Starting cereal and switching CF doctors

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ashton2005

New member
Hey everyone!! Ashton is doing good he has a little runny nose cough and cold right now but other than that we are doing great he is 3 1/2 months old now.. has been home a total of 2 weeks because after we came home from the NICU 1-9-06 he went back in on the 16th of january with dehydration from loose stools.. it turned out he had Salmonela we think he got it from our water therefore he is now on bottled water.. Well with the cereal we got to start a tablespoon last night and this AM he loves it.. He has not yet been put on enzymes his GI Dr. says that as long as his stool cultures look ok for fat and he is gaining weight he dosent need them. Well his stool now looks almost just like the cereal hes gotten to eat they have been almost like watery cottage cheese until now(sorry kinda grose)????? Has anyone experienced this?
Also im sorry but i know that there is someone in Indiana that is on here but i keep forgetting to write down who it is? I was wondering which CF clinic you go to we are waiting on our referral to Riley to get another opinion on the enzymes and slight bowel issues.. Just wondering if that is where you go or not?? we hve been going to Doctors at St. Vincent but i just feel like they may not be doing everything that a CF clinic would..

thanks everyone
Christi
Mom to ashton 3 1/2 months w/ cf
Mom to abbi 5 yo w/o cf
 
A

ashton2005

New member
Hey everyone!! Ashton is doing good he has a little runny nose cough and cold right now but other than that we are doing great he is 3 1/2 months old now.. has been home a total of 2 weeks because after we came home from the NICU 1-9-06 he went back in on the 16th of january with dehydration from loose stools.. it turned out he had Salmonela we think he got it from our water therefore he is now on bottled water.. Well with the cereal we got to start a tablespoon last night and this AM he loves it.. He has not yet been put on enzymes his GI Dr. says that as long as his stool cultures look ok for fat and he is gaining weight he dosent need them. Well his stool now looks almost just like the cereal hes gotten to eat they have been almost like watery cottage cheese until now(sorry kinda grose)????? Has anyone experienced this?
Also im sorry but i know that there is someone in Indiana that is on here but i keep forgetting to write down who it is? I was wondering which CF clinic you go to we are waiting on our referral to Riley to get another opinion on the enzymes and slight bowel issues.. Just wondering if that is where you go or not?? we hve been going to Doctors at St. Vincent but i just feel like they may not be doing everything that a CF clinic would..

thanks everyone
Christi
Mom to ashton 3 1/2 months w/ cf
Mom to abbi 5 yo w/o cf
 
A

anonymous

New member
DS was born with a bowel obstruction due to meconium illeus and after about a week to 10 days he was started on small amounts of formula with enzymes. When he was about 4 weeks old the dietician did the stool test, but his CF doctor basically said it's obvious he has pancreatic insufficiency -- based on the blockage at birth, loose stools, etc. and that most CFers need enzymes, so the stool test was pretty much worthless.

IMO, I'd get a second opinion.
 
A

anonymous

New member
DS was born with a bowel obstruction due to meconium illeus and after about a week to 10 days he was started on small amounts of formula with enzymes. When he was about 4 weeks old the dietician did the stool test, but his CF doctor basically said it's obvious he has pancreatic insufficiency -- based on the blockage at birth, loose stools, etc. and that most CFers need enzymes, so the stool test was pretty much worthless.

IMO, I'd get a second opinion.
 
A

anonymous

New member
Hi Christi, that was me who said that my daughter goes to Riley. I was the one who assumed that would be where Ashton would be going since I didn't know there was a private CF pulm. in Indy. Anyway, I hope you get his poops figured out soon - sounds like he could use enzymes. He has 2 DF508's right? There is also another mom, from the Indy area (I am closer to FW than Indy) who gets on this board from time to time - her sons website is www.fightforethan.com and you can find her contact info on there.

Hope you get an appt at Riley soon - they are FANTASTIC there!

Kelli - mom of Sydney 2.5 wcf and baby boy nocf due 5/6/06

<a target=new class=ftalternatingbarlinklarge href="http://members.tripod.com/sydneymyers-ivil/">http://members.tripod.com/sydneymyers-ivil/</a>
 
A

anonymous

New member
Hi Christi, that was me who said that my daughter goes to Riley. I was the one who assumed that would be where Ashton would be going since I didn't know there was a private CF pulm. in Indy. Anyway, I hope you get his poops figured out soon - sounds like he could use enzymes. He has 2 DF508's right? There is also another mom, from the Indy area (I am closer to FW than Indy) who gets on this board from time to time - her sons website is www.fightforethan.com and you can find her contact info on there.

Hope you get an appt at Riley soon - they are FANTASTIC there!

Kelli - mom of Sydney 2.5 wcf and baby boy nocf due 5/6/06

<a target=new class=ftalternatingbarlinklarge href="http://members.tripod.com/sydneymyers-ivil/">http://members.tripod.com/sydneymyers-ivil/</a>
 
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ashton2005

New member
Yes he does have 2 df508 genes. we just got our appointment and it is on 2-13-05 i cant wait.. I really hope that we like it there and its not to hectic for us.. thank you and hopefully we will keep in touch

christi
 
A

ashton2005

New member
Yes he does have 2 df508 genes. we just got our appointment and it is on 2-13-05 i cant wait.. I really hope that we like it there and its not to hectic for us.. thank you and hopefully we will keep in touch

christi
 
A

anonymous

New member
That is great! The place is big, but once you get in, it doesn't seem hectic - just VERY organized. In fact, I get very disappointed & frustrated with other hospitals now after dealing with Riley bc Riley makes things SO easy!

