Bella's-mom
New member
I have a 9 month old with cf and just wondering what other parents are doing for treatment, what meds are you kids on. Any tricks of the trade.
baby care for a cfer
- Thread starter Bella's-mom
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Aboveallislove
Super Moderator
Unfortunately, the doctor's don't tell you everything or know everything, so I think it's a great idea to compare notes--wish I had--it would have saved us a hospitalization for DIOS! I'll type up some thoughts later but need to go play with dear son. hugs dear mom.
Marina Louise Oneill
New member
my daughter is almost six months old and she is on zantac , neb and chest pt she see her doctors monthly
S
SarahProcter
Guest
Bill, I am totally with you on the fact that treatment plans need to come from a qualified CF doctor participating in a certified CF center. But that doesn't mean that there's nothing that parents can valuably share with one another. Doctors may well prescribe enzymes to be taken when breastfeeding, for example, without necessarily having any first-hand experience with breastfeeding, or with giving an infant enzymes! It can be really useful to talk to another parent who is doing the same things hands on. A mom looking to compare notes may well be being proactive, not disregarding of appropriate medical advice and treatment plans. Telling her that "CF is not a runny nose" implies that she is stupidly trivializing the condition, which seems uncalled for given her post. Also, it can be useful to compare what advice is given by different CF centers. At the moment, UCSF and Stanford have distinctly different ideas about the best treatments for my daughter, which is troubling, to say the least. Getting feedback about what other families are doing can provide insight into what to investigate with your CF center; and if it turns out that ones child is being given much less treatment (or radically different treatment) than many others, it might be a red flag to seek a consultation with another certified CF center.
IMO, Keeping the lungs happy and healthy by doing cpt and nebs at least twice a day even though there aren't symptoms is important. Making sure family members who are in close contact with your child wash their hands, are healthy AND that they along with your child get their annual flu shots.
While I was on maternity leave we did 4 cpt treatments a day. We dropped down to 3 when I went back to work. DS was on cf vitamin drops, additional a & e, vitamin K. Because he had issues gaining weight we supplemented his formula -- more powder to water ratio based on doctor/dietician instructions. When he was 6 months old we introduced solid foods -- added butter, oil and salt to his baby food. He also ate a lot of what we did ground up. Because he went to daycare his doctor put him on a prophalactic antibiotic. He was also on actigall because his liver numbers were high while he was in the NICU. Nebulizer treatments were albuterol and atrovent with CPT. He started Tobi at 3 months due to a pseudomonas infection.
While I was on maternity leave we did 4 cpt treatments a day. We dropped down to 3 when I went back to work. DS was on cf vitamin drops, additional a & e, vitamin K. Because he had issues gaining weight we supplemented his formula -- more powder to water ratio based on doctor/dietician instructions. When he was 6 months old we introduced solid foods -- added butter, oil and salt to his baby food. He also ate a lot of what we did ground up. Because he went to daycare his doctor put him on a prophalactic antibiotic. He was also on actigall because his liver numbers were high while he was in the NICU. Nebulizer treatments were albuterol and atrovent with CPT. He started Tobi at 3 months due to a pseudomonas infection.
At that age, our mornings including two puffs of albuterol, 15-20 minutes of nebulized pulmozyme, and 20-25 minutes of CPT (6 positions, 20 spots to pound for a minute each.) In the evenings, it was a repeat of the albuterol and CPT. (As a side note, our clinic said we only had to do CPT once, but EVERYONE else I've heard from does it twice, so we do it twice too... I'd rather do it too much than too little.) When he's sick or has a runny nose or small cough we do this 3 times a day.
He was on enzymes, CF vitamins, D-vi-sol (vitamin D since he was breastfed), reflux medicine (zantec and prevacid... although now these aren't working at 15-months-old, so we're trying to find something new), Miralax (he had obstruction problems otherwise).
Now, at 15-months-old, he's on a lot more calorie supplements and an appetite stimulant. (He won't swallow any solid foods outside of his enzymes and a touch of puree mixed with a little bit of crushed crackers.) So, his bottles are made up of a mix of pediasure peptide, half-and-half, whole milk, MCT oil, and duocal. (If you're having problems with weight gain now, you can also ask about adding duocal to his bottles, and you can test MCT oil, although you have to be careful of allergies since it's created from coconut oil.)
He was on enzymes, CF vitamins, D-vi-sol (vitamin D since he was breastfed), reflux medicine (zantec and prevacid... although now these aren't working at 15-months-old, so we're trying to find something new), Miralax (he had obstruction problems otherwise).
