your help.</P>
 
J

just1more

New member
Welcome to the site. I sounds like the treatment is very similar to here.

I'm sorry as I know it is very difficult. We have another mother of a child with CF on this site. I'm going to send her a message so hopefully she can talk to you as well.
 
J

just1more

New member
Welcome to the site. I sounds like the treatment is very similar to here.

I'm sorry as I know it is very difficult. We have another mother of a child with CF on this site. I'm going to send her a message so hopefully she can talk to you as well.
 
J

just1more

New member
Welcome to the site. I sounds like the treatment is very similar to here.
<br />
<br />I'm sorry as I know it is very difficult. We have another mother of a child with CF on this site. I'm going to send her a message so hopefully she can talk to you as well.
 
C

cassgoldman

New member
My little girl was born February 3, 2011 with meconium ileus.  She had a cyst that went from hip to hip that had to be removed.  She also had a twisted bowel and perforation that killed part of her small intestine.  They had to remove about 10-15cm of small intestine and left her with a "high" stoma and ostomy!  She was with an ostomy for 6 weeks and in that time they tried Pregestimil, Neocate, breast milk and each one she would just "dump" into her ostomy bag.  She was not gaining as well as developed MRSA, pneumonia with collapsed lobes, and signs of E coli in her cultures.  Needless to say she was not doing well.  At 6 weeks exactly, they reinostmitized her, reversed the ostomy, and hoped she would absorb nutrients better with more intestines to go through.  She had a tough start-she would start with 1cc/hour and do okay...they would bump her up to 3cc/hour and she would dump!  All this time she was on IV fluids to support her necessary nutrients and other fluids.  And also, she still has not taken enzymes at this point either because she was not taking in enough calories for the enzymes to do her good.  FINALLY, at 9 weeks we were allowed to bottle feed her 1cc and that is when we started 1/2 capsule of Creon-6 mixed with applesauce.  She took it from a spoon before her feedings.  At 12 weeks she was released from the NICU and sent home with us hoping she would gain better in the consistent care of mom and dad.  Since then, she is now 4.5 months and 9 lbs 8 oz.  She is still tiny and suffering from severe reflux.  She projectile vomits often causing her some issues with gaining and now she is pooping oily poops telling us she is malabsorbing.  On Tuesday we are going to find out when we are going to get a test for her reflux to see if they can surgically help her and relieve her of the reflux pain.  This surgery is called a Nissen Fundoplication and with that procedure they would have to insert a feeding tube as well.  With the feeding tube, I would be able to feed her through the night to hopefully give her more calories while she sleeps.  <br><br>So, to recap, Ellie, my daughter, is on 27 calorie Pregestimil formula, 0.5 capsule of Creon-6 (enzymes) 6mL of Prilosec, 0.4 mL twice a day of Zantac, CFSource multivitamins, Culturelle for Kids probiotic, and Albuterol.  We do chest PT once a day for 30 minutes using a percussor cup.<br><br>Please email me if I need to explain something in more detail for you...I understand our language gap...so, I'll do whatever I need to do to help you understand what has happened with us.<br><br>We have very similar stories!  I'm on Facebook and a part of a page called CF Mamas and we all exchange information and suggestions and experience all the time everyday.  If you can join, I think you would really find it helpful!  My facebook name is Cass Nolan Goldman if you want to look me up and I can set you up with the CF Mamas.<br><br>Good luck, and I hope this helps!<br>Cassie<br>
 
