Thursday, January 8, 2009

Calling All Mom Therapists

Here is a question for my fellow mom-bloggers, particularly those who have kids with Down Syndrome.

Ava is doing so well with chewing and swallowing that I have been trying out some new textures and foods. For example, recently she has eaten chicken salad, pizza, raisins, soft granola bars, well, and spaghetti.

Today I gave her a peanut butter sandwich, which I have done at least twice before without any problems. Today, however, she kept cramming bites in her mouth. I thought she was swallowing them but apparently they were all accumulating in the back of her throat and on the roof of her mouth. I had quite a bit of a scare when she stopped breathing and turned blue. Thankfully I was able to reach back and swipe the big wad of sandwich out on the first attempt but it was a disturbing experience. I was glad John wasn't there because he doesn't do well with these things.

I know grapes and hot dogs are choking hazards, and marbles and Legos, and Polly Pockets, and all the other little items that seem to make their way onto my floor and into Ava's mouth consistently.......(Are batteries choking hazards?).....but I never would have expected a peanut butter sandwich to be one! 

So are there some kind of guidelines for what to feed your kids with DS and when? We have had a problem/miscommunication with our insurance (LONG story) and Ava has not qualified for speech therapy for the past several weeks, thus I haven't been able to ask the speech therapist. However I figured somebody who reads this might have some wisdom to share with me.....Please?

21 comments:

Tracie said...

Charissa,
You should email Barabar at mommylife.net
She's an amazing resource and is always willing to help.

Tracie said...

that's Barbara!

Lacia said...

I would say that since eating and chewing is fairly new to her, I would stay away from anything that is typically labelled as choking hazards for babies that are beginning to eat more solid stuff. Stuff like grapes, raw veggies, nuts, and peanut butter and other nut butters. Because it's so pastey and thick, it's hard to move it around your mouth properly and hard to swallow properly.

I'm glad she's ok. It must have been so scarey for you.

Meredith said...

We are on the SAME time frame here! LOL Emma is doing great eating but the other day she had a soft hawaiian roll (broken up in pieces) and she put too much in her mouth. She didn't stop breathing or turn blue, but after I swiped her mouth she was still not breathing right. It took two different times turning her upside down and pounding her back to dislodge the big piece of bread that had been lodged back too far to see. Last night she did it with Mac' n cheese, but it wasn't that she'd packed it in- I had been feeding her. I thought she'd chewed and swallowed, but apparently she'd just pushed it to the back of her throat with her tongue! Be careful with anything that is not going to easily dissolve in the mouth. Make sure the bites are small enough that if she doesn't chew and swallow properly it won't be lodged. It's very scary! Any types of soft breads, MARSHMALLOWS, and the things already mentioned are all in that category. Granted, just making sure you have both eyes on her when she's eating is a good idea too since who knows what our kids with such delayed eating responses could do!

Jeremy and Melanie said...

Batteries may or may not be choking hazards, but if a child swallow them (even a small one), they need to go to the ER immediately!

My name is Sarah said...

We had this problem with Sarah. I would use two plates and cut things into tiny pieces and only put one or two bites on her plate at a time. I then would visually check to make sure her mouth was clear before releasing additional bites. For a while I made it like a counting game, so she enjoyed it. I actually still do this with a few things today, such as mozzarella sticks, because we have had some close calls in restaurants.

I also have been told that children with Ds do not produce as much saliva because of their smaller oral cavity and saliva is what helps move the food through the mouth and airway. When Sarah was younger she had a few swallow studies done at the hospital and they found this to be true.

Charissa said...

So should I stay away from breads altogether? If it's toasted would it be easier to chew? I wish I had a flowchart or something!

I guess I can see that the peanut butter was a bad idea now. You live and you learn I guess. When we were at the Down Syndrome Christmas party we witnessed a boy receiving the heimlich (sp?)maneuver. That has made us pretty edgy ever since.

Anonymous said...

Bread is probably something to stay away from for a little while. It gets gummy and wadded up in their mouths. Sawyer does alright with biscuits now but there was a time when I had to really watch him with those. Sandwiches are doled out a bit at a time. (My 2 year old w/o DS still wads stuff up in his mouth and gets a bit choked) I don't think they realize it isn't going down and they just keep putting it in until their mouths are too full to swallow it. So I'd do like others suggested and put a couple of bites on a plate and then make sure the mouth is clear before giving more bites. We do that with our 2yo since he doesn't regulate his bites too well.

Good luck. Glad it all worked out ok. I know that's a scare and I totally understand the glad the hubby wasn't there. My husband used to freakout when Sawyer would get choked.

Jan

Anonymous said...

hello this is the rd from indiana and just had a minute and caught your last blog. don't feel bad. pb is a choking hazard for all ages and all children pocket food at sometime of their life. abby has done that several times but her gag reflux always makes her spit up the wad of food and i imagine since the relax muscle tone of ds ava is just not gagging it up. i would not give up on bread just make sure small pieces and each bite is well supervised and swallowed before the next bite. like sara's idea. pb is something i would only give to children well acomplished in eating skills. as well as any pasty type item, but i am not a speech therapist. does she not get speech therapy at the school? does the school have a st? if so i am sure she/he wouldn't mind if you called. much love and prayers, michelle

Traci said...