Now, at 15-months-old, he's on a lot more calorie supplements and an appetite stimulant. (He won't swallow any solid foods outside of his enzymes and a touch of puree mixed with a little bit of crushed crackers.) So, his bottles are made up of a mix of pediasure peptide, half-and-half, whole milk, MCT oil, and duocal. (If you're having problems with weight gain now, you can also ask about adding duocal to his bottles, and you can test MCT oil, although you have to be careful of allergies since it's created from coconut oil.)
morgan0713
New member
Hi, since day 2 of life we have been using enzymes. Our CF'er is almost six months and is still BFeeding and going on stage 1 foods. So easy to get his salt in the veggies. He hated the salt prior to getting solids, we would have a clean finger, get it wet and dip it in the salt and ambush him. He made such a yuck face! Probably since about a month, we started with 2 a days of CPT (14 regions at 3 minutes each) and transitioned pretty quickly to albuterol puffs (2X a day.) It seems like we have always had a prune (diluted with water) bottle daily, sometimes 2x a day to help keep everything going (our pulmonologist doesn't like Miralax for babies.) We used it a couple of times and didn't care for it either, the prunes seemed to be more natural... Also, vitamins, started out with SourceCF, but he would vomit and gag every time we gave it to him. We switched to Aquadeks and he takes it much better, though it smells the same as the other. So, normally, we have enzymes, CPT (2 if we can get a third, we do,) prune bottle, vitamins (Aquadeks,) salt and albuterol 2x daily. (Seems like a lot, but isn't that bad.)
Since he has older brothers, he has gotten two colds and during that time we were on antibiotics and doing CPT 4x a day with either puffs or nebulized albuterol. We start with the 4 the minute we hear a cough (he doesn't normally have one) and get into our pedi (who trained our CF pulmonologist) quickly. Since she is just a normal pedi who specializes in CF, we can get into her much quicker than our clinic. This seems to knock everything out within a week.
Hope this is helpful!
Since he has older brothers, he has gotten two colds and during that time we were on antibiotics and doing CPT 4x a day with either puffs or nebulized albuterol. We start with the 4 the minute we hear a cough (he doesn't normally have one) and get into our pedi (who trained our CF pulmonologist) quickly. Since she is just a normal pedi who specializes in CF, we can get into her much quicker than our clinic. This seems to knock everything out within a week.
Hope this is helpful!
Bella's-mom
New member
Thanks for all the replies.
At the moment she's on Prevacid, creon, aquaADEKs, ventolin, pulmocort, pulmozyme and amoxicillin for a chest and ear infection. We are doing cpt for 30 minutes three times a day. She is breastfeed and supplemented with hypoallergenic formula. She's not a good eater and vomits frequently. She's not good with any textured foods and gags and vomits. Weight gain is slow but she's around the 25th percentile .
At the moment she's on Prevacid, creon, aquaADEKs, ventolin, pulmocort, pulmozyme and amoxicillin for a chest and ear infection. We are doing cpt for 30 minutes three times a day. She is breastfeed and supplemented with hypoallergenic formula. She's not a good eater and vomits frequently. She's not good with any textured foods and gags and vomits. Weight gain is slow but she's around the 25th percentile .
Bella's-mom -- If she gags and vomits a lot, you should pay attention to her reflux. Does she have a lot of symptoms of uncontrolled reflux (even on prevacid)? Hiccups a lot, burping, can you feel stuff moving back up if you put your hand on her back? Our son has been on zantec, prevacid, and is now on prilosec. We're taking him to a gi specialist at another hospital in a couple of weeks to see if we can get the reflux under control. It has caused huge problems with his eating solids to the point where now he won't swallow anything but his milk. If I knew it was a reflux issue several months ago, it might have made some difference in our quality of life now. Our cf team wasn't great about being proactive with the reflux and didn't do much about it until we started forcefully insisting.
EVERYBODY:
She asked about MEDS AND TREATMENTS. Breastfeeding I would have left to all of you.
She is new and this was only her 7th post.
Bill
Hi there,
At 9 months my son was taking his enzymes, Zantac, CF Vitamin drops. For his lungs we did CPT twice a day for 30 mins, that was after his 2 puffs of albuterol w/spacer. During his evening CPT he would, and still does nebulize Pulmolzyme. As a baby he received Synagis shots during the fall-winter for the first two years.
My crazy mom tips would be toss out the tub/shower mats (They harbor nasty mold & bacteria under them). Same for bath toys & sponges. Keep a clean and healthy home, do your best to avoid people w/colds. Stock up on Purel & Wetones. Love Wetones for wiping down shopping carts & public highchairs. I tried my very best for my sons first 2 years to prottect him from what ever I could. Now he is 5, and he participates in everything he wants. Swimming, PreSchool, Gym Class. We let him live, and just pray & Purrel
Sarah
mommy to Johnny 5 w/cf & bailey 3 no cf
At 9 months my son was taking his enzymes, Zantac, CF Vitamin drops. For his lungs we did CPT twice a day for 30 mins, that was after his 2 puffs of albuterol w/spacer. During his evening CPT he would, and still does nebulize Pulmolzyme. As a baby he received Synagis shots during the fall-winter for the first two years.
My crazy mom tips would be toss out the tub/shower mats (They harbor nasty mold & bacteria under them). Same for bath toys & sponges. Keep a clean and healthy home, do your best to avoid people w/colds. Stock up on Purel & Wetones. Love Wetones for wiping down shopping carts & public highchairs. I tried my very best for my sons first 2 years to prottect him from what ever I could. Now he is 5, and he participates in everything he wants. Swimming, PreSchool, Gym Class. We let him live, and just pray & Purrel
Sarah
mommy to Johnny 5 w/cf & bailey 3 no cf