C

cassgoldman

New member
My little girl was born February 3, 2011 with meconium ileus. She had a cyst that went from hip to hip that had to be removed. She also had a twisted bowel and perforation that killed part of her small intestine. They had to remove about 10-15cm of small intestine and left her with a "high" stoma and ostomy! She was with an ostomy for 6 weeks and in that time they tried Pregestimil, Neocate, breast milk and each one she would just "dump" into her ostomy bag. She was not gaining as well as developed MRSA, pneumonia with collapsed lobes, and signs of E coli in her cultures. Needless to say she was not doing well. At 6 weeks exactly, they reinostmitized her, reversed the ostomy, and hoped she would absorb nutrients better with more intestines to go through. She had a tough start-she would start with 1cc/hour and do okay...they would bump her up to 3cc/hour and she would dump! All this time she was on IV fluids to support her necessary nutrients and other fluids. And also, she still has not taken enzymes at this point either because she was not taking in enough calories for the enzymes to do her good. FINALLY, at 9 weeks we were allowed to bottle feed her 1cc and that is when we started 1/2 capsule of Creon-6 mixed with applesauce. She took it from a spoon before her feedings. At 12 weeks she was released from the NICU and sent home with us hoping she would gain better in the consistent care of mom and dad. Since then, she is now 4.5 months and 9 lbs 8 oz. She is still tiny and suffering from severe reflux. She projectile vomits often causing her some issues with gaining and now she is pooping oily poops telling us she is malabsorbing. On Tuesday we are going to find out when we are going to get a test for her reflux to see if they can surgically help her and relieve her of the reflux pain. This surgery is called a Nissen Fundoplication and with that procedure they would have to insert a feeding tube as well. With the feeding tube, I would be able to feed her through the night to hopefully give her more calories while she sleeps. <br><br>So, to recap, Ellie, my daughter, is on 27 calorie Pregestimil formula, 0.5 capsule of Creon-6 (enzymes) 6mL of Prilosec, 0.4 mL twice a day of Zantac, CFSource multivitamins, Culturelle for Kids probiotic, and Albuterol. We do chest PT once a day for 30 minutes using a percussor cup.<br><br>Please email me if I need to explain something in more detail for you...I understand our language gap...so, I'll do whatever I need to do to help you understand what has happened with us.<br><br>We have very similar stories! I'm on Facebook and a part of a page called CF Mamas and we all exchange information and suggestions and experience all the time everyday. If you can join, I think you would really find it helpful! My facebook name is Cass Nolan Goldman if you want to look me up and I can set you up with the CF Mamas.<br><br>Good luck, and I hope this helps!<br>Cassie<br>
 
C

cassgoldman

New member
My little girl was born February 3, 2011 with meconium ileus. She had a cyst that went from hip to hip that had to be removed. She also had a twisted bowel and perforation that killed part of her small intestine. They had to remove about 10-15cm of small intestine and left her with a "high" stoma and ostomy! She was with an ostomy for 6 weeks and in that time they tried Pregestimil, Neocate, breast milk and each one she would just "dump" into her ostomy bag. She was not gaining as well as developed MRSA, pneumonia with collapsed lobes, and signs of E coli in her cultures. Needless to say she was not doing well. At 6 weeks exactly, they reinostmitized her, reversed the ostomy, and hoped she would absorb nutrients better with more intestines to go through. She had a tough start-she would start with 1cc/hour and do okay...they would bump her up to 3cc/hour and she would dump! All this time she was on IV fluids to support her necessary nutrients and other fluids. And also, she still has not taken enzymes at this point either because she was not taking in enough calories for the enzymes to do her good. FINALLY, at 9 weeks we were allowed to bottle feed her 1cc and that is when we started 1/2 capsule of Creon-6 mixed with applesauce. She took it from a spoon before her feedings. At 12 weeks she was released from the NICU and sent home with us hoping she would gain better in the consistent care of mom and dad. Since then, she is now 4.5 months and 9 lbs 8 oz. She is still tiny and suffering from severe reflux. She projectile vomits often causing her some issues with gaining and now she is pooping oily poops telling us she is malabsorbing. On Tuesday we are going to find out when we are going to get a test for her reflux to see if they can surgically help her and relieve her of the reflux pain. This surgery is called a Nissen Fundoplication and with that procedure they would have to insert a feeding tube as well. With the feeding tube, I would be able to feed her through the night to hopefully give her more calories while she sleeps. <br><br>So, to recap, Ellie, my daughter, is on 27 calorie Pregestimil formula, 0.5 capsule of Creon-6 (enzymes) 6mL of Prilosec, 0.4 mL twice a day of Zantac, CFSource multivitamins, Culturelle for Kids probiotic, and Albuterol. We do chest PT once a day for 30 minutes using a percussor cup.<br><br>Please email me if I need to explain something in more detail for you...I understand our language gap...so, I'll do whatever I need to do to help you understand what has happened with us.<br><br>We have very similar stories! I'm on Facebook and a part of a page called CF Mamas and we all exchange information and suggestions and experience all the time everyday. If you can join, I think you would really find it helpful! My facebook name is Cass Nolan Goldman if you want to look me up and I can set you up with the CF Mamas.<br><br>Good luck, and I hope this helps!<br>Cassie<br>
 
