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madiha shaikh
Guest
My baby has recently been diagnosed as a CF.she is just seven months old.delta508 positive.i wanted to know is it better to give creon before formula milk or some solid foods?
Aboveallislove
Super Moderator
Congrats on your little one. So sorry re the diagnosis. Big mama hugs. They should have croon before any food at dosing directed within daily limits.
I'd always sprinkle the beads on a spoonful of fruit, followed by a bottle or food. When DS was an infant, I was concerned that he might not get all the enzyme beads rinsed out of his mouth if I fed him those during or after his meal. The cystic fibrosis foundation has some publications regarding enzymes and feeding for different ages. Here's the toddler one -- know they also did infant, school age, sports... http://www.cff.org/UploadedFiles/tr...ion/ForToddler/Nutrition-For-Your-Toddler.pdf
My daughter was 3 1/2 weeks old when diagnosed (now 6 years old) she was fed breast milk and formula for the first 6 months, then strictly formula and she ALWAYS had Creon first. Check with CF doctor and they'll help you determine how much but it should always be given first. My daughter to date is a terrible eater but we rarely let her eat anything without first having enzymes. Oddly enough we just recently found out that she is not pancreatic insufficient. Her diet is mostly liquid but she seems to be getting everything she needs from it and has become a little more adventurous in trying "real" food. Good luck. This is a great place to just talk things through that you aren't sure of.
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madiha shaikh
Guest
Thank you so much for replying.I really need help from you guys as i am very new to it.loads of questions in mind.The big confusin i have is regarding the dose.the prescribed dose is 5000 units.doctor said to take it two times 2500 units each.but the baby takes meals and milk more than two times obviously.so does it mean all the food that she takes without enzymes is a waste? Can i split it into five doses? Is it going to work well?
Aboveallislove
Super Moderator
Please call your cf doctor to clarify because I believe he meant to take two with each meal. No one prescribes two total. It is always scripted by meals and snacks, but call to make sure you are clear on dosing.
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Murphysmama
Guest
Congrats on your little one! It's so tough after the diagnosis. Hang in there - you can do it. Ask lots of questions when you aren't clear and you are already doing that so good job! I found it really challenging to get the nursing and enzymes all straightened out at first. I made myself a checklist that had nurse time, enzyme dose, vitamin dose, antibiotic dose, wet/dirty diaper and pt times. Basically everything i needed to do cf wise daily. After I recorded everything for a couple days I noticed trends and that the number of feedings per day were pretty consistent. I would get worried if ds wanted to feed too close together but once I saw the overall pattern I was able to feel more confidant about it. I took my checklist with all my notes into my appts for the first year and had the doc or nutritionist review ds eating schedule and dosage. They would always give me number of pills and then we would talk it through into snack dosage and meal dosage.Even today I make sure to get the max enzyme dosage per 24 hour period. The only time we don't give enzymes is with water or fruit. Best wishes and please keep us posted.
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Murphysmama
Guest
I'm with love. Definitely call the doc. Even when ds was less than one month old he had more than 2 pills per day.
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madiha shaikh
Guest
THANK YOU SO MUCH GUYS.i am very happy to see that there are so many people out there to help me.i was so much depressed .it was such a emotional breakdown i faced.but i have accepted the reality and decided to fight for my little one.i know its not an easy job but if it is something that was destined to happen.
Yes you are right.i have searched alot reagrding the doses too.the recent guidelines say to give minimum of 2000 units per 120ml milk.I am getting on the track now.it will take some time to understand.working so much hard to give my baby high calorie diet so that she puts on weight.she is just 4.2 kg right not and 7 months old.i am hoping for the good results.
I want to confirm if it is right to nebulize while the baby is asleep?actually she is so much reluctant when she is awake.and that ultimately shorterns the duration plus during crying the inhaling thing is short .just want to make sure.plus can somebody tell me good techniques how to make her chest clear.i am not sure if its working or not.at first she used to vomit it out.but now shes dont?does it mean she is engulfing it ? I know i might sound stupid.but i am a learner right now.
