please help..how much meds is too much??

B

belinda

New member
Hi, I wanted to write to get some fed back. My son, Noah, 5 months old w/cf has recently tested positive with pseudomonas when we took him to be treated his doc also ordered a swallow test, which they found he was spraying a few drops back into his lungs as he eats. Phalasgia(sp?) is the name of it. So they want to add a thickener (Nectar) to his bottles and for me to stop breastfeeding. They say that I can pump, but the Nectar gel doesn't mix well with breastmilk. Also now they want him on stage 2 foods with the cereal already added. He had gained a pound in one week. Then the next he lost 2 ounces. The doc was concerned. I explained that Noah has had some loose stools. The doc then said if this kept up the next step would be IV antibiotics.

At this point I lost it! It's all so overwhelming. A day for Noah consist of:

2x per day Cipro (oral)
2x per day Tobi
1x per day Adek Vitamins
2 Capsules of Ultrase per feeding
1 Nectar gel pack per feeding
1/4 tsp. of salt per day
2-3x per day PT 24 minutes per session

This is the most he has EVER coughed and struggled to breath. He coughs up a lot of thick fluids after his bottles. He sometes chokes on his Cipro because it's so chalky. And I refuse to stop nursing. It's my gut instinct that if they may be wrong, I can't get my milk back. So I have cut my sessions in half and ten supplement.

Anyone with experience, please help me!
 
B

belinda

New member
Hi, I wanted to write to get some fed back. My son, Noah, 5 months old w/cf has recently tested positive with pseudomonas when we took him to be treated his doc also ordered a swallow test, which they found he was spraying a few drops back into his lungs as he eats. Phalasgia(sp?) is the name of it. So they want to add a thickener (Nectar) to his bottles and for me to stop breastfeeding. They say that I can pump, but the Nectar gel doesn't mix well with breastmilk. Also now they want him on stage 2 foods with the cereal already added. He had gained a pound in one week. Then the next he lost 2 ounces. The doc was concerned. I explained that Noah has had some loose stools. The doc then said if this kept up the next step would be IV antibiotics.

At this point I lost it! It's all so overwhelming. A day for Noah consist of:

2x per day Cipro (oral)
2x per day Tobi
1x per day Adek Vitamins
2 Capsules of Ultrase per feeding
1 Nectar gel pack per feeding
1/4 tsp. of salt per day
2-3x per day PT 24 minutes per session

This is the most he has EVER coughed and struggled to breath. He coughs up a lot of thick fluids after his bottles. He sometes chokes on his Cipro because it's so chalky. And I refuse to stop nursing. It's my gut instinct that if they may be wrong, I can't get my milk back. So I have cut my sessions in half and ten supplement.

Anyone with experience, please help me!
 
K

kybert

New member
thats pretty normal for a child who has pseudomonas. i wouldnt worry unless the medicines make him sicker.
 
K

kybert

New member
thats pretty normal for a child who has pseudomonas. i wouldnt worry unless the medicines make him sicker.
 
A

anonymous

New member
hi Kylie

he had a cold for about 2 weeks in the beginning of the month. Then he seemed back to being healthy and normal. We never would have known he was sick. Can this medicine make his case of pseudomonas worse?
 
A

anonymous

New member
hi Kylie

he had a cold for about 2 weeks in the beginning of the month. Then he seemed back to being healthy and normal. We never would have known he was sick. Can this medicine make his case of pseudomonas worse?
 
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NoDayButToday

New member
Belinda,
I'm not Kylie, but I'll give an answer anyway <img src="i/expressions/face-icon-small-smile.gif" border="0">. I'm not sure if you are asking if the meds he is currently on are making his case of pseudomonas worse, or if you are asking if any cold medicine he may have been on could have made it worse. In either case, the answer is no, it can't make pseudomonas worse. Tobi and Cipro are antibiotics that treat pseudomonas, so unless overused (and made resistant) they can't do any harm, only good.
 
N

NoDayButToday

New member
Belinda,
I'm not Kylie, but I'll give an answer anyway <img src="i/expressions/face-icon-small-smile.gif" border="0">. I'm not sure if you are asking if the meds he is currently on are making his case of pseudomonas worse, or if you are asking if any cold medicine he may have been on could have made it worse. In either case, the answer is no, it can't make pseudomonas worse. Tobi and Cipro are antibiotics that treat pseudomonas, so unless overused (and made resistant) they can't do any harm, only good.
 
M

mommy2bcw2

New member
My 4 month old has been in the hospital for iv antibotics after a month of coughing alot. She would cough so hard she would gag and throw-up her thick phlegm. She does not have pseudomonas, but she has been on antibotics for 3 months out of her 4 months of life! It really was not that bad to be in the hospital for iv antibotics she was immediatly 100% better after starting them. Our problem has been that once we got home she gradully got worse again coughing alot. Maybe allergy related?? We just finished oral steroids and have one more day of Augmentin.
I would opt for the iv antibotics to be sure to get rid of the pseudomonas!!

Her daily meds w/out antibotics are:

xopenex 2x/day
Intal 2x/day
pulmozyne 1x/day
CPT 2x/day
ADEK vitamins 1x/day
prevacid 1x/day
1/8 tsp salt per day
1.5 capsules Ultrase per feeding

It is very overwhelming ~ we have made a chart that stays on the fridge to check everything off each day.
 
