Growth Issues

[lindaso]

Hi, I was wondering if anyone out there is experiencing growth problemsin your kids with CF. No other pulmonary issues. Both my kids have very rare strands (D1152H and R117H-7T). They do not have any other classic CF symptoms other than poor growth. Both children have fallen off the growth chart in weight (about the negative 25 percentile) and are in the 10% percentile for height. My 3 1/2 year has never been interested in food and we have to work to get him to eat anything. The younger child is very interested, eats very well, but is exactly where her brother is size wise. We tried tons of intervention with my son: Periactin, benecalorie, duocal, nutren Jr., pediasure and neosure, all to no avail. The only other symptom I notice with them is constipation. None of the specialist can figure out why my children are so small and keep coming back to the CF mutation.

Also, does anyone have any suggestions as to whom is an expert in the field of CF and who I might contact regarding additional information?

 

[lindaso]

Hi, I was wondering if anyone out there is experiencing growth problemsin your kids with CF. No other pulmonary issues. Both my kids have very rare strands (D1152H and R117H-7T). They do not have any other classic CF symptoms other than poor growth. Both children have fallen off the growth chart in weight (about the negative 25 percentile) and are in the 10% percentile for height. My 3 1/2 year has never been interested in food and we have to work to get him to eat anything. The younger child is very interested, eats very well, but is exactly where her brother is size wise. We tried tons of intervention with my son: Periactin, benecalorie, duocal, nutren Jr., pediasure and neosure, all to no avail. The only other symptom I notice with them is constipation. None of the specialist can figure out why my children are so small and keep coming back to the CF mutation.

Also, does anyone have any suggestions as to whom is an expert in the field of CF and who I might contact regarding additional information?

 

[lindaso]

Hi, I was wondering if anyone out there is experiencing growth problemsin your kids with CF. No other pulmonary issues. Both my kids have very rare strands (D1152H and R117H-7T). They do not have any other classic CF symptoms other than poor growth. Both children have fallen off the growth chart in weight (about the negative 25 percentile) and are in the 10% percentile for height. My 3 1/2 year has never been interested in food and we have to work to get him to eat anything. The younger child is very interested, eats very well, but is exactly where her brother is size wise. We tried tons of intervention with my son: Periactin, benecalorie, duocal, nutren Jr., pediasure and neosure, all to no avail. The only other symptom I notice with them is constipation. None of the specialist can figure out why my children are so small and keep coming back to the CF mutation.

Also, does anyone have any suggestions as to whom is an expert in the field of CF and who I might contact regarding additional information?

 

[Wendy]

Hi Linda,

Sorry you haven't had a reply yet.

What kind of doctor or specialist are your kids seeing now?

On the main page of this web site there is a link that says "centers". It lists all the CF centers with doctors (peds and adult) that treat CF patients. This should help you find a good CF doctor that can get your kids on meds, if needed, to help them gain weight.

Also, I'm not sure how much you know about CF, but poor weight gain and failure to grow are common symptoms and problems in CF patients (weather there are pulmonary issues or not). Enzymes, which are meds that help cfers break down and digest food can help greatly improve the absorption of the foods they eat. I was diagnosed with CF at nine months old and my Mom says that after I started taking enzymes (in powder form) I was a completely different child. I went from scrawny, thin and weak to a happy, chunky, energetic baby and unstoppable toddler, who grew!

It sounds like your child who does eat alot may benefit from these enzymes. And maybe the other one, too, when he does eat! (By the way, toddlers are picky eaters when they want to be - my 4 year old is the same way).

Another indication is what kind of bowel movements they are having. Most cfers who benefit from enzymes have bulky, fatty stools (often with visible grease in them) and/or loose stools depending on the foods they have eaten. This occurs because the fat and other nutrients that most peoples' digestive systems absorb goes right through CF patients, and all that good stuff comes out in the bowel movement. I hope this isn't too much info for you, just trying to shed a little light on the subject.

