A Few Ideas for Cough-that-won't-stop

One suggested for croup, and which has saved us several times in the middle of the night, is to run a bathtub of water as warm as the CF person can tolerate while keeping the shower curtain/shower door/ bathroom door tightly closed to create maximum steam. Have the coughing person stay there as long as the heat holds; in the case of a child, make sure an adult stays with them. (Sorry, I should added that if you don't have a tub, a shower will do - it's just a little harder to relax and get sleepy standing up.)

Beg, borrow, bribe, steal - do whatever is necessary to procure a bottle of REAL cough medicine; the kind that every other country but the USA has readily available - with codeine in it. Keep on a high shelf; regard it as an absolutely last ditch, emergency medicine - and when it's 2 AM and your child has been coughing non-stop for hours and is losing precious sleep, pour out a little dose and watch 'em drop off in 15 minutes! (We use a single dose maybe three or four times a year; experience has taught me that lost sleep is VERY dangerous to my daughter's health, especially when her body's actively fighting an infection).

I've noticed that doctors are very, very careful to always encourage coughing, with the obviously desired end-result being expulsion of all that clogging mucus. I don't think they often have an opportunity to hear non-productive cough, yet we know that children can often cough that way and that there is no benefit whatsoever to that kind of coughing. Once we've hung 'em upside down, pounded them, aerosolized them - we know we've done all the "productive stuff" possible; now it's time for them to calm down and rest - and that's where we come in as Prime Health Care Managers! We know our stuff, our instincts are good.



Three-Step Plan for Health & Happiness

REVISED & UPDATED for 1995 (Specifically Designed for PWCF But Adaptable)

Absolutely FREE!

HUMOR (for the mind)

WATER (for the gut)

EXERCISE (for the lungs)


When the Plumbing Gets Clogged Up

On those rare occasions when my 99.99% - proof WATER therapy fails me gastro-intestinally speaking. I take Go-Lytely, which is about as easy as drinking water. At the first sign of trouble, just ask your doctor if you can try the Go-Lytely and save yourself the hassle of x-rays, etc. And for God's sake, just drink the stuff. 8 oz. every ten minutes is EASY and you can do it at home. Yes, it tastes bad. But when the alternative is having someone jam a tube up your nose and down your throat, well, the stuff is well on its way to tasting like honey wine. I think even younger kids will see the wisdom of this . . .

Another method:

At bedtime take 2-3 tablespoons of mineral oil (adult dose)
Eat shredded wheat for breakfast
Wait. "It never fails to move me" Another view (from a CF nurse): Please don't take the mineral oil before bed if you have ANY amount of heartburn (which many PWCF and lots of others have). Many people with chronic lung disease have nighttime aspiration, which means that a small amount of the stuff in their stomachs moves up through the esophagus and gets breathed into the lungs while they're sleeping; as a matter of fact, this is considered a major cause/worsener of chronic lung disease. Mineral oil is very BAD stuff for lungs and can cause scarring (fibrosis) that does not respond to any treatment. Try taking it (if you must) first thing in the morning with a hot drink--that tends to move things through. Some of the PWCF I know take Lactulose with hot tea in the mornings (tea supposedly kills that bad taste); others swig down a gallon of Golytly once a month or so, since they've learned that they have frequent partial obstructions and this cleans them out. There's no one answer (like most other things).

Another method:

(My 16 year old) was born with meconium ileus, and has had two surgeries for blockages. A couple of years ago, she was starting to get another one, and the doctor told us to have her take a tablespoon of mineral oil daily to see if it would resolve itself. It did, and now whenever she starts to feel those symptoms again, she --reluctantly-- takes the mineral oil (she stirs it into rootbeer and drinks it through a straw, of all things).

And Another:

My son has had repeated blockages. He was treated for along time with prophylactic mineral oil- 2 tbs. a night. He is now 12 and we have found that a treatment of flagal (a strong intestinal antibiotic for 7 days every time his stomach gets bloated and his stools get worse, this helps kill his over growth of bacteria in his intestines) and if he has a stomach ache he starts back on the mineral oil 2 times a day until his stomach is better. When he was younger he had to have gastrographine enemas, this is done by a radiologist. This always cured the problem immediately and once we added the mineral oil and flagel he stopped getting as severe blockages that required the gastrographine.



