Dear all,<br><br>I am new to this forum. I am the father of a 20 months baby girl with double 508F.<br><br>I have some questions on the use of natural substances and I would like your opinion.<br><br>Orally, I give my kid probiotic, omega 3, curcumin and GSH (theranaturals curc caps) every day. So far so good...<br><br>But... <br>I think that the real help (11 months with no need of antiobiotics) came from nebulization with a mixture of grapefuit seed extract (GSE), Tymo, enula and other herbs. I use a commercial guarenteed product.<br><br>This product was recommended by my doctor. As I said, it worked well so far.<br><br>But...<br>We recently talked to another doctor and he was very worried that the substances from the GSE, Tymo and others could deposit in the lungs. They are free from bacteria but in the long run they could do more harm than good. This is because the cilia of CF lungs do not move well because of the mucus and the lungs could not get rid of them.<br><br>I imagine that this applies to all nebulization with natural substances.<br><br>What is your opinion ?<br>Should I stop the nebs with GSE ?<br> The kid does not seem to have mucus in the lungs (clean at the last scan), but I do not want to take any chance.<br><br>On the other side, I should change the GSE with what ? I have heard discussions on this forum on oregan oil, tea tree oil and others ?<br>Do they have the same problem ?<br><br>Did anybody use them for nebulizer ?<br>many thanks<br><br><br><br>
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Natural substances for Nebulizer
- Thread starter markbrave
- Start date
Dear all,<br><br>I am new to this forum. I am the father of a 20 months baby girl with double 508F.<br><br>I have some questions on the use of natural substances and I would like your opinion.<br><br>Orally, I give my kid probiotic, omega 3, curcumin and GSH (theranaturals curc caps) every day. So far so good...<br><br>But... <br>I think that the real help (11 months with no need of antiobiotics) came from nebulization with a mixture of grapefuit seed extract (GSE), Tymo, enula and other herbs. I use a commercial guarenteed product.<br><br>This product was recommended by my doctor. As I said, it worked well so far.<br><br>But...<br>We recently talked to another doctor and he was very worried that the substances from the GSE, Tymo and others could deposit in the lungs. They are free from bacteria but in the long run they could do more harm than good. This is because the cilia of CF lungs do not move well because of the mucus and the lungs could not get rid of them.<br><br>I imagine that this applies to all nebulization with natural substances.<br><br>What is your opinion ?<br>Should I stop the nebs with GSE ?<br>The kid does not seem to have mucus in the lungs (clean at the last scan), but I do not want to take any chance.<br><br>On the other side, I should change the GSE with what ? I have heard discussions on this forum on oregan oil, tea tree oil and others ?<br>Do they have the same problem ?<br><br>Did anybody use them for nebulizer ?<br>many thanks<br><br><br><br>
Dear all,<br><br>I am new to this forum. I am the father of a 20 months baby girl with double 508F.<br><br>I have some questions on the use of natural substances and I would like your opinion.<br><br>Orally, I give my kid probiotic, omega 3, curcumin and GSH (theranaturals curc caps) every day. So far so good...<br><br>But... <br>I think that the real help (11 months with no need of antiobiotics) came from nebulization with a mixture of grapefuit seed extract (GSE), Tymo, enula and other herbs. I use a commercial guarenteed product.<br><br>This product was recommended by my doctor. As I said, it worked well so far.<br><br>But...<br>We recently talked to another doctor and he was very worried that the substances from the GSE, Tymo and others could deposit in the lungs. They are free from bacteria but in the long run they could do more harm than good. This is because the cilia of CF lungs do not move well because of the mucus and the lungs could not get rid of them.<br><br>I imagine that this applies to all nebulization with natural substances.<br><br>What is your opinion ?<br>Should I stop the nebs with GSE ?<br>The kid does not seem to have mucus in the lungs (clean at the last scan), but I do not want to take any chance.<br><br>On the other side, I should change the GSE with what ? I have heard discussions on this forum on oregan oil, tea tree oil and others ?<br>Do they have the same problem ?<br><br>Did anybody use them for nebulizer ?<br>many thanks<br><br><br><br>
I would never use anything other than FDA-approved substances in the lungs. Not worth the risk. Especially anything with "oil" in the name - makes me think of immediate issues with residue. Not that all FDA-approved products end up being "safe" in the long run, but at least they've been through rigorous testing in meeting approval. OTC/holistic meds have not. No question about it - avoid inhalation (perhaps even oral intake) of such products. Also, there is no guarantee that the holistic meds you are giving your daughter are "free from bacteria" as they are undoubtedly not produced in a laboratory or sterile environment of which the FDA would regulate. There are no regulations on these products thus you may not even be delivering the same dosing with each use. Please be careful - you may actually be introducing bacteria into the lungs in addition to contributing to residue build-up and/or inflammation.
