Help with Drinking Liquids

[NoahsMommy]

Hi. I haven't been on here for ages so for anyone who is not familiar with us...my son Noah has DS. Noah is 3 years old and has had a lot of medical issues...more than the average child with DS. Because of all of these issues, Noah was almost 2 before he was able to take anything orally. Things have been progressing and although he still gets the majority of his nutrition through G-tube feedings, he is eating orally and does a great job. He LOVES food!!

Our biggest problem is liquids. He does not have good lip closure and does not know how to suck (he never took a bottle) and therefore can't suck through a sippy cup. Basically to give him liquids we use a straw with the liquid in the straw and then drop it into his mouth a little farther back so it doesn't run out. We also sometimes use a medicine cup since they are small and flexible and we hold his chin up while giving him sips. This is all very time consuming, plus he will never be able to get rid of the G-tube until he can get enough fluids orally.

So I was wondering if anyone has any suggestions or techniques I can use to help him. Any ideas would be appreciated. We have tried sippies without the no-spill valve in and found it more difficult than the straw or medicine cup method. I'm just not sure what I should be doing to help him develop whatever skills he needs to be able to drink liquids.

He turned 3 in Dec and could have started preschool at school, but because of all of the past medical issues he has had we opted to not send him. He just had his trach removed in Oct. and we did not want to subject him to all the germs and viruses that would be at school during the winter. Also he still is not walking or talking and is on the small side. He does receive outpatient therapy at school, however I have been informed by the OT and ST that they will not work on feeding unless he is actually in school. He has an appointment with the feeding team next week so I am going to ask about getting private therapy for him in addition to help with these issues.

We have recently decided to enroll him in a daycare program for a couple of mornings per week in a 2 year-old class (since the gap in his development and other 3 year olds is so large) to hopefully help him gain some ground over the summer before we put him in preschool at the school in Aug. It would be nice if he could drink independently so the teacher will not have to be so consumed with him during snacks and meals.

Any ideas or suggestions appreciated!! Thanks!!

Melinda

[Connie]

Melinda,

I think you will be surprised at how far he comes being in preschool.

I know being in school and having someone besides mommy using different approaches has really helped Collin in some ways.

Now Collin does not have a G-Tube so I am just throwing out suggestions but, have you ever tried a juice box or pack. When you put the straw in you can give it a little squeeze and some of the liquid will come out. This may give him the idea of how to swallow liquids from a straw and eventually suck from a straw. Now I am not saying this is not going to be messy because it can get really sticky but....Good luck!!!

Connie

[meghans_mom]

we started meghan with thickened liquids....much easier in my opinion.
you can either buy the yogurt drinks but they may be too thin or thin out yogurt slightly with a little milk. start thick and procede to thinner and thinner as you go.
Meghan's school regularly served the kids thickened juice. a fruit juice mixed with applesauce. same idea...start thicker than move on to thinner as it gets easier.
there are ""cut out cups" that help - but the medicine cup thing works really well too...that's what we did with meghan.
here is a website that shows the cut out cups www.beyondplay.com/ITEMS/T276.HTM
talktoolstm.com should also have them, and there are other websites as well. you may want to browse the beyondplay website for other things they have as well.
we did the straw thing as well...you take the straw, immerse it in the liquid and put your finger over the top to hold the liquid in. place it in the childs mouth and encourage them to suck, or drop a few drops in first to have them get the idea.
also - you may want to "wake up" his mouth and face area before you practice drinking...it kind of centers the child and makes them more aware of the face for this activity. take a washcloth or sponge (warm water) and stroke - always towards the mouth - cheeks inward, top lip, bottom lip, a few minutes total. use the NUK massaging toothbrush on the lips, tongue and teeth/gums. you can do this at other times as well to sort of exercise the muscles there.
best of luck - laurie

[kll81176]

maybe try a Nuby cup from Walmart. IT has a really soft spout and opens more from movement rather than sucking. My daughter Karley had alot of feeding troubles and did not take a bottle till she was 17 months old, she was ng tube feed since birth. We had to give her only thickened formula to get her to take anything by mouth, she seemed to be overwhelmed by regular formula,water and juice. She is 3 now and still gets choked sometimes on drinks. But with thickened she seemed to be more in control of it and aware of it in her mouth. She too has had alot of medical problems and it was a long journey to get her to were she is now with her eating any advice I can give , just let me know, Kristin

[Emilysmom]

Thanks so much for posting, Melinda!!! I always love to hear about Noah! How's Noah's big sis?

You have gotten some great ideas, and the only thing I can think of is possible oral motor exercises to help with lip closure. Over time, maybe that could help with the muscle control inside his cheeks and lips.

Again, it's great to hear from you,
Susan

[dannysmom]

We had our OT visit today and she brought this bottle that she makes to teach kids how to drink from a straw. It is like the old fashion ketchup bottle...it has a pointy top..and you squeeze it. Well she cut off the tip and inserted clear tubing. So you put the liquid in the bottle with cap and straw attached...and you can squeeze the bottle to bring the liquid up through the straw (it is the same concept as squeezing a juice box..but you can put whatever liquid you want inside). So once they pucker around it...you squeeze it and get the liquid in their mouth. Over time, the OT said they will develop a stronger suck so they can suck the liquid up into the straw themselves...but to teach them...you squeeze it.