Sinus Irrigation Techniques

1. I wash my sinuses out by using a mixture of warm water (not hot!), and a pinch of table salt in a portable enema bag. When the bag is placed higher than the head, the flow is just right. It can be controlled by pinching the tube, or using the metal clip on the tube for that purpose. The flow will go from one nostril through the other. When I have a problem, I will usually wash out my sinuses in the morning, and evening. That should be enough. As things improve, once a day should do it.

2. She has since learned that regular irrigations (2/day now) with just saline, followed by two sprays of Becanase in each nostril, keeps her nasal congestion and polyps under control (yes, more did start growing before she used her Becanase regularly). Since sterile saline is pricey, we make our own by boiling water for 5 minutes, and adding 5 grams of regular table salt with a pinch of baking soda. We keep two liters at a time in the refrigerator and she heats it to room temperature with the microwave when she's ready to use it. According to her doctor, she wants to "aim" the tip of the syringe sort of inward and slightly back toward the area between the eyes. He said if the solution goes out the other nostril, down her throat and out her mouth (as she leans over the sink), she is doing it right.

3. After my wife's nasal surgery, the doctor recommended a daily flush with the following:

1 qt. water 1 tsp baking soda 1 tsp sea salt 1 tsp sugar

This is mixed in an enema bag and run into the nose through a nasal douche. It helped my wife quite a bit.

4. More Nasal Irrigation Recipes (5/97)

The magic recipe: 1 tsp of salt, and 1 tsp of baking soda to one quart of water...shake well! This is our CF clinic's recipe.
My ENT gave me a recipe calling for 1/2tsp salt + 1/4tsp baking soda to 1 pint sterile (boiled) water. 1 pint=2cups.
A Special Attachment For A Water Pik? (also see ONLINE RESOURCES)

HydroMed, Inc. manufactures the Grossan Nasal Irrigator Tip (recommended to us by our ENT). It works great, I use it (I don't have CF, just chronic sinusitis), but I can't get my 11 year old CFer to! Her ENT has threatened her with more IVs, more surgery, etc.. but she doesn't want to hear it. I forget the price but think it was somewhere around $25.00. I'm sure they would ship it to you, it includes instructions and all.



I purchased mine for $8 from my ENT. If you don't have an ENT I wouldn't recommend this type of lavage because if there are severe polyps or obstructions one could hurt themselves. I also found out that adult ENTs are usually the ones to buy this attachment from.

One way is I take a water pik and remove the tooth attachment and put on a rubber nozzle my ENT sold me for ten dollars. I fill the water pik up with sterile water and a tablespoon of baking soda and a teaspoon of salt. There are a zillion combos of how much of each. I played around a bit and found what was tolerable (it can burn) for me. I have also sprayed "hurricane" up my nose first (depending on how sensitive my passages are); this is a prescription of lidocaine for mucous membranes. Then I put my head over the sink and turn on the pik. I wait until the saline mixture comes out the other nostril. Then I blow my nose and switch sides. I keep this up till the water is gone.

I use a water pik with a special adapter to rinse my sinuses. The water pik lets you adjust the water pressure to a comfortable speed. The pulsing water helps to knock the junk loose. You can move the position of the water stream around to get at the stuffiness. I started out with an ear syringe but my doctor didn't think it was reaching back far enough and the syringe was difficult to keep clean and dry. I don't let the water run down my throat. I rinse the first nostril with half of the solution and then the other nostril. I use pickling salt and a touch of soda in my solution but run a bit of tap water through the water pik after I'm done. Once a week, I run alcohol through the water pik. Make sure you boil the water before adding the salt and soda if you are using tap water to make the solution. It works better if the solution is warm. I rinse once a day in the morning. If I feel a need, I will rinse again in the evening. I can tell by feel (comfort) if it works and by the junk that rinses out as the water flows out of the nostrils.

One person reports: "I called Water Pik today. They are not happy that this practice is going on. They have not researched it and do not recommend using the water pik for this purpose"

Another notes: "I have heard of using Tobradex (Tobra for the eyes or ears, I forget which) in the water pik."

