Quinn’s Pedi Appt… HELP!!!

Well, the whole me feeding her… that’s just impossible. I can’t even comfort her when she is in pain, unfortunately, the severe reflux caused the whole sandiefer’s syndrome which in turn portrayed on her behavior and so she has never ever cuddled with me. If she is in pain, she pushes off me and has since the beginning and feeding her was a nightmare before she could hold her bottle but once she could hold it, she’s been drinking her bottle all by herself. IF I hold her, she squirms and wiggles out of my arms. I think i’m going to try brushing her teeth while she’s sleeping. maybe she will get used to it. because the weight is too precious to loose. I know that 22 pounds is pretty good for a 15 1/2 month old, but it’s taken so so much effort to get there without tube feeding. We’ve increased her caloric intake too many times to count with little help… until peptamin jr. She’s on three meds for reflux and she’s on an appetite stimulator. Not only that, but she’s a picky eater. So we try to put lots of butter in stuff to fatten her up. Well, I have to go. Quinn doesn’t want me on the computer. She keeps grabbing my hands off the keyboards and pushing the computer away. Time to play!!!

Thanks for the tips. I’m going to try them for sure. We’ll see how it goes tonight.

-Sarah

Sarah,

As you know, we’re in a similar situation. Hailey takes a bottle before bed and one at night. Her formula even has corn syrup in it, so I know that’s the end of her teeth. We haven’t been able to drop it because she’s needed to calories, like Quinn.

For what it’s worth, Hailey used to be very similar to Quinn in terms of her comforting behaviour. She got so used to arching and pushing etc. Now she always wants to come and snuggle with me and be held. Hailey’s never held her bottle by herself, except a different little bottle that she has held on occasion and taken a few ounces here and there, but not consistently. Hailey hardly ever drinks so we’re always worried about hydration. And of course, the worry is also tube feeding.

Everyone has always told us to take away the night feedings, but it was the only way we could support her weight (which was the same as Quinn incidentally) without a tube. I’ve known that at some point we would have to take them away (because she won’t bottle feed like a normal child while awake during the day), but wanted her to have the feeding skills needed to support herself. Our docs have all told us to expect some weight loss. I finally feel that the time is right for us to do this and to take that leap of faith.

If you are really lost, I would talk to your GI about it, and I would also try to get some help from a feeding therapist as well as a dietician if you haven’t already. Maybe these people could give you more insight into how close Quinn is to the danger zone and if they think that she has the skills to support her weight in ways other than a night bottle. They might also be able to offer some tips for ways to get her to drink. Hopefully that will help you in making your decision.

We have recently started weaning the night feeds for Hailey even though she still gets a bottle before bed. I think that I’m going to try to give her the bottle before we brush, which would mean pretending it’s bed time, and then taking her to brush and bathe. She won’t be happy, but I know that for us, we have to let her go and hope that she swims.

Good luck in your decision. It’s painfully hard in ways that are hard to imagine unless you’ve been there. HUGS.

Hi Sarah,

If it were me, I wouldn’t give up the bottle before bed, but try brushing her teeth after, or using Spiffies. I have provided a link. We have the grape ones for when I don’t have a tooth brush handy. They are a wipe that is flavored and sweet that you rub against their teeth and gums. I have tried them they are pretty yummy. I bought mine off of eBay, but I’m sure there are other websites too. Because you have struggled so hard to get Quinn to gain, I would try other things before giving up the bottle before bed. The Spiffies are proven to even help reverse decay. Good luck to you.

