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first visit to childrens hospital CF clinic

fuel1316

New member
well were home from our first visit to childrens hospital

it went pretty well. they upped her meds to one full pill before every feeding (instead of just half) and we had a little scare... were suposed to be suplamenting her salt intake and were told 1/8th tsp. in every bottle, but it turns out it was suposed to be 1/8th tsp. over 24 hours! :shock: they ordered blood work stat because too much salt is really bad so were totaly freaked out! got the blood work and it all came back in normal range (she was just peeing out the excess salt THANK GOD) so once we got that out of the way..... not shell be getting lung treatments 2x a day to prevent any future lung problems.

they also encouraged me to put her in public school. i was going to home school so she wouldnt get sick but they said NO day care and NO preschool before 4y/o. anything after that she should be good.

they said NO one should be holding her right now but us. i asked because my little cousin wants to hold her so so bad and im so nervous shell get sick and the DR said no one should be holding or touching her and were not allowd in any crowded areas (grocery stores etc) so dh has to do all the shoping

so her lungs are great for now and we just have to keep on the treatments to keep them from getting damaged. shell get bronco dialator 2x a day and chest percusion 2x a day

also shes in the 50th % for her height but only 10 % for her weight <img src="i/expressions/face-icon-small-sad.gif" border="0"> shes so small... we go back in 2 weeks to see if upping her meds helps her gain weight if not then well probably have to start cramming her food with calories... pray the pills work
 

fuel1316

New member
well were home from our first visit to childrens hospital

it went pretty well. they upped her meds to one full pill before every feeding (instead of just half) and we had a little scare... were suposed to be suplamenting her salt intake and were told 1/8th tsp. in every bottle, but it turns out it was suposed to be 1/8th tsp. over 24 hours! :shock: they ordered blood work stat because too much salt is really bad so were totaly freaked out! got the blood work and it all came back in normal range (she was just peeing out the excess salt THANK GOD) so once we got that out of the way..... not shell be getting lung treatments 2x a day to prevent any future lung problems.

they also encouraged me to put her in public school. i was going to home school so she wouldnt get sick but they said NO day care and NO preschool before 4y/o. anything after that she should be good.

they said NO one should be holding her right now but us. i asked because my little cousin wants to hold her so so bad and im so nervous shell get sick and the DR said no one should be holding or touching her and were not allowd in any crowded areas (grocery stores etc) so dh has to do all the shoping

so her lungs are great for now and we just have to keep on the treatments to keep them from getting damaged. shell get bronco dialator 2x a day and chest percusion 2x a day

also shes in the 50th % for her height but only 10 % for her weight <img src="i/expressions/face-icon-small-sad.gif" border="0"> shes so small... we go back in 2 weeks to see if upping her meds helps her gain weight if not then well probably have to start cramming her food with calories... pray the pills work
 

fuel1316

New member
well were home from our first visit to childrens hospital

it went pretty well. they upped her meds to one full pill before every feeding (instead of just half) and we had a little scare... were suposed to be suplamenting her salt intake and were told 1/8th tsp. in every bottle, but it turns out it was suposed to be 1/8th tsp. over 24 hours! :shock: they ordered blood work stat because too much salt is really bad so were totaly freaked out! got the blood work and it all came back in normal range (she was just peeing out the excess salt THANK GOD) so once we got that out of the way..... not shell be getting lung treatments 2x a day to prevent any future lung problems.

they also encouraged me to put her in public school. i was going to home school so she wouldnt get sick but they said NO day care and NO preschool before 4y/o. anything after that she should be good.

they said NO one should be holding her right now but us. i asked because my little cousin wants to hold her so so bad and im so nervous shell get sick and the DR said no one should be holding or touching her and were not allowd in any crowded areas (grocery stores etc) so dh has to do all the shoping

so her lungs are great for now and we just have to keep on the treatments to keep them from getting damaged. shell get bronco dialator 2x a day and chest percusion 2x a day

also shes in the 50th % for her height but only 10 % for her weight <img src="i/expressions/face-icon-small-sad.gif" border="0"> shes so small... we go back in 2 weeks to see if upping her meds helps her gain weight if not then well probably have to start cramming her food with calories... pray the pills work
 

fuel1316

New member
well were home from our first visit to childrens hospital

it went pretty well. they upped her meds to one full pill before every feeding (instead of just half) and we had a little scare... were suposed to be suplamenting her salt intake and were told 1/8th tsp. in every bottle, but it turns out it was suposed to be 1/8th tsp. over 24 hours! :shock: they ordered blood work stat because too much salt is really bad so were totaly freaked out! got the blood work and it all came back in normal range (she was just peeing out the excess salt THANK GOD) so once we got that out of the way..... not shell be getting lung treatments 2x a day to prevent any future lung problems.

