Medications & Supplements

Sallie- Mucomyst is a drug that thins secretions.  It should always be used in conjunction with something like Albuterol and many families have had great results in using Mucomyst and Albuterol in a nebulizer when their child has a respiratory infection. The families that I personally know of are all families that use the non-invasive protocol and keep these two drugs on hand to use as needed. The Mucomyst thins the junk and the Albuterol moves it.  I pasted this quote from a web site that went into detail about the drug. "Mucomyst thins up secretions. If you were to spit and pour Mucomyst on it, the spit would de-solve It does this by breaking down the chains that bind the spit together. (Forgive my graphic description). It doesn't matter whether the secretions are thick or thin it will effect them."

They all get ďBiPAP bitesĒ now and then. The product that we use is called Hydrous Lanolin and the brand we use is Fougera. We get it at our Target. It comes in a tube. We find it on a display right by the Pharmacy.  Ask at a Pharmacy.  It is used for nursing mother's nipples. But, when Liz was nursing, I found that many places are using a much coarser product that does not work as well. The hydrous lanolin should be a creamy white color. Not tan or brown. Back when I was nursing, I got a high quality directly from a pharmacy and it came in a little tub. We put a thick dollop on first thing in the morning and keep it thick throughout the day (usually have to replace after using the In/Ex). At night before putting her to bed, I think Liz wipes it off and replaces it with some antibiotic ointment and a little piece of cotton flannel. The Lanolin is too sticky to use with the mask. Then we do the same thing every day until it is healed.  It seems to be the best thing we have tried to get her healed up quickly with minimal scarring.  We have found that you have to be careful on the face about using Band-Aids because they sometimes cause a sore of their own when you take the sticky part off. We kind of play it by ear according to where it is. We sort of treat these BiPAP bites like burns. The burn experts tell you not to let a burn get dried out because it will crack around the edges and cause more scarring. (also more likely to get infected)

Jeni- Pulmozyme is gene therapy designed for kids with CF and it tells the lungs not to overproduce secretions. Annah hasn't woken up drooly or rattly since she started and that's a miracle for her!!!

Sue- My pulmonologist didn't want to try the Mucomyst either.  He said it's
stinky, that no one uses it anymore, and that it increases secretions and why would we want to do that?  I tried explaining to him, but he wanted us to try Duo Neb first, which is albuterol and another drug combined that acts along with the albuterol.  We used it last time Colin had a cold and it really helped to open him up when he sounded tight.

Liz-Mucomyst is N-Acetyl Cysteine, an amino acid, and I don't know anything about it being a meat tenderizer, but I like that it lowers heart rate since albuterol increases it, so they negate each other, not to mention it MAJORLY thins things out, and we have never had a pneumonia
either. It does stink though.

Cindy (Kaelenís grandma)- The doctors switched Kaelan to Xopenex because the albuterol caused his heart rate to go up.  I think that's the main reason.  Corby & Ruthie have been using the Xopenex for a couple of weeks now and so far so good.

Wanda-Here is the website for the b12, you can also get it in 1000mcg, we buy enough that the shipping is free so check into that as well.

Brenda Brames- Acidophilus-You may have to play some with the dosage to get it just right for your child. You are right you donít want to start two changes (whether it be a new supplement or a different dosage) at the same time. Because if your child encounters any problems you want to know which supplement caused the problem and which supplement you will need to adjust or maybe even remove from his plan. There are no set dosages for most of these supplements that we add because the childrenís needs differ so much. But what I have learned about acidophilus is that 1.) It aids in digestion 2.) It helps with excess secretions 3.) If too high of a dosage is given then it can cause diarrhea and cramping. The instructions on the back of Crystalís label says ľ of a teaspoon for ages 4 and up. Well Crystal is almost 3 and her doctor still wants this to be split in half. Also make sure that you are using a milk free acidophilus. The brand I use is stored in the refrigerator at the health food store.

My pet peeve with medicines is that i will not give Crystal any medicine that has anti-histamines in it.  Or even it says, "may cause drowsiness" because it causes Crystal drowsiness all right and can ruin her all day.  She can't even sit up with medicines like that because they cause her to relax so much.  Just my thoughts.

Stephanie Varney- I use Phenergan for Matthew. Donít give it to them if they have a cold. It does make them sleepy and they canít cough. That happened with Matt. We use Zofran syrup 4 mg/5ml; Matt takes 1/4 teaspoon every 8 hours. Matt is 30 lb. 5 years old. It doesn't make him sleepy and works faster than the suppositories.

Amy Barnett- I get my Lanolin at Walmart in the nursing mothers section.  It is great and I keep Lily's face slathered in it at night too.  In addition, another trick that I do is to get the DuoDerm stuff (the expensive stuff) and put it on her spacer that goes on her forehead and that keeps the marks off from that too.  I have been really very blessed with the bipap "bites" because Lily really doesn't get them much at all but when she does it seems to be right on the corner of her nose...not sure how the mask contributes to that since it doesnít touch that part at all but somehow she gets the red nose stuff going on.

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