Good morning everyone! Quick question. My son, who is not officially diagnosed with CF, but after speaking to the CF doctor twice, believe he at minimum has CRMS, has been sick for weeks! It started with bronchitis, he was put on abx for the bacteria found in my son's culture, finished 14 days of that. Two days later sick again, went to pediatrician who found an ear infection, after a few days on that abx (different one) he was still too sick to go to school, waking up throughout the night nauseous, throwing up mucus, not eating. Went back to CF dr, who in addition to the abx prescribed him prednisone and upped the inhaler to 4x/day. That was Friday. He seemed fine over the weekend, but now is waking up nauseous again, barely eating, and headaches as well. We've tried so many things, not sure what to do next. He's been sleeping with a humidifier, because he's stuffy and it's so dry in our house. But a friend mentioned getting him a vaporizer. I've never used one, and when I tried searching on here, I can't find anything really. Is this something NOT recommended for CF patients? If so, why? Is it because the "vapors" can get in the lungs? I'm desperate to help my son get better! (we're waiting to hear from insurance company for the genetics testing and it's taking FOREVER)
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Vicks-type vaporizer?
- Thread starter slk317
- Start date
LittleLab4CF
Super Moderator
I'm an owner of the Vick's personal steam inhaler, the Sinus-Inhaler. I use it but I am late diagnosed and my lungs have been spared from penetration of CF. My twice a year visit with my CF specialist is a great pulmonologist who humors me when I have something new. He declared that I have the best lungs he's seen, PFT at 118% and I was sick. If your son's lungs are compromised, the best sterile technique and equipment is paramount.
Most kids are"little germ bags". I for certain was one, always fighting a head infection, ear, sinuses and throat infection just took turns. I had chest infections, but it seems that I was never hospitalized except to have my tonsils and adenoids removed. You have to be realistic about how much sterility is required to be safe for all practical purposes. A personal humidifier is going to be full of germs with the first breath into the face cup. The removable parts can be cleaned and sterilized. I would always hand wash and dry the parts after each use and wipe the water resevior with a Clorox wipe and/or white vinegar and sterilize it weekly. You can always sterilize it more frequently but the plastic will degrade faster.
Pediatric CF medicine is wonderful compared to the resources available to adults. Your son may have been told that he can have all the salt he wants and some people eat salt straight. The median lifespan is going up about a year, for every two years in time and it's getting closer to a year for year increase in the expected lifespan. I'm starting to tell the doctors and nurses treating CF that we are now living long enough to develop diseases of excess, like heart disease and too much salt. The electrolyte we're needing is chloride and many other sources of chloride are available without adding sodium, something that we don't have a great need for.
Anyway, the whole thing with devices that we breathe deeply from, is the ability to sterilize any and all parts. The Vick's personal vaporizer is easy to sterilize. The one part that cannot be dishwasher clean, or boiled or autoclaved is the water resevior. I'm looking at the water resevior as something that you can clean with vinegar or bleach, either works fine because the surface of the resevior boils the water.
The personal Steamer sold at Target and such is great, but they are really proud of the glorified coffee steamer, $$$$! but it should be germ free just as the much cheaper Vick's. You get what you pay for but for now I would go with the Vick's. An instant shot of steam with the expensive hand held units are not good for a kid. Nor is a steam burn. The Vick's is larger and has a steady base on it, weight is in the base and the face cup is sized well for kids and adults.
I am saddened by the way his GI problems are presenting. Nausea in my opinion is seriously underestimated, with vomiting it's extra horrid. Nausea, unlike pain is all bad. I'm not saying pain isn't just as bad but shaking off pain is perceived as possible, shaking off nausea is likely to end in something worse. Being born with CF, it's an impossibility to imagine feeling what it would be like to be free of it. We feel like everyone else feels the same, depending on how severe the issues are. This is a strange feeling, I had aching joints and back from constant infection load but the most memorable things were tied to constantly fighting nausea and abdominal pain. Medically treating a child wasn't popular when I was growing up. True to form, most things do resolve.
His status of being considered for both CF and CRMS makes me wonder if they are still waiting to see if his lungs begin to express CF penetration. CF was a disease of the pancreas and GI tract for a long time until the end of the 50's when antibiotics and pulmonary medicine could save those who were born with CF lungs. Since then it's become a pulmonary disease which easily wins the award for lives saved. Ignoring or under treating of the nausea and vomiting, the super high stomach acidity, IBD, IBS, gastritis and GERD, is ignoring a major challenge in the quality of life of CF sufferers.
Good luck,
LL
Most kids are"little germ bags". I for certain was one, always fighting a head infection, ear, sinuses and throat infection just took turns. I had chest infections, but it seems that I was never hospitalized except to have my tonsils and adenoids removed. You have to be realistic about how much sterility is required to be safe for all practical purposes. A personal humidifier is going to be full of germs with the first breath into the face cup. The removable parts can be cleaned and sterilized. I would always hand wash and dry the parts after each use and wipe the water resevior with a Clorox wipe and/or white vinegar and sterilize it weekly. You can always sterilize it more frequently but the plastic will degrade faster.
Pediatric CF medicine is wonderful compared to the resources available to adults. Your son may have been told that he can have all the salt he wants and some people eat salt straight. The median lifespan is going up about a year, for every two years in time and it's getting closer to a year for year increase in the expected lifespan. I'm starting to tell the doctors and nurses treating CF that we are now living long enough to develop diseases of excess, like heart disease and too much salt. The electrolyte we're needing is chloride and many other sources of chloride are available without adding sodium, something that we don't have a great need for.