they also encouraged me to put her in public school. i was going to home school so she wouldnt get sick but they said NO day care and NO preschool before 4y/o. anything after that she should be good.

they said NO one should be holding her right now but us. i asked because my little cousin wants to hold her so so bad and im so nervous shell get sick and the DR said no one should be holding or touching her and were not allowd in any crowded areas (grocery stores etc) so dh has to do all the shoping

so her lungs are great for now and we just have to keep on the treatments to keep them from getting damaged. shell get bronco dialator 2x a day and chest percusion 2x a day

also shes in the 50th % for her height but only 10 % for her weight <img src="i/expressions/face-icon-small-sad.gif" border="0"> shes so small... we go back in 2 weeks to see if upping her meds helps her gain weight if not then well probably have to start cramming her food with calories... pray the pills work
 

fuel1316

New member
well were home from our first visit to childrens hospital
<br />
<br />it went pretty well. they upped her meds to one full pill before every feeding (instead of just half) and we had a little scare... were suposed to be suplamenting her salt intake and were told 1/8th tsp. in every bottle, but it turns out it was suposed to be 1/8th tsp. over 24 hours! :shock: they ordered blood work stat because too much salt is really bad so were totaly freaked out! got the blood work and it all came back in normal range (she was just peeing out the excess salt THANK GOD) so once we got that out of the way..... not shell be getting lung treatments 2x a day to prevent any future lung problems.
<br />
<br />they also encouraged me to put her in public school. i was going to home school so she wouldnt get sick but they said NO day care and NO preschool before 4y/o. anything after that she should be good.
<br />
<br />they said NO one should be holding her right now but us. i asked because my little cousin wants to hold her so so bad and im so nervous shell get sick and the DR said no one should be holding or touching her and were not allowd in any crowded areas (grocery stores etc) so dh has to do all the shoping
<br />
<br />so her lungs are great for now and we just have to keep on the treatments to keep them from getting damaged. shell get bronco dialator 2x a day and chest percusion 2x a day
<br />
<br />also shes in the 50th % for her height but only 10 % for her weight <img src="i/expressions/face-icon-small-sad.gif" border="0"> shes so small... we go back in 2 weeks to see if upping her meds helps her gain weight if not then well probably have to start cramming her food with calories... pray the pills work
 
S

sdelorenzo

Guest
Congratulations on your precious baby! Sounds like a good drs visit. I know the first few visits are overwhelming. I think one thing you need to realize is the dr was giving advice about day care, school, going out in public, etc. There are no definitive answers, they are just their opinions. I haven't heard anyone ever mention that their cf dr said to keep their child out of school until age 4. A few years maybe. My children also have double delta 508. I started them in mothers-day-out at 2 yrs old. They did great and they didn't get sick. Thankfully, they have been very healthy. They don't seem to catch the average cold that their friends do. As far as grocery stores, if you cover her up with a blanket in her car seat, I don't know how she could get sick. I think it is a bit sad that your dr said no one else could hold your baby. Goodness, how long does he want you to keep her in a bubble? The few colds I can think of that my kids caught were from their daddy who goes to work each day. At least for my kids, the battle with cf lung issues tends to be inflammation, reflux and bacteria, not catching viruses.

My children's dr and dietician told me to stop breastfeeding, later to stop giving so much fruit and add foods like cheetos instead. Silly advice looking back, I wish I hadn't listened to them. Sorry if I sound like I am coming down on your dr, I am sure they are just looking out for your daughter's best interest. But the things you mentioned were advice and you can choose to let your cousin hold your baby without feeling bad. I just made sure whoever was around my babies and wanted to hold them wasn't sick. They had to wash their hands before holding my babies and they didn't get sick.