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Yes, thank you for that link I will have to check it out. It’s not just rotting her teeth out… that’s only most of the problem The bottle also pushes the teeth out. Which can effect the way permanent teeth grow in. I talked to her dentist and he said that getting rid of the bottle is the best thing for her. Her pedi told me that tube feeding her would be better than letting her eat the from the bottle period if weight becomes an issue again. I’d have to say that because I know a little of the med. field and ultimately want to become a neonatologist, if it weren’t my kid.. I would recommend this too, but she’s MY kid… and this is just a very hard decision. Today, we managed to get her to drink 2 ounces… but we had to put it in a completely different sippy cup and she didn’t eat much the rest of the day. BUT at least it’s something, right? Maybe we are getting somewhere. And I think about the great strides she has taken. Just a few months ago, Quinn wouldn’t tolerate any foreign objects in her mouth. So for her to tolerate toothbrushing… that’s such a feat. Thanks, OT!!! Plus, her dysphagia is very mild now, and she no longer gags… well for the most part no longer gags on her food. She doesn’t stop breathing anymore, She eats more.. even though it’s not enough, it’s still more and she is walking… even though she is behind and wobbly. At 13 1/2 months, I was scared she would never accomplish it. She says two words sometimes, even though it’s not enough… she signs! So, I look at how far we’ve come and I just have to think that this is another hurdle that she needs to cross. Just another one. She may take a while… and it may take some medical and therapeutic intervention, but she will do it… in her own time, right? I think that slowly adding water to her formula at night might help because she doesn’t like water, she may eventually give the bottle up at night. Well, I do appreciate all your insight and all your help. I really really do. Just when I feel like all hope is lost and I’ve been kicked down and my face smashed in the dirt, you all know how to pick up another reflux mama and dust her shoulders off. Thanks.

-Sarah

why are you calling quinn failure to thrive??? her weight is excellent and a LOOOOONG way from failure to thrive—–especially since it has gone up. failure to thrive is below the 3rd percentile, or dropping 2 major lines on the growth chart. a child can even be below the 3rd percentile and not be considered failure to thrive—as long as they are maintaining their growth curve. sylvia just had major dental work done in january—–12 teeth needed work—and 6 of them required crowns. she had to be put under anesthesia to do the work. sylvia has enamel hypoplasia, so her case is a little different, but you really don’t want to go there. any child that has relied on a bottle for this long will probably lose a little weight—-so expecting it should help to relieve a little bit of the worry you will probably feel. she might even surprise you and start to gain after being off of the bottle for a little while.

putting two words together at 16 months does not sound particularly late for speech. two of my kids did not talk much until they were 3—-and one of them is further ahead in math than anyone at his school. he made up his own sign language instead of talking.

quinn is only 16 months old and she has been sick alot—-considering her rocky start—-she sounds like she is doing great.

Quinn is considered failure to thrive because she has failed to gain weight dispite many caloric supplements. She was 16 pounds at 6 months old. Then at 13 months, she was just barely 18 pounds and losing. She had gained barely over a pound in almost 8 months. So that’s why they called her failure to thrive. I asked the pedi why they threw that term around so much and they said that in Quinn’s case, she did not follow her growth curve and would gain a little weight, then loose a significant amount. She has never fallen below the third (I don’t think)… thank God! But also, she has lost weight and has gone many months without a gain. She was falling behind developmentally and she was getting sick a lot… which means she wasn’t getting enough nourishment. That’s why they put her on the peptamin Junior… which has proven to help her out tremendously!!! And that’s why I have such a hard time with getting rid of the bottle because without it, she will not get as much nourishment from the peptamin because she will not drink it. As a matter of fact, since taking her off the bottle, she is now sick… AGAIN! with diarrhea, fever of 103. Not sure if it’s just a coincidense or anything, but I’m scared that she is losing the weight she had gained on the peptamin because she refuses to drink it during the day. She feels a little lighter and the cellulite that just started showing up is diminishing. Her calorie count in the hospital was 500 calories or more per day below her required target to sustain her weight and ultimately her good health. So that’s why she is failure to thrive. I would have to agree that her weight is excellent right now. I love that! But that’s why she has follow ups to see if she looses again. So when we went to our pedi on May 1st, he said that she will be FTT until she can sustain her weight… hopefully without supplements. So far, so good. Right now, her weight is around the 30th percentile… which, yes, it is great!!! I just want it to stay there.

As far as her growth chart… it’s definitely not a curve. It’s more of a rolling hill or a few lumps then a straight line… Then, just recently, a high peek.

And Robbin, you are right about the milestones. Every kid is different. She has been saying more. She said Hi the other day. She says ball all the time and she says Shush… for shoes and juice. So her speech is getting better. She’s just a late bloomer.

-Sarah