My daughter had MI at birth so we knew right away. We came home from the hospital when she was 2 weeks old. From then on we were doing pulmozyne, albuterol, and intal all in the neb along with cpt. I think the only other meds she was on at that point was enzymes and adek vitamins. That is what worked for us and we added other meds as she needed them, like for reflux. Hope this helped. Good Luck
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aggressive preventative treatment in a one month old
- Thread starter nicole781
- Start date
My daughter had MI at birth so we knew right away. We came home from the hospital when she was 2 weeks old. From then on we were doing pulmozyne, albuterol, and intal all in the neb along with cpt. I think the only other meds she was on at that point was enzymes and adek vitamins. That is what worked for us and we added other meds as she needed them, like for reflux. Hope this helped. Good Luck
My daughter had MI at birth so we knew right away. We came home from the hospital when she was 2 weeks old. From then on we were doing pulmozyne, albuterol, and intal all in the neb along with cpt. I think the only other meds she was on at that point was enzymes and adek vitamins. That is what worked for us and we added other meds as she needed them, like for reflux. Hope this helped. Good Luck
My daughter had MI at birth so we knew right away. We came home from the hospital when she was 2 weeks old. From then on we were doing pulmozyne, albuterol, and intal all in the neb along with cpt. I think the only other meds she was on at that point was enzymes and adek vitamins. That is what worked for us and we added other meds as she needed them, like for reflux. Hope this helped. Good Luck
DS was diagnosed because he was born with a bowel obstruction (meconium illeus). So we were learning CPT when he was about a week old. While we kinda grumbled about having to learn so much -- we were doing CPT with nebs 4 times a day, we did notice that it actually relaxed him and he'd fall asleep during treatments. Friend of mine's granddaughter wasn't diagnosed until she was almost two and the poor kids screamed and struggled the entire time.
Our local CF clinic doesn't believe in doing nebs or CPT unless there are symptoms; however our primary doctor had us doing cpt, nebs (albuterol & atrovent) 3-4 times a day. He was also put on actigall (bile salts) -- his liver levels were high, most likely from being on TPN (iv feeding) for several weeks, enzymes, adeks vitamin drops, keflex as a prophalactive antibiotic.
We were under pressure several times by the local clinic and the dietician at the hospital to put DS on pregistimil (formula); however, we tried it for a week and he hated it -- screamed and threw a fit. His primary CF doctor indicated we should feed him what he'll eat and we switched him to regular formula, which he would eat. So if you're breastfeeding, don't let them convince you to switch to formula.
Another thing our doctor stressed when DS was about 6 months old was not to give him babyfood because it's so low in sodium and fats -- told us to feed him whatever we're eating -- feed him regular foods ground up.
Another thing, not related to aggressive preventative treatment was the community waiting room at our local CF clinic. They just do not practice good infection control. When DS was a newborn, it was easier, we just kept him in his carseat carrier, away from other cf patients. But as he got older, we opted out of the program because of the overcrowded waiting room, toys, and not being assigned our own exam room -- the patients rotated from room to room instead of doctors coming in to see individual patients.
Our local CF clinic doesn't believe in doing nebs or CPT unless there are symptoms; however our primary doctor had us doing cpt, nebs (albuterol & atrovent) 3-4 times a day. He was also put on actigall (bile salts) -- his liver levels were high, most likely from being on TPN (iv feeding) for several weeks, enzymes, adeks vitamin drops, keflex as a prophalactive antibiotic.
We were under pressure several times by the local clinic and the dietician at the hospital to put DS on pregistimil (formula); however, we tried it for a week and he hated it -- screamed and threw a fit. His primary CF doctor indicated we should feed him what he'll eat and we switched him to regular formula, which he would eat. So if you're breastfeeding, don't let them convince you to switch to formula.
Another thing our doctor stressed when DS was about 6 months old was not to give him babyfood because it's so low in sodium and fats -- told us to feed him whatever we're eating -- feed him regular foods ground up.
Another thing, not related to aggressive preventative treatment was the community waiting room at our local CF clinic. They just do not practice good infection control. When DS was a newborn, it was easier, we just kept him in his carseat carrier, away from other cf patients. But as he got older, we opted out of the program because of the overcrowded waiting room, toys, and not being assigned our own exam room -- the patients rotated from room to room instead of doctors coming in to see individual patients.
DS was diagnosed because he was born with a bowel obstruction (meconium illeus). So we were learning CPT when he was about a week old. While we kinda grumbled about having to learn so much -- we were doing CPT with nebs 4 times a day, we did notice that it actually relaxed him and he'd fall asleep during treatments. Friend of mine's granddaughter wasn't diagnosed until she was almost two and the poor kids screamed and struggled the entire time.