Also a great book for you to read is Child of Mine by Ellyn Satter. You can get it on Amazon. It talks about how to get a child to eat. I had huge issues with getting my daughter to eat when she was a baby. The book really helped me with my second with cf. You won't be able to cram food in a newborn. They will only eat what they want, period. The harder you work (i.e. force) the worse the problem will get. Babies/kids are in charge of how much they take in. Once you start interfering with that, they fight back and lose interest in eating and you end up with more problems. Been there with my daughter, it wasn't fun. Life was much easier for my second child with cf when I just let him decide how much to eat.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf, Grant, two months, no cf
 
S

sdelorenzo

Guest
Congratulations on your precious baby! Sounds like a good drs visit. I know the first few visits are overwhelming. I think one thing you need to realize is the dr was giving advice about day care, school, going out in public, etc. There are no definitive answers, they are just their opinions. I haven't heard anyone ever mention that their cf dr said to keep their child out of school until age 4. A few years maybe. My children also have double delta 508. I started them in mothers-day-out at 2 yrs old. They did great and they didn't get sick. Thankfully, they have been very healthy. They don't seem to catch the average cold that their friends do. As far as grocery stores, if you cover her up with a blanket in her car seat, I don't know how she could get sick. I think it is a bit sad that your dr said no one else could hold your baby. Goodness, how long does he want you to keep her in a bubble? The few colds I can think of that my kids caught were from their daddy who goes to work each day. At least for my kids, the battle with cf lung issues tends to be inflammation, reflux and bacteria, not catching viruses.

My children's dr and dietician told me to stop breastfeeding, later to stop giving so much fruit and add foods like cheetos instead. Silly advice looking back, I wish I hadn't listened to them. Sorry if I sound like I am coming down on your dr, I am sure they are just looking out for your daughter's best interest. But the things you mentioned were advice and you can choose to let your cousin hold your baby without feeling bad. I just made sure whoever was around my babies and wanted to hold them wasn't sick. They had to wash their hands before holding my babies and they didn't get sick.

Also a great book for you to read is Child of Mine by Ellyn Satter. You can get it on Amazon. It talks about how to get a child to eat. I had huge issues with getting my daughter to eat when she was a baby. The book really helped me with my second with cf. You won't be able to cram food in a newborn. They will only eat what they want, period. The harder you work (i.e. force) the worse the problem will get. Babies/kids are in charge of how much they take in. Once you start interfering with that, they fight back and lose interest in eating and you end up with more problems. Been there with my daughter, it wasn't fun. Life was much easier for my second child with cf when I just let him decide how much to eat.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf, Grant, two months, no cf
 
S

sdelorenzo

Guest
Congratulations on your precious baby! Sounds like a good drs visit. I know the first few visits are overwhelming. I think one thing you need to realize is the dr was giving advice about day care, school, going out in public, etc. There are no definitive answers, they are just their opinions. I haven't heard anyone ever mention that their cf dr said to keep their child out of school until age 4. A few years maybe. My children also have double delta 508. I started them in mothers-day-out at 2 yrs old. They did great and they didn't get sick. Thankfully, they have been very healthy. They don't seem to catch the average cold that their friends do. As far as grocery stores, if you cover her up with a blanket in her car seat, I don't know how she could get sick. I think it is a bit sad that your dr said no one else could hold your baby. Goodness, how long does he want you to keep her in a bubble? The few colds I can think of that my kids caught were from their daddy who goes to work each day. At least for my kids, the battle with cf lung issues tends to be inflammation, reflux and bacteria, not catching viruses.

My children's dr and dietician told me to stop breastfeeding, later to stop giving so much fruit and add foods like cheetos instead. Silly advice looking back, I wish I hadn't listened to them. Sorry if I sound like I am coming down on your dr, I am sure they are just looking out for your daughter's best interest. But the things you mentioned were advice and you can choose to let your cousin hold your baby without feeling bad. I just made sure whoever was around my babies and wanted to hold them wasn't sick. They had to wash their hands before holding my babies and they didn't get sick.

Also a great book for you to read is Child of Mine by Ellyn Satter. You can get it on Amazon. It talks about how to get a child to eat. I had huge issues with getting my daughter to eat when she was a baby. The book really helped me with my second with cf. You won't be able to cram food in a newborn. They will only eat what they want, period. The harder you work (i.e. force) the worse the problem will get. Babies/kids are in charge of how much they take in. Once you start interfering with that, they fight back and lose interest in eating and you end up with more problems. Been there with my daughter, it wasn't fun. Life was much easier for my second child with cf when I just let him decide how much to eat.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf, Grant, two months, no cf
 
S

sdelorenzo

Guest
Congratulations on your precious baby! Sounds like a good drs visit. I know the first few visits are overwhelming. I think one thing you need to realize is the dr was giving advice about day care, school, going out in public, etc. There are no definitive answers, they are just their opinions. I haven't heard anyone ever mention that their cf dr said to keep their child out of school until age 4. A few years maybe. My children also have double delta 508. I started them in mothers-day-out at 2 yrs old. They did great and they didn't get sick. Thankfully, they have been very healthy. They don't seem to catch the average cold that their friends do. As far as grocery stores, if you cover her up with a blanket in her car seat, I don't know how she could get sick. I think it is a bit sad that your dr said no one else could hold your baby. Goodness, how long does he want you to keep her in a bubble? The few colds I can think of that my kids caught were from their daddy who goes to work each day. At least for my kids, the battle with cf lung issues tends to be inflammation, reflux and bacteria, not catching viruses.