I hope you find a CF doctor close to you as I think this will help you get a better handle on the kids' health. Also, you might post a question to see where other cfers in your area go to get good treatment with doctors they like. Good luck and I hope I've helped.

 

[Wendy]

Hi Linda,

Sorry you haven't had a reply yet.

What kind of doctor or specialist are your kids seeing now?

On the main page of this web site there is a link that says "centers". It lists all the CF centers with doctors (peds and adult) that treat CF patients. This should help you find a good CF doctor that can get your kids on meds, if needed, to help them gain weight.

Also, I'm not sure how much you know about CF, but poor weight gain and failure to grow are common symptoms and problems in CF patients (weather there are pulmonary issues or not). Enzymes, which are meds that help cfers break down and digest food can help greatly improve the absorption of the foods they eat. I was diagnosed with CF at nine months old and my Mom says that after I started taking enzymes (in powder form) I was a completely different child. I went from scrawny, thin and weak to a happy, chunky, energetic baby and unstoppable toddler, who grew!

It sounds like your child who does eat alot may benefit from these enzymes. And maybe the other one, too, when he does eat! (By the way, toddlers are picky eaters when they want to be - my 4 year old is the same way).

Another indication is what kind of bowel movements they are having. Most cfers who benefit from enzymes have bulky, fatty stools (often with visible grease in them) and/or loose stools depending on the foods they have eaten. This occurs because the fat and other nutrients that most peoples' digestive systems absorb goes right through CF patients, and all that good stuff comes out in the bowel movement. I hope this isn't too much info for you, just trying to shed a little light on the subject.

I hope you find a CF doctor close to you as I think this will help you get a better handle on the kids' health. Also, you might post a question to see where other cfers in your area go to get good treatment with doctors they like. Good luck and I hope I've helped.

 

[Wendy]

Hi Linda,

Sorry you haven't had a reply yet.

What kind of doctor or specialist are your kids seeing now?

On the main page of this web site there is a link that says "centers". It lists all the CF centers with doctors (peds and adult) that treat CF patients. This should help you find a good CF doctor that can get your kids on meds, if needed, to help them gain weight.

Also, I'm not sure how much you know about CF, but poor weight gain and failure to grow are common symptoms and problems in CF patients (weather there are pulmonary issues or not). Enzymes, which are meds that help cfers break down and digest food can help greatly improve the absorption of the foods they eat. I was diagnosed with CF at nine months old and my Mom says that after I started taking enzymes (in powder form) I was a completely different child. I went from scrawny, thin and weak to a happy, chunky, energetic baby and unstoppable toddler, who grew!

It sounds like your child who does eat alot may benefit from these enzymes. And maybe the other one, too, when he does eat! (By the way, toddlers are picky eaters when they want to be - my 4 year old is the same way).

Another indication is what kind of bowel movements they are having. Most cfers who benefit from enzymes have bulky, fatty stools (often with visible grease in them) and/or loose stools depending on the foods they have eaten. This occurs because the fat and other nutrients that most peoples' digestive systems absorb goes right through CF patients, and all that good stuff comes out in the bowel movement. I hope this isn't too much info for you, just trying to shed a little light on the subject.

I hope you find a CF doctor close to you as I think this will help you get a better handle on the kids' health. Also, you might post a question to see where other cfers in your area go to get good treatment with doctors they like. Good luck and I hope I've helped.

 

[Mommafirst]

Linda, you might want to try posting this in the families section. Anyway, my daughter is just a year and is having major growth/weight issues. She has dropped from a healthy 50th percentile at her 5 month diagnosis to 5% now. She has one very rare mutation and is pancreatic sufficient. We are just now starting on pediasure and enzymes to see if it helps the weight.

I wish I had more information for you. We are just beginning this road, and its a little sad for me to hear that your doctor hasn't figured it out for you yet! I hope you get some good help. If you aren't being seen by an accredited CF center (thats how I read your post), I'd suggest trying there.