M

mommy2bcw2

New member
My 4 month old has been in the hospital for iv antibotics after a month of coughing alot. She would cough so hard she would gag and throw-up her thick phlegm. She does not have pseudomonas, but she has been on antibotics for 3 months out of her 4 months of life! It really was not that bad to be in the hospital for iv antibotics she was immediatly 100% better after starting them. Our problem has been that once we got home she gradully got worse again coughing alot. Maybe allergy related?? We just finished oral steroids and have one more day of Augmentin.
I would opt for the iv antibotics to be sure to get rid of the pseudomonas!!

Her daily meds w/out antibotics are:

xopenex 2x/day
Intal 2x/day
pulmozyne 1x/day
CPT 2x/day
ADEK vitamins 1x/day
prevacid 1x/day
1/8 tsp salt per day
1.5 capsules Ultrase per feeding

It is very overwhelming ~ we have made a chart that stays on the fridge to check everything off each day.
 
N

NoDayButToday

New member
A chart works well to check things off- another good thing is a day-of-the-week pill container, which I use and it makes keeping track of meds much easier. Just a thought <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
N

NoDayButToday

New member
A chart works well to check things off- another good thing is a day-of-the-week pill container, which I use and it makes keeping track of meds much easier. Just a thought <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
A

anonymous

New member
Hi Belinda,

I'm sorry to hear that Noah is sick and that you're finding it overwhelming. I guess it's a steep learning curve for you to have to give him all these medications and that it sometimes seems never-ending. I hope it's some kind of consolation for you that you do get used to the medications once you get into a routine.

Unfortunately, all the things you mentioned are all in a day's work when it comes to CF :/ It sometimes takes us a long time to "bounce back" from a cold, especially when an infection like pseudomonas comes along. His little body is probably not used to all the things being thrown at it, but things will get better. Once the Tobi and Cipro start working towards getting the pseudo under control, everything should clear up a bit quicker. Give it some time.

Also letting you know that IV antibiotics aren't so bad and that they may save him from lung damage further along the track if you get into them early on! Loose stools may just be an indication that he needs a slightly higher dose of enzymes. When I was a baby my weight was a constant issue, and even now my weight fluctuates from day to day.

I also love the chart idea <img src="i/expressions/face-icon-small-smile.gif" border="0">

Good luck and I hope I didn't scare you too much!

Emma (20wcf, Australia)
 
A

anonymous

New member
Hi Belinda,

I'm sorry to hear that Noah is sick and that you're finding it overwhelming. I guess it's a steep learning curve for you to have to give him all these medications and that it sometimes seems never-ending. I hope it's some kind of consolation for you that you do get used to the medications once you get into a routine.

Unfortunately, all the things you mentioned are all in a day's work when it comes to CF :/ It sometimes takes us a long time to "bounce back" from a cold, especially when an infection like pseudomonas comes along. His little body is probably not used to all the things being thrown at it, but things will get better. Once the Tobi and Cipro start working towards getting the pseudo under control, everything should clear up a bit quicker. Give it some time.

Also letting you know that IV antibiotics aren't so bad and that they may save him from lung damage further along the track if you get into them early on! Loose stools may just be an indication that he needs a slightly higher dose of enzymes. When I was a baby my weight was a constant issue, and even now my weight fluctuates from day to day.

I also love the chart idea <img src="i/expressions/face-icon-small-smile.gif" border="0">

Good luck and I hope I didn't scare you too much!

Emma (20wcf, Australia)
 
A

anonymous

New member
A couple of things to add here....
Has the doctor did a sputum culture to see what meds his pseudomonas is sensitive to? He may be risistant to the Cipro, although often, it is the drug of choice for pseudomonas.
The other thing, what if you did go ahead & pump for a few days, but not feed him the breast milk to see if he seems to do better w/o the breast milk. That's a stretch, but maybe worth a try.
Like someone else mentioned. He has delicate little lungs & these first couple of years maybe a little rough until he gets bigger & stronger.
It sounds as if you're doing a wonderful job, hang in there<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
A

anonymous

New member
A couple of things to add here....
Has the doctor did a sputum culture to see what meds his pseudomonas is sensitive to? He may be risistant to the Cipro, although often, it is the drug of choice for pseudomonas.
The other thing, what if you did go ahead & pump for a few days, but not feed him the breast milk to see if he seems to do better w/o the breast milk. That's a stretch, but maybe worth a try.
Like someone else mentioned. He has delicate little lungs & these first couple of years maybe a little rough until he gets bigger & stronger.
It sounds as if you're doing a wonderful job, hang in there<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
R

rachelsmom

New member
I am sorry you are having a rough time with little Noah. My daughter was diagnosed at six months old and I remember all the meds and treatments I had to get in. I would just lose it. I thought I could never handle this. I just want to tell you to hang in there that it does get easier and become a normal routine.

He is going through a bad spell right now and that makes it even harder to handle. I think IV antibiotics might be the best choice you would not believe the difference it wil make. Also if he is in the hospital they can suction him to keep him cleaned out and that might help. It is also sometimes nice to get a break from having to keep up with all the meds and treatments because the nurses and resp therapists you out. Just a thought.

Hang in there it may not seem like it right now but things will settle down and get better.

Teri
 
R

rachelsmom

New member
I am sorry you are having a rough time with little Noah. My daughter was diagnosed at six months old and I remember all the meds and treatments I had to get in. I would just lose it. I thought I could never handle this. I just want to tell you to hang in there that it does get easier and become a normal routine.

He is going through a bad spell right now and that makes it even harder to handle. I think IV antibiotics might be the best choice you would not believe the difference it wil make. Also if he is in the hospital they can suction him to keep him cleaned out and that might help. It is also sometimes nice to get a break from having to keep up with all the meds and treatments because the nurses and resp therapists you out. Just a thought.

Hang in there it may not seem like it right now but things will settle down and get better.

Teri
 
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