New to forum need advice

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ehtansky21

New member
We are wheat, soy, and milk free. I make just about everything from scratch. I am getting pretty good at adding in the calories. Ask away in regards to recipes. I have got just about anything. Basically I just substitute coconut milk for milk and/or water in most recipes. What are the things he will eat??? I think you have a double wammy (sp???), because it seems that kids with CF also have issues with pickiness and one of my boys has serious texture issues.
As far a rice milk goes, thee are some very watered down brands, meaning they have a lot less calories. The best I have found is original rice dream.
Is he nebulizing hypertonic saline solution??? That seems to be really good at clearing out the sinuses. MY boys also do a hypertonic nasal spray every night before bed.

God bless you, all of us need parents like you, that know the details of our children's health and want to help in any manner possible!!!

blessings,
missa
 
E

ehtansky21

New member
We are wheat, soy, and milk free. I make just about everything from scratch. I am getting pretty good at adding in the calories. Ask away in regards to recipes. I have got just about anything. Basically I just substitute coconut milk for milk and/or water in most recipes. What are the things he will eat??? I think you have a double wammy (sp???), because it seems that kids with CF also have issues with pickiness and one of my boys has serious texture issues.
As far a rice milk goes, thee are some very watered down brands, meaning they have a lot less calories. The best I have found is original rice dream.
Is he nebulizing hypertonic saline solution??? That seems to be really good at clearing out the sinuses. MY boys also do a hypertonic nasal spray every night before bed.

God bless you, all of us need parents like you, that know the details of our children's health and want to help in any manner possible!!!

blessings,
missa
 
E

ehtansky21

New member
We are wheat, soy, and milk free. I make just about everything from scratch. I am getting pretty good at adding in the calories. Ask away in regards to recipes. I have got just about anything. Basically I just substitute coconut milk for milk and/or water in most recipes. What are the things he will eat??? I think you have a double wammy (sp???), because it seems that kids with CF also have issues with pickiness and one of my boys has serious texture issues.
As far a rice milk goes, thee are some very watered down brands, meaning they have a lot less calories. The best I have found is original rice dream.
Is he nebulizing hypertonic saline solution??? That seems to be really good at clearing out the sinuses. MY boys also do a hypertonic nasal spray every night before bed.

God bless you, all of us need parents like you, that know the details of our children's health and want to help in any manner possible!!!

blessings,
missa
 
E

ehtansky21

New member
We are wheat, soy, and milk free. I make just about everything from scratch. I am getting pretty good at adding in the calories. Ask away in regards to recipes. I have got just about anything. Basically I just substitute coconut milk for milk and/or water in most recipes. What are the things he will eat??? I think you have a double wammy (sp???), because it seems that kids with CF also have issues with pickiness and one of my boys has serious texture issues.
As far a rice milk goes, thee are some very watered down brands, meaning they have a lot less calories. The best I have found is original rice dream.
Is he nebulizing hypertonic saline solution??? That seems to be really good at clearing out the sinuses. MY boys also do a hypertonic nasal spray every night before bed.

God bless you, all of us need parents like you, that know the details of our children's health and want to help in any manner possible!!!

blessings,
missa
 
E

ehtansky21

New member
We are wheat, soy, and milk free. I make just about everything from scratch. I am getting pretty good at adding in the calories. Ask away in regards to recipes. I have got just about anything. Basically I just substitute coconut milk for milk and/or water in most recipes. What are the things he will eat??? I think you have a double wammy (sp???), because it seems that kids with CF also have issues with pickiness and one of my boys has serious texture issues.
<br />As far a rice milk goes, thee are some very watered down brands, meaning they have a lot less calories. The best I have found is original rice dream.
<br />Is he nebulizing hypertonic saline solution??? That seems to be really good at clearing out the sinuses. MY boys also do a hypertonic nasal spray every night before bed.
<br />
<br />God bless you, all of us need parents like you, that know the details of our children's health and want to help in any manner possible!!!
<br />
<br />blessings,
<br />missa
 
R

robert321

New member
I would ask the dr to reconsider and send your son to an ent, I'm not an expert, so don't take my advise like I was one, but in a situation where he's having trouble breathing, I would think they could at least remove the polyps without a problem. From what I understand most problems with procedures on small children are based out of development issues. I don't understand what issues could arise from removing polyps.
I don't have any suggestions on weight gain, most everything I personally do is dairy based.
 