Hope his appt. goes well!
Kelli
 
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anonymous

New member
That is great! The place is big, but once you get in, it doesn't seem hectic - just VERY organized. In fact, I get very disappointed & frustrated with other hospitals now after dealing with Riley bc Riley makes things SO easy!

Hope his appt. goes well!
Kelli
 
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anonymous

New member
Kelli, How do you get to Riley from where you live??? We are going to take 65 south to downtown.. Is it right behind methodist??? Thanks for the advice and help i cant wait to go there.. Is there anything that we should expect at our first appoinment??

Christi
 
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anonymous

New member
Kelli, How do you get to Riley from where you live??? We are going to take 65 south to downtown.. Is it right behind methodist??? Thanks for the advice and help i cant wait to go there.. Is there anything that we should expect at our first appoinment??

Christi
 
A

anonymous

New member
DS was diagnosed at birth due to a bowel obstruction, also has homozygous delta f508 -- basically was told that he got the bowel obstruction because he was pancreatic insufficient and required enzymes -- he's been on enzymes since he was about 2 weeks old, without them his poo smells like feta cheese and it really really greasy.
 
A

anonymous

New member
DS was diagnosed at birth due to a bowel obstruction, also has homozygous delta f508 -- basically was told that he got the bowel obstruction because he was pancreatic insufficient and required enzymes -- he's been on enzymes since he was about 2 weeks old, without them his poo smells like feta cheese and it really really greasy.
 
A

anonymous

New member
Christi, we come from 69 - 465 around the NE corner then over 70 off at Michigan Street then North right through campus. It is right there with Wishard(?) Veterans and lots of other stuff! You will enter at the ROC Building - Riley Outpatient Center. They do have a map on their website, I would just give yourself plenty of time for the first appt bc it can take a while to park (you park in the garage connected to ROC). At your first appt you will most likely be put in your room right away and you will stay there to meet the doctor who you will most likely see everytime and you may also meet with an RT, Dietician, and social worker. I haven't ever met with a GI doc, but you may since Ashton has had surgery. Everyone will come to you in your room, which is nice. They will go over all of his history and will discuss a plan of action for his treatments. I would guess that they will want him on enzymes ASAP.

Sydney sees Dr. Howenstine who we really like. I email the nurses anytime I have a basic question that doesn't need an immediate answer and I usually get an email back the same day. Otherwise I wil put a call in. One of the nurses even gave me her pager number for an emergency question, which is nice although I haven't used it. They are very open to frequent questions so I never hesitate.

Hope this helps!!
Kelli
 
A

anonymous

New member
Christi, we come from 69 - 465 around the NE corner then over 70 off at Michigan Street then North right through campus. It is right there with Wishard(?) Veterans and lots of other stuff! You will enter at the ROC Building - Riley Outpatient Center. They do have a map on their website, I would just give yourself plenty of time for the first appt bc it can take a while to park (you park in the garage connected to ROC). At your first appt you will most likely be put in your room right away and you will stay there to meet the doctor who you will most likely see everytime and you may also meet with an RT, Dietician, and social worker. I haven't ever met with a GI doc, but you may since Ashton has had surgery. Everyone will come to you in your room, which is nice. They will go over all of his history and will discuss a plan of action for his treatments. I would guess that they will want him on enzymes ASAP.

Sydney sees Dr. Howenstine who we really like. I email the nurses anytime I have a basic question that doesn't need an immediate answer and I usually get an email back the same day. Otherwise I wil put a call in. One of the nurses even gave me her pager number for an emergency question, which is nice although I haven't used it. They are very open to frequent questions so I never hesitate.

Hope this helps!!
Kelli
 
A

ashton2005

New member
Thank you for all your help. I have one more question kelli is sydney on Ursodiol?? If she is then where do you get it.. I had to get it at a special pharmacy in Nora Indiana.. CVS and walgreens dont make it?? I was wondering if the clinic has a pharmacy tht makes it or what... Im glad that they are open to questions since this is all still a little new to me.... nd i like the fact the they put you straight into a room so there isnt tht much of and exposure to germs issue.. Thank you again for all your advice about riley i cant wait to go meet them..

Christi
Ashton 3 1/2 months w/ cf
Abbi 5yo w/o cf
 
A

ashton2005

New member
Thank you for all your help. I have one more question kelli is sydney on Ursodiol?? If she is then where do you get it.. I had to get it at a special pharmacy in Nora Indiana.. CVS and walgreens dont make it?? I was wondering if the clinic has a pharmacy tht makes it or what... Im glad that they are open to questions since this is all still a little new to me.... nd i like the fact the they put you straight into a room so there isnt tht much of and exposure to germs issue.. Thank you again for all your advice about riley i cant wait to go meet them..

Christi
Ashton 3 1/2 months w/ cf
Abbi 5yo w/o cf
 
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