Our local CF clinic doesn't believe in doing nebs or CPT unless there are symptoms; however our primary doctor had us doing cpt, nebs (albuterol & atrovent) 3-4 times a day. He was also put on actigall (bile salts) -- his liver levels were high, most likely from being on TPN (iv feeding) for several weeks, enzymes, adeks vitamin drops, keflex as a prophalactive antibiotic.
We were under pressure several times by the local clinic and the dietician at the hospital to put DS on pregistimil (formula); however, we tried it for a week and he hated it -- screamed and threw a fit. His primary CF doctor indicated we should feed him what he'll eat and we switched him to regular formula, which he would eat. So if you're breastfeeding, don't let them convince you to switch to formula.
Another thing our doctor stressed when DS was about 6 months old was not to give him babyfood because it's so low in sodium and fats -- told us to feed him whatever we're eating -- feed him regular foods ground up.
Another thing, not related to aggressive preventative treatment was the community waiting room at our local CF clinic. They just do not practice good infection control. When DS was a newborn, it was easier, we just kept him in his carseat carrier, away from other cf patients. But as he got older, we opted out of the program because of the overcrowded waiting room, toys, and not being assigned our own exam room -- the patients rotated from room to room instead of doctors coming in to see individual patients.
Our local CF clinic doesn't believe in doing nebs or CPT unless there are symptoms; however our primary doctor had us doing cpt, nebs (albuterol & atrovent) 3-4 times a day. He was also put on actigall (bile salts) -- his liver levels were high, most likely from being on TPN (iv feeding) for several weeks, enzymes, adeks vitamin drops, keflex as a prophalactive antibiotic.
We were under pressure several times by the local clinic and the dietician at the hospital to put DS on pregistimil (formula); however, we tried it for a week and he hated it -- screamed and threw a fit. His primary CF doctor indicated we should feed him what he'll eat and we switched him to regular formula, which he would eat. So if you're breastfeeding, don't let them convince you to switch to formula.
Another thing our doctor stressed when DS was about 6 months old was not to give him babyfood because it's so low in sodium and fats -- told us to feed him whatever we're eating -- feed him regular foods ground up.
Another thing, not related to aggressive preventative treatment was the community waiting room at our local CF clinic. They just do not practice good infection control. When DS was a newborn, it was easier, we just kept him in his carseat carrier, away from other cf patients. But as he got older, we opted out of the program because of the overcrowded waiting room, toys, and not being assigned our own exam room -- the patients rotated from room to room instead of doctors coming in to see individual patients.
DS was diagnosed because he was born with a bowel obstruction (meconium illeus). So we were learning CPT when he was about a week old. While we kinda grumbled about having to learn so much -- we were doing CPT with nebs 4 times a day, we did notice that it actually relaxed him and he'd fall asleep during treatments. Friend of mine's granddaughter wasn't diagnosed until she was almost two and the poor kids screamed and struggled the entire time.
Our local CF clinic doesn't believe in doing nebs or CPT unless there are symptoms; however our primary doctor had us doing cpt, nebs (albuterol & atrovent) 3-4 times a day. He was also put on actigall (bile salts) -- his liver levels were high, most likely from being on TPN (iv feeding) for several weeks, enzymes, adeks vitamin drops, keflex as a prophalactive antibiotic.
We were under pressure several times by the local clinic and the dietician at the hospital to put DS on pregistimil (formula); however, we tried it for a week and he hated it -- screamed and threw a fit. His primary CF doctor indicated we should feed him what he'll eat and we switched him to regular formula, which he would eat. So if you're breastfeeding, don't let them convince you to switch to formula.
Another thing our doctor stressed when DS was about 6 months old was not to give him babyfood because it's so low in sodium and fats -- told us to feed him whatever we're eating -- feed him regular foods ground up.
Another thing, not related to aggressive preventative treatment was the community waiting room at our local CF clinic. They just do not practice good infection control. When DS was a newborn, it was easier, we just kept him in his carseat carrier, away from other cf patients. But as he got older, we opted out of the program because of the overcrowded waiting room, toys, and not being assigned our own exam room -- the patients rotated from room to room instead of doctors coming in to see individual patients.
Our local CF clinic doesn't believe in doing nebs or CPT unless there are symptoms; however our primary doctor had us doing cpt, nebs (albuterol & atrovent) 3-4 times a day. He was also put on actigall (bile salts) -- his liver levels were high, most likely from being on TPN (iv feeding) for several weeks, enzymes, adeks vitamin drops, keflex as a prophalactive antibiotic.
We were under pressure several times by the local clinic and the dietician at the hospital to put DS on pregistimil (formula); however, we tried it for a week and he hated it -- screamed and threw a fit. His primary CF doctor indicated we should feed him what he'll eat and we switched him to regular formula, which he would eat. So if you're breastfeeding, don't let them convince you to switch to formula.
