Just need to talk

[babyjaden2004]

Jaden had tested postivie for pseudo and today we found out is was the Mucoid kind. He said it was light strain and there is a 80% chance it isn't there. Hopefully it is gone, i'll have to wait for the culture to come back.
Now her weight they aren't happy with and I know a bit of it is my fault, she is taking pediasure and I just felt she was getting the most of her calories from that. She needs to eat more solids and add 100 more calories a day or they will consider a g-tube. We have to do weight checks every month and I have to write everything she eats and fax it to them every three days. I feel like this is all my fault. They are sending us some of that Scandical powder. Anyone else use it?? Also our Dr, told us he wants Jaden in as early as possible and will not let her sit in the waiting room cause of the pseduo, he is also sending a letter to our peds too. This is the bad season for the bugs and he said he'd rather be safe with her. He is a awesome Dr.
Ok enough of my blabbering, I just needed to get that all out. Any other ideas on high calorie snacks for a 18 month old would be great.

Chrissy <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[anonymous]

Chrissy,

I am and have been in your shoes. My daughter Samantha is 2 1/2 and does have a g-tube. She has always had problems with her weight as well as respiratory problems (IV's five times already). Her weight problems continue even with the g-tube. Her diet also mainly consists of Pediasure in a sippy cup. She has reflux and is on meds, but still refuses to eat a lot of solids.

Don't blame yourself . . . Blame CF and then do what you can to keep your child as healthy as possible. It is NOT your fault.

Some things that have been working for us:

*Samantha loves soup with slabs of butter in it!
*Try to give the solids first (even if it's just a spoonful), then give the Pediasure.
*There is a powder supplement called Duocal that you can mix into the Pediasure to add calories - doesn't alter the taste either.
*Don't make food a stressful issue for yourself or your child, they can sense this. I know this is hard to do because you feel so much
pressure to keep her weight up.

Keep trying - - - and if the end result is a g-tube, don't feel like a failure - I did and I wasted a lot of negative energy on that. The important thing to focus on is that you are doing the best you can to help your child stay healthy and happy.

Maria (mom to three daughters, the youngest, Samantha w/cf)

 

[babyjaden2004]

Thank you so much for the reply. I know this wont be easy and this morning proved that as she threw her egg and toast at me. I only gave her alittle but she wanted nothing to do with it. I know this is the first day and I'm sure as we go on with this it will get better. She is drinking her pediasure and that is it. She did take a couple bites of egg and no toast. I'm not sure I can handle this. I've been so good through everything so far and no one seems to understand why her wieght is such a big issue and I'm sick of explaining it over and over.
We'll try lunch later I guess. Thanks again.


Chrissy

 

[anonymous]

Last summer DS drank carnation instant breakfast and that was it for breakfast and every supper he insisted on spagettios, which I added olive oil or butter to -- he ate those nasty spagettios for three weeks. Sometimes I could get him to eat a slice or two of cheese, but it was that or nothing. Oh and white grape juice for a snack. We chose not to fight about it and have him his spagettios. Still makes my stomach churn 'cuz he'd also try to feed it to us to. At least now he's getting to the age where he'll ask us for something --- usually it' juice or a pickle, but it's a start. He's telling us what he wants to eat! We also designated his own cupboard which is full of snack foods, juice... He knows if he wants a snack we'll open up the door and he can choose what he wants to eat out of there. Don't argue, don't beg, don't cry. Offer some options, try to get her to "try some" and ask her what she'd like and show her some food options.

 

[babyjaden2004]

I know I need to give this time and try different things. I have a great list of ideas from our dietition so I'm off to the store for some goodies. I did find one thing that is really good outta one of my cookbooks thought I'd share.

8oz cream cheese, softened
8oz of your fav fruit yogurt
mix together and serve with fresh food or graham crackers, I buy those sticks they are easier to dip. Very good and easy. My son loves it and will even just eat it, so I'm hoping Jaden will like it and do the same.

 

[anonymous]

Hi, my daughter was 18 months this time last year and some of the things we did were add cream to her milk, scandishake (the company will also send you some free samples if you call them - you can google for their number), butter on all her vegi's, eggs everyday for breakfast (with cream, butter and cheese). You can also add some Toddler Formula to her milk (just a few scoops has lots of fat, calories and many good vitamins/minerals). We never did pediasure but gave her 2-3 packets of Carnation Instant Breakfast with 24-30+ ounces of milk each day. This has lots of calories/fat (although not as much as the scandishakes!). Also, something to keep in mind is that when you start feeding her higher cal/fat meals, she will most likely need more enzymes to digest the extra stuff. Our daughter went from the 5th% in weight at 14 months to the 50th% by 24 months by doing these things.

