Madelyn's new meds.

[LuvMy2Girls]

Madelyn is on Pulmacort & Prevacid. But I was reading earlier that pulmacort was for 12 mths and older. Is it going to be okay for her? Has anyone ever had any problems? She is only 5 1/2 mths old. Also, I'm still having trouble with her poop. That baby has diaper rash so bad she is bleeding. No lie, I change her about 15 times a day. I can't even lay her out to air out long enough before she poops again. They said that we will get her blood test in about 3 more weeks. Why does it take so long?! I'm so impatient when it comes to my kids I guess. Anyway, about her poop, she has to be on Nutramigen b/c of milk allergies. I had her on Alimentum but she was sick so bad. Does anyone know anything that I can mention to the Doctors that can help her?

-Paige

 

[LuvMy2Girls]

Madelyn is on Pulmacort & Prevacid. But I was reading earlier that pulmacort was for 12 mths and older. Is it going to be okay for her? Has anyone ever had any problems? She is only 5 1/2 mths old. Also, I'm still having trouble with her poop. That baby has diaper rash so bad she is bleeding. No lie, I change her about 15 times a day. I can't even lay her out to air out long enough before she poops again. They said that we will get her blood test in about 3 more weeks. Why does it take so long?! I'm so impatient when it comes to my kids I guess. Anyway, about her poop, she has to be on Nutramigen b/c of milk allergies. I had her on Alimentum but she was sick so bad. Does anyone know anything that I can mention to the Doctors that can help her?

-Paige

 

[anonymous]

Hi Paige,

Is Your daughter pooping 15 times a day? Is she taking pancreatic enzymes? 15 times aday sounds like too much. has she recently been on antibiotics? my daughter had a terrible daiper rash when she was a baby it turned out to be yeast from recent doses of antibiotics(it does a number on their tummies.

Rebecca(mom to sammy 7 no Cf and Maggie 3 with CF)

 

[anonymous]

Hi Paige,

Is Your daughter pooping 15 times a day? Is she taking pancreatic enzymes? 15 times aday sounds like too much. has she recently been on antibiotics? my daughter had a terrible daiper rash when she was a baby it turned out to be yeast from recent doses of antibiotics(it does a number on their tummies.

Rebecca(mom to sammy 7 no Cf and Maggie 3 with CF)

 

[becca23]

When my daughter had diaper rach that bad my pediatrician recommend I take her in to a swimming pool, she said the chlorine would help clear it up. IT WORKS!!!

 

[becca23]

When my daughter had diaper rach that bad my pediatrician recommend I take her in to a swimming pool, she said the chlorine would help clear it up. IT WORKS!!!

 

[Beccad5498]

The reason that the bloodwork takes so long (at least per the MD we had to deal with) is that they are actually trying to grow the sickness in the blood and then test meds to see which would best work for the child and sickness. Don't get to stir crazy about that portion.
In regards to the poop issue. My mother-in law said that when my husband was a child and was having stomach issues (remember this is during the cloth diaper phase, pampers didn't even exist) she would take a plastic tarp and place in his play pen to allow him to "air out" and if an accident happened then the tarp would be washed off outside and the baby would get a bath. They lived on Key West so they really didn't have the options that are available now. However, it is a thought.<img src="i/expressions/face-icon-small-smile.gif" border="0">
Hope the crazy idea helps or at least leads you to a solution.

 

[Beccad5498]

The reason that the bloodwork takes so long (at least per the MD we had to deal with) is that they are actually trying to grow the sickness in the blood and then test meds to see which would best work for the child and sickness. Don't get to stir crazy about that portion.
In regards to the poop issue. My mother-in law said that when my husband was a child and was having stomach issues (remember this is during the cloth diaper phase, pampers didn't even exist) she would take a plastic tarp and place in his play pen to allow him to "air out" and if an accident happened then the tarp would be washed off outside and the baby would get a bath. They lived on Key West so they really didn't have the options that are available now. However, it is a thought.<img src="i/expressions/face-icon-small-smile.gif" border="0">
Hope the crazy idea helps or at least leads you to a solution.

 

[anonymous]

Ouch! The bleeding butt is so hard to deal with! Emily had it really bad in the NICU and for about a month after we got home. Definately get the enzyme straightened out. Emily was getting too much at first, we think, and that contributed to her bad butt. What finally helped, once the enzyme was under control, was a combination of using Bordeaux's Butt Paste (Target, Wal-mart and most pharmacies around us sell it) and putting her under a heat lamp to air out at least once a day. Yes, she pooped all over every time we did it, but we just cleaned up and tried again later. (We did lots of laundry, and still are because with her refluzx she spits up a lot). My husband built the heat lamp with the same type of bulb that they had been using in the NICU. He built a nifty stand to go over her basinette and we just plopped her on her tummy under it with cloth diapers under her to catch the poop. After a couple days the bleeding had stopped and it had healed completly with in a week or so. You'd never know now that her butt had, at one point, been completly raw. I wish it hadn't taken me so long to stop using the stuff (Bag Balm) that they sent us home from the hospital with befor we finally switched to Bordeaux's. I just got fed up waiting for it to be the miracle cue they said it was suposed to be. It was my first lesson in following my instinct, and I'm so glad I did. IF you want info on how the lamp was built, just let me know!

