New to forum need advice

[sunnyinflorida]

Hi everyone, new to the forum.

My grandson is 4 years old has CF, Autism spectrum disorder and a chronic sinus infection that causes him to wheeze ,nose is blocked, breaths with mouth open and has trouble sleeping . He has had a ct-scan which shows polyps and impaction present .Our past pulmonary Dr. has told us there's nothing that can be done due to age. Nasal sprays don't work when he wheezes, The only med that works is prednisone. Wheezing returns when off the prednisone. He also has pseudomonas and mrsa in his sputum which he is currently taking Tobi for. Is there anything else we should or could be giving him ?

He currently weighs 35 pounds and his height is low on the growth curve. We are looking for ideas on how to help him gain weight. However, he is very finicky with food, mostly because of the autism, we have only been able to get him to eat finger foods such as, chicken nuggets, French fries, potato chips.. Ect ..Also he has quite a few allergies that limit certain foods such as milk, eggs, soy, wheat. He currently drinks rice milk.
Any ideas on helping him gain weight would be greatly appreciated!

Our next situation is getting to school on time. He is currently in a pre-k half day program which starts at 11:30.With his morning routine, he wakes up at 7:30 and we don't finish vest, meds, breathing treatments, breakfast, until roughly, 10:30. next year he is required to be at School by 8 am. How do you manage to get to school on time and fit everything else in?


Thanks,
G'ma in fl.

 

[sunnyinflorida]

Hi everyone, new to the forum.

My grandson is 4 years old has CF, Autism spectrum disorder and a chronic sinus infection that causes him to wheeze ,nose is blocked, breaths with mouth open and has trouble sleeping . He has had a ct-scan which shows polyps and impaction present .Our past pulmonary Dr. has told us there's nothing that can be done due to age. Nasal sprays don't work when he wheezes, The only med that works is prednisone. Wheezing returns when off the prednisone. He also has pseudomonas and mrsa in his sputum which he is currently taking Tobi for. Is there anything else we should or could be giving him ?

He currently weighs 35 pounds and his height is low on the growth curve. We are looking for ideas on how to help him gain weight. However, he is very finicky with food, mostly because of the autism, we have only been able to get him to eat finger foods such as, chicken nuggets, French fries, potato chips.. Ect ..Also he has quite a few allergies that limit certain foods such as milk, eggs, soy, wheat. He currently drinks rice milk.
Any ideas on helping him gain weight would be greatly appreciated!

Our next situation is getting to school on time. He is currently in a pre-k half day program which starts at 11:30.With his morning routine, he wakes up at 7:30 and we don't finish vest, meds, breathing treatments, breakfast, until roughly, 10:30. next year he is required to be at School by 8 am. How do you manage to get to school on time and fit everything else in?


Thanks,
G'ma in fl.

 

[sunnyinflorida]

Hi everyone, new to the forum.

My grandson is 4 years old has CF, Autism spectrum disorder and a chronic sinus infection that causes him to wheeze ,nose is blocked, breaths with mouth open and has trouble sleeping . He has had a ct-scan which shows polyps and impaction present .Our past pulmonary Dr. has told us there's nothing that can be done due to age. Nasal sprays don't work when he wheezes, The only med that works is prednisone. Wheezing returns when off the prednisone. He also has pseudomonas and mrsa in his sputum which he is currently taking Tobi for. Is there anything else we should or could be giving him ?

He currently weighs 35 pounds and his height is low on the growth curve. We are looking for ideas on how to help him gain weight. However, he is very finicky with food, mostly because of the autism, we have only been able to get him to eat finger foods such as, chicken nuggets, French fries, potato chips.. Ect ..Also he has quite a few allergies that limit certain foods such as milk, eggs, soy, wheat. He currently drinks rice milk.
Any ideas on helping him gain weight would be greatly appreciated!

Our next situation is getting to school on time. He is currently in a pre-k half day program which starts at 11:30.With his morning routine, he wakes up at 7:30 and we don't finish vest, meds, breathing treatments, breakfast, until roughly, 10:30. next year he is required to be at School by 8 am. How do you manage to get to school on time and fit everything else in?


Thanks,
G'ma in fl.

 

[sunnyinflorida]

Hi everyone, new to the forum.

