A sick plan that works

[rosesixtyfive]

Hi, we are on day 4 of a cold and I am trying to help Sam clear it as quickly as possible. Our CF clinic does not really have what I have heard some parents call a "sick plan" so I am trying to make one on my own. Here is what I have been doing since Monday - I have increased the vest from 2 X a day to 3 or 4 X a day. I have increased the sinus rinse from 2 X a day to 3 X a day, and we are using the squeeze bottle. We are having Sam drink lots of fluids. We are taking Mucinex - 1 teaspoon 2 X a day. The Mucinex was the recommendation of my clinic and said they would prescribe antibiotics or have him come in if he doesn't improve in the next few days. What I'm wondering is, maybe antibiotics should just be an automatic part of the sick plan from day one of the manifestation of cold or respiratory symptoms? We are fighting this so hard, and I thought he was better yesterday, but he woke up coughing pretty good this morning. I was impressed by Ratatosk's treatment plan that just keeps Max on antibiotics permanently. Can you suggest anything to add to our sick plan? I really want it to be effective because school is starting and I have to be ready to attack those ugly colds and flus. Does anyone automatically start antibiotics at the sign of a cold or respiratory infection? OR how long do you let a cough go on before your doctor prescribes antibiotics? Thanks. I don't know how I would navigate this without the help of all of you. rosesixtyfive, mother of Sam, ddf508

 

[Aboveallislove]

Are you doing the bronchialdialotor 4x a day. That is standard at our cf center.

 

[rosesixtyfive]

Yes, every time he gets a treatment we give 2 puffs, 6 breathes of albuterol to open airways.

 

[Ratatosk]

I will say that DS' doctor is probably more proactive and not the norm for most CF doctors. His background is infectious disease as well, so he knows his bugs, knows his drugs. I wonder if a nebulizer rather than an inhaler might be something to try. Realize it's quicker and in most cases works just as well, but what about nebbing albuterol? DS nebs two different bronchodilators at the same time --- brand name is duoneb, but it's atrovent and albuterol combined. One's longer acting one's shorter acting. Do you neb anything at all? DS also nebs pulmozyme once a day to thin the mucus. And I know others use hypertonic saline....

 

[Aboveallislove]

I was thinking same thing re the nevulizer as oppose to puff. Supposedly they work as well, but our cf dr said patients say neb feels better especially when sick. And you can use same cup right after for hyper dal which I think you said in another post you were doing.

 

[rosesixtyfive]

We neb hypertonic saline 7% 2X a day, and pulmozyme 1 X Day, but we have never nebbed albuterol. I have been curious about why some people nebulize the albuterol while we just do a buffer.

 

[JENNYC]

Wanted to throw this out there as well. Sinus rinses are the best!! I can't do without them while Abby is sick. But one of the last times she was ill I started doing them 3 times a day because the poor baby needed so bad. Each time I got a lot out however it dried her sinus' out so bad that they started giving her nose bleeds. I called her ENT to weigh the benefit and she told me to only do them twice a day if it was giving her nose bleeds. Just wanted you to know in case you have this problem.

Also Abby use to neb Albuteral and it made her extremely jittery. To the point that she fought me doing it because of that. Not saying it isn't a good idea...that might work better for you. Just know that it can make him very very jittery and you too if you hold him while he is nebbing.

Good luck!! I hope he feels better soon

 

[Aboveallislove]

Xopenex is now generic and doesn't have the jittery side effects, which is why we had ds on it since newborn.

 

[2roses]

Please consider doing the Albuterol or Xopenex via nebulizer (my DD uses the Xop bc she is jittery on Albuterol). The nebs work so much better than inhalers for my two DDs. When they are sick it can be hard to take the full breaths needed w/a puffer w/out coughing. Nebs have been our standard since the beginning. Colds and flus are viral so you can't get rid of them with antibiotics, but you can fend off secondary infections that are easy to develop in CF w/antibiotics. I agree to ask your CF specialist about that. Good instincts!

 

[Justinsmama]

We do xopenex by neb twice a day (more if he is exercising) even without a cold. For Justin, because he has a significant bronchiospam component, we do 14 days antibiotic and 10 steriod every time he gets sick because his 25/75 drops drastically with a cold. Luckily for us, our ped is the local asthma specialist and worked for years in the CF clinic. He also has PFT machine. I agree that he gets a better treatment with neb for xopenex. We use inhaler only for rescue when we are not home.