Hope this helps and that she starts growing soon!!
Hugs,
Kelli (mom of Sydney 2.5 wcf)

 

[anonymous]

Kelli here again, another thing that my daughter likes is crakers with peanut butter and then a dab of jelly (she likes strawberry jam) on top. She won't eat just the pb and crackers but loves it with a tad bit of jelly...

 

[anonymous]

Hi there,

My daughter overall is a pretty good eater but has significant pancreatic insuffiency thus malabsorption issues so we always are trying to improve her weight. I think in general toddlers can be picky eaters and sometimes need to see a food several times before even trying it. ugh. My son without CF was like this. Things I can think of that are high cal that a toddler might like, we have been big on Mac and Cheese, yes out of a box. They have different characters like sponge bob or scooby doo. We make it with whole milk and butter. It has tons of calories(I can 't eat this or I'ld weigh a ton) My daughter likes it because she can eat the characters and it's fun for her. We do lots of peanut butter and Nutella, hazelnut spread, super yummy.Pasta with butter and salt. My daughter loves tortilla chips. Scrambled eggs with whole milk and butter. Ice-cream(high fat) before bed . If your daughter likes yogurt you could buy the Yo-baby whole milk one. I used to squirt flax seed oil in th yogurt and feed it to her. She won't eat this anymore. That's all I can think of now.

Rebecca(mom to Sammy no CF and Maggie 3 with CF)

 

[anonymous]

DS's daycare gives him a spoonful of peanut butter for dessert. In fact last summer we walked into my cousin's new house -- we'd never been there before, he marches into the kitchen and demands peanut butter.

 

[anonymous]

Our 2year old w/CF is very partial to YoBaby brand whole-milk smoothies; we mix them with equal parts of half and half and whole milk because the smoothies are a bit pricey. As far as I can find, these are the only whole-milk smoothies on the market. He wouldn't touch the various ultra-high-calorie shake products despite his nutritionist wanting them on the menu. At the 18month stage, it was cheese omlettes in addition to the milk products but now he won't touch them. Bacon has been a favorite for quite awhile as are french fries, quesadillas, fried chicken - pretty much nothing green, though..

I don't know what percentile Jaden is in for weight, but if the percentage is steady or rising you might want to tell the Dr. to stop scaring you. They'll say a higher weight will help fight off the various bugs, but there is alot that you're dealing with and feeling inadequate shouldn't be piled on top. Our son's nutritionist wants to see him go from 25% to 50%, but I had to tell her she was making us feel like lousy parents when the real facts of the situation are that he's behaving pretty much like any toddler and will be as finicky an eater as he wants - and his place on the chart. It helped to clear the air. We continue to try by offering him anything new and high-calorie we can find and try not to stress out about it.

 

[anonymous]

My MIL really stresses about how DS doesn't like sweets. All her other grandkids love her homemade sugar cookies and brownies. DS just turns up his nose. I was so shocked the other day when he asked for a cookie, that I went out and bought a bag of soft batch chocolate chip cookies -- he hasn't touched them since. Typical toddler. Lately for breakfast, I've been fixing pancakes with butter and syrup, but I have to hide the butter and syrup underneathe or he won't touch them.

When he was younger he liked microwave containers of brocolli cheese or bean & bacon soup. And I'd add a splash of olive oil. The other day I tried it again and he shoved it away and yelled No PEA soup. He also liked canned chicken ala king and chicken and dumplings, mac and cheese. These days it's spagettios, ham patties, cheese -- both of which I cut into the shape of the moon, veggies with butter. He used to like hot dogs and corn dogs -- now he just eats the coating off of the corn dog and spits at hot dogs. So if I find something DS likes, I stick with it. Try to get him to try other things and the other day he actually asked to "try some" of what we were having. The next day I was eating pesto on crackers -- he looked at me, said ew, you gonna eat that? Toddlers!

 

[babyjaden2004]

Well thanks for all the replys.
Jaden is in the 10th% for her weight and 50th for her height. Her last appt in Nov she weighed 21lbs and this on two months later she was 21.6. She also was sick and has been teething. I know I shouldn't get worked up over all this and I know she is doing well. I did buy some good muchies today, pudding pops!! I didn't know they still made these. Thank you all again. I have no where to go and no one else to talk to really. My cousins little girl has it but they make everything thing sound like it is the end.