A First-Person Account:

I water pick 2x daily, with the Grossan attachment, warm distilled water, non-iodized salt (not too much!), and 1 cc of Tobra. It makes a REMARKABLE IMPROVEMENT with consistent use! The Tobra makes a HUGE difference, I think, in terms of bathing the sinuses with ab. to prevent and control chronic infection. Sometimes my palate and eyes burn with the Tobra, and I know that some people use Tobradex instead of regular Tobra in the solution -- look into it! There is a spray called Hurricane, which numbs the nose before irrigation, and should prevent undue pain and discomfort. An ENT should know all about this!



Voice Loss from Dnase

I use Pulmozyme (DNASE) and have noticed a huge positive effect. I have more energy, and it is easier to get up those secretions. It makes me lose my voice occasionally, but I have finally found the answer to that question, YEAH! I coat my throat by drinking a glass of milk before I do my treatment. I have something to drink afterwards too, just for good measure. The things I tried before that didn't work were: gargling after treatments, inhaling the DNASE such that none was left in my mouth/throat, drinking water after treatments, not talking so much. That last one was nearly impossible!!!



Baby Wipe Recipe

It seems that babies with CF who have pancreatic insufficiency need lots of diaper changes, at least that is what I have observed with (my child). Well, a friend gave me the following recipe a while back for making my own baby wipes, which has saved me tons of money: First, you'll need some sort of covered container, approximately 6 inches deep, and 6 inches or so in diameter. I found that the 10 cup Rubbermaid Servin Saver canister is the perfect size. Then, you cut a roll of Bounty paper towels (big roll) in half, so that you end up with two smaller rolls. Remove the cardboard tube. Put one aside to save for later. Put about 3 cups of water in the container, 1 teaspoon of baby bath or baby shampoo, and about 2 teaspoons of baby oil into the water. You can put more or less to your liking. Swish it around a bit to mix it, then just stick one of the halves into the container and cover. The water will all eventually soak into the paper towels. Pull the wipes from the center of the roll. I love these wipes better than the commercial ones. They are much softer, and do a better job of cleaning as well. One thing - other brands of paper towels won't work (I've tried), so it is important to use Bounty. Also, the Select-a-Size kind make it easier to tear off sheets. Also, if you are not using a big roll, but a standard roll instead, then cut the water down to about 2 to 2 1/4 cups. To make my wipes portable, I tear a bunch of them out and stick them in a Ziplock type of bag.



Nausea

I've had good luck using ginger when I felt nauseous. Health food stores sell liquid ginger which I use a few drops at a time. Once is usually enough to stop the nausea. I sometimes mix ginger and sugar with hot water and drink it as tea just because I like the taste. We usually have candied ginger around and that's good, too. (I wish I'd known about this when I was pregnant!)

I've had this recipe for nausea for quite some time. Made it for a friend who was suffering from severe morning sickness - she said it worked great. Keeping blood sugar levels constant seems to abate nausea symptoms too.

Ginger Drink for nausea: Peel small ginger root. Boil with lemon peel in water. Strain. Cool. Sip.

Believe it or not, another thing that helps some with nausea is a teaspoon of cold syrup from canned peaches, fruit cocktail or the like. Take a teaspoon wait a bit and then try another spoonful, then pace yourself with it. High glucose solutions, I guess...it works for my kids better than the "old fashion" coke syrup we used to get at the pharmacy. I didn't believe it until I saw it work with my very sick daughter.



Organizing/Storing Medical Supplies

To organize medical stuff, we have found a three drawer filing cabinet works well. Buy one second-hand, paint it cool, and voila,out of the way!

I got my Caboodle caseat Target, in the make-up/jewelry section and it cost between 12-15 dollars. They have different styles, but this kinda flat rectangular one has enough compartments and does the trick. It has this funny thing which a bunch of tiny compartments in the middle, but I just took that out and there's a big space for more stuff! I love it, it keeps all my everyday drug close at hand. Before that I just had pills and treatments drug everywhere, very messy.