My grandson is 4 years old has CF, Autism spectrum disorder and a chronic sinus infection that causes him to wheeze ,nose is blocked, breaths with mouth open and has trouble sleeping . He has had a ct-scan which shows polyps and impaction present .Our past pulmonary Dr. has told us there's nothing that can be done due to age. Nasal sprays don't work when he wheezes, The only med that works is prednisone. Wheezing returns when off the prednisone. He also has pseudomonas and mrsa in his sputum which he is currently taking Tobi for. Is there anything else we should or could be giving him ?

He currently weighs 35 pounds and his height is low on the growth curve. We are looking for ideas on how to help him gain weight. However, he is very finicky with food, mostly because of the autism, we have only been able to get him to eat finger foods such as, chicken nuggets, French fries, potato chips.. Ect ..Also he has quite a few allergies that limit certain foods such as milk, eggs, soy, wheat. He currently drinks rice milk.
Any ideas on helping him gain weight would be greatly appreciated!

Our next situation is getting to school on time. He is currently in a pre-k half day program which starts at 11:30.With his morning routine, he wakes up at 7:30 and we don't finish vest, meds, breathing treatments, breakfast, until roughly, 10:30. next year he is required to be at School by 8 am. How do you manage to get to school on time and fit everything else in?


Thanks,
G'ma in fl.

 

[sunnyinflorida]

<br />
<br />Hi everyone, new to the forum.
<br />
<br />My grandson is 4 years old has CF, Autism spectrum disorder and a chronic sinus infection that causes him to wheeze ,nose is blocked, breaths with mouth open and has trouble sleeping . He has had a ct-scan which shows polyps and impaction present .Our past pulmonary Dr. has told us there's nothing that can be done due to age. Nasal sprays don't work when he wheezes, The only med that works is prednisone. Wheezing returns when off the prednisone. He also has pseudomonas and mrsa in his sputum which he is currently taking Tobi for. Is there anything else we should or could be giving him ?
<br />
<br />He currently weighs 35 pounds and his height is low on the growth curve. We are looking for ideas on how to help him gain weight. However, he is very finicky with food, mostly because of the autism, we have only been able to get him to eat finger foods such as, chicken nuggets, French fries, potato chips.. Ect ..Also he has quite a few allergies that limit certain foods such as milk, eggs, soy, wheat. He currently drinks rice milk.
<br />Any ideas on helping him gain weight would be greatly appreciated!
<br />
<br /> Our next situation is getting to school on time. He is currently in a pre-k half day program which starts at 11:30.With his morning routine, he wakes up at 7:30 and we don't finish vest, meds, breathing treatments, breakfast, until roughly, 10:30. next year he is required to be at School by 8 am. How do you manage to get to school on time and fit everything else in?
<br />
<br />
<br />Thanks,
<br />G'ma in fl.

 

[Ratatosk]

A friend of mine's daughter is 4 and last year she had sinus surgery AND a tonsilectomy. She said her child wasn't sleeping, wasn't eating because she couldn't breathe. After the surgery, completely different child, though she was warned that at some point she'll need sinus surgery again. Her CF clinic had a similar viewpoint, so she really had to push for sinus CTs and treatment.

Extra calories -- we add olive or coconut oil to his casseroles, noodles, etc. We also use a lot of dairy cream and butter, whic is apparently not an option for you.

As for getting ready in the morning. We just have a routine that we've done from day one and stick to it. I get up before 6 and do CPT or put DS in his vest and he sleeps thru the treatment. When we get home from work/school at 5 he gets another vest treatment and again before bed.

 

[Ratatosk]

A friend of mine's daughter is 4 and last year she had sinus surgery AND a tonsilectomy. She said her child wasn't sleeping, wasn't eating because she couldn't breathe. After the surgery, completely different child, though she was warned that at some point she'll need sinus surgery again. Her CF clinic had a similar viewpoint, so she really had to push for sinus CTs and treatment.

Extra calories -- we add olive or coconut oil to his casseroles, noodles, etc. We also use a lot of dairy cream and butter, whic is apparently not an option for you.

As for getting ready in the morning. We just have a routine that we've done from day one and stick to it. I get up before 6 and do CPT or put DS in his vest and he sleeps thru the treatment. When we get home from work/school at 5 he gets another vest treatment and again before bed.