Thanks guys for being there.
Yes you are right.i have searched alot reagrding the doses too.the recent guidelines say to give minimum of 2000 units per 120ml milk.I am getting on the track now.it will take some time to understand.working so much hard to give my baby high calorie diet so that she puts on weight.she is just 4.2 kg right not and 7 months old.i am hoping for the good results.
I want to confirm if it is right to nebulize while the baby is asleep?actually she is so much reluctant when she is awake.and that ultimately shorterns the duration plus during crying the inhaling thing is short .just want to make sure.plus can somebody tell me good techniques how to make her chest clear.i am not sure if its working or not.at first she used to vomit it out.but now shes dont?does it mean she is engulfing it ? I know i might sound stupid.but i am a learner right now.
Thanks guys for being there.
It's fine to nebulize while sleeping. DS would actually fall asleep during his chest physiotherapy (CPT) treatments. Here's the handout we got when DS was a baby. http://www.childrensmn.org/Manuals/PFS/ChildDev/187862.pdf Basically avoid the spine and below the ribs.
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madiha shaikh
Guest
Thanks.it will help alot
I know it is stressful for you when your child is crying and you are trying to nebulize medications but try not to shorten the treatments. When the child cries they actually take deeper breaths, thus the meds will go deeper into their lungs. My daughter was much older when we started nebulizing and vest treatments but once we did it was never optional and overall I think her relative good health is a result. To date she is a terrible eater so enzymes are sometimes a challenge. At school she was being given 3 capsules with snacks and 6 capsules with meals. Once we found out that she wasn't really eating am/pm snacks that was stopped and she only receives 6 with meals. Too many enzymes can be detrimental as well. The first few years were very depressing because her weight gain was terrible. She once had a BMI of 4%. We actually changed CF Clinics and even though she is still not a stellar eater, my husband and I are not made to feel that we are starving her. Her most recent BMI was 49%, that may not be great but she is super tall for her age, very energetic and has not required ANY hospitalizations. Keep asking questions here and of your CF care team. Care of a CF patient never becomes easy but you will develop a routine that works for your situation and any deviation will be very apparent to you.
Hello Madiha, lots of love to you. Can I ask if you have a CF team? over in the UK we do, and they take care of so many of these questions for you. If you have a team assigned, get them working on your behalf, you need their support as its a lifelong journey together.
Do ask us parents anything you like though, experience counts for so much! Our daughter was diagnosed at three weeks from the heel prick and we felt as though our world had ended. I really understand how devastating it is. Our daughter was a month prem and only on the 0.2nd centile, we were so worried for her... She is now two years and three months and just short of the 91st centile! She has a clear chest, no damage, she scored zero on her x ray! She plays with other kids and gets into all their messy play (with me watching closely) and CF honestly doesn't spoiled her life at all. She wants to be a runner, although astronaut and motorbike star are both new ambitions just now!
Please be reassured that your child can and will have a great life. It's so hard at first, so do feel free to message me and have me as a contact. It was only by talking to other parents that I realised CF kids nowadays have a brighter future than ever. There is sadness out there, but much joy too. Reach out and people will be happy to share their stories.
much much love and congrats on your lovely new baby,
kate x
Do ask us parents anything you like though, experience counts for so much! Our daughter was diagnosed at three weeks from the heel prick and we felt as though our world had ended. I really understand how devastating it is. Our daughter was a month prem and only on the 0.2nd centile, we were so worried for her... She is now two years and three months and just short of the 91st centile! She has a clear chest, no damage, she scored zero on her x ray! She plays with other kids and gets into all their messy play (with me watching closely) and CF honestly doesn't spoiled her life at all. She wants to be a runner, although astronaut and motorbike star are both new ambitions just now!
Please be reassured that your child can and will have a great life. It's so hard at first, so do feel free to message me and have me as a contact. It was only by talking to other parents that I realised CF kids nowadays have a brighter future than ever. There is sadness out there, but much joy too. Reach out and people will be happy to share their stories.
much much love and congrats on your lovely new baby,
kate x