preventative measures

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anonymous

New member
Hello,

I know people have asked this before but I have a 15 month old (Bennett Patrick) with CF. We start chest PT tomorrow. Beside that he takes zantac, multi vitamin, enulose, creon 5, and a floride supplement. Not that I am complaining but I am getting nervous we may not be doing enough to "prevent" something more. He has not cultured anything yet but are there others out there that are doing more?

Thank you.
Paula
 
A

anonymous

New member
Be very diligent on the Chest PT's and nebulized treatments. We do three a day during the cold and flu season. Handwashing is also very impt.
 
A

anonymous

New member
Handwashing is very important.
Our hospital highly recommends an annual flu shot.
Our experience has been to keep our daughter well rested and well hydrated.
When I feel she has a cold coming I give her echinacea lolly pops...our dietician says studies show that it will help.
We also use an air purifier in her room and are considering an air exchanger. If you live in Canada you can get a prescription and use it as a tax deduction at the end of the year. If anyone is interested let me know and I'll provide the site.

Love my girl (forgot to sign in as usual)
 
A

anonymous

New member
He had a flu shot and the synagis vaccination. We are very on top of the hand washing. I got a "lot" of Purell for christmas last year from my husband! We start chest PT tomorrow but don't do any nebs as of yet. He has had four "minor" colds and had handled them all well. He seems to have more issues with digestion and gas at this time. Thanks. I just want to make sure we are doing all we can!
 
C

CFTwins

New member
Paula, I have the same question as you about prevention this winter...so thanks for asking it! Is the flouirde CF related? THanks, Stacy
 
4

4kidsmom

New member
Paula,

I have a 4 year old with cf, we do 4 breathing treatments a day with albuterol and broncho saline, he gets percussion with our hands twice and the other two we use the vest (you will be so happy when you get the vest). He has had 4 all of his life and when he is sick he gets B.T.'s (breathing treatments) every 3 hours around the clock. I think we have missed one breathing treatment since his birth, we are very religious about that. He does it VERY well too. He also has been on Pulmozyme for the last 2 1/2 years or so and is on Pulmicort for the last 3 months-- twice a day. He takes Lactulose- 2 tsp twice a day, Miralax, One Creon 20 and 2 Creon 5's with meals and snacks, ADEKS vitamins, extra vitamin E (400 I.U.'s), Prilosec ( but will be changing to Prevacid because of insurance), Flonase (has a nose polyup (spelling?), he has a med port in his upper left hand chest since 2 months of age, and has just had a new one put in last April. We make sure he doesn't miss any of his medications, the bowel medication is VERY important. He tends to get obstructions frequently. We are thinking he needs to see a bowel surgeon. He has an obsturction at birth and a stoma and J-tube for 2 months, then they reconnected because of failute to thrive. He is also very good at drinking 2 to 3 cans of Pediasure a day, we can tell a difference when he doesn't, as far as his health and weight.

If you have any questions please let me know.

Angie

Step mom to Brittany 13 without cf
Mom to Tyler 12 no cf, but a carrier
Mom to Brady 4 with cf
Mom to Taylor 3 no cf, but chromosome disorder, deletion of 9q 21.2 q 22.1
 
A

anonymous

New member
Angie,
He takes the same amount of creon with every meal and snack? My daughter is also on creon, but we have to vary the dose depending on the amount of protein/fat in the food she will be eating. So if she is eating pretzels she takes no creon, but if she has pretzles with peanut butter she takes 1 creon 5, and if she is eating a larger meal (BBQ ribs) she may take 2 creon 10. We were told that taking too much of the enzyme can cause constipation. Just something to look into.
 
A

anonymous

New member
please don't forget exercise! I think that treatments as prescribed by your physician are very important, but exercise goes a long long way in helping prevent infections and clearing out the lungs. I was a swimmer from age 9-18 and I am positive that that was one of the main reasons that I was so healthy. I know 15 months is a little young, but even hard playing or tickling might do the trick. I'm not really asthmatic, so for me, I need to rev up my lungs enough to get a long hard cough out and then I usually get a second wind and can keep going without much more hard coughing. Just personal experience, but I hope it helps!
wanderlost 28 w/CF
 
A

anonymous

New member
wow, we've been doing CPT and nebs three to four times a day since ds was a couple of weeks old. His doctor is very very proactive about keeping his lungs healthy. He is two and half years old. He's on Keflex and Zithromax, Actigall, pancrease mt4s, adeks. Nebs are pulmozyme, albuterol, atrovent and Tobi.

We all get flu shots. Proper hand washing. Wipe down shopping carts with wipes before using them. Avoid the play room at McDonalds...
 
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