 

[Ratatosk]

A friend of mine's daughter is 4 and last year she had sinus surgery AND a tonsilectomy. She said her child wasn't sleeping, wasn't eating because she couldn't breathe. After the surgery, completely different child, though she was warned that at some point she'll need sinus surgery again. Her CF clinic had a similar viewpoint, so she really had to push for sinus CTs and treatment.

Extra calories -- we add olive or coconut oil to his casseroles, noodles, etc. We also use a lot of dairy cream and butter, whic is apparently not an option for you.

As for getting ready in the morning. We just have a routine that we've done from day one and stick to it. I get up before 6 and do CPT or put DS in his vest and he sleeps thru the treatment. When we get home from work/school at 5 he gets another vest treatment and again before bed.

 

[Ratatosk]

A friend of mine's daughter is 4 and last year she had sinus surgery AND a tonsilectomy. She said her child wasn't sleeping, wasn't eating because she couldn't breathe. After the surgery, completely different child, though she was warned that at some point she'll need sinus surgery again. Her CF clinic had a similar viewpoint, so she really had to push for sinus CTs and treatment.

Extra calories -- we add olive or coconut oil to his casseroles, noodles, etc. We also use a lot of dairy cream and butter, whic is apparently not an option for you.

As for getting ready in the morning. We just have a routine that we've done from day one and stick to it. I get up before 6 and do CPT or put DS in his vest and he sleeps thru the treatment. When we get home from work/school at 5 he gets another vest treatment and again before bed.

 

[Ratatosk]

A friend of mine's daughter is 4 and last year she had sinus surgery AND a tonsilectomy. She said her child wasn't sleeping, wasn't eating because she couldn't breathe. After the surgery, completely different child, though she was warned that at some point she'll need sinus surgery again. Her CF clinic had a similar viewpoint, so she really had to push for sinus CTs and treatment.
<br />
<br />Extra calories -- we add olive or coconut oil to his casseroles, noodles, etc. We also use a lot of dairy cream and butter, whic is apparently not an option for you.
<br />
<br />As for getting ready in the morning. We just have a routine that we've done from day one and stick to it. I get up before 6 and do CPT or put DS in his vest and he sleeps thru the treatment. When we get home from work/school at 5 he gets another vest treatment and again before bed.

 

[pipersmom]

Is he seeing a Dr at a CF Clinic? I only ask because normally they are very on top of CF-related sinus issues. If nothing else, they would refer you to an ENT, which is what they did for my daughter. We also do sinus rinse 2x daily on the ENT's advice, and it does seem to make a big difference.

As for the school thing, when Piper is going, we get up at 5:30 to get meds done, I don't let her sleep through simply because we do nebs at the same time. It bites getting up that early, but her health is most important, and frankly, she usually goes to bed no later than 8pm to make up for it, which I enjoy..lol.

The snack thing is harder since I don't know what ingredients are in things like: Instant breakfast, pudding mixes, etc. Sorry I couldn't be more helpful..

Amanda
Mom to Piper 8yowcf ddf508

 

[pipersmom]

Is he seeing a Dr at a CF Clinic? I only ask because normally they are very on top of CF-related sinus issues. If nothing else, they would refer you to an ENT, which is what they did for my daughter. We also do sinus rinse 2x daily on the ENT's advice, and it does seem to make a big difference.

As for the school thing, when Piper is going, we get up at 5:30 to get meds done, I don't let her sleep through simply because we do nebs at the same time. It bites getting up that early, but her health is most important, and frankly, she usually goes to bed no later than 8pm to make up for it, which I enjoy..lol.

The snack thing is harder since I don't know what ingredients are in things like: Instant breakfast, pudding mixes, etc. Sorry I couldn't be more helpful..

Amanda
Mom to Piper 8yowcf ddf508

 

[pipersmom]

Is he seeing a Dr at a CF Clinic? I only ask because normally they are very on top of CF-related sinus issues. If nothing else, they would refer you to an ENT, which is what they did for my daughter. We also do sinus rinse 2x daily on the ENT's advice, and it does seem to make a big difference.

