Kayla stopped eating again!

[kaylasdad]

Kayla was doing good with the new enzymes they gave her, now she starting the same thing all over again not wanting to take them or eat.
She has only ate 3 oz. today and threw up alittle of that.
I just don't know what to do, why they didn't put her back on the feeding tube is a puzzle to me. I am really starting to freak out she's 5 1/2 months old and only weights 10 lb. 11 oz. i think thats right( if not close.) .
She is on heart meds we are wondering if some of the meds can be starting to give her a stomach ache.
She has a nurse (just for weight check) that comes to the house now she is going to come once a week,between her going to the cf clinic once a week un till we figure this out.

 

[kaylasdad]

Kayla was doing good with the new enzymes they gave her, now she starting the same thing all over again not wanting to take them or eat.
She has only ate 3 oz. today and threw up alittle of that.
I just don't know what to do, why they didn't put her back on the feeding tube is a puzzle to me. I am really starting to freak out she's 5 1/2 months old and only weights 10 lb. 11 oz. i think thats right( if not close.) .
She is on heart meds we are wondering if some of the meds can be starting to give her a stomach ache.
She has a nurse (just for weight check) that comes to the house now she is going to come once a week,between her going to the cf clinic once a week un till we figure this out.

 

[kaylasdad]

Kayla was doing good with the new enzymes they gave her, now she starting the same thing all over again not wanting to take them or eat.
She has only ate 3 oz. today and threw up alittle of that.
I just don't know what to do, why they didn't put her back on the feeding tube is a puzzle to me. I am really starting to freak out she's 5 1/2 months old and only weights 10 lb. 11 oz. i think thats right( if not close.) .
She is on heart meds we are wondering if some of the meds can be starting to give her a stomach ache.
She has a nurse (just for weight check) that comes to the house now she is going to come once a week,between her going to the cf clinic once a week un till we figure this out.

 

[kaylasdad]

Kayla was doing good with the new enzymes they gave her, now she starting the same thing all over again not wanting to take them or eat.
She has only ate 3 oz. today and threw up alittle of that.
I just don't know what to do, why they didn't put her back on the feeding tube is a puzzle to me. I am really starting to freak out she's 5 1/2 months old and only weights 10 lb. 11 oz. i think thats right( if not close.) .
She is on heart meds we are wondering if some of the meds can be starting to give her a stomach ache.
She has a nurse (just for weight check) that comes to the house now she is going to come once a week,between her going to the cf clinic once a week un till we figure this out.

 

[kaylasdad]

Kayla was doing good with the new enzymes they gave her, now she starting the same thing all over again not wanting to take them or eat.
<br />She has only ate 3 oz. today and threw up alittle of that.
<br />I just don't know what to do, why they didn't put her back on the feeding tube is a puzzle to me. I am really starting to freak out she's 5 1/2 months old and only weights 10 lb. 11 oz. i think thats right( if not close.) .
<br />She is on heart meds we are wondering if some of the meds can be starting to give her a stomach ache.
<br />She has a nurse (just for weight check) that comes to the house now she is going to come once a week,between her going to the cf clinic once a week un till we figure this out.

 

[shimmereestar]

I am so sorry you are having to go through all of this. I just said a quick prayer for you guys. Was the feeding tube she had the one that went through her nose? Have you or your doctors considered a g button or g tube? These could be covered up with her clothing and she wouldn't be able to pull it out. We have had to consider this for Ellie. I know about those weekly visits, we've been going every week pretty much since Jan. Have you looked up the side effects of the medicine she's on for her heart? I know there are a couple of websites out there that if you type in the name of the med., it will bring up the side effects. Hang in there, I know you'll get through this. Know I'm thinking of you.

 

[shimmereestar]

I am so sorry you are having to go through all of this. I just said a quick prayer for you guys. Was the feeding tube she had the one that went through her nose? Have you or your doctors considered a g button or g tube? These could be covered up with her clothing and she wouldn't be able to pull it out. We have had to consider this for Ellie. I know about those weekly visits, we've been going every week pretty much since Jan. Have you looked up the side effects of the medicine she's on for her heart? I know there are a couple of websites out there that if you type in the name of the med., it will bring up the side effects. Hang in there, I know you'll get through this. Know I'm thinking of you.

