How do you do "normal?"

[Aboveallislove]

How do you do "normal?" This isn’t really a vent, or a frustration, so much as truly a bafflement for me, because I’m fine with our "normal," but it seems like everyone else has time for the "normal-normal." But how????? This is our typical day:

730: Wake, potty, dress, come down for treatments
8ish: Zantac and start treatments
845: Finish morning treatments (sometimes need to stop the vest in midst)
845-9: I make breakfast
9-10: Eat breakfast with tummy ache poop calls interrupting; and clean kitchen
10-1015: Break (for me)
1015-10:30 Do pulmozyme and Qvar; brush teeth/wash face
1030-1145: Play time (or tummy ache poop/rock time)
1145: Make lunch
12-1: Lunch/book
1-330: Nap time
330-4:30: Play time
4:30: Make dinner/craft time
5:00-6:00: Zantac, Prilosac; night treatments
6-7: Dinner time; Clean kitchen
7-830: Play time (or tummy ache potty/rock time)
830-930: Book time/get ready for bed.

This is during a good week. When GI issues brew, the morning and night include an hour (or more) of rocking and potty (real and false alarms), instead of the scheduled play time. So how do you do "anything? Just Sunday, we decided to go for a drive and pick up some Valentines for co-workers. Half-way to the destination, DS started screaming "potty, potty," even though he had gone before we left. Luckily we were by the inlaws and then about 30 minutes later–because of tummy ache–we got back in route and by then it was time to turn around to get home to do the treatments. I guess I’m just baffled by how anyone does anything normal? Or is it because the GI stuff just isn’t that bad for others that the constant potty/rocking, etc. isn’t part of your schedules??

 

[JENNYC]

We use to do the potty thing before we were diagnosed, and I remember thinking how awful it was. We carried a little kids potty in the back of the suburban because where we live and on the way to dr appt's 3 hours away there is just beautiful country side with NO bathrooms!! And even in town when we were at brothers soccer games she used the potty in the back of the car because the bathrooms at the part I would literally be afraid to go into myself for all the spiders and mold and just plain filth! Since being diagnosed we don't have those problems anymore as enzymes answered that prayer and it breaks my heart for you that it didn't yours!! I can't imagine Abby being in pain every day!
Our routine is:
6:00 - wake up, snuggle time while doing albuteral puffs
6:10 - vest, hypersal...while I make breakfast
6:45 - wake Clayton and eat breakfast
7:00-7:30 sinus rinse and getting ready for school and work
7:45 - drop kids off at school
8-5 - work
5:30 home and get hubby off to work
6 - homework - cleaning for me
7 - start treatments (albuteral, vest, hypersal, pulmozyme) - supper fixing for me
8 - eat supper and watch a little tv with my pumpkins
9 - sinus rinse and bed time
9-10 (mommy calm down before bed time)

and somehow on Mondays we manage to go to Bryan and are there by 5:30 for gymnastics which ends at 6:30.....then we quickly run by Target and Walmart grab a fast food to eat on the 45 minute drive home and then do meds and rush to bed hopefully by 10! But they love gymnastics!!

 

[Ratatosk]

We've been fortunate in that DS has always slept thru his morning treatment, only change for us in this routine is weekends we let him wake up on his own.

5:45 am -- Alarm goes off and I strap DS into his vest and Albuterol/Atrovent nebs and I run shower.
6:15 am -- vest stops and I start up the Tobi. When Tobi is done, let DS continue to sleep.
7:20 am -- wake up DS.
7:30 am -- breakfast and morning meds
7:55 am -- out the door for school & work
Noon -- I boil neb cups, organize meds, sometimes I throw something in the slow cooker for supper
5 pm -- pick up DS from daycare -- sometimes snack and drink in the car
5:10 pm -- afternoon meds, snack. Vest & Nebs while playing video games or on computer
5:40 pm -- Tobi
6 pm -- supper
6:30 pm -- homework, playtime -- I walk on the treadmill for an hour
9 pm -- vest, nebs, including pulmozyme
9:30 pm -- bedtime
9:45-11:30 -- DH and I read, check email or watch recorded shows.
2:30 am -- I wake up and give DS an antibiotic that he takes 4x a day so school/daycare doesn't deal with it.

This schedule has worked for us for almost 10 years. If DS has a cold or cough, DH has gotten up at 2:30 am and given him an extra CPT/Vest or Neb Treatment. At least DS doesn't have a feeding tube. I have a few friends who have to get up in the middle of the night to deal with that and administer more enzymes..

 

[Rebjane]

We have to be super organized. Our lives are definately less spontaneous. Our routine on school days is:

Wake up 6:15 am Coffee(me) Son (no CF) feeds dog, Showers and wakes up my CF daughter

6:25 am start nebs albuterol hypersal
Vest, pulmicort

7:30 am done with treatments: protein bar for CF daughter
7:40 am pills with milk
7:45 am get dressed brush teeth and hair back pack ready etc.
8am Drop off school

3Pm pick up from school

3:30 pm albuterol nebs VEST

5pm Dinner

5:30pm homework/bath

6pm more nebs Albuterol hypersal VEST pulmicort pulmozyme Nasonex

usually done at 7:30 0r so...kids spend time with their dad(he's home from work around 7)

Bedtime 8 pm

That's on a good day

 

[Rebjane]

I also work infrequently which I try to fit in when kids are at school or weekends. Today is an early day, daughter is fighting a cough so we are doing a half day for her at school today. I am always amazed how much we fit in to one day. If I think about it too much I get exhausted

 

[albino15]

I don't know your full situation and everyone is so different but if your kid is having stomach issues everyday I'd talk to the doc about enzyme dosage. That right there seems to be the time sucker for you.

