Showing posts with label nutrition. Show all posts
Showing posts with label nutrition. Show all posts

Thursday, May 15, 2014

Salt & Nutrition

I’ve heard other CF parents talk about dirty looks and even snarky comments they get from strangers when they see them salting their young CF child’s food or drink.  We’ve been on the receiving end of some strange looks ourselves, and from an outside perspective it really can look like the parents are starting their child down the path to hypertension rather early.  Trust me, though, we wouldn’t be doing this if it wasn’t necessary.

CF patients shed more salt than people without CF thanks to the malfunctions in the CFTR (which I still don’t completely understand because it’s pretty complicated), and as a result that salt needs to be replaced to keep the system in balance.  Dehydration can also occur faster because of this, which is often why CF patients will down beverages like Gatorade or other electrolyte-replacement drinks.  Sort of like the dosing with enzymes, how much salt each patient needs to replace will vary, and can even vary by day.  For Judith, I tend to give her less salt over the winter because she’s not sweating as much, and will often eat enough salty foods to compensate.  Over the summer, I do add extra salt to her food since she’s sweating more, and I want to make sure that she’s getting enough to replace what she’s losing.

Nutrition for CF patients is also important, because good weight gain and a high BMI are directly related to good lung health and pulmonary function.  Because of the absorption issues that many CF patients face, extra calories are needed to help the patient gain weight and get to or exceed the “optimum” BMI of 50%.  How many calories a CF patient should consume each day is going to vary depending on the individual, but a ballpark figure that I often hear mentioned is about 2,000 calories each day.  Again, that number will vary; some people will not need that many calories, while some might need more than that.


Source: http://www.cff.org/treatments/Therapies/#Eating_Right

Wednesday, January 15, 2014

Clinic Visit

Judith's quarterly clinic visit was yesterday afternoon.  It was a typically gloomy day like the majority of clinic days are, but the weather didn't match the mood of clinic since we had a great visit!  It was unexpected, and all of us (her team included) were expecting a longer visit going over various options.  We dodged a bullet this time, but still have some things to consider down the road.

Everyone is pleased that Judith gained weight this time!  She's up to 28 lbs, and is 36" tall.  I know she didn't shrink and lose that 1/4" since her well visit, but she didn't want to stand tall with her heels against the wall so they could get a more accurate height.  Either way, I don't think she grew that much in a month anyway, so she's still likely hovering around the 36 1/4" mark.  For height she's in the 19th percentile, and moved up to the 22nd percentile for weight!  Her BMI also increased slightly, and she's now at 15%.  So while that's still a far cry from the ideal 50% they would like her to achieve, she's progressing instead of regressing and the team is pleased.  I seriously did not expect to see progress like this, and am happy that we don't have to start some of the other interventions we had discussed on the phone!

Our dietician didn't feel comfortable starting an appetite stimulant right now since Judith is gaining and progressing.  It's something we want to hold off on until she absolutely has to try it so it doesn't lose effectiveness by the time she would really need to rely on one.  I also talked to Dr. G. about a realistic outlook for the possibility of needing a g-tube.  With Judith's poor eating habits lately, it's something that's been coming into my thoughts more frequently, and it's something the team is considering.  He said that while he does not see a need for one right now since she's making some progress, it's something we need to keep considering for the future.  We can't take it completely off of the table, but for now we can put it on a back burner and let the thought simmer until it's absolutely necessary to put one in.

We also discussed the recurring respiratory symptoms Judith's had since she had her sinus infection, and are waiting to see how she's doing once we finish this round of Bactrim in another week.  Her MRSA is still sensitive to the Bactrim, so the increase in cough shouldn't be from that unless it suddenly became resistant to it since her last culture in October.  If her cough is still present after we're done with this round of antibiotics, we'll reevaluate and start another round as needed.

I'm still at a loss about how to make visits easier for Judith.  She's still a miserable beast and wants nothing to do with them when they examine her.  At least we didn't have to almost pry her mouth open to get the culture this time since she was busy coughing and screaming, but we did get a really good one since she was coughing.  We'll know the results in a week like always, and I'm keeping my fingers crossed that there aren't any pseudomonas present that could be aggravating the cough.

Tuesday, July 24, 2012

CF Clinic

Judith had her quarterly clinic visit today.  Much like most of our visits, there are positives and negatives - as of right now, we're not looking at anything major (pending her throat culture results).