 

[shimmereestar]

I am so sorry you are having to go through all of this. I just said a quick prayer for you guys. Was the feeding tube she had the one that went through her nose? Have you or your doctors considered a g button or g tube? These could be covered up with her clothing and she wouldn't be able to pull it out. We have had to consider this for Ellie. I know about those weekly visits, we've been going every week pretty much since Jan. Have you looked up the side effects of the medicine she's on for her heart? I know there are a couple of websites out there that if you type in the name of the med., it will bring up the side effects. Hang in there, I know you'll get through this. Know I'm thinking of you.

 

[shimmereestar]

I am so sorry you are having to go through all of this. I just said a quick prayer for you guys. Was the feeding tube she had the one that went through her nose? Have you or your doctors considered a g button or g tube? These could be covered up with her clothing and she wouldn't be able to pull it out. We have had to consider this for Ellie. I know about those weekly visits, we've been going every week pretty much since Jan. Have you looked up the side effects of the medicine she's on for her heart? I know there are a couple of websites out there that if you type in the name of the med., it will bring up the side effects. Hang in there, I know you'll get through this. Know I'm thinking of you.

 

[shimmereestar]

I am so sorry you are having to go through all of this. I just said a quick prayer for you guys. Was the feeding tube she had the one that went through her nose? Have you or your doctors considered a g button or g tube? These could be covered up with her clothing and she wouldn't be able to pull it out. We have had to consider this for Ellie. I know about those weekly visits, we've been going every week pretty much since Jan. Have you looked up the side effects of the medicine she's on for her heart? I know there are a couple of websites out there that if you type in the name of the med., it will bring up the side effects. Hang in there, I know you'll get through this. Know I'm thinking of you.

 

[Ratatosk]

With DS we were always struggling to feed him, in fact I'd set the alarm and get up in the middle of the night to sleep feed him. The best times to feed him were when he was sleepy or sleeping. He hated having a messy diaper --- when he was a teeny tiny baby, not so much as a toddler, so we wondered if he associated eating with discomfort -- reflux, stooling...

Another thing I would notice -- he was never ever a big drinker. Never ever more than 3-4 ounces at a time, so we had to bump up calories by adding more powder to his formula. But when he'd REALLY drop down -- struggle just to get an ounce of two down him, we realized he wasn't feeling well. Couple times it was ear infection, another teething, or constipation was a biggy. Was so incredibly frustrating. I researched bottle aversion, tried numerous different bottles, fast flow nipples, different styles, even tried using oral syringes since he took his meds so well though we MIGHT be able to get him to "eat" that way.

I don't have much advice. Remember feeling panick-struck. We DID try to find a correlation.

 

[Ratatosk]

With DS we were always struggling to feed him, in fact I'd set the alarm and get up in the middle of the night to sleep feed him. The best times to feed him were when he was sleepy or sleeping. He hated having a messy diaper --- when he was a teeny tiny baby, not so much as a toddler, so we wondered if he associated eating with discomfort -- reflux, stooling...

Another thing I would notice -- he was never ever a big drinker. Never ever more than 3-4 ounces at a time, so we had to bump up calories by adding more powder to his formula. But when he'd REALLY drop down -- struggle just to get an ounce of two down him, we realized he wasn't feeling well. Couple times it was ear infection, another teething, or constipation was a biggy. Was so incredibly frustrating. I researched bottle aversion, tried numerous different bottles, fast flow nipples, different styles, even tried using oral syringes since he took his meds so well though we MIGHT be able to get him to "eat" that way.

I don't have much advice. Remember feeling panick-struck. We DID try to find a correlation.

 

[Ratatosk]

With DS we were always struggling to feed him, in fact I'd set the alarm and get up in the middle of the night to sleep feed him. The best times to feed him were when he was sleepy or sleeping. He hated having a messy diaper --- when he was a teeny tiny baby, not so much as a toddler, so we wondered if he associated eating with discomfort -- reflux, stooling...