 

[amber682]

Our day is usually like this:
7:30 am: wake up, get dressed, brush teeth, breakfast, oral meds
8am: inhalers and vest (nebs if on sick plan or on Cayston that month)
8:30 DS goes to school
9am: DD inhalers and vest (nebs if sick or on Cayston)
11:45: DD goes to school
3:45: home from school, snacks, Cayston again if an on month, extra nebs if on sick plan, homework
6 pm: dinner, bath/shower
7 pm: inhalers, nebs, vest
8pm: snack, oral meds, brush teeth, story
8:30ish: bed

DD has time before and after school to play, DS has a couple hours after school. I get time while they are both in school for grocery shopping or whatever. This is why I prefer sports/activities be on weekends, because it's too rushed after school

 

[Aboveallislove]

Thanks all. I honestly don't see how I'm missing anything from his end. If he could eat and then do his vest that might work better, but he can't stomach it (literally). I could be more productive on my stuff but am so drained need a break when it's not morning or evening rush. I guess the stomach stuff really does throw a loop (and we are at max on enzymes, has prilosac and zantac at max, and working with both GI and CF doctors . . . and his stomach pains are not escruiating--he's had those, these are more I have a tummy ache and need to rock and put a pillow on my tummy, and/or need to poop, but that can be for 20 minutes here and 20 there. Thanks all. Again, I'm not upset or stressed or even frustrated. Our "normal" is a blessed and happy life. More just baffled.

 

[Rebjane]

Aboveallislove,

What brand of enzymes do you use? My daughter has always needs the higher dose enzymes, would max out and then need acid reducer as well. We had used Pancrecarb, which is buffered makes the enzyme work better, but then went off market. I think it is back on market with a different name

We use Creon now, and I give her a small dose of sodium bicarbonate(to act as a buffer) with every snack and meal. Her stomache has been as comfortable as ever since I started this regime. It's been awhile; ever since Pancrecarb was taken off market. I have even been able to take her off her Prevacid(except when she is on Prednisone/and anti's)...

Just thought I'ld throw out another option; if his stomache is that bad.....THoughts?

 

[Aboveallislove]

He's on creon and I've asked both gi and cf re bicarbonate and they both said no because he's on Prilosac and zantac. Don't want to do without the k. Am discussing higher dose but also working on titrating miralax done to see if that helps. When do folks get tummy aches if related to enzymes? Right away? Hours later? Thanks!

 

[bigstar]

Guys when do you take sodium bicarbonate? After Creon and before meal? When its the best timing? Im thinking it would be a good Zantac substitute!

 

[scarecrow]

The only time I get stomach aches is if I don't take anywhere close to enough enzymes. If you are having that much trouble w/ digestion you should really insist that something be changed. More enzymes or different ones. If we're talkingh about the same thing the stomach aches are probably associated w/ oily stools and if that's the case then you need a lot more enzymes. w/ time you or they will learn to adjust intake w/ the amount of fat that you eat.

 

[Rebjane]

Bigstar;

For the sodium bicarb, I give it to my daughter at the exact same time she would take her Creon(just like it's part of her pill). I would check with your doctor first of course.

 

[Aboveallislove]

Thanks and we have discussed. The problem is that I don't feel pushing for higher enzymes is appropriate because we don't know that is the problem. DS's GI stuff has several potential causes: acid reflux, back-ups, cramping from high-dose Miralax, bacterial overgrowth, and possibly enzymes issues. I am constantly trying to figure out which of them is the problem to address and frankly feel like I have a better feel for it than the doctors. I have already called clinic and spoke with dietitian and she said that at max but I could call clinic to discuss with doctor. And GI last week thought it was Miralax, so first I want to titrating the Miralax down too see if that helps because I'm pretty sure that is part of the problem and just doing a tad last night has made this am much better. So I'm not ignoring, I'm trying to get a good enough handle to be able to give good info to doctors (stools too lose now to determine if float/greasey, etc.) and also to feel confident in pushing for something. Usually the tummy aches are from the back-up or I think the urge to go caused by the Miralax (he's on 2 adult doses). Not that there might not also be an enzyme component, but given that I've asked them several times about upping and they have a firm policy in place, I need to be more confident that is the issue to push harder. . . And b/c his weight is great and the discomfort is not high (he's had that too), I'm thinking this is the right approach. . . Thanks all for thoughts.

 

[Ratatosk]

Have they ever done a fecal elastase (fat) Test to see if he's malabsorbing? It never has made sense to me to base # of enzymes on child's age or weight as there are different levels of pancreatic insufficiency. Rebjane's daughter's issues are quite severe. DS can miss a dose of enzymes and not have stomach aches or extreme loose stools (blow outs), but long term he can end up with a blockage.

 

[Aboveallislove]

They have not, but I'll ask about doing that next appointment. Thanks for suggestion