Best of luck,
Heather

 

[Mommafirst]

Linda, you might want to try posting this in the families section. Anyway, my daughter is just a year and is having major growth/weight issues. She has dropped from a healthy 50th percentile at her 5 month diagnosis to 5% now. She has one very rare mutation and is pancreatic sufficient. We are just now starting on pediasure and enzymes to see if it helps the weight.

I wish I had more information for you. We are just beginning this road, and its a little sad for me to hear that your doctor hasn't figured it out for you yet! I hope you get some good help. If you aren't being seen by an accredited CF center (thats how I read your post), I'd suggest trying there.

Best of luck,
Heather

 

[Mommafirst]

Linda, you might want to try posting this in the families section. Anyway, my daughter is just a year and is having major growth/weight issues. She has dropped from a healthy 50th percentile at her 5 month diagnosis to 5% now. She has one very rare mutation and is pancreatic sufficient. We are just now starting on pediasure and enzymes to see if it helps the weight.

I wish I had more information for you. We are just beginning this road, and its a little sad for me to hear that your doctor hasn't figured it out for you yet! I hope you get some good help. If you aren't being seen by an accredited CF center (thats how I read your post), I'd suggest trying there.

Best of luck,
Heather

 

[JRPandTJP]

If I could suggest a few things it would be to first work on inflammation. CF people have a tendency towards inflammation due to many factors (skewed fatty acid profile, tendency toward acidity, ect). When inflammation is constant in the gut, you can see issues like constipation (not enough movement in gut to move food through) or too much movement/spasasms causing nutrients to pass through too quickly. In addition, the lining or barrier in the gut can be too thin or non-existent setting up an environment for yeast overgrowth or a "leaky gut" type of situation. Often if one major system (such as the digestive tract) becomes chronically inflammed, other systems will follow especially the lungs and sinuses as they are connected.

We feel by helping our son keep inflammation at bay, he absorbs nutrients better and has less lung issues. I feel it is something that is not addressed in traditional approaches and that until it is under control, you can give all the calories you wish but the gut just isn't equipped to handle them or utilize the nutrients properly. I am not an expert on mutations or their role, but I can share what we have done and discovered along the way.

Here is what we do:

Probiotic: Since before diagnosis we gave a probiotic (acidophilus) to help maintain balance of bacteria levels in the gut. We view this as preventative and he gets it everyday.

DHA: There is much research out today about how we all do not eat enough omega 3 rich foods in our diet. We use omega 3 rich oils in cooking (olive, walnut, canola, flax) and supplement with about 250 mg of Nordic Naturals DHA Strawberry flavor into applesauce or something else they like. We try to add ground flax seeds to smoothies, offer nuts with omega 3, and buy the eggs which are rich in omega 3.

GSH: Some people have seen tremendous results by adding oral GSH to their diet. CF people have an issue with releasing GSH out of the cells and adding a supplement can be helpful. We use 200 mg of GSH from TheraNaturals...there are other brands but I'm not sure what they are.

Tumeric: This spice has been well documented at helping reduce inflammation and is particularly helpful in CF. We just started this 2 weeks ago and are reducing enzymes this week since his stools have changed so much. I will be adding our research to the site below in the next few weeks.

Eating well: Makes sense, but loading the diet with poor quality fats and calories (too much dairy, animal fats without adequate complex carbs and fiber). The supplemental drinks which are recommended to CFers are loaded with corn syrup (very irritating to the gut) and sugar, not to mention artificial flavors. These things are not good for anyone not to mention someone who has digestive issues. These are not "good" calories and it may upset the system more than help in weight gain.

Making "power smoothies" is an alternative way to go. We do this and I've spoken to a mom who whose son has a GTube. He could not tolerate the commercial products (they discovered he had food allergies to corn syrup, wheat, dairy and other things). She began blending her own concoction of fresh fruits, veggies, healthy protein, and complex carbs) to put through the tube feeds and it has made a huge difference (started having an appetite again). VitaMix mixers is a great company for a super charged blender...they have a medical need program which offers significant discounts to people like us. Here is a link <a target=_blank class=ftalternatingbarlinklarge href="http://www.cfnutrition4life.com/cfnu/weblinks.php?cat_id=9">http://www.cfnutrition4life.co.../weblinks.php?cat_id=9</a> and a name of someone to call. I have some receipes on the site below but you can really have fun with it and include your kids in on what flavors to add (blueberries, tropical, strawberry and so on).