I am so grateful that my mom is able to go with me to these visits when John is unable to!  It helps a lot having an extra set of hands, especially now that Judith is into everything.  We had some fun in the waiting room after her vitals were checked and while we were waiting for an exam room to become available:
Saying "baby" to herself in the mirror.

"Mommy, do you see the baby in this mirror?"

Silly faces

Practicing opening wide for her throat culture


Once we got into the exam room, she started to melt down (something I was hoping we could avoid since she did so well at her 18 month well baby visit) when we put her on the scale to weigh her:

Judith currently weighs 21 lbs.  That means she only gained 4 oz in almost 2 months.  Realistically she could've gained a few more ounces since the pediatrician doesn't use the digital scale for her anymore, but even so the difference wouldn't be that dramatic.

While we were waiting for the nutritionist and Dr. G., Judith entertained herself with the bead toy in the exam room:
She was very serious about her visit today

"Grandma, do you see what I'm doing?!"


The nutritionist came in a few minutes before Dr. G., and I got a chance to talk to her about how things were going since I made the phone call to her a few weeks ago.  I described what her typical meals look like, and we talked about how Judith isn't really interested in eating as much as she is drinking her Pediasure (all of us were concerned about this since her weight gain was so minimal as a result).  Once Dr. G. arrived, we went over all of this info again, and we think that part of the problem is because she's still so backed up with her poop.  We're going to start giving her the miralax every day to see if that can clean out her system.  I also mentioned how there's a sheen to her poops, and the team is concerned about that on top of everything else - it could be a sign that maybe she is becoming pancreatic insufficient, so we're going to test her poop again.  With her track record, it very well may be a normal test, but Dr. G. wants to stay on top of this so we can treat it early if something is developing (which I am pleased about - I'd much rather go this route as well!).

We talked about the increase in coughing that Judith is doing.  Right now we're keeping an eye on it and waiting to see what her cultures come back with.  Dr. G. said that the cough could mean the pseudomonas are growing again, but it could also be triggered by something else, something like an allergy.  We should have her culture results by next week (possibly Friday if things grow quickly), and we'll do some allergy testing when we do her annual blood work.

Probably one of the biggest pieces of news is Judith finally weighs enough that we can order her Vest!  Dr. G. is giving the script to the nurse coordinator so she can get the ball rolling and the order placed!  I am so excited that this is finally able to happen!  It has been a massive struggle trying to do manual CPT on Judith for a long time (lately it's been a nightmare - she tries to get away from me, kick/hit me, etc), and frankly my wrists are starting to bug me because of the repetitive motion involved.  I know that introducing her to her Vest is going to be a new battle, but I'm staying optimistic, hoping that she will adapt to it quickly like she did to the nebulizer.
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Wednesday, June 27, 2012

Picky, Picky, Picky

I am about ready to bang my head off the wall in frustration.  Judith cannot afford to be in a picky phase.  I know this is normal for toddlers, but when you're trying to pump almost 2,000 calories a day into her and she refuses 95% of what you place in front of her, the frustration is bound to happen.

For example: today's lunch menu consisted of "souper orzo" (it's basically orzo made with a can of tomato soup, some milk, and some butter), and a country blend of veggies with butter.  Both were rejected in favor of potato chips and an ice cube to help soothe her gums from teething (we have another tooth, by the way, and there are 3 more on the way).  5-6oz of Pediasure was also consumed.

At least the chips are high in calories.

A typical mealtime conversation right now is as follows:

Judith: (looks at food presented, pokes it with finger, samples, fusses for sippy cup, consumes at least half of contents of said cup)


Me: Why don't you eat some of your (insert food here)?

Judith: (moves rejected food item from one side of the tray to the other) Aaaaaaaaaaah! (smears contents of tray around the tray with 1/3 of the contents flying in all directions)


Me: You need to eat.

Judith: Ahh dah (all done)!

Me: No, you're not all done.  Eat.

Judith: Ahh dah!

Me: Eat more.  More!  (signs more)


Judith: Ahh dah!

Lather, rinse, repeat.

I can't wait to see what she weighs when we go to our next clinic appointment.  At this rate, her weight gain will be minimal or worse, negative.  I can't help but worry about it.

