I am new here and keep messing this thing up sorry. I was just at the cf clinic with my two year old son. His doc wants to put him on pulmozyme. I was wondering if anybody has thier kids on it and how well does it work? Also he needs to gain three pounds and he is on benecalorie and scandishake and its not working to well. Does anybody have any suggestions on how to get weight on a two year old? Because he may end up with a feeding tube and I really dont think I want that?? Please help I just dont know what to think or do.my email address is blueyes49659@yahoo.commom to son w/cf
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Info on pulmozyme
- Thread starter anonymous
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Hi, my daughter started pulmozymewhen she was 2, now she is 7. It has been great for her! I saw a difference right away. She was started on Tobi at the same time. As for the weight, it is always a struggle for us. At 2 she basically lived on pediasure. We would try to feed her anything else that was high fat. The docs said this was okay because she was getting the nutrician from the pediasure. One trick the nutitionist had us do was to feed her oreos, they are high in fat and then she would be thirsty for the pediasure. Try to add fat to everything. Ranch with vegies and chips, etc... Turn the food pyramid upside down. Hope this helps.
Getting your kids to gain weight is always a challenge. You just have to take it slowly. If the docs just mentioned a feeding tube and haven't given you a chance to try and get some weight on him first and that's what you want to do then just tell the docs. I know some people probably wont' agree with me on that but you know best right now what you can handle. My girls are older, teenagers. My oldest wasn't diagnosed until age 3. She's the one that's always had a weight problem. The docs didn't start talking feeding tube until these last two years when she was 15yrs. old. By that time, she was set in her ways and absolutly refused to have one put in. Being a teen she was able to try a medicine generally used for cancer and HIV patients to get them to gain weight. It worked for her really well. But your son is not old enough to use it. Here is what they told us to do when she was little. Add butter, margarine to everything. Veggies, rice, potatoes etc. Use lots of gravies. Whole milk only and make it super milk by adding powdered milk to it. YOu can also use powdered milk added to your mash potatoes, then the butter/margarine, and whole milk. Puddings are good too. Peanut butter on crackers. Fast food has tons of calories. Many places have calorie booklets now. Wendy's Frostee, the small one, has like 370. Ice cream. I know he's only two and can only eat so much. Chicken nuggets from KFC or the popcorn chicken even better. I don't mean to say eat only fast food, heavens no! In the summer, we tried one frostee a day but that got to be too much so we changed it to three times a week. Hope some of this helps at least to give you some ideas on where to get throw in some extra calories. And tell the docs if you want to try and get some weight on him first before thinking more in depth about a feeding tube. But I have heard that they do wonders. Liza
hi, My daughter has been on pulmozyme since before she was 2. It does help. Rachel was hospitalized 5 times before she was 2 and not since just before her 2nd birthday. They put her on it just before her last admission. We always have a problem with getting weight on Rachel. At 2 she LOVED spicier things. She adored "mexican scrambled eggs" made with 1 egg, salt, pepper, 2 tsp heavy whipping cream, a bit of "mexican" shredded cheese and a teaspoon of salsa. I know it sounds odd to give spicy things to little kids but the nutritionist told me that some kids with CF need spicier things to intrest them. Rachel also loved to dip everything into ranch dressing. There is also a product called duocal (the pharmacist can order it for you if CF clinic doesn't know about it) to add to liquids like soup and milk and salad dressing........you can't cook it though, so add it after things are cooked.Good luck!Andreamom of Rachel 5 with CF and a boy on the way, no CF
I'm almost 23 and started Pulmozyme whn it first came out, I was even part of the clinical trials in the early 90's. I can tell you it makes a WORLD of difference. When I don't do it for a while, I'm not perfect, my mucus thickens right up. It is a godsend.Also, about the feeding tube, three pounds is nothing. Your doc might have just mentioned it to let you know it was an option later in life. Feeding tubes are a whole new set if things to worry about. It should only be considered if you child can't eat on his own, or if the malnutrician is out of control. It's very common for CF kids to be tiny and under weight. Just keep packing on the yummy calories and let him grow a bit. Are you at an acredited CF center? Debbie22 yr old w/ Cf
Emily (20 years old with CF) has been Pulmozyme since 7 days after it came on the market. I think it's been about 8 or 9 years now. I have lost track. She does a treatment once a day in the evening (twice a day when she is feeling lousy). She never skips it because she knows if she does, the next day she pays for it. She says it is kind of a pain sometimes because she has to drag her nebulizer everywhere she goes (to college and home, on vacation, overnight trips, etc.) but she also knows that if she doesn't drag the machine, the next couple of days, she is miserable cuz she has missed a treatment and she feels lousy! We love Pulmozyme!<img src="i/expressions/face-icon-small-happy.gif" border="0">