WELCOME HOME Ashton!!

[ashton2005]

Hello everyone jsut wanted to let you know that Ashton is home and here we go!!! He came home yesterday evening and slept really well last night.... We right now are doing CPT 4 times a day and he is on Ursodiol, prilosec, ADEK, IRON and albuterol and CPT every day.. Does anyone have babies that absolutely do not like there prilosec if you do do you have any reccommendations on how to get them to take it we have tried mixing it with chocolate syrup that didnt work so im open for suggestions.. other than that he is doing good... I think the next 4 weeks we see a DR a week so that helps me a little with making sure everything is going good..

Christi
Ashton 10 weeks w. c/f
Abbi 5 yo w/o cf

 

[anonymous]

Congrats! Sounds like you are really getting your routine figured out with him at home!

Hugs from a fellow Hoosier,
Kelli - mom to Sydney 2.5 wcf

 

[anonymous]

Hopefully he'll get used to the prilosec. DS hated ADEKs at first and zantac. Luckily they were tiny amounts to start with. When we first started we put the zantac in a nipple from a bottle and he sucked on it... I have seen medicine dispensers at Walmart that are pacifiers.

Later we switched to a 1 ml oral syringe and squirted it into his cheek area and quickly stuffed a pacifier in, so he's swallow it. After practice and a couple of days, it didn't bother him anymore. Only problem I've had in more recent times was septra and non-flavored milk of mag --- spewed it out like a fountain. Bleah!

Liza

 

[JazzysMom]

If the prilosec is in liquid form I suggest those medicine droppers that are used on newborns. I used one with my daughter for any liquid meds to bypass the taste buds. Some of them are pretty nasty!

 

[anonymous]

My problem with the medicine dropper was by the time I'd get across the room with the dropper of adeks to give to ds, I'd lose some or all of it along the way. Especially if I had to chase him down. I started keeping it on his changing table and give it to him right away in the morning and at night when I changed him, but with all the medications we have to keep track of, it's easier to just measure out everything the night before into different oral syringes and keep them in a baggy in the fridge. Different size syringes for different medications right now 'cuz it seems like three of them are different shades of pink and are cherry flavored. Liza

 

[debs2girls]

Christi I am so glad to hear Ashton is home...that is great news. You will be an ole pro at his meds in no time...give him extra kisses for me..
Debbie

 

[HD]

Some pharmacies can add flavoring to the prilosec liquid. That helped when we were on Zantac.

 

[ashton2005]

Thanks for your replies everyone! Yea i just started putting the prilosec in his bottle.. Hopefully his CPT will go down to 2 times a day here soon... Kelli where are you fromin indiana!

christi

 

[anonymous]

Christi, I am south of Fort Wayne (little town called Bluffton). Sydney goes to Riley. I remember you said that Ashton would be seeing a private pulm rather than the cf clinic - how is that working out so far? Sounds like he is on the right path!

Kelli

 

[anonymous]

It is working out pretty good. we will wait and see after he starts going to appointments... but i think that they are on the right path.. how often are you guys doing CPT on your babies?? He just got over staph aeurious so we are at 4 times a day!

christi
Ashton's mommy

 

[damiengrandma]

Damienis also 4 months old. We started out at 2x.He got phenumonia and after that we do 4x cpt. Damen has spent half of hes life in hospital and born at 3 pounds 2 months premature he has had a hard go at it. I am glad to hear you guys are home,I wish you the best.

 

[Caleblove0802]

Hi Christi!

I am so happy your baby is home with you now. Wanted to let you know that my son is 5 mos old and the clinic tried putting him on zantac and he hated it. So I was told by another member to this forum to ask our doctors if we could try prevacid. So we did...and it is SO easy to give to Caleb. I don't think he really even notices. The prevacid is a cherry flavor...just a faint flavor. Maybe that would work for you. Caleb was put on prevacid when he was about 8 weeks old.

Melissa
1 son-Caleb 5 mos w/cf

 

[Caleblove0802]

Sorry....I forgot to also let you know that Caleb is just getting over having RSV. So he is on cpt 3-4 times per day as well as DNase/Pulmozyme, albuterol, bactrum, and just finished prednisolone.

Melissa

 

[fourkidsmom]

Christi- Congratulations!!! Just an idea Brady was on Prilosec and because of insurance issues we had to change to prevacid--which I like giving to him much better because it is a pill form--just like enzymes.

Just an idea- may want to see what your doctor tells you.

Angie
Step-Mom to Brittany 13 no cf
Mom to Tyler 12 no cf, cf carrier
Mom to Brady 4 with cf
Mom to Taylor 3 no cf, but chromosome 9q deletion q21.2 q22.1

 

[anonymous]

When I was home on maternity leave, we did CPT 4 times a day. And sometimes when we're just sitting somewhere, like in church when DS gets a little ansty, I do a mini-cpt session. Seems to calm him. His doctor told us absolute minimum was 2 times a day but we really should do it more often to keep DS -- we do it three times a day -- about 3-4 minutes each position, 4 times a day if he develops a cold or cough. We do it right away in the morning, when we get home from work and before bed.

We were told not to put medication in the bottle because ds hardly ever finished a bottle, so he wouldn't get all his medication, plus if he hated the medicine, he might associate the taste of the medicine with eating and start refusing to drink his formula. I know some people mix a little bit of medication with some juice.

 

[rose4cale]

Christi, so glad to hear Ashton is home! I can't help you with the meds, because Cale loves his. He even reminds me if I forget one of them. He's on ADEKs, (loves them?) Zantac and Ursidiol. He takes them like a pro and always has. I am very fortunate he is such a good patient. He just got the vest in December and does that like it is a massage appt. It relaxes him. He's even woke me up in the middle of the night to ask for a treatment!! I recommend it when Ashton gets bigger!!!