These changes are simple to try and can offer tremendous changes. It is basically an anti-inflammatory diet with extra calories coming more supportive foods.

Don't loose hope. Add just the probiotic and DHA first and observe them. Then try the GSH and observe some more. While you do this for a couple months...add more omega 3 to your cooking, try power smoothies here and there, try high protein pasta like Papadinini (lentil flour has a much protein as a steak), just keep it fun and see what happens.

Best wishes to better health,

 

[JRPandTJP]

If I could suggest a few things it would be to first work on inflammation. CF people have a tendency towards inflammation due to many factors (skewed fatty acid profile, tendency toward acidity, ect). When inflammation is constant in the gut, you can see issues like constipation (not enough movement in gut to move food through) or too much movement/spasasms causing nutrients to pass through too quickly. In addition, the lining or barrier in the gut can be too thin or non-existent setting up an environment for yeast overgrowth or a "leaky gut" type of situation. Often if one major system (such as the digestive tract) becomes chronically inflammed, other systems will follow especially the lungs and sinuses as they are connected.

We feel by helping our son keep inflammation at bay, he absorbs nutrients better and has less lung issues. I feel it is something that is not addressed in traditional approaches and that until it is under control, you can give all the calories you wish but the gut just isn't equipped to handle them or utilize the nutrients properly. I am not an expert on mutations or their role, but I can share what we have done and discovered along the way.

Here is what we do:

Probiotic: Since before diagnosis we gave a probiotic (acidophilus) to help maintain balance of bacteria levels in the gut. We view this as preventative and he gets it everyday.

DHA: There is much research out today about how we all do not eat enough omega 3 rich foods in our diet. We use omega 3 rich oils in cooking (olive, walnut, canola, flax) and supplement with about 250 mg of Nordic Naturals DHA Strawberry flavor into applesauce or something else they like. We try to add ground flax seeds to smoothies, offer nuts with omega 3, and buy the eggs which are rich in omega 3.

GSH: Some people have seen tremendous results by adding oral GSH to their diet. CF people have an issue with releasing GSH out of the cells and adding a supplement can be helpful. We use 200 mg of GSH from TheraNaturals...there are other brands but I'm not sure what they are.

Tumeric: This spice has been well documented at helping reduce inflammation and is particularly helpful in CF. We just started this 2 weeks ago and are reducing enzymes this week since his stools have changed so much. I will be adding our research to the site below in the next few weeks.

Eating well: Makes sense, but loading the diet with poor quality fats and calories (too much dairy, animal fats without adequate complex carbs and fiber). The supplemental drinks which are recommended to CFers are loaded with corn syrup (very irritating to the gut) and sugar, not to mention artificial flavors. These things are not good for anyone not to mention someone who has digestive issues. These are not "good" calories and it may upset the system more than help in weight gain.

Making "power smoothies" is an alternative way to go. We do this and I've spoken to a mom who whose son has a GTube. He could not tolerate the commercial products (they discovered he had food allergies to corn syrup, wheat, dairy and other things). She began blending her own concoction of fresh fruits, veggies, healthy protein, and complex carbs) to put through the tube feeds and it has made a huge difference (started having an appetite again). VitaMix mixers is a great company for a super charged blender...they have a medical need program which offers significant discounts to people like us. Here is a link <a target=_blank class=ftalternatingbarlinklarge href="http://www.cfnutrition4life.com/cfnu/weblinks.php?cat_id=9">http://www.cfnutrition4life.co.../weblinks.php?cat_id=9</a> and a name of someone to call. I have some receipes on the site below but you can really have fun with it and include your kids in on what flavors to add (blueberries, tropical, strawberry and so on).