R

robert321

New member
I would ask the dr to reconsider and send your son to an ent, I'm not an expert, so don't take my advise like I was one, but in a situation where he's having trouble breathing, I would think they could at least remove the polyps without a problem. From what I understand most problems with procedures on small children are based out of development issues. I don't understand what issues could arise from removing polyps.
I don't have any suggestions on weight gain, most everything I personally do is dairy based.
 
R

robert321

New member
I would ask the dr to reconsider and send your son to an ent, I'm not an expert, so don't take my advise like I was one, but in a situation where he's having trouble breathing, I would think they could at least remove the polyps without a problem. From what I understand most problems with procedures on small children are based out of development issues. I don't understand what issues could arise from removing polyps.
I don't have any suggestions on weight gain, most everything I personally do is dairy based.
 
R

robert321

New member
I would ask the dr to reconsider and send your son to an ent, I'm not an expert, so don't take my advise like I was one, but in a situation where he's having trouble breathing, I would think they could at least remove the polyps without a problem. From what I understand most problems with procedures on small children are based out of development issues. I don't understand what issues could arise from removing polyps.
I don't have any suggestions on weight gain, most everything I personally do is dairy based.
 
R

robert321

New member
I would ask the dr to reconsider and send your son to an ent, I'm not an expert, so don't take my advise like I was one, but in a situation where he's having trouble breathing, I would think they could at least remove the polyps without a problem. From what I understand most problems with procedures on small children are based out of development issues. I don't understand what issues could arise from removing polyps.
<br />I don't have any suggestions on weight gain, most everything I personally do is dairy based.
 
I

izemmom

New member
Well, first, here's a hug to you and your family. Neither CF nor Autism is easy. Our neighbor is autistic and I see their struggles and sadness over it. My heart goes out to you.

Like others who responded, I would also suggest that you see an ENT. My Emily had her firt sinus clean out last summer and she'll be going for an endoscopy next week. She just turned 4. I think an ENT will see things differently than your pulmo. In my opinion the sinuses must get taken care of before the other issues, even eating, can be addressed.

We too, start our day at 5:30 to get her out the door by 7:00. We're in a routine with it now, and it's just what we do, but it's not always easy. My husband can be more flexible with his arrival at work than I can, so he takes the morning "duty." Seems like something always comes up to delay them.

I wish you all the best and look forward to reading more from you. I also look forward to visiting your sunny state in 4 more days! YAAAAY!
 
I

izemmom

New member
Well, first, here's a hug to you and your family. Neither CF nor Autism is easy. Our neighbor is autistic and I see their struggles and sadness over it. My heart goes out to you.

Like others who responded, I would also suggest that you see an ENT. My Emily had her firt sinus clean out last summer and she'll be going for an endoscopy next week. She just turned 4. I think an ENT will see things differently than your pulmo. In my opinion the sinuses must get taken care of before the other issues, even eating, can be addressed.

We too, start our day at 5:30 to get her out the door by 7:00. We're in a routine with it now, and it's just what we do, but it's not always easy. My husband can be more flexible with his arrival at work than I can, so he takes the morning "duty." Seems like something always comes up to delay them.

I wish you all the best and look forward to reading more from you. I also look forward to visiting your sunny state in 4 more days! YAAAAY!
 
I

izemmom

New member
Well, first, here's a hug to you and your family. Neither CF nor Autism is easy. Our neighbor is autistic and I see their struggles and sadness over it. My heart goes out to you.

Like others who responded, I would also suggest that you see an ENT. My Emily had her firt sinus clean out last summer and she'll be going for an endoscopy next week. She just turned 4. I think an ENT will see things differently than your pulmo. In my opinion the sinuses must get taken care of before the other issues, even eating, can be addressed.

We too, start our day at 5:30 to get her out the door by 7:00. We're in a routine with it now, and it's just what we do, but it's not always easy. My husband can be more flexible with his arrival at work than I can, so he takes the morning "duty." Seems like something always comes up to delay them.

I wish you all the best and look forward to reading more from you. I also look forward to visiting your sunny state in 4 more days! YAAAAY!
 
I

izemmom

New member
Well, first, here's a hug to you and your family. Neither CF nor Autism is easy. Our neighbor is autistic and I see their struggles and sadness over it. My heart goes out to you.