 

[anonymous]

Ouch! The bleeding butt is so hard to deal with! Emily had it really bad in the NICU and for about a month after we got home. Definately get the enzyme straightened out. Emily was getting too much at first, we think, and that contributed to her bad butt. What finally helped, once the enzyme was under control, was a combination of using Bordeaux's Butt Paste (Target, Wal-mart and most pharmacies around us sell it) and putting her under a heat lamp to air out at least once a day. Yes, she pooped all over every time we did it, but we just cleaned up and tried again later. (We did lots of laundry, and still are because with her refluzx she spits up a lot). My husband built the heat lamp with the same type of bulb that they had been using in the NICU. He built a nifty stand to go over her basinette and we just plopped her on her tummy under it with cloth diapers under her to catch the poop. After a couple days the bleeding had stopped and it had healed completly with in a week or so. You'd never know now that her butt had, at one point, been completly raw. I wish it hadn't taken me so long to stop using the stuff (Bag Balm) that they sent us home from the hospital with befor we finally switched to Bordeaux's. I just got fed up waiting for it to be the miracle cue they said it was suposed to be. It was my first lesson in following my instinct, and I'm so glad I did. IF you want info on how the lamp was built, just let me know!

 

[anonymous]

There's some stuff we got at the NICU called Critic-aid. Made by sween or baza. We called it butt paste. A lot thicker than boudroux's and seemed to really dry things up nicely. When DS was on augmentin for several weeks, he had constant poops so we gave him lots of yogurt, upped his enzymes and bathed him two or three times a day to give his butt a good soak, then covered him with butt paste.

 

[anonymous]

There's some stuff we got at the NICU called Critic-aid. Made by sween or baza. We called it butt paste. A lot thicker than boudroux's and seemed to really dry things up nicely. When DS was on augmentin for several weeks, he had constant poops so we gave him lots of yogurt, upped his enzymes and bathed him two or three times a day to give his butt a good soak, then covered him with butt paste.

 

[anonymous]

Hi Paige,

So sorry your daughter is going through all this. I have some questions because I'm a little confused. Does your daughter have a CF diagnosis yet? Is the bloodwork for identifying genetic mutations?

If she doesn't have a diagnosis, I'm guessing she doesn't get enzymes yet. It appears that she really needs them diagnosis or not. The doctors shouldn't let her be stooling all day for three weeks waiting for results.

If she is getting enzymes then they are not working. Let your doctor and nutritionist know exactly how much she is stooling. Bring in a soiled diaper and show them if you need to.

The butt paste recipe is what our clinic recommends to help treat the rash. Good luck and I hope things improve soon.

Maria (mother of three daughters, the youngest, Samantha w/cf)

 

[anonymous]

Hi Paige,

So sorry your daughter is going through all this. I have some questions because I'm a little confused. Does your daughter have a CF diagnosis yet? Is the bloodwork for identifying genetic mutations?

If she doesn't have a diagnosis, I'm guessing she doesn't get enzymes yet. It appears that she really needs them diagnosis or not. The doctors shouldn't let her be stooling all day for three weeks waiting for results.

If she is getting enzymes then they are not working. Let your doctor and nutritionist know exactly how much she is stooling. Bring in a soiled diaper and show them if you need to.

The butt paste recipe is what our clinic recommends to help treat the rash. Good luck and I hope things improve soon.

Maria (mother of three daughters, the youngest, Samantha w/cf)

 

[anonymous]

My son started Pulmicort well under age 1 and has never had any problems with it. He was also a great pooper and puker his first year even after his CF diagnosis and starting to use enzymes and drinking alimentum instead of milk. Whenever he was/is on antibiotics, we add Culturelle to his food - it's a version of acidophillus that helps digestion and keeps him from getting diarrhea - might be worth asking the Doctor if it's worth trying.

 

[anonymous]

My son started Pulmicort well under age 1 and has never had any problems with it. He was also a great pooper and puker his first year even after his CF diagnosis and starting to use enzymes and drinking alimentum instead of milk. Whenever he was/is on antibiotics, we add Culturelle to his food - it's a version of acidophillus that helps digestion and keeps him from getting diarrhea - might be worth asking the Doctor if it's worth trying.

 

[anonymous]

You can get acidopholus powder from the pharmacy to help if it may have to do with antibiotic reactions. Just add the powder to her formula. This is what we did with my daughter. She was on alimentum as well. We also put corn starch (just like you have in your pantry) in her diapers to help with the diaper rash.

 

[anonymous]

You can get acidopholus powder from the pharmacy to help if it may have to do with antibiotic reactions. Just add the powder to her formula. This is what we did with my daughter. She was on alimentum as well. We also put corn starch (just like you have in your pantry) in her diapers to help with the diaper rash.