Pacifier Tips
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Question:
Could anyone tell me if your child with BWS has taken a pacifier or not.
 Were they able to suck without it falling out.  We have tried every kind
 and she really acts like it would help her settle down, since she has colic, if only she could keep it in her mouth.  We hold it for her sometimes,
 but she still has to rest now and then.

Tip #1
Try putting a rag through the whole of the pacifier. That helps somewhat. It helps weigh it down if they are laying in bed.  Depending on the age of your child.

Tip #2
Just to add to the tip above.... A cloth diaper works well for this trick too. Just please make sure you don't put anything in bed with your baby that could block her mouth and suffocate her. Tiny babies aren't even supposed to have blankets in bed with them. If your baby is unable to lift her head up (and turn it away from something in her face) she should not be left unattended with such a cloth in bed with her. Our baby girl loves to 'cuddle' with anything cloth and she's always pulling such things over her face. This would have been very dangerous when she was a newborn and didn't know how to get the cloth back off of her face on her own.

Tip #3
Our daughter was completely unable to keep the pacifier in her mouth by herself. We spent a lot of hours everyday in the first few months with her in our arms holding her pacifier in her mouth for her. Later she got to the age where when we put her to bed, we'd pull her hand close up to her face so she could hold the pacifier in with her hand (she slept on her tummy then) ... and she got the idea fairly quickly (but that's only when the baby is 3-4 months old and understands that his/her hand can be used as an aide in this way). And then later she could pick it up and put it in herself and hold it there for as long as she wanted it. Now she doesn't use a pacifier at all. It takes a lot of love and patience and time, but I agree that a pacifier can help tremendously to calm a tense little baby. And I have to qualify that last statement by saying that I am a serious hater of pacifiers. I hate seeing older babies/toddlers with that ugly thing covering up their beautiful faces all the time. But if it helps make a fussy or otherwise stressed out baby a little happier....well you have to do whatever you can to help him/her out.

Tip #4
We had this problem as well and found a solution with a bottle. There is a bottle out there that has a hole in the middle of it for the child to grasp easier. Using the 4oz. size, we would put a piece of gauze (dampened with water or juice) inside a "NUK" nipple (18-3 year old size as he had severe macroglossia and could only grasp this nipple) then cap it before screwing the nipple ring on to the bottle.  (These caps are those used for traveling so liquid can't spill out and as it has been years, I have no idea what they were called!!) This cap wouldn't allow air to get into the nipple either. We would then take a cloth and squeeze it through the hole in the bottle to prop the bottle up for him.  The cloth was only enough to lean on and not one that could cause a suffocation problem or one that could slip out easily. This was the only thing that would calm him with his surgeries as well and the nurses would jump at it and say..."OH NO! He is suppose to be NPO!!"  When we showed them what we did and nothing was going through the nipple they not only loved the idea but in turn gave us a scare. After my son's pancreactomy, we noticed a red stain in the nipple. Turns out, one of the nurses wanted him to have a "better taste than spit" as she put it and added a drop or two of cherry juice to the gauze! 

Tip #5
I've been reading a lot of people's letter's about pacifiers and I have no idea if this will help, nor am I making any recommendations, but it worked for us. My daughter was a breast fed baby and her tongue thickening is limited to one side. She definitely had her fussy times as an infant and would never take a pacifier (we tried every brand there was). The only thing that would calm her was nursing. However, nursing for hours at a time is not feasible (there's a little friction problem). Finally a nurse suggested sticking my middle finger in her mouth, pad side up, nail down. It must have simulated the shape of a real nipple and worked like a charm. The advantages are that you won't lose it, you don't have to replace it, and you know where it's been (at least one would hope). The obvious disadvantage is that you're still attached to your baby but look at it as extra bonding time. When you're a desperate parent, you'll try anything that works.

Tip #6
Yes! A big second to the above suggestion with using her finger instead of a pacifier. This is the only thing that worked for us too (my daughter also was breastfed). The only difference is that I used my pinky and we called it her pinkie-binkie and someone told me I should market it!! 

Tip #7
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Disclaimer: All information on this site, except for that from the doctors and researchers, is given by volunteers and parents. The information given is non-professional advice only and is not meant to replace the medical expertise of your doctor. The creators of this web site do not censor or edit tips submitted and are not responsible for any errors or misinformation. Please consult your physician for more information on how best to treat your child.

this page last modified: Tuesday March 27, 2007