As for the school thing, when Piper is going, we get up at 5:30 to get meds done, I don't let her sleep through simply because we do nebs at the same time. It bites getting up that early, but her health is most important, and frankly, she usually goes to bed no later than 8pm to make up for it, which I enjoy..lol.

The snack thing is harder since I don't know what ingredients are in things like: Instant breakfast, pudding mixes, etc. Sorry I couldn't be more helpful..

Amanda
Mom to Piper 8yowcf ddf508

 

[pipersmom]

Is he seeing a Dr at a CF Clinic? I only ask because normally they are very on top of CF-related sinus issues. If nothing else, they would refer you to an ENT, which is what they did for my daughter. We also do sinus rinse 2x daily on the ENT's advice, and it does seem to make a big difference.

As for the school thing, when Piper is going, we get up at 5:30 to get meds done, I don't let her sleep through simply because we do nebs at the same time. It bites getting up that early, but her health is most important, and frankly, she usually goes to bed no later than 8pm to make up for it, which I enjoy..lol.

The snack thing is harder since I don't know what ingredients are in things like: Instant breakfast, pudding mixes, etc. Sorry I couldn't be more helpful..

Amanda
Mom to Piper 8yowcf ddf508

 

[pipersmom]

Is he seeing a Dr at a CF Clinic? I only ask because normally they are very on top of CF-related sinus issues. If nothing else, they would refer you to an ENT, which is what they did for my daughter. We also do sinus rinse 2x daily on the ENT's advice, and it does seem to make a big difference.
<br />
<br />As for the school thing, when Piper is going, we get up at 5:30 to get meds done, I don't let her sleep through simply because we do nebs at the same time. It bites getting up that early, but her health is most important, and frankly, she usually goes to bed no later than 8pm to make up for it, which I enjoy..lol.
<br />
<br />The snack thing is harder since I don't know what ingredients are in things like: Instant breakfast, pudding mixes, etc. Sorry I couldn't be more helpful..
<br />
<br />Amanda
<br />Mom to Piper 8yowcf ddf508

 

[Ratatosk]

Also, in terms of the wheezing, when DS had issues with wheezing as a baby, his doctor indicated we needed to be more agressive with CPT, to basically beat that cough, wheeze out of him.

You didn't mention nut allergies -- ds eats a lot of sunflower seeds, peanuts, almonds, peanut butter.

IMO, he needs to be seen by an ear nose and throat specialist. Oh, and DS started doing sinus rinses as well when he was 4 years old.

 

[Ratatosk]

Also, in terms of the wheezing, when DS had issues with wheezing as a baby, his doctor indicated we needed to be more agressive with CPT, to basically beat that cough, wheeze out of him.

You didn't mention nut allergies -- ds eats a lot of sunflower seeds, peanuts, almonds, peanut butter.

IMO, he needs to be seen by an ear nose and throat specialist. Oh, and DS started doing sinus rinses as well when he was 4 years old.

 

[Ratatosk]

Also, in terms of the wheezing, when DS had issues with wheezing as a baby, his doctor indicated we needed to be more agressive with CPT, to basically beat that cough, wheeze out of him.

You didn't mention nut allergies -- ds eats a lot of sunflower seeds, peanuts, almonds, peanut butter.

IMO, he needs to be seen by an ear nose and throat specialist. Oh, and DS started doing sinus rinses as well when he was 4 years old.

 

[Ratatosk]

Also, in terms of the wheezing, when DS had issues with wheezing as a baby, his doctor indicated we needed to be more agressive with CPT, to basically beat that cough, wheeze out of him.

You didn't mention nut allergies -- ds eats a lot of sunflower seeds, peanuts, almonds, peanut butter.

IMO, he needs to be seen by an ear nose and throat specialist. Oh, and DS started doing sinus rinses as well when he was 4 years old.

 

[Ratatosk]

Also, in terms of the wheezing, when DS had issues with wheezing as a baby, his doctor indicated we needed to be more agressive with CPT, to basically beat that cough, wheeze out of him.
<br />
<br />You didn't mention nut allergies -- ds eats a lot of sunflower seeds, peanuts, almonds, peanut butter.
<br />
<br />IMO, he needs to be seen by an ear nose and throat specialist. Oh, and DS started doing sinus rinses as well when he was 4 years old.