 

[welshwitch]

Just wanted to add that upping my pulmozyme usage to 2 or 3 times per day when I'm sick really knocks out any lung gunk and reduces the life of the cold. Hope Sam feels better!

 

[TreasureGoddess]

I'd be a bit leery of starting antibiotics with each sinus infection or cold. We did that with our previous CF center and by the age of 10 my son's body was immune to almost all pill versions of antibiotics. When needed, absolutely add them into the plan. Just try your best to try to break through with the combo of more vest treatments, more nebbed & inhaler meds. Also you could ask your dr about 2X/day on the pulmozyme during flare-ups. One other REALLY helpful tip for us was combining the vest AND acapella (hand held plastic device also called flutter) as chest therapy. This really seemed to help break up crud in his chest. All other tips look great! Especially increasing fluids.

 

[MotherofCFBoy11yrs]

I think the best course of action is to get a sample to the lab as soon as possible and treat the infection according to the findings, or then be on continuous prophylaxis, for example in the UK most people with CF are on prophylaxis against staph, my son against PA.At the Copenhagen CF center, where we've visited several times, they are now taking samples of the sinuses in addition to sputum and treating the sinus infections:http://www.rigshospitalet.dk/NR/rdo...073-BBE3-E8ECB05B3205/0/Kasper_Aanaes_phd.pdf (this is a PhD thesis + relevant studies so it's long!)As far as I know, resistance to antibiotics usually happens when antibiotics are started too late (so that the bacteria have formed biofilms) or given for too short a time or too little (so that some of the bacteria remain and start to mutate) or if the bacteria are not sensitive to the antibiotic being used.In Denmark they also always use two antibiotics at the same time to minimize resistance and increase efficacy, here is an article of how they treat staph: http://www.cysticfibrosisjournal.com/article/S1569-1993(12)00125-7/fulltext

 

[MotherofCFBoy11yrs]

Posting the same again, this time hopefully with paragraph breaksI think the best course of action is to get a sample to the lab as soon as possible and treat the infection according to the findings, or then be on continuous prophylaxis, for example in the UK most people with CF are on prophylaxis against staph, my son against PA. At the Copenhagen CF center, where we've visited several times, they are now taking samples of the sinuses in addition to sputum and treating the sinus infections:http://www.rigshospitalet.dk/NR/rdon...Aanaes_phd.pdf (this is a PhD thesis + relevant studies so it's long!) As far as I know, resistance to antibiotics usually happens when antibiotics are started too late (so that the bacteria have formed biofilms) or given for too short a time or too little (so that some of the bacteria remain and start to mutate) or if the bacteria are not sensitive to the antibiotic being used.In Denmark they also always use two antibiotics at the same time to minimize resistance and increase efficacy, here is an article of how they treat staph:http://www.cysticfibrosisjournal.com...125-7/fulltext

 

[Shauwaun]

We are newer to it all but our dr instructed us to increase chest pt at the first signs of a cold including the albuteral so we get in 4-5 treatments. When the cough starts track for improvement for 5 days. If there is no improvement we go to the local pediatric dr for a good listen to her lungs. They give us antibiotic then. If the cough doesn't improve we change antibiotic. If that fails we go in. We har been blessed to not need the second antibiotic so far. But we also do not have much exposure to kids and illnesses. I am going to ask about increasing the pulmozyme. We do not currently do that.

 

[MotherofCFBoy11yrs]

I think it is dangerous to prescribe antibiotics just on the basis of listening to the lungs or a cough, that's exactly how resistance builds up. The drs should get a sputum sample so they know what bacteria they are treating and see what antibiotics it is sensitive to and stop the antibiotic only when they can see that the bacteria is gone. Infections can be asymptomatic. Getting samples from small children can be hard, with my son they used to put a tube down his nose and use suction to get a sample (very unpleasant). Once my son started hypertonic saline it's been a lot easier, he inhales it until he is able to cough up something. We do this at home, the sputum samples can even be sent by mail if the lab is far away.

 

[ymikhale]

Different doctors have different approaches to this. I consulted with one Israeli expert, he gives antibiotics on every cold and has geriatric patients (of course there are other factors that come into play, he sees his patients every month). Our hospital does not give antibiotics automatically, but they don't give all the preventative meds that you are mentioning unless they were approved for her age (5 y/o). We do have long lasting bronchodilator and Albuterol and up the CPT when sick also. Nose rinses are important as well but in my experience too often this is not enough and we end up with antibiotics anyway. As soon as my dd gets congeted during a cold, I do a sputum sample so that if she does not get better in a few days I can start her on the right atibiotic right away.