Another thing I would notice -- he was never ever a big drinker. Never ever more than 3-4 ounces at a time, so we had to bump up calories by adding more powder to his formula. But when he'd REALLY drop down -- struggle just to get an ounce of two down him, we realized he wasn't feeling well. Couple times it was ear infection, another teething, or constipation was a biggy. Was so incredibly frustrating. I researched bottle aversion, tried numerous different bottles, fast flow nipples, different styles, even tried using oral syringes since he took his meds so well though we MIGHT be able to get him to "eat" that way.

I don't have much advice. Remember feeling panick-struck. We DID try to find a correlation.

 

[Ratatosk]

With DS we were always struggling to feed him, in fact I'd set the alarm and get up in the middle of the night to sleep feed him. The best times to feed him were when he was sleepy or sleeping. He hated having a messy diaper --- when he was a teeny tiny baby, not so much as a toddler, so we wondered if he associated eating with discomfort -- reflux, stooling...

Another thing I would notice -- he was never ever a big drinker. Never ever more than 3-4 ounces at a time, so we had to bump up calories by adding more powder to his formula. But when he'd REALLY drop down -- struggle just to get an ounce of two down him, we realized he wasn't feeling well. Couple times it was ear infection, another teething, or constipation was a biggy. Was so incredibly frustrating. I researched bottle aversion, tried numerous different bottles, fast flow nipples, different styles, even tried using oral syringes since he took his meds so well though we MIGHT be able to get him to "eat" that way.

I don't have much advice. Remember feeling panick-struck. We DID try to find a correlation.

 

[Ratatosk]

With DS we were always struggling to feed him, in fact I'd set the alarm and get up in the middle of the night to sleep feed him. The best times to feed him were when he was sleepy or sleeping. He hated having a messy diaper --- when he was a teeny tiny baby, not so much as a toddler, so we wondered if he associated eating with discomfort -- reflux, stooling...
<br />
<br />Another thing I would notice -- he was never ever a big drinker. Never ever more than 3-4 ounces at a time, so we had to bump up calories by adding more powder to his formula. But when he'd REALLY drop down -- struggle just to get an ounce of two down him, we realized he wasn't feeling well. Couple times it was ear infection, another teething, or constipation was a biggy. Was so incredibly frustrating. I researched bottle aversion, tried numerous different bottles, fast flow nipples, different styles, even tried using oral syringes since he took his meds so well though we MIGHT be able to get him to "eat" that way.
<br />
<br />I don't have much advice. Remember feeling panick-struck. We DID try to find a correlation.

 

[sdelorenzo]

What formula are you using? My daughter threw up tons and refused to eat when she was an infant. She was diagnosed at 6 weeks of age. Her average was around 10 ounces a day. Her drs really didn't seem concerned, but I was. At three months of age, I told them she needed a ng tube. I don't know when they would have ever suggested it. Her GI dr was cooperative and let her get one. She was on the feeding tube for 4 months and really gained weight well with it. Sophia ended up having a milk allergy. It was hard to figure out. An endoscopy showed her intestines were irritated some. A few weeks after we switched her formula to Nutramigen, she started to eat around 24 ounces.

Honestly, we have gone through sooo many feeding problems with my daughter. I think all of her food problems at a young age really made her not enjoy eating even today. A great book for you to read asap is Child of Mine by Ellyn Satter. You can get it on line at amazon.com. It discusses the appropriate way to feed a child even a child with cf. I still had control issues with my daughter not wanting to eat when she got older (1 yr+). She HAD to eat even if she didn't want to. It didn't get me very far. Just more problems. I used the Child of Mine philosophy with son (also with cf) and he has always been a good eater thankfully.