These changes are simple to try and can offer tremendous changes. It is basically an anti-inflammatory diet with extra calories coming more supportive foods.

Don't loose hope. Add just the probiotic and DHA first and observe them. Then try the GSH and observe some more. While you do this for a couple months...add more omega 3 to your cooking, try power smoothies here and there, try high protein pasta like Papadinini (lentil flour has a much protein as a steak), just keep it fun and see what happens.

Best wishes to better health,

 

[JRPandTJP]

If I could suggest a few things it would be to first work on inflammation. CF people have a tendency towards inflammation due to many factors (skewed fatty acid profile, tendency toward acidity, ect). When inflammation is constant in the gut, you can see issues like constipation (not enough movement in gut to move food through) or too much movement/spasasms causing nutrients to pass through too quickly. In addition, the lining or barrier in the gut can be too thin or non-existent setting up an environment for yeast overgrowth or a "leaky gut" type of situation. Often if one major system (such as the digestive tract) becomes chronically inflammed, other systems will follow especially the lungs and sinuses as they are connected.

We feel by helping our son keep inflammation at bay, he absorbs nutrients better and has less lung issues. I feel it is something that is not addressed in traditional approaches and that until it is under control, you can give all the calories you wish but the gut just isn't equipped to handle them or utilize the nutrients properly. I am not an expert on mutations or their role, but I can share what we have done and discovered along the way.

Here is what we do:

Probiotic: Since before diagnosis we gave a probiotic (acidophilus) to help maintain balance of bacteria levels in the gut. We view this as preventative and he gets it everyday.

DHA: There is much research out today about how we all do not eat enough omega 3 rich foods in our diet. We use omega 3 rich oils in cooking (olive, walnut, canola, flax) and supplement with about 250 mg of Nordic Naturals DHA Strawberry flavor into applesauce or something else they like. We try to add ground flax seeds to smoothies, offer nuts with omega 3, and buy the eggs which are rich in omega 3.

GSH: Some people have seen tremendous results by adding oral GSH to their diet. CF people have an issue with releasing GSH out of the cells and adding a supplement can be helpful. We use 200 mg of GSH from TheraNaturals...there are other brands but I'm not sure what they are.

Tumeric: This spice has been well documented at helping reduce inflammation and is particularly helpful in CF. We just started this 2 weeks ago and are reducing enzymes this week since his stools have changed so much. I will be adding our research to the site below in the next few weeks.

Eating well: Makes sense, but loading the diet with poor quality fats and calories (too much dairy, animal fats without adequate complex carbs and fiber). The supplemental drinks which are recommended to CFers are loaded with corn syrup (very irritating to the gut) and sugar, not to mention artificial flavors. These things are not good for anyone not to mention someone who has digestive issues. These are not "good" calories and it may upset the system more than help in weight gain.

Making "power smoothies" is an alternative way to go. We do this and I've spoken to a mom who whose son has a GTube. He could not tolerate the commercial products (they discovered he had food allergies to corn syrup, wheat, dairy and other things). She began blending her own concoction of fresh fruits, veggies, healthy protein, and complex carbs) to put through the tube feeds and it has made a huge difference (started having an appetite again). VitaMix mixers is a great company for a super charged blender...they have a medical need program which offers significant discounts to people like us. Here is a link <a target=_blank class=ftalternatingbarlinklarge href="http://www.cfnutrition4life.com/cfnu/weblinks.php?cat_id=9">http://www.cfnutrition4life.co.../weblinks.php?cat_id=9</a> and a name of someone to call. I have some receipes on the site below but you can really have fun with it and include your kids in on what flavors to add (blueberries, tropical, strawberry and so on).

These changes are simple to try and can offer tremendous changes. It is basically an anti-inflammatory diet with extra calories coming more supportive foods.

