Failure to thrive! OPINIONS PLZ

[Dowling]

So my daughter Rowan was diagnosed @ 11 days and since then she is borderline failure to thrive. First let me mention we are breast milk only she was 6lbs 5 oz @ birth and went down to 5 lbs 5 oz. then we started creon enzymes and she went up to 5 lbs 13 oz. but a week and a half later she only put on 3 oz so now at almost a month old we are not even back to our birthweight. I really do not want to give up the Breastfeeding for obvious health benefits, but her weight gain is so slow I'm getting concerned. Let me also mention I have 2 other toddlers ( under the age of four w/I CF) so pumping all day is not really an option time wise for me. I do pump once a day to supplement one bottle with pregestimil, but no significant change yet from that

 

[Kimmiegirl]

Unless otherwise instructed by her CF Dr.s, I would keep doing what you are doing. She is gaining, praise God. Breast milk is the best for your little CF'er it gives her your antibodies to help protect her from infection. But I'm sure you already knew that. (FART2)My daughter could not eat for the first 3 months due to intestinal blockages. She came home with a feeding tube in her belly. She is now doing great. She is tiny but somehow measured in at the 75% - It sounds to me like you are right on track - If your little one is malabsorbing or constipated the enzyme level will need to be adjusted. The Dr.s may add a formula mix to the breast milk. But that is ultimately up to you.

 

[Calimom]

I hate to say this, but my experience is that breast milk alone is not enough for a failure-to-thrive kid with CF. I was also an exclusively breast-feeding mom when my son was diagnosed at 4 months old, and he never gained sufficient weight. Once he started taking enzymes, things got slightly better but when I began to use pregestimil, it transformed him. We kept breastfeeding a couple of times a day both for comfort (for both of us!) and for whatever protection it could give him, but the BEST protection for your daughter is gaining weight. I was going to La Leche meetings, and some of the moms there did not understand that breast milk is not always the solution, but you need to do what's best for Rowan and my strong suspicion is that means feeding her mainly pregestimil! If her weight gain even with creon is slow, that tells you she simply can't absorb the right nutrients from breast milk. This is only the first of many times that you may need to stop listening to what society says about what's best nutritionally for kids. Later on, it'll be things like resisting the low-fat bias, since Rowan will need high-fat foods. She will grow up to be a normal kid in almost every way, but her nutritional needs will always be different and now, she needs the formula that was developed specifically for kids with malabsorption. And hang in there; with all the progress happening in CF research, I feel confident your daughter will grow up to be both happy and healthy!!

 

[VAmom]

Dowling, I'm so sorry for all that you and your family have been through and continue to go through.

I breast fed my son and he did not gain weight. They inserted a naso-gastro tube and he was fed additional calories overnight. It was a slow feed so it did not interfere with his nursing, but it did help him gain weight. I recall this was for a few months.

Weight gain continued to be a struggle. After many years of no growth (he was in the 1 percentile for height and weight) and a new CF clinic, he recieved a g-tube when he was eleven. His weight (and his self-confidence) doubled within six months.

At 17, he was adamant that he would eat and continue to gain weight, and finally the g-tube was removed. His weight has not increased.

If the doctors recommend a g-tube at some point, I would encourage you to consider it for your child. Poor weight gain contributes to poor lung function.

 

[Marina Louise Oneill]

My daughter was admitted to chop for a failure to thrive at 3 months old. At birth she was 9 lbs 1.5 oz.She has two mutations of cf the df508 and the rh117 now she is gaining weight she is almost 6 months old and she is now 15 lbs. So i can relate to what u went through. I was also breastfeeding at the time fully then i decided to stop and just give her formula she is doing very well

 

[just1more]

Unless your daughter's physician tells you otherwise, keep breastfeeding and know she will improve with time.

There is no hard deadline that says when you have to regain birth-weight, or anything else. While long-term you need to make ever effort to put on weight, as long as she is gaining (even slowly) then don't feel pressured because she is not growing 'fast enough'. Even non-CF babies gain faster on formula, this doesn't make them healthier, just bigger. While weight in CF is linked to lung function, right now you don't need a plump baby, you need one that is healthy and growing. Worry about plump if things don't improve in another month or two (or if she starts to lose ground).

IF the doctors become concerned she is losing ground, and start discussing supplements, then you may need to evaluate your options. But don't give up, as VAmom pointed out there are options to help boost weight that won't compromise your nursing relationship. The antibodies in breastmilk are invaluable to a infant with CF in my opinion; so as long as she is stable and healthy do what you feel is best.

 

[Aboveallislove]

Absolutely agree with Tom. Also, I know that with the panic of the diagnosis, we try to push food/more feedings and that will backfire. DS was refusing the bottle at 9 months because of that and we had dropped in weight and they were starting to discuss a feeding tube when a good OT recommended Ellyn Satter's Child of Mine. I strongly recommend you read it. And in the mean time, continue to follow your daughter's cues on feeding. DS is our only so I was clueless on breast feeding and did my best but panicked when he was only 7% at first appointment and not much better after so I started supplementing by pumping and supplementing and then giving him breast milk in a bottle with a supplement and just a little nursing for about 6-9 months when he refused any nursing. I kept pumping until 1 and snuck what little I could in--by then he didn't like the taste. I might, though, not have been producing enough. But given this is your third, you'll likely know if you have a well-established breast feeding routine. And if so, again stay with her cues for eating so it doesn't backfire. And unless the doctor suggest otherwise, give it some time.