Anyway, the whole thing with devices that we breathe deeply from, is the ability to sterilize any and all parts. The Vick's personal vaporizer is easy to sterilize. The one part that cannot be dishwasher clean, or boiled or autoclaved is the water resevior. I'm looking at the water resevior as something that you can clean with vinegar or bleach, either works fine because the surface of the resevior boils the water.
The personal Steamer sold at Target and such is great, but they are really proud of the glorified coffee steamer, $$$$! but it should be germ free just as the much cheaper Vick's. You get what you pay for but for now I would go with the Vick's. An instant shot of steam with the expensive hand held units are not good for a kid. Nor is a steam burn. The Vick's is larger and has a steady base on it, weight is in the base and the face cup is sized well for kids and adults.
I am saddened by the way his GI problems are presenting. Nausea in my opinion is seriously underestimated, with vomiting it's extra horrid. Nausea, unlike pain is all bad. I'm not saying pain isn't just as bad but shaking off pain is perceived as possible, shaking off nausea is likely to end in something worse. Being born with CF, it's an impossibility to imagine feeling what it would be like to be free of it. We feel like everyone else feels the same, depending on how severe the issues are. This is a strange feeling, I had aching joints and back from constant infection load but the most memorable things were tied to constantly fighting nausea and abdominal pain. Medically treating a child wasn't popular when I was growing up. True to form, most things do resolve.
His status of being considered for both CF and CRMS makes me wonder if they are still waiting to see if his lungs begin to express CF penetration. CF was a disease of the pancreas and GI tract for a long time until the end of the 50's when antibiotics and pulmonary medicine could save those who were born with CF lungs. Since then it's become a pulmonary disease which easily wins the award for lives saved. Ignoring or under treating of the nausea and vomiting, the super high stomach acidity, IBD, IBS, gastritis and GERD, is ignoring a major challenge in the quality of life of CF sufferers.
Good luck,
LL
Thanks for the info LittleLab! I didn't end up getting a vaporizer, just stuck with what the dr recommended. I originally was thinking my son's issues last week were due to the prednisone he was taking, I know it can have nasty side effects and he had never taken it before. But then his brother and dad both got sick with the same thing, so think it was just a nasty bug. He's better now, thank goodness, and has gone a streak of about 3 good days in a row, the longest in over a month. So that's a bit of good news. It only took 2 rounds of abx, prednisone, doubling his inhaler and sinus rinses to get him better.
As far as what I'm understanding from the CF doctor, this is what I think is going on (and I could be wrong, there's so much to understand with this). Because my son's numbers were not negative, there's gotta be at least one CF gene causing his numbers to be higher. But because all of my son's symptoms are considered "mild", he's thinking it could "just" be CRMS. I use that term very loosely, because the way my son's been feeling the last 3 months, I wouldn't call it "just" anything. It all started with nasal polyps, which are in both sides of his nose, but not throughout his sinuses, thankfully. And the nasacort is shrinking them down, so thankfully he's not currently in need of surgery. IF he has asthma, it's considered mild. The dr said he can't test him until he's feeling well. But because the inhaler has been helping him, the dr said this more than likely means he's got it. His lungs had what they called "mild peribronchial wall thickening". And we thought there was a growth issue so he had a bone age scan done, but it only came up a year behind, also considered "mild". He's not tiny for his age, but still small (24% height, 38% weight). But I'm only 5', and my whole family is short, so not really surprising. And he's not pancreatic insufficient, which honestly surprised me. He's been complaining of a lot of stomach aches lately, so we're assuming that's due to the sinus problems as well. When he says he's throwing up, it's just mucus, no food, so I'm not sure if he's actually "throwing up" or just gagging. He had lost about 3 pounds within a month back this fall, and he's already thin as a rail, but luckily he's put that back on.
So right now the biggest issue is his sinuses, with the next issue being his lungs. He doesn't have a chronic cough, he doesn't have allergies (we checked, twice), he's never had pneumonia, and until the last 3 months, we didn't even think he had asthma. Doctors never hear wheezing, and he's had 5 different doctors look and listen recently.
As far as what I'm understanding from the CF doctor, this is what I think is going on (and I could be wrong, there's so much to understand with this). Because my son's numbers were not negative, there's gotta be at least one CF gene causing his numbers to be higher. But because all of my son's symptoms are considered "mild", he's thinking it could "just" be CRMS. I use that term very loosely, because the way my son's been feeling the last 3 months, I wouldn't call it "just" anything. It all started with nasal polyps, which are in both sides of his nose, but not throughout his sinuses, thankfully. And the nasacort is shrinking them down, so thankfully he's not currently in need of surgery. IF he has asthma, it's considered mild. The dr said he can't test him until he's feeling well. But because the inhaler has been helping him, the dr said this more than likely means he's got it. His lungs had what they called "mild peribronchial wall thickening". And we thought there was a growth issue so he had a bone age scan done, but it only came up a year behind, also considered "mild". He's not tiny for his age, but still small (24% height, 38% weight). But I'm only 5', and my whole family is short, so not really surprising. And he's not pancreatic insufficient, which honestly surprised me. He's been complaining of a lot of stomach aches lately, so we're assuming that's due to the sinus problems as well. When he says he's throwing up, it's just mucus, no food, so I'm not sure if he's actually "throwing up" or just gagging. He had lost about 3 pounds within a month back this fall, and he's already thin as a rail, but luckily he's put that back on.
So right now the biggest issue is his sinuses, with the next issue being his lungs. He doesn't have a chronic cough, he doesn't have allergies (we checked, twice), he's never had pneumonia, and until the last 3 months, we didn't even think he had asthma. Doctors never hear wheezing, and he's had 5 different doctors look and listen recently.