If I am not describing this bottle good enough...just pm me and I'll take a pic. The OT makes these bottles herself..she said they work the best.

[Tammy]

I thought perhaps one of those "Sports Drink" type bottles with the pop up top.
We have some here with a "rubber" pop top, so it is not so hard on the teeth and mouth.
But with the top being fairly bulky, it may be easier for Noah to close his mouth over it, and he or you can squeeze small amounts of liquid into his mouth.
Just a thought.

[laurasnowbird]

Melinda,

We used the honey bear with straw from Talk Tools to transition Ethan from bottles to straws. He didn't have good lip closure either. This is a close-up of the honey bear:

www.talktools.net/isroot/talktools/ImagesOnline/largerview/2003%20honey_bear.jpg

This is a link to the page to order:

www.talktools.net/cgi-bin/talktools.storefront/441081e1058b135027414200c1490628/Catalog/1049

At four years old, Ethan still loves these. We were strongly cautioned to avoid sippy cups if at all possible because they are developmentally not appropriate for our kids, and teach a forward tongue movement. We get enough of that already, LOL!

The really nice thing about the honey bear is that it is flexible, and to help teach him to suck, you can squeeze the belly of the bear and it makes the fluid come out. If that is a step too far, maybe start with bottles first, try the Playtex with the liners, because you can stuff a washcloth in the bottom of the bottle and push upward, forcing the liquid out. Does that makes sense? Given his age, maybe try the honey bear first, and you'll have to teach him to close his lips around it. It was a two person job for us in the beginning, but it worked out very well. Good luck!

[ashleysmom]

Melinda, I don't have any helpful information (sorry). But I did want to say Hi. I have missed you and Noah.
I still have his little picture on my fridg.

I was thinking about you funny you should post.

I also wanted to ad how much better Ashley has done since being in preschool. It really made a BIG difference.

Hope to hear more about you and Noah. Great hearing from you.

[NoahsMommy]

Thanks for all of the great suggestions!! We tried a couple of them already last week. I used a Kool-Aid burst bottle and put a straw in it and waterproof tape around the opening to prevent a big mess. This way I could squeeze the liquids into his mout...BOY, did he HATE it!!! He let me give it to him about three times and then absolutely refused it. So next time I gave him a yogurt smoothie with a tad bit of milk added and used our old straw method (holding the end and letting it drop into his mouth)...and what do you know...last night I actually got 3 sucks from him!!!! I was so excited since it's the first time ever he has sucked on a straw. I actually got a little too excited the first time and scared him and he started crying. I have to watch myself.

I don't know why I didn't seek help on here before now....things have just been so crazy the past year or so.

Thanks for asking about Kaitlan Susan. She is doing great...she's in 2nd grade now and has been doing gymnastics for about 8 months and loves it! Noah absolutely adores her and signs for her during the day wanting to know where she is. He actually went to the front door the other morning and sat there signing for her. I guess he thought it was time for her to come home from school.

It's official...we are going to hold off on preschool until next Aug. but go ahead and enroll Noah in daycare starting in May for 2-3 morning per week in a 2 year old room. I just feel that with his delays being so large he will do better with 2 year old vs. 3 year olds. Anyone else ever done that? I konw some therapist/parents look down on doing things like that because it seem you are holding your child back but I really think it's more beneficial for him in the long run. We will do daycare through July and then preschool in Aug. Hopefully he will have gained some ground developmentally and won't be so far behind other 3 year old.

I best go for now....Thanks again for the advice. We see the feeding team on Tues. so will be asking about getting him some private ST to help with talking and hopefully with drinking. Eating has really come along the past year so I think we are good there.

melinda

[steffipoo]

HI!!!!!

I have got an idea for you. I did this with Olivia to get her to drink from a straw and she had a TERRIBLE time with cups sippys and straws forget about it. BUT what worked to get her used to the straw was...Purchase a hair tint bottle(the kind you can cut the tip off) clip the tip of it. Get a juice box straw. Put it through the hole. It should fit really snug. No movement at all kinda tight. Anyhow... Then you can show Noah how to squeeze with his hand the tint bottle to have it go up the straw and to his mouth. This worked beautifully for Olivia when she had outgrown a bottle but yet could NOT for the life of her drink from a cup or much of anythin. No juice boxes cause she couldn't do the straw till late. So I did this and it worked so well and she drank and eventually learned that she could drink from it like a juice box. I think Liv did it by accident then it clicked OH YEA....Good luck... Steff

[mommygwen]

We use the hair tint bottle also. I purchase them at the beauty supply shop. Then I buy several feet of clear tubing from the aquarium shop. I cut the tip off the hair coloring bottle and fit a straw length of tubing thru it. The clear tubing lets you see how much liquid is being forced up by squeezing the bottle. yougurt smoothies and milk shakes are popular at my house. A theapist told me that cold "wakes up" the muscles in the mouth. So eating popsicles and Ice cream can be considered therapy.

[kokie]

What I would HIGHLY recommend is Sara Rosenfeld-Johnson's drinking straw set. She only lets kids drink out of straws, because of your very problem you are having. It is a set of straws and you can make them longer. She also has horns, I would recommend. Her site is www.talktools.net

Qadoshyah

[Many]

I don't really have any suggestions, but I got so...excited for Noah when he got 3 sucks!!! I'm sure Noah will be drinking in no time!!!!