One thing that I have learned through my kids having cf and especially through the milk allergy experience is that I have to be a decision maker with the drs. They are too busy and don't know my child like I do. I can't wait around for drs to be proactive. Twice I have just showed up at the cf clinic with my kids when the dr did not call me back within a day. My kids were very congested and I was concerned. I told the lady at the front desk, I would wait until one of the 10 cf drs had time to see my kids. It only took about 30 minutes both times. One of the times my daughter was admitted with pneumonia. I have to be proactive and speak to the drs about the pros and cons of a situation. I have to make requests (like she needs a feeding tube now!) politely while I explain the reasons why. It has always worked and the drs have gone along with my requests thankfully.
It is a very stressful situation you are in, I know.
By the way Sophia's bmi is 85%! She did get a feeding tube a year ago and is doing wonderful!
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

 

[sdelorenzo]

What formula are you using? My daughter threw up tons and refused to eat when she was an infant. She was diagnosed at 6 weeks of age. Her average was around 10 ounces a day. Her drs really didn't seem concerned, but I was. At three months of age, I told them she needed a ng tube. I don't know when they would have ever suggested it. Her GI dr was cooperative and let her get one. She was on the feeding tube for 4 months and really gained weight well with it. Sophia ended up having a milk allergy. It was hard to figure out. An endoscopy showed her intestines were irritated some. A few weeks after we switched her formula to Nutramigen, she started to eat around 24 ounces.

Honestly, we have gone through sooo many feeding problems with my daughter. I think all of her food problems at a young age really made her not enjoy eating even today. A great book for you to read asap is Child of Mine by Ellyn Satter. You can get it on line at amazon.com. It discusses the appropriate way to feed a child even a child with cf. I still had control issues with my daughter not wanting to eat when she got older (1 yr+). She HAD to eat even if she didn't want to. It didn't get me very far. Just more problems. I used the Child of Mine philosophy with son (also with cf) and he has always been a good eater thankfully.

One thing that I have learned through my kids having cf and especially through the milk allergy experience is that I have to be a decision maker with the drs. They are too busy and don't know my child like I do. I can't wait around for drs to be proactive. Twice I have just showed up at the cf clinic with my kids when the dr did not call me back within a day. My kids were very congested and I was concerned. I told the lady at the front desk, I would wait until one of the 10 cf drs had time to see my kids. It only took about 30 minutes both times. One of the times my daughter was admitted with pneumonia. I have to be proactive and speak to the drs about the pros and cons of a situation. I have to make requests (like she needs a feeding tube now!) politely while I explain the reasons why. It has always worked and the drs have gone along with my requests thankfully.
It is a very stressful situation you are in, I know.
By the way Sophia's bmi is 85%! She did get a feeding tube a year ago and is doing wonderful!
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

 

[sdelorenzo]

What formula are you using? My daughter threw up tons and refused to eat when she was an infant. She was diagnosed at 6 weeks of age. Her average was around 10 ounces a day. Her drs really didn't seem concerned, but I was. At three months of age, I told them she needed a ng tube. I don't know when they would have ever suggested it. Her GI dr was cooperative and let her get one. She was on the feeding tube for 4 months and really gained weight well with it. Sophia ended up having a milk allergy. It was hard to figure out. An endoscopy showed her intestines were irritated some. A few weeks after we switched her formula to Nutramigen, she started to eat around 24 ounces.

Honestly, we have gone through sooo many feeding problems with my daughter. I think all of her food problems at a young age really made her not enjoy eating even today. A great book for you to read asap is Child of Mine by Ellyn Satter. You can get it on line at amazon.com. It discusses the appropriate way to feed a child even a child with cf. I still had control issues with my daughter not wanting to eat when she got older (1 yr+). She HAD to eat even if she didn't want to. It didn't get me very far. Just more problems. I used the Child of Mine philosophy with son (also with cf) and he has always been a good eater thankfully.

One thing that I have learned through my kids having cf and especially through the milk allergy experience is that I have to be a decision maker with the drs. They are too busy and don't know my child like I do. I can't wait around for drs to be proactive. Twice I have just showed up at the cf clinic with my kids when the dr did not call me back within a day. My kids were very congested and I was concerned. I told the lady at the front desk, I would wait until one of the 10 cf drs had time to see my kids. It only took about 30 minutes both times. One of the times my daughter was admitted with pneumonia. I have to be proactive and speak to the drs about the pros and cons of a situation. I have to make requests (like she needs a feeding tube now!) politely while I explain the reasons why. It has always worked and the drs have gone along with my requests thankfully.
It is a very stressful situation you are in, I know.
By the way Sophia's bmi is 85%! She did get a feeding tube a year ago and is doing wonderful!
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

