3-WEEK-OLD BABY MEDICATION

[anonymous]

Hello. A friend of mine has just been told that her 3-week-old first baby has CF. In the process of establishing breastfeeding, she has been told to administer both a pancreatic supplement and an applejuice supplement.
Looking around the web, it seems that because diagnosis at such a young age is still relatively new, there isn't yet much information to be had. Does anyone have any? ~ eg the pro's and con's of treatment this early; mixing it with breastmilk; etc? Or direct me to somewhere where I can obtain some info.? Thanks.

 

[Emily65Roses]

It's not really that new. They knew I had CF at two days old back in 1984. A lot of cases are still missed, because doctors are ignorant (there are several other reasons for cases being missed, but this seems to be a common theme). But being diagnosed at or shortly after birth isn't uncommon.

As far as treating the 3 week old with enzymes and supplements, I don't know much about it. A lot of mothers will tell you to keep breastfeeding, as there are natural things that don't occur anywhere else. I have never been there, so I don't know. But I imagine breastfeeding as long as possible (without going overboard) is a good idea. Treatment, in whatever form is necessary, is good to get started as soon as you know the baby has CF and as soon as you have access to said treatment. Exactly what treatments and meds to put the baby on should really be discussed with their pulmonologist. But if they tell your friend to put her baby on treatment x (whatever x may be) right away, you should probably trust their word. Of course if what they say seems absurd, check it out. Your friend is the mother, she knows best, first and foremost. But again, as not-fun as giving a three week old such rigorous treatments is, (perhaps physical therapy, hitting the baby on the back), it's in his or her best interest. So unless what the doctor says seems totally outrageous, I say you probably want to go with it. <img src="i/expressions/rose.gif" border="0">

 

[anonymous]

I cant answer the enzyme question but my son was breast fed until he was 17 months old.. and he was soley breastfed and never took a bottle and didnt start the baby foods until he was around 9 months.. i think that the breastfeeding was the best thing i could have done for him,,, its also good because when your nursing its also a comfort spot.. when my son wasnt feeling well thats all he wanted to do was nurse.(cant say that i liked nursing constantly) but it was good for him.. he was a very chunky baby.. so ya keep nursing....


Melissa mom to dylan 6 no cf and caleb 3wcf diagnosed at 7 months

 

[anonymous]

Hello,

I knew before my second son was born that he had CF. I breastfeed for the first 10 days. At 10 days old he had not gained one ounce. That same day we gave him a bottle at the CF clinic he sucked down 3 ounces in less than 5 minutes! He was working so hard at trying to breastfeed that he was not able to gain any weight. In any event we were sent home from the clinic on day 10 with enzymes, baby apple sauce, and Emfamil with Lipil.

What we did was open the capsule that the enzymes come in and dump that into a small medicine cup. (on a sidenote my local CVS orders the medicine cups for me in bulk - it is less than $2.00 for 100 cups). We started with a half capsule of Creon 5. Mixed that with a little applesauce and fed that to him before each feeding. He took it very well and along with the fomular gained over 1 and a half pounds in 6 days! I pumped and supplemented with formula for about 14 more days and then went to all formula.

On a sidenote there is a study going on now that we are a part of. You can receive all your formula for free the first year (shipped to your door!). cff.org has more details on the formula with lipil study. And your friend should look into the Wee care program (free enzymes and vitamins for the first two years....)

Good luck to your friend. I agree that the breast is best but sometimes it is not possible and you have to look out for the best interest of the child.

 

[Emily65Roses]

Oh yeah. The applesauce enzyme trick. Very popular, so it seems. For years when I was younger, that's how I got my enzymes. My parents would open up the capsule, dump the little "dots" into applesauce, and feed that to me before any other food. It worked well. When I got really sick of the applesauce, I would open up the capsules and swallow the "dots" on a spoon. And then, finally, I learned to swallow them whole. <img src="i/expressions/rose.gif" border="0">

 

[anonymous]

My parents mixed my enzymes w/ banana baby food. I'll bet there are a lot of options for mixing enzymes so your child doesn't get tired of applesauce. Of course, check w/ your doc first.

 

[anonymous]

hi
my son was diagnosed at 3weeks no i did not breast feed but the enzimes and applsause does work for about the first year to year and a half until they learn to spit it out.For us the poop is an issue with most at this age the dr's told us to put the (creon)enzimes in something citris and that applsause was the easiest. I do remember them saying donot mix with hot food because it will deactivate the pill. Now that he is almost two he takes Ultrase with the applsause. As far as info the dr or the nutrionist you use should be able to give you all the info you need, or the cf book they give you when you first learn the child has cf.I'm not sure what state you are in but i do have an extra book if you need it. If you would like the book i can ups it to your home

mom of jason 1 1/2yrs old w/cf

 

[anonymous]

My daughter was diagnosed with cf at five weeks old, and my son was diagnosed before birth. They both were breastfed and we used applesauce to give them enzymes. My kids actually did better with breastmilk than formula. Breastmilk has a lot of benefits for a baby especially one with cf (easy on digestive system, DHA). You are a sweet friend!
Sharon, mom to Sophia, 3 and Jack, 15 months

 

[anonymous]