This is not to say that there may or may not be a holistic product that benefits CF patients both now and in the future - but you need to be very cautious....
This is not to say that there may or may not be a holistic product that benefits CF patients both now and in the future - but you need to be very cautious....
I would never use anything other than FDA-approved substances in the lungs. Not worth the risk. Especially anything with "oil" in the name - makes me think of immediate issues with residue. Not that all FDA-approved products end up being "safe" in the long run, but at least they've been through rigorous testing in meeting approval. OTC/holistic meds have not. No question about it - avoid inhalation (perhaps even oral intake) of such products. Also, there is no guarantee that the holistic meds you are giving your daughter are "free from bacteria" as they are undoubtedly not produced in a laboratory or sterile environment of which the FDA would regulate. There are no regulations on these products thus you may not even be delivering the same dosing with each use. Please be careful - you may actually be introducing bacteria into the lungs in addition to contributing to residue build-up and/or inflammation.
This is not to say that there may or may not be a holistic product that benefits CF patients both now and in the future - but you need to be very cautious....
This is not to say that there may or may not be a holistic product that benefits CF patients both now and in the future - but you need to be very cautious....
I would never use anything other than FDA-approved substances in the lungs. Not worth the risk. Especially anything with "oil" in the name - makes me think of immediate issues with residue. Not that all FDA-approved products end up being "safe" in the long run, but at least they've been through rigorous testing in meeting approval. OTC/holistic meds have not. No question about it - avoid inhalation (perhaps even oral intake) of such products. Also, there is no guarantee that the holistic meds you are giving your daughter are "free from bacteria" as they are undoubtedly not produced in a laboratory or sterile environment of which the FDA would regulate. There are no regulations on these products thus you may not even be delivering the same dosing with each use. Please be careful - you may actually be introducing bacteria into the lungs in addition to contributing to residue build-up and/or inflammation.
<br />
<br />This is not to say that there may or may not be a holistic product that benefits CF patients both now and in the future - but you need to be very cautious....
<br />
<br />This is not to say that there may or may not be a holistic product that benefits CF patients both now and in the future - but you need to be very cautious....
I agree with Katie. I am all for natural treatments and i do give my dd a probiotic (my her doctor's approval). But inhaling things is quite different and could be potentially harmful. Also i would be very careful drawing conclusions regarding the efficacy of these treatments, especially in young babies who often have clear lungs with minimal treatments (like CPT etc).
I agree with Katie. I am all for natural treatments and i do give my dd a probiotic (my her doctor's approval). But inhaling things is quite different and could be potentially harmful. Also i would be very careful drawing conclusions regarding the efficacy of these treatments, especially in young babies who often have clear lungs with minimal treatments (like CPT etc).
I agree with Katie. I am all for natural treatments and i do give my dd a probiotic (my her doctor's approval). But inhaling things is quite different and could be potentially harmful. Also i would be very careful drawing conclusions regarding the efficacy of these treatments, especially in young babies who often have clear lungs with minimal treatments (like CPT etc).
I've heard of people having issues with nebbing oil of oregano -- Oil causing a type of pneumonia. Also there was a parent who was having their child neb collodial silver! This pretty much scares the heck out of me, putting something directly in the lungs that may not be safe, hasn't gone thru FDA testing, could be questionable. I'm all for oral supplements, but the risk to the lung -- Nope!