I needed a place for all his meds. Easy to get at . Organized. I got it! Why not use a tool box! Yes! We found one on sale -Red one .It had locking drawer and even a place to store his cans of nightly feedings. There was enough room to store just about everything. When the nurse came it was eazy for her to. We set up a drawer for Daily meds.,breathing meds.and equiment ,a drawer for feedings, and several smaller drawers for other medical supplies,such as needles,gloves,wipes ect. And the big thing is It's all on wheels! I can move it anywhere.

Another option for organizing medical supplies is one (or more) of those 3 tiered metal baskets hung from a plant hook.



Pain From O2 Cannula and Insulin Shots

I've been having this problem with the cannula-the little rubber piece under the nose is very uncomfortable, it digs into my upper lip and hurts. Anyone have any tips on preventing this? Also, I'd like to hear from other diabetics regarding how to lessen the pain of the insulin shots. I don't have too much body fat so the shots are really painful. I was wondering if anyone had any tricks to prevent or at least lessen this.

Replies:

At times in the past I have found that turning the cannula tips around for short periods of time can help to relieve the pain in the nostrils. It might be necessary to hold the cannula in that position with your hands. This is not a long term solution but can bring some short-term relief. Another trick that a friend used to use is to put a cotton ball between your upper lip and the base of the prongs. This creates a little bit of padding and lifts the prongs up from your flesh. Neither of these helps will work when you are "out on the town", but they may provide a little bit of relief. Now to the pain of injections...one trick that we used to employ when I worked in pediatrics was to either slap the area where you are going to inject the solution or to squeeze (or pinch) the skin where you are going to inject. These techniques provide a bit of short-term anesthetic-like response. The theory is that by "shocking" the nerves at that point, you have a short "window of opportunity" to make your injection with lessened sensitivity to pain there. If you are skeptical about this technique, I don't blame you. I didn't believe it till I tried it and had great success. We found that it worked especially well with very painful injections such as gamma globulin and thick antibiotics. I hope that this technique might give you some relief from some of the pain of injections.

I reccommend a cannula made by a company called Salter Labs. They are my favorite. First, they don't have that new plastic smell when you first open the package, that alone drives me crazy. Second they are clear not greenish. Third the nasal prongs are curved as to fit better into your airway. and Finally the actual nose piece is completely smooth, no little flap or whatever that is called. The label says:

Salter Labs One-No. 1600* Adult Nasal Cannula There are many different brands of cannulas, some are distinctly more comfortable than others. There are different tip shapes and diffent materials. See if the nurse, doctor, oxygen provider, whoever, can come up with a few different ones to try. Its well worth the effort. Also, although I am an adult, I have at times used pediatric cannulas and found them much easier on the ol' shnoz. I found one comfortable one and stocked up while in the hospital, grabbing a new one every time (almost) the respiratory therapist came in.

re: insulin shots- if they're really horribly painful, ask your doc for some EMLA cream. EMLA is a topical anesthetic that is applied about 1/2 hr-1 hr before a painful procedure (like immunizations and PICC lines- NOTE!!) It's a cream that's put on then covered by a plastic bandage so it isn't rubbed off . Use sparingly and if you're just talking about discomfort, I'd probably skip it- taking the plastic dressing off is probably as uncomfortable. There is also some discussion in the literature about decreasing the rate of absorption of injections when using this drug although I don't think it's ever been proven. I would think that 1 tube would last a couple of weeks for insulin injections. Also, your nose will toughen up as you wear your cannula at night- My husband has used one at night for 4 or 5 years now. He complained constantly for a couple of months and now doesn't even notice it. You can also use some Aquaphor cream (or anything else that is soothing) right at the front of your nostrils to help protect it in the short term.



They Keep Sticking Needles in My Kid!

This is a common situation in teaching hospitals. There are many benefits to being at a teaching hospital, the best being that they usually are very up to date on the latest treatments, research, etc. The down side is that someone is ALWAYS learning and often on your kid. This is not always bad. But when your child is in distress, you sometimes have to step in and ask for more senior people. (It is often said by parents of kids with chronic disease that the WORST time to get sick is July and August when the new crop of residents comes in and you have to break them in all over again!! There is a lot of truth it that statement!)