 

[sdelorenzo]

What formula are you using? My daughter threw up tons and refused to eat when she was an infant. She was diagnosed at 6 weeks of age. Her average was around 10 ounces a day. Her drs really didn't seem concerned, but I was. At three months of age, I told them she needed a ng tube. I don't know when they would have ever suggested it. Her GI dr was cooperative and let her get one. She was on the feeding tube for 4 months and really gained weight well with it. Sophia ended up having a milk allergy. It was hard to figure out. An endoscopy showed her intestines were irritated some. A few weeks after we switched her formula to Nutramigen, she started to eat around 24 ounces.

Honestly, we have gone through sooo many feeding problems with my daughter. I think all of her food problems at a young age really made her not enjoy eating even today. A great book for you to read asap is Child of Mine by Ellyn Satter. You can get it on line at amazon.com. It discusses the appropriate way to feed a child even a child with cf. I still had control issues with my daughter not wanting to eat when she got older (1 yr+). She HAD to eat even if she didn't want to. It didn't get me very far. Just more problems. I used the Child of Mine philosophy with son (also with cf) and he has always been a good eater thankfully.

One thing that I have learned through my kids having cf and especially through the milk allergy experience is that I have to be a decision maker with the drs. They are too busy and don't know my child like I do. I can't wait around for drs to be proactive. Twice I have just showed up at the cf clinic with my kids when the dr did not call me back within a day. My kids were very congested and I was concerned. I told the lady at the front desk, I would wait until one of the 10 cf drs had time to see my kids. It only took about 30 minutes both times. One of the times my daughter was admitted with pneumonia. I have to be proactive and speak to the drs about the pros and cons of a situation. I have to make requests (like she needs a feeding tube now!) politely while I explain the reasons why. It has always worked and the drs have gone along with my requests thankfully.
It is a very stressful situation you are in, I know.
By the way Sophia's bmi is 85%! She did get a feeding tube a year ago and is doing wonderful!
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

 

[sdelorenzo]

What formula are you using? My daughter threw up tons and refused to eat when she was an infant. She was diagnosed at 6 weeks of age. Her average was around 10 ounces a day. Her drs really didn't seem concerned, but I was. At three months of age, I told them she needed a ng tube. I don't know when they would have ever suggested it. Her GI dr was cooperative and let her get one. She was on the feeding tube for 4 months and really gained weight well with it. Sophia ended up having a milk allergy. It was hard to figure out. An endoscopy showed her intestines were irritated some. A few weeks after we switched her formula to Nutramigen, she started to eat around 24 ounces.
<br />
<br />Honestly, we have gone through sooo many feeding problems with my daughter. I think all of her food problems at a young age really made her not enjoy eating even today. A great book for you to read asap is Child of Mine by Ellyn Satter. You can get it on line at amazon.com. It discusses the appropriate way to feed a child even a child with cf. I still had control issues with my daughter not wanting to eat when she got older (1 yr+). She HAD to eat even if she didn't want to. It didn't get me very far. Just more problems. I used the Child of Mine philosophy with son (also with cf) and he has always been a good eater thankfully.
<br />
<br />One thing that I have learned through my kids having cf and especially through the milk allergy experience is that I have to be a decision maker with the drs. They are too busy and don't know my child like I do. I can't wait around for drs to be proactive. Twice I have just showed up at the cf clinic with my kids when the dr did not call me back within a day. My kids were very congested and I was concerned. I told the lady at the front desk, I would wait until one of the 10 cf drs had time to see my kids. It only took about 30 minutes both times. One of the times my daughter was admitted with pneumonia. I have to be proactive and speak to the drs about the pros and cons of a situation. I have to make requests (like she needs a feeding tube now!) politely while I explain the reasons why. It has always worked and the drs have gone along with my requests thankfully.
<br />It is a very stressful situation you are in, I know.
<br />By the way Sophia's bmi is 85%! She did get a feeding tube a year ago and is doing wonderful!
<br />Sharon, mom of Sophia, 6 and Jack, 4 both with cf