 

[mumof1]

Sorry to hear about your troubles, but I believe that any weight gain is great. CFers seem to lose weight rapidly and gain it really slowly. My son was diagnosed at 4 weeks and was too sick to have the energy to drink. He spent most of the first 12 months of his life in hospital, had reflux which was severe, naso gastric tubes and then a Peg at 7 months of age.( or G tube) He did not eat ANYTHING by mouth until he was three years old! Now he is 15 and wont stop eating! Hang in there, the progress may be slow but you will get there! It may seem overwhelming now but life will start to feel normal soon and you will cope with love and support from friends and family. I wish you success and strength in all that you do for your precious little one. Remember to take care of your own health too.

 

[Dowling]

Just had our weekly weigh in ( like I don't have enough to do?) and we haven't gained ANY WEiGHT? I'm so confused, she eats every hour or two ( breast milk only) and gets a bottle of breast milk mixed with pregestimil once a day.... Where is it all going. She is still under 6 lbs and a month old on Thursday . That is still 6 oz under her birth weight

 

[Aboveallislove]

Dear Mom,
What did the doctor suggest? I know it is hard to not worry, but also at this age, one pee before the weigh in could have an impact. What we did was purchase a baby scale that has ounces/grams so that we could see the changes. At first we weighed daily--that helped us see DS was growing and that it fluctuated by day/pee, etc. Now I do maybe a couple times a month just to see where we're at. And what did they tell you re enzymes?

 

[Dowling]

She is eating too frequently to increase her enzymes. My father in law just bought us a scale , so that should Be here any day. They want me to supplement more which I really did not want to do. But that can't be good fr her little brain cells to not have gained any weight. I see the cf clinic in Friday so they will check her out then

 

[Aboveallislove]

I guess what I meant is how often are you giving the enzymes? DS was nursing non-stop at times and I asked when to give another dose? The answer was after an hour, but then also cautioned not to give more than x number, etc. So just wondering how frequently you are dosing and if they gave you the safe range for how many doses you can have. I think the scale will help you too see if she is gaining day to day and then just fluctuating maybe with pees, etc. I'm assuming they are doing naked weights so clothing isn't an issue. I did end up supplementing but in retrospect wished I had nursed more. . . but I honestly didn't know if I was producing enough etc. it was my first time with the nursing. I had no problem going back and forth b/w bottle and nursing, so that could work too. hugs

 

[Dowling]

Yeah, I have 2 other Children but they never latched o so this is my first time Breastfeeding ? I wonder if she's getting enough too. I give 1 creon pill in applesauce before she eats . Right now she is eating every hour and a half which is exhausting for me and for my poor boobs ( sorry, TMI). Obviously I understand the antibodies in breast milk are crucial for her, but weight is pretty important too. She is sooooo little

 

[Aboveallislove]

I'm sorry. I agree re the weight. The antibodies is why I pumped and supplemented but with 2 others you can't do that all day--i still have no idea how I did it. . . it was horrible. But you can likely nurse some and do bottles for others.

 

[Dowling]

Yeah! My other two are 4 and about to turn 3 so I got my hands full. I'm also super stressed about what all this is gonna cost

 

[Aboveallislove]

mom . . . been thinking more about it and how exhausted and worried you've been/are. and stress could reduce milk production I think. See what doctor says on Friday and/or in the meantime what about adding a full bottle of supplement before a nap or bedtime so she can get a full tummy and you some rest . . . DS did go back and forth between bottle and breast easily and she's been at it a month. . . And you could still do some nursing even if it isn't solo. . . big hug.

 

[bholatalbert]

My son had the same problem when he was born, but at that time we did not know he had Cf. We tried many different formulas, the only one that helped him gain weight was Pregestimal. He was gaining alot of weight on this formula even though he was not taking any enzymes at that time. The taste is pretty bad, at least it was for my son, but eventually got use to it.

 

[Dowling]

So we tried a week I supplementing pregestimil into a bottle of breast milk, but no weight gain. We are almost through a second week of trying two supplement bottles .... Still no weight gain at all. She is by NO means lethargic and now eats every 2 hours instead of 1. And has one good stretch of sleep at night (5-6 hours)

 

[sdavis227]

How are her bowel movements? Has the clinic gotten a chance to check and see if there is some malabsorption going on? I know with DS we changed the type and amount of enzymes numerous times when he was little to get the right one.

I had to quit BFing at 5months and am still saddened that I wasn't able to do the whole year with my CFer. I'm not sure if I just did not have enough supply or what was going on but as soon as I quit and he started being formula fed he gained the weight (he also had gotten a g-tube).

I'm hoping you don't have to go through this and can BF as long as you want but I also understand that your DD needs to gain weight. I would definitely ask the docs if there could be some malabsorption going on.

 

[Dowling]

Wat does DD mean? Yes there is malabsorption.