On the flip side, I'm glad we don't have to take Buster & Lady to the vet for their well doggy visits until next year.  Judith may be turning her nose up at everything I present her with, but the dogs are putting their noses to the ground and having a heyday with the leftovers and rejected scraps.  Lady looks like she gained a pound or 2, and Buster still has his round shape.  They don't feel heavier, and they're a long way away from being obese, but I'd hate to see what the scale would say if one of them was on it.
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Monday, April 2, 2012

Spring Clinic Visit

This particular visit was intended more as a follow-up to the possible pancreatic insufficiency we thought Judith may have had, but as we all know she's sufficient, so this visit turned into more of a standard visit.

Things are still looking good!  Dr. Graff said her lungs still sound clear, and he's working with the insurance company to get her approved for Synagis one last time this season.  We're still a little bit concerned about her weight gain: she's up to 19 lbs 5 oz, and still around the 3% mark on the charts.  At least she's back on the charts this visit!  The nutritionist and I are going to work on charting what she's eating to see if we can find other ways to boost the calorie content of her food.  Part of the problem is her ever increasing mobility, and now that she's walking it's only going to make things worse.  And both the nutritionist and Dr. Graff reminded me that when we adjust Judith's age, she's really not doing bad with her weight.

One of our concerns is her poop is looking really mucus-y at times.  I was just assuming that she's swallowing a lot of mucus right now, and instead of puking it out she's pooping it out (it's a wonderful visualization, I know).  Since I'm definitely concerned about her weight, and her team is a bit concerned, they're going to start testing for some other possible conditions that could be in play other than the CF.  Since we had to do her annual blood draw today, they're going to run a test for celiac disease at the same time.  We don't think she has celiac, but they want to start there to rule out the possibility.

We also talked about what we need to do with her if she is still denied the last dose of Synagis (other than the common sense things, which we've been doing all along even with the shots).  We have a list of a few different symptoms to watch out for that could indicate she picked up RSV somewhere along the line.

Hopefully the insurance will accept the team's appeal and will approve her shot, and hopefully we can go and get it by the end of the week.  In the meantime, we'll have to wait until after Easter to get results for most of the tests they're running.

Monday, December 5, 2011

Now That Judith's 1

There are a lot of new and exciting things happening!

First, though, some pictures from Judith's party on Saturday (these are all smash cupcake pics):




Judith's party was good.  She was cranky (a combination of teething, barely napping, and overstimulation), but she did enjoy herself in that way that a 1 year old can.  She got some cute outfits, lots of toys, her own Nativity set, some books, and an Anywhere Chair from Pottery Barn Kids!  The following day (Sunday), she had worship appointments put in at my parents' church in honor of her birthday, and her grandparents, John, & I sponsored the altar flowers at our church - she had 4 beautiful bouquets sitting on the altars, and we got to bring one from our church home.  :)

We're going through some big changes right now.  One of the biggest is she's graduating from formula to Pediasure.  I have 1 can of Neosure left that I just opened this morning, and once that's gone we're done with it!  She needs to be on the Pediasure to keep her calorie consumption up, and thank God that our insurance and her MA will pick up the tab because that stuff's EXPENSIVE (we're talking close to 10 bucks for a 6 pack), and for her it's considered a medical necessity.  I have bad memories of that stuff from when I used to volunteer at S. June Smith center years ago - one of the kids had to drink it, and it smelled so nasty!  It's definitely improved over the years, and now it kind of smells like a McDonald's milkshake.  Anyway, that's going to be her new primary liquid source, and a medical supply company will be delivering it to our door monthly.

I'm still working with her on the sippy cup.  Saturday she took a whole ounce of Pediasure, and I was so excited!  We're making progress, but it's extremely slow progress.  It reminds me a lot of the struggles we went through in the NICU trying to get her to nipple feed, and just like then we'll have to wait for whatever it is to click in her mind before she really takes off with the sippy.

On top of all of these changes, I need to come up with new, possibly creative ways to get Judith's daily salt amount into her.  One thing I'm grateful for is that we don't have to make this transition during the summer months - since it's cooler, she's not going to lose salt as quickly, but we still need to make sure she gets enough to replace what she is losing.

Tuesday, October 25, 2011

Adventures with Finger Foods

Judith has pretty much rejected purees at this point (she will still eat some pureed fruits, but veggies are a definite no-go), so we've been experimenting with finger foods.  Her timing isn't that great - I wouldn't be quite as frustrated if we didn't have the possible weight gain issue going on.  So after talking with a couple fellow CF mamas, I'm experimenting with different foods and different ways to boost her caloric intake.