Hi,when my grandson was diagnosised with cf,he was also put on the enzymes just shortly before we went home with him.And beleive me when I say it made a world of difference.Because he had gained so little weight while he was in the hospital.We also had to pop open the capusles and put them into applesauce,taking note the baby food needs to be acidic in order to give him the enzymes.Why well if you don't then the little grains of enzyme breaks down before his food hits his stomach and that beats the purpose of giving him the enzymes.Also you need to make sure he gets them at every feeding,you also will notice a difference in his bm's as he gets older,more than he used to put out and very smelly,but you do get used to the quanity and oder.As far as the treatments go he did not start them right away .He had came down with staph and pseudomonas which at that time they started the breathing treatments.There is alot to caring for cf but I feel if my daughter at the time she had him was only 16yrs and is doing a wonderful job can do it anyone should be able to do this.I should say I'm very proud of my little boo bear,for all she has gone through and will go through with having this special little gift god has givin her.So keep your chin up and if in doubt we are always here to answer any questions you my have. sandi

 

[anonymous]

Thank you all very, very much for your time and thoughtful comments. To "mom of jason" ~ You are very kind to offer the book but actually we're not in the US! but I'm sure my friend will get one. You're all really appreciated. Thank you.

 

[anonymous]

My son, now almost 7 months, was diagnosed while I was pregnant. He is brestfed and started enzymes around 2 weeks. He also started on vitamax but he got sick everytime he took it so I stopped giving that to him until I could mix it with solids. He does fine with it now. The enzymes, I give him before every feeding in a spoonful of applesauce. I was very reluctant at first, being so young, but so far so good. His weight gain is great (75%) and he doesn't have any other issues<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[MasonsMom]

Exaclty how young did you start doing the applesauce trick for the enzymes? My son is 2 months old and we are having an extremely hard time administering his enzymes. We have to break the capsule open and give him half of the enzymes. Right now I am just getting my finger wet with his saliva and placing my finger in the "dots" to make them stick, and then sticking my finger in his mouth. Needless to say, we end up with "dots" all over the place. It is getting rather frustrating. Also, I haven't quite yet figured out a way to keep the other enzymes from the capsule. If anyone has any suggestions they would be GREATLY appreciated.

Velvet
mother of Mason 2 mos old w/CF

 

[anonymous]

Velvet-
You can start using applesauce with infants in their first week of life. My son was two weeks old and my daughter five weeks old when they started enzymes with applesauce. It works much better than just using your finger.
Sharon, mom of Jack, 15 months and Sophia, 3 both with cf

 

[anonymous]

Velvet - you can buy medicine cups from your local pharmacy and dump the whole capsule into it - then just dump half of it out into your sink before you put the applesauce in. Just a little applesauce does the trick. Take it easy and give it a try! I find when I forget my applesauce and I try to give him the enzyme on my finger he ends up choking on them... he also likes prunes but be careful as you don't want him to have to many.... thanks!

 

[anonymous]

Velvet- As the previous poster stated, you can find pill containers at the local pharmacy. We bought the multi-colored plastic round onces that attach to the tops of each other. (They form a little tower.) When we have had to do halves, we open the capsule and pour the beads in, then we pour out about half of the beads into another capsule. That way you don't waste half a capsule in the sink. Enzymes aren't cheap! We also try to fill up as many containers at the end of the day to prepare for the next day.

Also, for those who don't know, ask your CF center about the "Wee Care" program, it provides enzymes free for two years.

Maria (mother of three daughters, the youngest, Samantha, w/CF)

 

[MasonsMom]

Thank you all so much for your information and suggestions. I think I will be buying us some applesauce tomorrow and looking for a pill container. I am so excited! Hopefully we won't choke him anymore trying to get the enzymes in his little mouth. Thanks again!

Velvet

 

[anonymous]

Can you give me anoymore information on the formual study? My daughter is already 9 months old, but we would love to participate if it means free formula delivered to your door! I searched on the CFF.ord website and can't find anything, please e-mail me any information you have on it !! Thanks!

Quaintancer15@msn.com

Becky, Mom to Nathan 1-15-05 w/o CF and Hayley 2-20-04 w/CF

 

[anonymous]

I have a daughter that was born with cf and at the age of 3 weeks is when we found out. We started her on the enzymes right away. We mixed it in with applesauce, this is the most universal food at this age. She is now 9 months and gainging weight and growing well. What I was doing was sprinkling the medication on not only appelsauce buit like her veggies and other fruiy. We just met with the nutrionalist and they mentioned that applesauce really should be the only thing, beacuse some of the other foods are more acidic and have other things in it that it exaclly aborbs the enzymes so that it actually will not break down the fattys when they get in the body. The hospital that we go to is wonderful and I would not do anything to change they are our new family. Let me know and I can send you some information jsdean9@aol.com.


bethanys mom

 

[anonymous]

Juat a note, our CF clinic told us never to use the second half of an enzyme. They said to always throw out what we did not use after each feeding. Regarding the formula study - your baby has to be less than 8 weeks old to participate. This is the link for more information. It is the DHA study. Thanks. http://www.cff.org/UploadedFiles/research/files/CFFT%20Pipeline%2010-04.pdf

 

[anonymous]

Our CF team has seen how we split the enzymes into pill containers and has never told us to throw out the other half. In fact, it was on their advice to put the halves in separate containers. Just curious to see how others handle this situation/or have been advised. Also, our daughter has been receiving her enzymes in this manner for almost two years and we have not had a problem outside of the normal increasing of enzymes as her weight increases.

Maria (mother of three daughters, the youngest, Samantha, w/cf)