Another thing our doctor stressed when DS was about 6 months old was not to give him babyfood because it's so low in sodium and fats -- told us to feed him whatever we're eating -- feed him regular foods ground up.
Another thing, not related to aggressive preventative treatment was the community waiting room at our local CF clinic. They just do not practice good infection control. When DS was a newborn, it was easier, we just kept him in his carseat carrier, away from other cf patients. But as he got older, we opted out of the program because of the overcrowded waiting room, toys, and not being assigned our own exam room -- the patients rotated from room to room instead of doctors coming in to see individual patients.
DS was diagnosed because he was born with a bowel obstruction (meconium illeus). So we were learning CPT when he was about a week old. While we kinda grumbled about having to learn so much -- we were doing CPT with nebs 4 times a day, we did notice that it actually relaxed him and he'd fall asleep during treatments. Friend of mine's granddaughter wasn't diagnosed until she was almost two and the poor kids screamed and struggled the entire time.
Our local CF clinic doesn't believe in doing nebs or CPT unless there are symptoms; however our primary doctor had us doing cpt, nebs (albuterol & atrovent) 3-4 times a day. He was also put on actigall (bile salts) -- his liver levels were high, most likely from being on TPN (iv feeding) for several weeks, enzymes, adeks vitamin drops, keflex as a prophalactive antibiotic.
We were under pressure several times by the local clinic and the dietician at the hospital to put DS on pregistimil (formula); however, we tried it for a week and he hated it -- screamed and threw a fit. His primary CF doctor indicated we should feed him what he'll eat and we switched him to regular formula, which he would eat. So if you're breastfeeding, don't let them convince you to switch to formula.
Another thing our doctor stressed when DS was about 6 months old was not to give him babyfood because it's so low in sodium and fats -- told us to feed him whatever we're eating -- feed him regular foods ground up.
Another thing, not related to aggressive preventative treatment was the community waiting room at our local CF clinic. They just do not practice good infection control. When DS was a newborn, it was easier, we just kept him in his carseat carrier, away from other cf patients. But as he got older, we opted out of the program because of the overcrowded waiting room, toys, and not being assigned our own exam room -- the patients rotated from room to room instead of doctors coming in to see individual patients.
Our local CF clinic doesn't believe in doing nebs or CPT unless there are symptoms; however our primary doctor had us doing cpt, nebs (albuterol & atrovent) 3-4 times a day. He was also put on actigall (bile salts) -- his liver levels were high, most likely from being on TPN (iv feeding) for several weeks, enzymes, adeks vitamin drops, keflex as a prophalactive antibiotic.
We were under pressure several times by the local clinic and the dietician at the hospital to put DS on pregistimil (formula); however, we tried it for a week and he hated it -- screamed and threw a fit. His primary CF doctor indicated we should feed him what he'll eat and we switched him to regular formula, which he would eat. So if you're breastfeeding, don't let them convince you to switch to formula.
Another thing our doctor stressed when DS was about 6 months old was not to give him babyfood because it's so low in sodium and fats -- told us to feed him whatever we're eating -- feed him regular foods ground up.
Another thing, not related to aggressive preventative treatment was the community waiting room at our local CF clinic. They just do not practice good infection control. When DS was a newborn, it was easier, we just kept him in his carseat carrier, away from other cf patients. But as he got older, we opted out of the program because of the overcrowded waiting room, toys, and not being assigned our own exam room -- the patients rotated from room to room instead of doctors coming in to see individual patients.
DS was diagnosed because he was born with a bowel obstruction (meconium illeus). So we were learning CPT when he was about a week old. While we kinda grumbled about having to learn so much -- we were doing CPT with nebs 4 times a day, we did notice that it actually relaxed him and he'd fall asleep during treatments. Friend of mine's granddaughter wasn't diagnosed until she was almost two and the poor kids screamed and struggled the entire time.
Our local CF clinic doesn't believe in doing nebs or CPT unless there are symptoms; however our primary doctor had us doing cpt, nebs (albuterol & atrovent) 3-4 times a day. He was also put on actigall (bile salts) -- his liver levels were high, most likely from being on TPN (iv feeding) for several weeks, enzymes, adeks vitamin drops, keflex as a prophalactive antibiotic.
We were under pressure several times by the local clinic and the dietician at the hospital to put DS on pregistimil (formula); however, we tried it for a week and he hated it -- screamed and threw a fit. His primary CF doctor indicated we should feed him what he'll eat and we switched him to regular formula, which he would eat. So if you're breastfeeding, don't let them convince you to switch to formula.