I've heard of people having issues with nebbing oil of oregano -- Oil causing a type of pneumonia. Also there was a parent who was having their child neb collodial silver! This pretty much scares the heck out of me, putting something directly in the lungs that may not be safe, hasn't gone thru FDA testing, could be questionable. I'm all for oral supplements, but the risk to the lung -- Nope!
I've heard of people having issues with nebbing oil of oregano -- Oil causing a type of pneumonia. Also there was a parent who was having their child neb collodial silver! This pretty much scares the heck out of me, putting something directly in the lungs that may not be safe, hasn't gone thru FDA testing, could be questionable. I'm all for oral supplements, but the risk to the lung -- Nope!
Mom2Brinly
New member
I am also into natural healing with my daughter (7 yo w/cf) BUT i would NEVER EVER use an inhaled subject in her lungs at all unless it was FDA approved. I use the GSE in her sinus rinses only. I use tea tree oil for cleaning floors, counter-tops, etc. I think the best approach especially for a 20 month old is good whole foods and good vitamins, minerals, trace minerals and amino acids. I have a salt lamp in her room- and use Himalayan pink salt on her food.
I give my daughter a 100 billion multi strand probiotic daily and when she is on an antibiotic i give her a ABX support probiotic. She also takes a prebiotic along with L-glutamine. This has helped with her digestion. I only have to supplement with miralax as needed now. She has been tested for her vitamin levels and i give her extra vit D, Vit A. Vit E, B2 and COQ10 along with 2 vitamax. I also give her cellfood which has trace minerals and amino acids She also LOVES 2-5 tsp of Barleans berry flax oil for omega 3,6,9. I also give her MCT oil in her food to help with her weight. {I know it is a fulltime job supplementing...heehee}
She also has wheat, peanut and corn food sensitivities so we have eliminated these to help her immune system.
I just started all of these last year via her pediatrition and we still ended up in the hospital with bronchiectasis and iv antibiotics 3 times this year. Maybe by starting earlier you will have a head start! <img src="i/expressions/face-icon-small-smile.gif" border="0"> but from what i am sinking in...the symptoms of cf is inevitable.
Best of Luck to you~
Blythe
mom of 3 one with cf
I give my daughter a 100 billion multi strand probiotic daily and when she is on an antibiotic i give her a ABX support probiotic. She also takes a prebiotic along with L-glutamine. This has helped with her digestion. I only have to supplement with miralax as needed now. She has been tested for her vitamin levels and i give her extra vit D, Vit A. Vit E, B2 and COQ10 along with 2 vitamax. I also give her cellfood which has trace minerals and amino acids She also LOVES 2-5 tsp of Barleans berry flax oil for omega 3,6,9. I also give her MCT oil in her food to help with her weight. {I know it is a fulltime job supplementing...heehee}
She also has wheat, peanut and corn food sensitivities so we have eliminated these to help her immune system.
I just started all of these last year via her pediatrition and we still ended up in the hospital with bronchiectasis and iv antibiotics 3 times this year. Maybe by starting earlier you will have a head start! <img src="i/expressions/face-icon-small-smile.gif" border="0"> but from what i am sinking in...the symptoms of cf is inevitable.
Best of Luck to you~
Blythe
mom of 3 one with cf
Mom2Brinly
New member
I am also into natural healing with my daughter (7 yo w/cf) BUT i would NEVER EVER use an inhaled subject in her lungs at all unless it was FDA approved. I use the GSE in her sinus rinses only. I use tea tree oil for cleaning floors, counter-tops, etc. I think the best approach especially for a 20 month old is good whole foods and good vitamins, minerals, trace minerals and amino acids. I have a salt lamp in her room- and use Himalayan pink salt on her food.
I give my daughter a 100 billion multi strand probiotic daily and when she is on an antibiotic i give her a ABX support probiotic. She also takes a prebiotic along with L-glutamine. This has helped with her digestion. I only have to supplement with miralax as needed now. She has been tested for her vitamin levels and i give her extra vit D, Vit A. Vit E, B2 and COQ10 along with 2 vitamax. I also give her cellfood which has trace minerals and amino acids She also LOVES 2-5 tsp of Barleans berry flax oil for omega 3,6,9. I also give her MCT oil in her food to help with her weight. {I know it is a fulltime job supplementing...heehee}
She also has wheat, peanut and corn food sensitivities so we have eliminated these to help her immune system.