Don't loose hope. Add just the probiotic and DHA first and observe them. Then try the GSH and observe some more. While you do this for a couple months...add more omega 3 to your cooking, try power smoothies here and there, try high protein pasta like Papadinini (lentil flour has a much protein as a steak), just keep it fun and see what happens.

Best wishes to better health,

 

[lindaso]

Thanks to everyone who replied.
We live in San Diego and have seen the CF specialist at Children's Hospital and Balboa Naval Medical Center (Kaiser contracts with each of these doctors) one time. My son was tested and was found to be pancreatic sufficient so enzymes were not suggested. Up until this point, I believe the doctors felt that his interuterine growth restriction was a major part of his failure to experience catch up growth. His growth stopped at around 27 weeks in utero. He was born at 30 weeks and weighed 2.1. My daughter started to also have growth problems in utero at around 27 week. However, they knew what to expect and with bed rest and lots of check up's-she made it to 36 weeks and weighed 4.14. Given that she was double my son at birth, we expected her to be bigger at this point but for 2 1/2 months she hasn't gained any weight. Their growth at this point is practically identical. My husband is 6.2, my father is 6.2 and I'm 5.4. We have no family history of any growth problems. We've met with the gastronitologist, geneticist, nutrionists, neonatal pediatrict specialist, and endrocrinologists. The geneticist feels it must be tied to the CF gene because that appears to be the only commonality but these strands are so rare, no one knows much about them. Does anyone have any suggestions for specialists that might be knowledgeable about rare strands? They do not have to be local and we can do a phone consultation, email, fax, etc.

 

[lindaso]

Thanks to everyone who replied.
We live in San Diego and have seen the CF specialist at Children's Hospital and Balboa Naval Medical Center (Kaiser contracts with each of these doctors) one time. My son was tested and was found to be pancreatic sufficient so enzymes were not suggested. Up until this point, I believe the doctors felt that his interuterine growth restriction was a major part of his failure to experience catch up growth. His growth stopped at around 27 weeks in utero. He was born at 30 weeks and weighed 2.1. My daughter started to also have growth problems in utero at around 27 week. However, they knew what to expect and with bed rest and lots of check up's-she made it to 36 weeks and weighed 4.14. Given that she was double my son at birth, we expected her to be bigger at this point but for 2 1/2 months she hasn't gained any weight. Their growth at this point is practically identical. My husband is 6.2, my father is 6.2 and I'm 5.4. We have no family history of any growth problems. We've met with the gastronitologist, geneticist, nutrionists, neonatal pediatrict specialist, and endrocrinologists. The geneticist feels it must be tied to the CF gene because that appears to be the only commonality but these strands are so rare, no one knows much about them. Does anyone have any suggestions for specialists that might be knowledgeable about rare strands? They do not have to be local and we can do a phone consultation, email, fax, etc.

 

[lindaso]

Thanks to everyone who replied.
We live in San Diego and have seen the CF specialist at Children's Hospital and Balboa Naval Medical Center (Kaiser contracts with each of these doctors) one time. My son was tested and was found to be pancreatic sufficient so enzymes were not suggested. Up until this point, I believe the doctors felt that his interuterine growth restriction was a major part of his failure to experience catch up growth. His growth stopped at around 27 weeks in utero. He was born at 30 weeks and weighed 2.1. My daughter started to also have growth problems in utero at around 27 week. However, they knew what to expect and with bed rest and lots of check up's-she made it to 36 weeks and weighed 4.14. Given that she was double my son at birth, we expected her to be bigger at this point but for 2 1/2 months she hasn't gained any weight. Their growth at this point is practically identical. My husband is 6.2, my father is 6.2 and I'm 5.4. We have no family history of any growth problems. We've met with the gastronitologist, geneticist, nutrionists, neonatal pediatrict specialist, and endrocrinologists. The geneticist feels it must be tied to the CF gene because that appears to be the only commonality but these strands are so rare, no one knows much about them. Does anyone have any suggestions for specialists that might be knowledgeable about rare strands? They do not have to be local and we can do a phone consultation, email, fax, etc.