Infant Treatments

[Salli]

I was wondering what treatments most families do for their cfer. I
do CPT twice a day and give Creon with every feed but Archie is not
on any nebs or inhalers yet. I am going to my paeditrician on
Wednesday and was just wondering whether I need to ask any
questions on other preventative treatments like nebs etc.<br>
<br>
Do any of you suggest other treatments - he is well at the moment
with no lung congestion.

 

[dyza]

Hi salli<br>
our boy Craig,has his CPT twice daily, three times if he has a cold
or whatever. WE are lucky enough in that he does not need creon. In
between i like to get down on the floor with him and pretend fight
,the roughfer the better, get him laughing,much better thanCPT. He
takes his other meds without any fuss.get him used to the cpt while
he is youngthat way when he is up and toddling about, you will find
it easier to do,well thats the theory.<br>
Craig

 

[anonymous]

Hi Salli,

I have a 16month old daughter with CF. I only do CPT once a day, that is what her pysio said and 2-3 times a day if she is unwell or has a cough.
He aslo stated that there has not been any proven facts that CPT actualy works in infants/children.
I also give her enzyme with food (approx 10 a day) and and antibiotics twice a day. The antibiotics are just as a precaution for the first 3yrs of life and than she goes off them, unless she is unwell. Thats what our doc's like to do at our clinic.

You mention Archie is not on any nebs (that's a good thing). Not everyone will be on nebs, instantly. CF affects everyone in diff way's and you can't compare treatments and/or illness. For instance i talk to 5 diff mothers who all have chn with CF bellow the age of 2, all of our chn have had diff symptom's from severe to moderate, from 5 hosp addmiss to none.

Hope this helps
Eli (oops didn't log in again)<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[anonymous]

My 3 year old w/CF gets zantac twice a day in addition to the creon because his Dr. said that the enzymes work better with a less acidic stomach (& acid stomach is attributable to the same blocked pancreatic duct problem as the lack of enzymes).

He also takes pulimicort via nebulizer as a maintenance drug every day and vitamins: ideally the vitamins are a watersoluble version of vitamins a, d, e, k but lately he's not wanted to take them so we've substituted children's multivitamins.

That's it for maintenance. If he's had a cold he gets albuterol and maybe an antibiotic. When he's cultured pseudomonas, he gets Tobi.

 

[anonymous]

I have an almost 4 month old. Kaden takes Pancrecarb enzymes, Xopenex .31 3x a day, Pulmozyme 2x a day, Cromolyn 4x a day and has CPT 3-4x a day. Plus Zantac, ADEKs, Ursidol, Zithromax, extra vitamin d and k. Its a lot but at 4 months old he's only been home from the hospital a total of 10 days. The rest has been spent in the PICU, NICU or otherwise in the hospital

To contrast that. My 16 year old takes Xopenex or Albuterol 2x a day. Ultrase, a multi-vit, Asmanex, Spiriva, hypertonic saline 3%. Inhaled GSH, calcium and zantac. My 11 year old takes the same except Creon and not Ultrase. Both use an Acapella 2x a day.

 

[Diana]

Both my girls have CPT twice per day. It does almost seem pointless BUT it actually does work. I didn't realise it until my eldest turned 4 and started to bring up her mucus (she didn't know how to prior to that) and by her huffing and coughing I can tell everytime if she has any congestion. 95% of the time she is clear but the other 5% when I hear some congestion I increase the CPT to longer sessions and maybe 3 times per day. My youngest hasn't had any congestion yet but it is good for her to get use to it from a young age.

They both take creon of which my babies symptoms are more severe. Mikayla takes water soluble vitamins but I have not yet started the baby on them.

My baby also takes augmentin twice per day as a preventative.

Nebs have only been used when Mikayla has had a persistent infection or cultured a bug. She hasn't had them for over 18 months now and Elisha hasn't been sick at all yet but she will follow the same routine.

My girls don't have asthma or constant infections so they don't have many preventative treatments.

 

[anonymous]

My son is 9 yrs old. He was diagnosed at 6 mos old. Since then he takes pancreatic enzymes with food, 2 multi vitamins and a vit E every day. We do percussion and albuteral treatments once a day unless has a cold. He has been on tobi only 1 mo because of pseudo. He has alot more sinus problems so far instead of lung - 3 polyp surgeries. But he's been pretty healthy lately. Was hospitalized at 8 weeks and 6 mos before diagnosis but no hospitalizations since then. Last Sept had intersepsession(? Sp) where his sm and lg intestine overlapped each other - I guess can be common if get constipated. A barium enama fixes that.

Mother of 9 yr old boy w cf

 

[anonymous]

DS was diagnosed shortly after birth due to an intestinal blockage caused by Meconium Ileus. While I was on materinty leave I did CPT 4 times a day with .25 ml albuterol and a 1.25 vial of atrovent, we now do it 3 times a day with albuterol and atrovent. If he gets sick, we do an extra treatment in the middle of the night. Doctor told us an absolute minimum of 2 x/day cpt -- the more the better.

He was on zantac for reflux -- he isn't anymore. He's still on actigall, keflex and adeks. He's also now on zithromax 'cuz he cultured HIB last fall. He's also on pulmozyme and tobi nebulized. He's 2 1/2 years old

Liza

 

[thelizardqueen]

I was old school growing up (in other words - nebs weren't really around), no nebs, but CPT twice to three times daily, along with Creon and oral antibiotics when sick. To this day my lungs are clear for the most part.

 

[Haileysmommy]

Hailey is 14 months. She takes Ultrase, ADEK, Miralax, albuterol, Flovent, and she just finished Tobi. She was on Omnicef(antibiotic) from Sept till March. We do CPT twice daily.

 

[anonymous]

Danny is 22 months. He was diagnosed at 2 days old. Right now he is on Creon 5, Pepcid, Vitamax, Vitamin K, Albuterol (via spacer--2 puffs with each CPT), and Pulmozyme. Since day one, we have always done 2 CPT treatments per day(unless he isn't feeling well, than more). He has been on Albuterol and Pulmozyme from the start.

 

[anonymous]

Whoops! that was me above.

Nicole

 

[Mairi]

Hi

Our son is 17 months and was diagnosed at birth due to meconium ileus. Since diagnosis he has been on Flucloxacillin 2 x daily, Vitamin E, Abidec or Dalivit and Creon 10 000. Till he was 6 months old we did chest physio twice a day. At 6 months our physio introduced him to the PEP mask. We are getting on great with this and he has this in the mornings and normal physio before dinner. During times of illness (no chest infects as of yet, touch wood!) colds, etc he is changed to Augmentin Duo 2 x daily and we increase his physio also. Interesting to read treatments other children recieve as we live in Scotland.

Mary

 

[anonymous]

My daughter wcf will be 3 in June - she takes Creon 5 and does 30 minutes of the Vest each day. She did 4 rounds of TOBI just after she was diagnosed at 12 months old bc she had pseudomonas in her throat culture but hasn't cultured it for 1.5 years so she is coming up on a year w/o doing TOBI. Other than that, she has done no regular nebs. Her lung function is normal and so far she shows no sign of lung involvement (although she definately has pancreatic involvement) she has been very healthy overall. Although there is definately a majority of pwcf that show classical symptoms, there are definately those who don't or those who don't as soon as another might.

HTH!