My children's dr and dietician told me to stop breastfeeding, later to stop giving so much fruit and add foods like cheetos instead. Silly advice looking back, I wish I hadn't listened to them. Sorry if I sound like I am coming down on your dr, I am sure they are just looking out for your daughter's best interest. But the things you mentioned were advice and you can choose to let your cousin hold your baby without feeling bad. I just made sure whoever was around my babies and wanted to hold them wasn't sick. They had to wash their hands before holding my babies and they didn't get sick.

Also a great book for you to read is Child of Mine by Ellyn Satter. You can get it on Amazon. It talks about how to get a child to eat. I had huge issues with getting my daughter to eat when she was a baby. The book really helped me with my second with cf. You won't be able to cram food in a newborn. They will only eat what they want, period. The harder you work (i.e. force) the worse the problem will get. Babies/kids are in charge of how much they take in. Once you start interfering with that, they fight back and lose interest in eating and you end up with more problems. Been there with my daughter, it wasn't fun. Life was much easier for my second child with cf when I just let him decide how much to eat.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf, Grant, two months, no cf
 
S

sdelorenzo

Guest
Congratulations on your precious baby! Sounds like a good drs visit. I know the first few visits are overwhelming. I think one thing you need to realize is the dr was giving advice about day care, school, going out in public, etc. There are no definitive answers, they are just their opinions. I haven't heard anyone ever mention that their cf dr said to keep their child out of school until age 4. A few years maybe. My children also have double delta 508. I started them in mothers-day-out at 2 yrs old. They did great and they didn't get sick. Thankfully, they have been very healthy. They don't seem to catch the average cold that their friends do. As far as grocery stores, if you cover her up with a blanket in her car seat, I don't know how she could get sick. I think it is a bit sad that your dr said no one else could hold your baby. Goodness, how long does he want you to keep her in a bubble? The few colds I can think of that my kids caught were from their daddy who goes to work each day. At least for my kids, the battle with cf lung issues tends to be inflammation, reflux and bacteria, not catching viruses.
<br />
<br />My children's dr and dietician told me to stop breastfeeding, later to stop giving so much fruit and add foods like cheetos instead. Silly advice looking back, I wish I hadn't listened to them. Sorry if I sound like I am coming down on your dr, I am sure they are just looking out for your daughter's best interest. But the things you mentioned were advice and you can choose to let your cousin hold your baby without feeling bad. I just made sure whoever was around my babies and wanted to hold them wasn't sick. They had to wash their hands before holding my babies and they didn't get sick.
<br />
<br />Also a great book for you to read is Child of Mine by Ellyn Satter. You can get it on Amazon. It talks about how to get a child to eat. I had huge issues with getting my daughter to eat when she was a baby. The book really helped me with my second with cf. You won't be able to cram food in a newborn. They will only eat what they want, period. The harder you work (i.e. force) the worse the problem will get. Babies/kids are in charge of how much they take in. Once you start interfering with that, they fight back and lose interest in eating and you end up with more problems. Been there with my daughter, it wasn't fun. Life was much easier for my second child with cf when I just let him decide how much to eat.
<br />Sharon, mom of Sophia, 7 and Jack, 5 both with cf, Grant, two months, no cf
<br />
<br />
 

JazzysMom

New member
I agree with most of your doctors recommendations except for NO ONE holding her other then you.

Obviously you dont want someone who is sick or with filthy hands holding ANY infant, but to deny someone outright for no "valid" reasons seems to be overprotective IMHO!

If precautions are made why not others partake in the joy of your little one.....wash hands, no slobbering & obviously if someone is sick they must wait until they are better.

I do hope the increase in enzymes help with the weight.

HUGS
 

JazzysMom

New member
I agree with most of your doctors recommendations except for NO ONE holding her other then you.

Obviously you dont want someone who is sick or with filthy hands holding ANY infant, but to deny someone outright for no "valid" reasons seems to be overprotective IMHO!

If precautions are made why not others partake in the joy of your little one.....wash hands, no slobbering & obviously if someone is sick they must wait until they are better.