 

[MotherofCFBoy11yrs]

Hi ymikhale, about the preventative meds: The prevention of staph aureus is only common in the UK and Australia as far as I know. Prevention of PA with inhaled antibiotics is much less common, there is one centre in Brussels where they've used this method for a long time and I also think there are individual families in the US treating their children this way (those who have listened to Jeff Wine). The European CF Society decided against recommending PA prevention because of the "burden of this approach". I don't think it is a burden at all! My son does take Tobi daily, but it's part of his routine, like brushing his teeth, and is pretty quick to do with the eFlow. We don't do physiotherapy, my son's lungs are clear, he hasn't had any exacerbations or even a cough, and I don't need to fret about PA because it is highly unlikely he'd get infected with it. We don't do staph prevention because I don't like oral antibiotics, but unfortunately my son does get staph in his sinuses which means he is on oral antibiotics more than I'd want him to.
.
BTW I wish all CF medicines were approved for the under-5s as well, they can benefit the most because their lungs are usually healthy.

 

[thaifghtr87]

advise from a cystic

Hi, we are on day 4 of a cold and I am trying to help Sam clear it as quickly as possible. Our CF clinic does not really have what I have heard some parents call a "sick plan" so I am trying to make one on my own. Here is what I have been doing since Monday - I have increased the vest from 2 X a day to 3 or 4 X a day. I have increased the sinus rinse from 2 X a day to 3 X a day, and we are using the squeeze bottle. We are having Sam drink lots of fluids. We are taking Mucinex - 1 teaspoon 2 X a day. The Mucinex was the recommendation of my clinic and said they would prescribe antibiotics or have him come in if he doesn't improve in the next few days. What I'm wondering is, maybe antibiotics should just be an automatic part of the sick plan from day one of the manifestation of cold or respiratory symptoms? We are fighting this so hard, and I thought he was better yesterday, but he woke up coughing pretty good this morning. I was impressed by Ratatosk's treatment plan that just keeps Max on antibiotics permanently. Can you suggest anything to add to our sick plan? I really want it to be effective because school is starting and I have to be ready to attack those ugly colds and flus. Does anyone automatically start antibiotics at the sign of a cold or respiratory infection? OR how long do you let a cough go on before your doctor prescribes antibiotics? Thanks. I don't know how I would navigate this without the help of all of you. rosesixtyfive, mother of Sam, ddf508

Hey there

Ibalso have ddf508 aandtue reason i am so healthy is cause of my antibiotics. Colds will increase infection and could potentially land us in hospital. Tobi every other month has saved me many times. I recommend looking into that if you are not on it already

 

[ymikhale]

Hi ymikhale, about the preventative meds: The prevention of staph aureus is only common in the UK and Australia as far as I know. Prevention of PA with inhaled antibiotics is much less common, there is one centre in Brussels where they've used this method for a long time and I also think there are individual families in the US treating their children this way (those who have listened to Jeff Wine). The European CF Society decided against recommending PA prevention because of the "burden of this approach". I don't think it is a burden at all! My son does take Tobi daily, but it's part of his routine, like brushing his teeth, and is pretty quick to do with the eFlow. We don't do physiotherapy, my son's lungs are clear, he hasn't had any exacerbations or even a cough, and I don't need to fret about PA because it is highly unlikely he'd get infected with it. We don't do staph prevention because I don't like oral antibiotics, but unfortunately my son does get staph in his sinuses which means he is on oral antibiotics more than I'd want him to.
.
BTW I wish all CF medicines were approved for the under-5s as well, they can benefit the most because their lungs are usually healthy.

Hi MotherofCFBoy11yrs,
I was actually not referring to preventative antibiotic treatment, but to things like hypertonic and Pulmozyme. Here in France we don't do either Pulmozyme or Hypertonic on young kids unless their lungs are really affected since it has not been approved for young kids and we don't know how it will affect them. Since you mentioned it, we don't do preventative antibiotic treatments either. My impression is the doctors here don't throw all the existing medicine on you just because it exists but kind of weigh things carefully in terms of benefits/side effects.

BTW, I am really surprised you don't do physio, as far as i know it is really standard worldwide, from what i was told, it is like brushing your teeth even though you don't have any decay yet.