P

pattricia

New member
Hola!!! Mi nombre es Patricia y tengo una hija de 5 años con CF.. y estoy en la espera del resultado de mi otra niña que nacio hace apenas pocos dias... Vivo en USA y te cuento que aqui el tratamiento es muy bueno Sofia, asi se llama mi hija mayor nacio y tuvo ileo meconial al 2 dia por lo que  estuvo internada por aproximadamente 8 dias en lo que la diagnosticaron por lo demas ella ha estado muy bien nunca ha sido hospitalizada desde que nacio y no ha tenido ninguna complicacion grave a causa de la CF, ella toma enzimas con cada ingesta de comida 2 inaladores y terapia fisica 2 veces al dia todos los dias... es duro al principio y me imagino es muy duro para ti entender todo esto y sobre todo en los paises de nosotros donde la enfermedad no es muy conocida sin embargo no te desesperes y ten mucha fe y sobre todo mucha fuerza porque tu hija te necesita a su lado cuidate y cualquier cosa o pregunta aqui esta mi correo patricia.arce@ymail.com
 
P

pattricia

New member
Hola!!! Mi nombre es Patricia y tengo una hija de 5 años con CF.. y estoy en la espera del resultado de mi otra niña que nacio hace apenas pocos dias... Vivo en USA y te cuento que aqui el tratamiento es muy bueno Sofia, asi se llama mi hija mayor nacio y tuvo ileo meconial al 2 dia por lo que estuvo internada por aproximadamente 8 dias en lo que la diagnosticaron por lo demas ella ha estado muy bien nunca ha sido hospitalizada desde que nacio y no ha tenido ninguna complicacion grave a causa de la CF, ella toma enzimas con cada ingesta de comida 2 inaladores y terapia fisica 2 veces al dia todos los dias... es duro al principio y me imagino es muy duro para ti entender todo esto y sobre todo en los paises de nosotros donde la enfermedad no es muy conocida sin embargo no te desesperes y ten mucha fe y sobre todo mucha fuerza porque tu hija te necesita a su lado cuidate y cualquier cosa o pregunta aqui esta mi correo patricia.arce@ymail.com
 
P

pattricia

New member
Hola!!! Mi nombre es Patricia y tengo una hija de 5 años con CF.. y estoy en la espera del resultado de mi otra niña que nacio hace apenas pocos dias... Vivo en USA y te cuento que aqui el tratamiento es muy bueno Sofia, asi se llama mi hija mayor nacio y tuvo ileo meconial al 2 dia por lo que estuvo internada por aproximadamente 8 dias en lo que la diagnosticaron por lo demas ella ha estado muy bien nunca ha sido hospitalizada desde que nacio y no ha tenido ninguna complicacion grave a causa de la CF, ella toma enzimas con cada ingesta de comida 2 inaladores y terapia fisica 2 veces al dia todos los dias... es duro al principio y me imagino es muy duro para ti entender todo esto y sobre todo en los paises de nosotros donde la enfermedad no es muy conocida sin embargo no te desesperes y ten mucha fe y sobre todo mucha fuerza porque tu hija te necesita a su lado cuidate y cualquier cosa o pregunta aqui esta mi correo patricia.arce@ymail.com
 
C

Chilemom

New member
<P>hola, yo tambien estoy en santiago de chile.</P>
<P>Mi hija tiene 4 años (casi 5) va al colegio y esta muy bien.</P>
<P>Siempre me emto a leer la pagina, pero hace tiempo que no me conectaba y no habia visto que me habian escrito un email avisandome de ti.</P>
<P>ojala me escribas para que nos pongamos en contacto.</P>
<P> </P>
<P>Francisca</P>
 
C

Chilemom

New member
<P>hola, yo tambien estoy en santiago de chile.</P>
<P>Mi hija tiene 4 años (casi 5) va al colegio y esta muy bien.</P>
<P>Siempre me emto a leer la pagina, pero hace tiempo que no me conectaba y no habia visto que me habian escrito un email avisandome de ti.</P>
<P>ojala me escribas para que nos pongamos en contacto.</P>
<P></P>
<P>Francisca</P>
 
C

Chilemom

New member
<P><BR>hola, yo tambien estoy en santiago de chile.</P>
<P>Mi hija tiene 4 años (casi 5) va al colegio y esta muy bien.</P>
<P>Siempre me emto a leer la pagina, pero hace tiempo que no me conectaba y no habia visto que me habian escrito un email avisandome de ti.</P>
<P>ojala me escribas para que nos pongamos en contacto.</P>
<P></P>
<P>Francisca</P>
 
You must log in or register to reply here.
Top