Another thing our doctor stressed when DS was about 6 months old was not to give him babyfood because it's so low in sodium and fats -- told us to feed him whatever we're eating -- feed him regular foods ground up.
Another thing, not related to aggressive preventative treatment was the community waiting room at our local CF clinic. They just do not practice good infection control. When DS was a newborn, it was easier, we just kept him in his carseat carrier, away from other cf patients. But as he got older, we opted out of the program because of the overcrowded waiting room, toys, and not being assigned our own exam room -- the patients rotated from room to room instead of doctors coming in to see individual patients.
Our local CF clinic doesn't believe in doing nebs or CPT unless there are symptoms; however our primary doctor had us doing cpt, nebs (albuterol & atrovent) 3-4 times a day. He was also put on actigall (bile salts) -- his liver levels were high, most likely from being on TPN (iv feeding) for several weeks, enzymes, adeks vitamin drops, keflex as a prophalactive antibiotic.
We were under pressure several times by the local clinic and the dietician at the hospital to put DS on pregistimil (formula); however, we tried it for a week and he hated it -- screamed and threw a fit. His primary CF doctor indicated we should feed him what he'll eat and we switched him to regular formula, which he would eat. So if you're breastfeeding, don't let them convince you to switch to formula.
Another thing our doctor stressed when DS was about 6 months old was not to give him babyfood because it's so low in sodium and fats -- told us to feed him whatever we're eating -- feed him regular foods ground up.
Another thing, not related to aggressive preventative treatment was the community waiting room at our local CF clinic. They just do not practice good infection control. When DS was a newborn, it was easier, we just kept him in his carseat carrier, away from other cf patients. But as he got older, we opted out of the program because of the overcrowded waiting room, toys, and not being assigned our own exam room -- the patients rotated from room to room instead of doctors coming in to see individual patients.
DS was diagnosed because he was born with a bowel obstruction (meconium illeus). So we were learning CPT when he was about a week old. While we kinda grumbled about having to learn so much -- we were doing CPT with nebs 4 times a day, we did notice that it actually relaxed him and he'd fall asleep during treatments. Friend of mine's granddaughter wasn't diagnosed until she was almost two and the poor kids screamed and struggled the entire time.
Our local CF clinic doesn't believe in doing nebs or CPT unless there are symptoms; however our primary doctor had us doing cpt, nebs (albuterol & atrovent) 3-4 times a day. He was also put on actigall (bile salts) -- his liver levels were high, most likely from being on TPN (iv feeding) for several weeks, enzymes, adeks vitamin drops, keflex as a prophalactive antibiotic.
We were under pressure several times by the local clinic and the dietician at the hospital to put DS on pregistimil (formula); however, we tried it for a week and he hated it -- screamed and threw a fit. His primary CF doctor indicated we should feed him what he'll eat and we switched him to regular formula, which he would eat. So if you're breastfeeding, don't let them convince you to switch to formula.
Another thing our doctor stressed when DS was about 6 months old was not to give him babyfood because it's so low in sodium and fats -- told us to feed him whatever we're eating -- feed him regular foods ground up.
Another thing, not related to aggressive preventative treatment was the community waiting room at our local CF clinic. They just do not practice good infection control. When DS was a newborn, it was easier, we just kept him in his carseat carrier, away from other cf patients. But as he got older, we opted out of the program because of the overcrowded waiting room, toys, and not being assigned our own exam room -- the patients rotated from room to room instead of doctors coming in to see individual patients.
Our local CF clinic doesn't believe in doing nebs or CPT unless there are symptoms; however our primary doctor had us doing cpt, nebs (albuterol & atrovent) 3-4 times a day. He was also put on actigall (bile salts) -- his liver levels were high, most likely from being on TPN (iv feeding) for several weeks, enzymes, adeks vitamin drops, keflex as a prophalactive antibiotic.
We were under pressure several times by the local clinic and the dietician at the hospital to put DS on pregistimil (formula); however, we tried it for a week and he hated it -- screamed and threw a fit. His primary CF doctor indicated we should feed him what he'll eat and we switched him to regular formula, which he would eat. So if you're breastfeeding, don't let them convince you to switch to formula.
Another thing our doctor stressed when DS was about 6 months old was not to give him babyfood because it's so low in sodium and fats -- told us to feed him whatever we're eating -- feed him regular foods ground up.
Another thing, not related to aggressive preventative treatment was the community waiting room at our local CF clinic. They just do not practice good infection control. When DS was a newborn, it was easier, we just kept him in his carseat carrier, away from other cf patients. But as he got older, we opted out of the program because of the overcrowded waiting room, toys, and not being assigned our own exam room -- the patients rotated from room to room instead of doctors coming in to see individual patients.