It is not at all unreasonable for you to request that a more experience doc handle a difficult situation. Kids with CF get stuck so often that even one more stick is very upsetting. If you feel that the situation requires it, and in this case I think you were absolutely right, then request another person. If the doctor has a problem with this you need to talk to him at a calm moment. Pick a time when your son is doing well and not in the hospital if you can. You are very vulnerable at those times and you are better off coming in with a calm viewpoint when you feel good about yourself and your world.

My daughter has a HORRIBLE time with sticks and has learned to make alliances with Anesthesiologists and New Born ICU nurses. They are the best at finding a vein. You might want to talk about this with your doctor. And prepare him for the times when you will ask him to step in and even refer you to someone else who is very proficient in starting IVs, lines, etc.



Help for Difficult PICC Line Placements


Ask that it be placed in Radiology. The last time a line was placed in our daughter it was such a nightmare experience that I swore I'd never let her go through such again. Thank goodness it was only a short while after that someone on CYSTIC-L (thank you!) mentioned placing the line in Radiology and how almost easy the procedure became. Needless to say, that's the <only> way I'll ever let someone insert a PICC line in her arm again!

Another person says: I have loads of advice to avoid PICC Line Horror. 1st off, I stress that if at all possible demand that a true surgeon inserts it; 2nd, ask for Emla cream, a glorious invention that removes all sensation of the needle poke, to be placed on the site an hour before insertion: and 3rd, after the Emla has been wiped off for insertion they should inject into the vein a second anesthesia; 4th, last but not least they should take an x-ray after the insertion to make sure it was placed correctly! If these tips are followed there should be little or no pain. Other tips I would stress would be don't show that you are frightened to [your child], keep a face of confidance and love for her to look at instead of the unattractive procedure and everything should go well.



Too Much Gas?

One idea:

Our pharmacist recommended taking simethicone tablets daily to overcome the gas problems caused by CF or anyone who is beginning a high fiber diet...

Other ideas:

After suffering for years with those god-awful, gut ripping gas stomach aches, I've finally discovered a few things that help:

1. When you feel them coming on, take your fists and massage your stomach and more importantly, your colon area. Move the stool around, back and forth in the colon. I'm talking deep massaging. DIG YOUR FISTS IN AND MOVE THAT STUFF BACK AND FORTH. This sometimes gets rid of it. The pains is gas and if you move it around, they may stop.

2. Get a powerful "bowel softner" (like liquid sorbitol-it works great and kids will like it becuase it tastes like liquid sugar-and diabetics like me can use it because it isn't sugar) and use it when you feel it is coming on, like when you feel like your "movements" become fewer and farer between.

I don't know how many of you know this, but people with CF usually have a problem with the muscles in their intestines, they don't push the stool out very well. I saw a gastroenterologist who specializes in CF and he put me on "Propulsid" which makes me have numerous "movements" a day. I haven't had a stomach ache in AGES. This stuff is a dream come true. Of course, talk to your doctors about it, but it worked like a charm for me.



Therapy Dog/Assistance Dog for PWCF

A Therapy Dog can go to nursing homes, hospital and schools to visit and educate others on the value of canine companionship. It has been medically proven that people with pets live longer and have fewer health problems: they help fight depression, and just petting an animal can lower blood pressure. So when [my dog] goes into the nursing facility he is like natures medicine to the old and the ill. He and I will be volunteering to do this in the coming months. Now the real reason I had him certified is now he can visit me when I'm in the hospital and he can go to rehab with me and I don't have to worry how he is when I'm gone for long periods of time. I plan to get him certified an Assistance Dog next. That is when the dog becomes like a third hand or leg. They are taught to pull a wheelchair and retrieve items dropped or needed below the persons ability to reach. This helps CF persons so we don't tire ourselves out picking up things and having to go get them. Believe me this is wonderful if you live alone. "[My dog] go get your leash" "[My dog] go get the purse and my car keys" all while I rest on the couch and "...bring my shoes while you're at it". Sounds far out, but not really. Assistance Dogs do all this and more.... He also will wear a back pack designed to carry a cell phone and my meds, a card with all my medical problems and anything else I need ...my wallet -- try stealing that! Just think of all the things your dog could be packing for you when you go places.

More info: Therapy Dogs:Dog Play: Getting Involved in Animal Assisted Therapy Assistance Dogs:http://www.wolfpacks.com/catalog/serviced.htm