I just started all of these last year via her pediatrition and we still ended up in the hospital with bronchiectasis and iv antibiotics 3 times this year. Maybe by starting earlier you will have a head start! <img src="i/expressions/face-icon-small-smile.gif" border="0"> but from what i am sinking in...the symptoms of cf is inevitable.
Best of Luck to you~
Blythe
mom of 3 one with cf
I give my daughter a 100 billion multi strand probiotic daily and when she is on an antibiotic i give her a ABX support probiotic. She also takes a prebiotic along with L-glutamine. This has helped with her digestion. I only have to supplement with miralax as needed now. She has been tested for her vitamin levels and i give her extra vit D, Vit A. Vit E, B2 and COQ10 along with 2 vitamax. I also give her cellfood which has trace minerals and amino acids She also LOVES 2-5 tsp of Barleans berry flax oil for omega 3,6,9. I also give her MCT oil in her food to help with her weight. {I know it is a fulltime job supplementing...heehee}
She also has wheat, peanut and corn food sensitivities so we have eliminated these to help her immune system.
I just started all of these last year via her pediatrition and we still ended up in the hospital with bronchiectasis and iv antibiotics 3 times this year. Maybe by starting earlier you will have a head start! <img src="i/expressions/face-icon-small-smile.gif" border="0"> but from what i am sinking in...the symptoms of cf is inevitable.
Best of Luck to you~
Blythe
mom of 3 one with cf
Mom2Brinly
New member
I am also into natural healing with my daughter (7 yo w/cf) BUT i would NEVER EVER use an inhaled subject in her lungs at all unless it was FDA approved. I use the GSE in her sinus rinses only. I use tea tree oil for cleaning floors, counter-tops, etc. I think the best approach especially for a 20 month old is good whole foods and good vitamins, minerals, trace minerals and amino acids. I have a salt lamp in her room- and use Himalayan pink salt on her food.
<br />I give my daughter a 100 billion multi strand probiotic daily and when she is on an antibiotic i give her a ABX support probiotic. She also takes a prebiotic along with L-glutamine. This has helped with her digestion. I only have to supplement with miralax as needed now. She has been tested for her vitamin levels and i give her extra vit D, Vit A. Vit E, B2 and COQ10 along with 2 vitamax. I also give her cellfood which has trace minerals and amino acids She also LOVES 2-5 tsp of Barleans berry flax oil for omega 3,6,9. I also give her MCT oil in her food to help with her weight. {I know it is a fulltime job supplementing...heehee}
<br />She also has wheat, peanut and corn food sensitivities so we have eliminated these to help her immune system.
<br />I just started all of these last year via her pediatrition and we still ended up in the hospital with bronchiectasis and iv antibiotics 3 times this year. Maybe by starting earlier you will have a head start! <img src="i/expressions/face-icon-small-smile.gif" border="0"> but from what i am sinking in...the symptoms of cf is inevitable.
<br />Best of Luck to you~
<br />Blythe
<br />mom of 3 one with cf
<br />I give my daughter a 100 billion multi strand probiotic daily and when she is on an antibiotic i give her a ABX support probiotic. She also takes a prebiotic along with L-glutamine. This has helped with her digestion. I only have to supplement with miralax as needed now. She has been tested for her vitamin levels and i give her extra vit D, Vit A. Vit E, B2 and COQ10 along with 2 vitamax. I also give her cellfood which has trace minerals and amino acids She also LOVES 2-5 tsp of Barleans berry flax oil for omega 3,6,9. I also give her MCT oil in her food to help with her weight. {I know it is a fulltime job supplementing...heehee}
<br />She also has wheat, peanut and corn food sensitivities so we have eliminated these to help her immune system.
<br />I just started all of these last year via her pediatrition and we still ended up in the hospital with bronchiectasis and iv antibiotics 3 times this year. Maybe by starting earlier you will have a head start! <img src="i/expressions/face-icon-small-smile.gif" border="0"> but from what i am sinking in...the symptoms of cf is inevitable.
<br />Best of Luck to you~
<br />Blythe
<br />mom of 3 one with cf