Chrissy

 

[HelpCureCF]

What about Boost Pudding? My 14 month old daughter has been eating that since she is 6 months old.
240 calories in 5 oz !!! She loves it. It comes in Chocolate, Van, and Butterscotch...She gets 2 a day actually and hasn't tired of it...she is also in the 50th percentile because of it.....
Also...we add 1 tablespoon of butter to baby food dinner...and we only buy high calorie baby food....like...Beech Nut First Advantage (Sweet potato souffle..at 160 calories BEFORE the 100 calories of butter added !!! 260 total !!)
AND.....Beech Nut stage 2 Cinnamon Raisin Pears is 130 and no fat/or protein...soooo no enzymes with that one !!!
Hope this helps

 

[HelpCureCF]

more for you........
we add 1 tsp of light brown sugar to all baby jar fruit...that's 15 calories...
Scandi Cal is 35 calories per tablespoon..but you need to take enzymes...
Pediasure is awesome...
The Boost can be bought through Target Pharmacy..they will have it for you in a day !!
Other than that I guess you can get it through CF Services Pharmacy..but we find Target to be the easiest.
Also...check the yogurt section...look for the highest calorie yogurt...I've found them as high as 170 calories !!

 

[babyjaden2004]

I've been looking at the labels and picking the highest cal count on things I can. Suprising on some things cause I never really looked before. We were told you add dry milk to her reg milk too.
Today was a rough one but it was only the first so I guess I need to rest up for tomorrow. lol. Going to make some chocolate chip cookies since those are only kinds she will eat and I usually add a package of vanilla pudding to them so that will help out alot, she loves them. Thanks for all the info and have to check out Target, DH has friends that work there. I'll have to chekc out the Beech Nut foods and maybe try those as well. Thanks so much!!! You guys are great.


Chrissy<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[anonymous]

hi my name is cheryl son has cf he is five and i guess i have been really lucky because my son has never had the problem of gaining weight his doctors asked me if i would talk to other parents about what i do with him i really didnt want to just because i felt that i would be telling parents what they may be doing wrong or what thats the way i thought it would come across and in fact every kid and parent is different all i can offer you is this let them be themselfs when their hungry let them eat my son probably eats about 10 times a day and eats very fatty foods ex. alot of puddings and icecream shakes with whole milk and with vegtables he uses a very rich dip or with crackers cheese and fatty meats are on them there are little tricks you can do to help your child eat in the summer we are constantly on the go and i was feeling guilty because he was not eating as much because we werent at home so i figured i would take a lunch pail every where we went with some heavy duty fatty snacks and throw in an ice pack so he was always eating hopefully these are some ideas for you and your daughter gets big and strong these things worked for us hopefully they work for you too my son is now 5 at 50lbs and gains about 3lbs every visit hes doing very well and soon she will be too and dont forget nothing is your fault and everything in time will be ok

mom of a 5 cf

 

[anonymous]

When DS cultured Pseudo, it hit me like a ton of bricks. It was always one of those things that the doctors talked about way down the line -- years from now. DS had passed his sweat test with normal results -- lower 30s and the first blood test they did was inconclusive 'cuz they didn't get enough blood. So it was a huge shock and I cried for days because it also brought home the fact that DS really had CF, until that point I kept thinking we'll keep doing treatments, but he's healthy, so in a few years we'll find out it's all just a big mistake, a misdiagnosis.

Lately I've been carrying snacks in my car or in my jacket pocket. When I pick up DS from daycare, I hand him a package of fruit snacks to munch on, on the way home -- Jaden is probably still a little too litte for those yet, but they've got 80 calories in them. He also likes craisins and raisins, applesauce, baby food bananas. Those things have high calories and don't require enzymes. I also give him some juice before bed (brush his teeth before sleeping) or after day care, too. Juice is high in calories, too and doesn't require enzymes. Though you're not supposed to give little kids too much juice 'cuz of their teeth. Plus we use a sippy with a straw, to prevent it from touching his teeth. DS also loves pringles and doritos. I've also been making him slushies at night for a snack. Put some tang or kool-aid powder in the blender, some ice, water, sometimes a frozen banana and mix it all together. And serve it up in an insulated cup with a spoon. I can't get him to try ice cream or malts, but he likes slushes.

 

[Seana30]

I am interested in finding out more details on the YOBABY SMOOTHIES and the BOOST PUDDING.  I have never heard of these two items, but they sound healthy and full of calories.  Where do you buy them??  Can you find them at Walmart, or your local grocery store?Thanks for any info.Seana

 

[anonymous]

We have regular yo-baby yogurt, which is a whole milk yogurt. Think it has a layer or creme on the top. It's made by stonefield farms. I've seen the smoothies, but never tried them before 'cuz ds doesn't like smoothies. I have also found a yogurt called lecreme that is about 120 calories for a 4 ounce container.

 

[anonymous]

YoBaby can be bought at most local grocery stores and Walmart. My son who is 10 likes it so I have to buy two packs. Never saw the smoothies though. Have to check into the Lecream yogurt now. Thanks


Chrissy