I do hope the increase in enzymes help with the weight.

HUGS
 

JazzysMom

New member
I agree with most of your doctors recommendations except for NO ONE holding her other then you.

Obviously you dont want someone who is sick or with filthy hands holding ANY infant, but to deny someone outright for no "valid" reasons seems to be overprotective IMHO!

If precautions are made why not others partake in the joy of your little one.....wash hands, no slobbering & obviously if someone is sick they must wait until they are better.

I do hope the increase in enzymes help with the weight.

HUGS
 

JazzysMom

New member
I agree with most of your doctors recommendations except for NO ONE holding her other then you.

Obviously you dont want someone who is sick or with filthy hands holding ANY infant, but to deny someone outright for no "valid" reasons seems to be overprotective IMHO!

If precautions are made why not others partake in the joy of your little one.....wash hands, no slobbering & obviously if someone is sick they must wait until they are better.

I do hope the increase in enzymes help with the weight.

HUGS
 

JazzysMom

New member
I agree with most of your doctors recommendations except for NO ONE holding her other then you.
<br />
<br />Obviously you dont want someone who is sick or with filthy hands holding ANY infant, but to deny someone outright for no "valid" reasons seems to be overprotective IMHO!
<br />
<br />If precautions are made why not others partake in the joy of your little one.....wash hands, no slobbering & obviously if someone is sick they must wait until they are better.
<br />
<br />I do hope the increase in enzymes help with the weight.
<br />
<br />HUGS
 

Ratatosk

Administrator
Staff member
We had a rule with DS that if anyone wanted to hold him, they had to wash their hands first. And we tried to make sure that he was kept away from anyone who had a cold or who was sick.

He did go to daycare/preschool. We asked his doctor who indicated as long has he was in a smaller group and kept away from the general population (germy toddlers). Daycare center had a separate room for the babies (there were 6-7 total) and we were very comfortable with their germ control practices, sanitation of surfaces/toys...

The local doctor had similar ideas as yours does -- no daycare, no swimming lessons, no going outside in the summer, no pets, no carpet... A very extensive list...
 

Ratatosk

Administrator
Staff member
We had a rule with DS that if anyone wanted to hold him, they had to wash their hands first. And we tried to make sure that he was kept away from anyone who had a cold or who was sick.

He did go to daycare/preschool. We asked his doctor who indicated as long has he was in a smaller group and kept away from the general population (germy toddlers). Daycare center had a separate room for the babies (there were 6-7 total) and we were very comfortable with their germ control practices, sanitation of surfaces/toys...

The local doctor had similar ideas as yours does -- no daycare, no swimming lessons, no going outside in the summer, no pets, no carpet... A very extensive list...
 

Ratatosk

Administrator
Staff member
We had a rule with DS that if anyone wanted to hold him, they had to wash their hands first. And we tried to make sure that he was kept away from anyone who had a cold or who was sick.

He did go to daycare/preschool. We asked his doctor who indicated as long has he was in a smaller group and kept away from the general population (germy toddlers). Daycare center had a separate room for the babies (there were 6-7 total) and we were very comfortable with their germ control practices, sanitation of surfaces/toys...

The local doctor had similar ideas as yours does -- no daycare, no swimming lessons, no going outside in the summer, no pets, no carpet... A very extensive list...
 

Ratatosk

Administrator
Staff member
We had a rule with DS that if anyone wanted to hold him, they had to wash their hands first. And we tried to make sure that he was kept away from anyone who had a cold or who was sick.

He did go to daycare/preschool. We asked his doctor who indicated as long has he was in a smaller group and kept away from the general population (germy toddlers). Daycare center had a separate room for the babies (there were 6-7 total) and we were very comfortable with their germ control practices, sanitation of surfaces/toys...

The local doctor had similar ideas as yours does -- no daycare, no swimming lessons, no going outside in the summer, no pets, no carpet... A very extensive list...
 

Ratatosk

Administrator
Staff member
We had a rule with DS that if anyone wanted to hold him, they had to wash their hands first. And we tried to make sure that he was kept away from anyone who had a cold or who was sick.
<br />
<br />He did go to daycare/preschool. We asked his doctor who indicated as long has he was in a smaller group and kept away from the general population (germy toddlers). Daycare center had a separate room for the babies (there were 6-7 total) and we were very comfortable with their germ control practices, sanitation of surfaces/toys...
<br />
<br />The local doctor had similar ideas as yours does -- no daycare, no swimming lessons, no going outside in the summer, no pets, no carpet... A very extensive list...
 
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