Like others who responded, I would also suggest that you see an ENT. My Emily had her firt sinus clean out last summer and she'll be going for an endoscopy next week. She just turned 4. I think an ENT will see things differently than your pulmo. In my opinion the sinuses must get taken care of before the other issues, even eating, can be addressed.

We too, start our day at 5:30 to get her out the door by 7:00. We're in a routine with it now, and it's just what we do, but it's not always easy. My husband can be more flexible with his arrival at work than I can, so he takes the morning "duty." Seems like something always comes up to delay them.

I wish you all the best and look forward to reading more from you. I also look forward to visiting your sunny state in 4 more days! YAAAAY!
 
I

izemmom

New member
Well, first, here's a hug to you and your family. Neither CF nor Autism is easy. Our neighbor is autistic and I see their struggles and sadness over it. My heart goes out to you.
<br />
<br />Like others who responded, I would also suggest that you see an ENT. My Emily had her firt sinus clean out last summer and she'll be going for an endoscopy next week. She just turned 4. I think an ENT will see things differently than your pulmo. In my opinion the sinuses must get taken care of before the other issues, even eating, can be addressed.
<br />
<br />We too, start our day at 5:30 to get her out the door by 7:00. We're in a routine with it now, and it's just what we do, but it's not always easy. My husband can be more flexible with his arrival at work than I can, so he takes the morning "duty." Seems like something always comes up to delay them.
<br />
<br />I wish you all the best and look forward to reading more from you. I also look forward to visiting your sunny state in 4 more days! YAAAAY!
 
S

sunnyinflorida

New member
New to forum

thank -you
Very interested in the solution for cleaning sinus. Little DJ already has a QVAR nasal inhaler, that was recommeded by his first Pulmo Dr.,made by just placing a baby bottle nipple over the UDI mouth piece. we are using this twice a day ,when he allows. At first it worked for the inflamation , but he needs the rinse now ,If he will allow.Also what solution do you use for nebulizer - ?
Little DJ only eats chicken nugget fries from tysin and spicy fries only drinks rice milk strawberry mix
crunchy fried onion
 
S

sunnyinflorida

New member
New to forum

thank -you
Very interested in the solution for cleaning sinus. Little DJ already has a QVAR nasal inhaler, that was recommeded by his first Pulmo Dr.,made by just placing a baby bottle nipple over the UDI mouth piece. we are using this twice a day ,when he allows. At first it worked for the inflamation , but he needs the rinse now ,If he will allow.Also what solution do you use for nebulizer - ?
Little DJ only eats chicken nugget fries from tysin and spicy fries only drinks rice milk strawberry mix
crunchy fried onion
 
S

sunnyinflorida

New member
New to forum

thank -you
Very interested in the solution for cleaning sinus. Little DJ already has a QVAR nasal inhaler, that was recommeded by his first Pulmo Dr.,made by just placing a baby bottle nipple over the UDI mouth piece. we are using this twice a day ,when he allows. At first it worked for the inflamation , but he needs the rinse now ,If he will allow.Also what solution do you use for nebulizer - ?
Little DJ only eats chicken nugget fries from tysin and spicy fries only drinks rice milk strawberry mix
crunchy fried onion
 
S

sunnyinflorida

New member
New to forum

thank -you
Very interested in the solution for cleaning sinus. Little DJ already has a QVAR nasal inhaler, that was recommeded by his first Pulmo Dr.,made by just placing a baby bottle nipple over the UDI mouth piece. we are using this twice a day ,when he allows. At first it worked for the inflamation , but he needs the rinse now ,If he will allow.Also what solution do you use for nebulizer - ?
Little DJ only eats chicken nugget fries from tysin and spicy fries only drinks rice milk strawberry mix
crunchy fried onion
 
S

sunnyinflorida

New member
New to forum

thank -you
<br />Very interested in the solution for cleaning sinus. Little DJ already has a QVAR nasal inhaler, that was recommeded by his first Pulmo Dr.,made by just placing a baby bottle nipple over the UDI mouth piece. we are using this twice a day ,when he allows. At first it worked for the inflamation , but he needs the rinse now ,If he will allow.Also what solution do you use for nebulizer - ?
<br />Little DJ only eats chicken nugget fries from tysin and spicy fries only drinks rice milk strawberry mix
<br />crunchy fried onion
 
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