She's handling the new solids well.  For a few weeks, we've been giving her different Gerber finger foods, and she loves most of them; but it's also time to introduce regular table foods.  She's had some canned/steamed veggies, her first taste of beef pot pie, some spaghetti, buttered noodles, mac & cheese, waffles with butter, and ::gasp:: french fries.  She doesn't eat a lot of any 1 thing, so the formula helps compensate.  As she grows and her tummy gains more space, I'm hoping this will change.  Maybe it's more of an issue of things being new and she's unsure about whether she really likes it or not.  She's such a mystery sometimes.

I do know 2 furry creatures that are thoroughly enjoying mealtime these days.  Buster and Lady certainly aren't lacking for food around here.  Heck, the other week Buster helped himself to Judith's entire breakfast (and did get punished for stealing food... stinker).  Lady's much more patient with Judith, and will wait until I place the leftovers on the floor for them to clean up (since it's mostly veggies anyway, it doesn't hurt them at all haha!), but trust me - she's just as enthusiastic about the table food as Buster is.  Let's just say it's really awesome to have 2 furry vacuums to clean up the trails left behind.  ;)

The one thing that's bothering me, and probably will bother me for a while, are the sanctimonious Judgey McJudgersons who feel the need to lecture me about my child's eating habits, especially when they know nothing about our situation.  She gets plenty of healthy foods, but I'll be damned if I'm never going to pass up an opportunity for her to have some high calorie, junky foods - if it'll help her gain weight, so be it.  She's not eating it all the time, and really there are much bigger things to worry about in life than concocting some lame theory equating eating a chicken nugget to eating a bowl of nuclear waste.

Wednesday, July 13, 2011

Salt & Calories

One of the quirky things about having a child with CF is the nutritional side, and there are many, many things we'll be learning as Judith gets older.  Right now, I feel weird doing some of the things we need to do, because we would seriously be judged out in public by strangers that have no clue why we're doing it.

Funny/random side note: I have Judith in the Ergo right now, and as I'm typing about nutrition, she's sitting here alternating between licking my shirt, the Ergo strap, and gnawing on said strap.  Either she's telling me she needs more fiber, she's teething, or is orally exploring.  Whatever it is, it's gross.

Back to my original thought.  One thing we need to do is add salt to her formula.  Right now, she gets 1/4 tsp mixed into her pitcher each day.  People with CF shed salt like crazy when they sweat (more than a normal person), and it has to be replaced - this is why when you kiss Judith, especially if she's warm and sweating, she'll taste salty.  Salting down her food or formula helps with this replacement.  It's especially critical for her to get enough salt right now because we're in the hot summer months.  The interesting part is she won't have to worry about hypertension and all of the other things that happen from too much salt - apparently people with CF are immune to this happening because of the amount of salt they lose.  I thought that was interesting.  :)

For some strange reason, I'm a little paranoid about adding salt to Judith's bottles when we're out in public.  I try to remember to add the salt either to the water in the bottle or to the powder in the travel case before leaving the house so I can avoid people seeing me do it.  I don't know - maybe I'm worried about people judging, and maybe it's a defense mechanism against having strangers walk up to me and give me an unsolicited lecture.  I'm hoping that I can get over this paranoia in time, because there will be a day in the near future where we'll be in a restaurant or something and I'm going to have to salt her food or drink for her.

The other thing we need to do is boost her calories in her food.  People with CF need high calorie diets to make sure they're getting all the nutrients their bodies need.  We're keeping her on the NeoSure (22 calorie formula) until we transition her to whole cow's milk.  Our bank account is weeping at this news, because the cost for that stuff is insane, but if it's going to give her what she needs I'll gladly give it to her.

I wish we could give her straight purees, but we have to add some sort of cereal to boost calorie content of those as well.  So I mix rice cereal in with her veggies, and oatmeal in with her fruit.  If you remember, I posted a while ago about the rice cereal being a no-go; well, if it's masked by another food, Judith will eat it with no problems!  And she absolutely loves the oatmeal.  The cereal has a bonus effect: it thickens some of the runnier purees, and Judith likes her purees on the thicker side.

I'm interested to learn how all of this is going to change as Judith gets older. :)