Oh my, I could write a book on choking and Down syndrome. Not to alarm you but Ashlyn is 9 yo and we still have to break her food. She gets anxious and stuffs food in her mouth when we aren’t looking and then of course, she is gagging and not breathing. We have been dealing with this since she was around 2 – 3 years old. We still cannot give her a full plate because the girly acts like she hasn’t seen food in 3 days at every meal! No one can leave a plate of food in the kitchen and walk away because Ms. Piggy will grab the contents and cram them all in her mouth. We don’t have much luck with the HEIMLICH and Ashlyn. We actually do the gag reflux on her by sticking a finger in and gagging her. We have dug out WHOLE Chicken nuggets that she steals from someone else (we don’t give her whole ones), WHOLE peanut butter crackers, WHOLE marshmallow, baby wipes, thumb tack, baby carrot, wads of bread, rocks, a dryer sheet (this was the worst) and honestly I didn’t think we were going to get that one out… my baby’s life flashed before my eyes. Luckily my cousin was there and was thinking quick… I was trying to reach into Ashlyn’s mouth to get the dryer sheet out of her throat and she kept biting me. I was crying hysterically and yelling for someone to call 911. My cousin thought quickly and grabbed a spoon and we put the spoon on the inside of her jaw in order to protect my finger from her biting me and I finally got it out. At school someone had dropped a piece of a biscuit on the floor and she stuffed a HUGE piece in her mouth, but luckily her teacher was able to get it out with the Heimlich. Thank you Lord!

Make sure that your kids understand that they cannot leave food lying around that is within her reach and tell them why. One of my worst fears is that Ashlyn will get food lodged in her throat when we aren’t looking and she won’t know to run to us for help. Good luck!

traceylynndel said...

Katya has this problem too. Not so much now. She gets in such a hurry or so excited to be eating she shovels it all in as fast as she can. At first I cut everything into little tiny bites but then she would put all the little bites in at once. So then I started giving her one bite at a time. That made her mad but she got used to it. After a while I gradually increased the number of bites she could have on her plate. She still leaves food up in her palate and doesn't clean off her tongue when she is finished eating. That makes for some terrible breath later after it has been sitting in there a while. Now I just have to remind her to only eat one at a time. She only spent two and a half years in the orphanage and had never had solid food. What she did eat was shoveled in at break neck speed. Bottles were taken away at only a few months old. They "ate" from coffee cups with very large spoons. Never feeding themselves. A caregiver would sit her on a chair and start shoveling as fast as possible so they could finish her and start the next child.

Tracey
www.delrosarioadoptionsaga.spaces.live.com

Christina L said...

Wow. What a scarry time. I read through most of the posts and even though I don't have a child with DS I thought there was some wonderful advice. I would think that you could toast the bread to make it harder. I remember doing that when my kiddos were much littler. Limiting the amount of food on her tray/plate at all times would work well, too. Doing bite-size pieces as if she is a beginning eater would help her with the size of food in her mouth. I did peanut butter with my kids after they reached one, but very sparingly. A small spread of it on plain or toasted bread, then cut up into tiny pieces.
Good Luck. We are always learning on how to best be a mom, aren't we?

Charissa said...

Thanks everyone for great advice. I am always amazed at the combined wisdom of mothers and have loved blogging for just that reason!

I emailed Barbara like Tracie suggested, and would you believe within minutes she had connected me with a dietician who said this:

Hi Charissa, my name is Margaret and I am the dietitian that Barbara mentioned in the below email. Barbara is right about DS kids not being the only one that can choke on PB. My neighbor, a 40 year old man, was eating some of the PB&J sandwich that his child didn't eat when he began choking on it, ran out of the house purple in the face and had another neighbor perform the Heimlich (sp?). Fortunately, there was a happy ending.

Now to your question... If this is the first time a choking episode has happened then it may have just been an isolated incident and you can just make some adjustments for the future. One idea is that if you spread a small amount on each slice of the bread and then the jelly in the middle, it won't necessarily be too thick and less of a choking risk. Another option would be to mix the jelly with the PB to thin out the PB prior to spreading on the bread. You could also use crackers, such as Ritz, to make little PB&J cracker sandwiches or cut the sandwich into very small bites (i.e. 1 whole sandwich could make 6 small ones). Always make sure a beverage is available for sips between bites especially when serving foods with a thicker consistency.

If you've had other instances of your child choking, then you may want to discuss with the child's pediatrician. They could have your child evaluated with a speech language pathologist (SLP) and have a swallowing evaluation done by them. I had this done with my second child when he was a baby b/c he was aspirating secondary to severe reflux. The SLP would be able to prescribe a specific "safe" thickness level of the child's food.

Lisa said...

Alex used to have the same problem and I thought it would never get better!! We toasted his bread and limited him to 1 or 2 bites on his plate at first. As he got used to it, he learned his limits and now he can handle an untoasted sandwich by himself. Katie on the other hand chews pb and j really well, but I'm sure if we handed her the sandwich, she would choke herself at this point.
I can't count the number of times I did the Heimlich on Alex when he first started eating solids (and we were very careful). Katie even had us at the point where my sister had to call an ambulance one time!
Some day you won't have to worry about it anymore. It's good you were right there when she had trouble.

Shea said...

Wow, she is doing great with eating!!! She has come such a long way. I'd wait a while on the peanut butter though. You might try sandwiches with a little cheese wiz(do you have that there?) It would be easier I think and less likely to get chocked on.

Stephanie said...

If you give her orange slices cut them into teeny bite size pieces.. they are easy to choke on. We had 2 kids in my toddler class this week start gagging on them and they were 3 yr olds.

Christina said...

Kallie used to have problems with food getting caught up in her palate as well. Especially bready/doughy things. I would say when you fed her those things to be sure to stay with her and check her palate a lot to be sure it isn't sticking up there. Sorry for your scare!! Thank God you were watching her closely!!

McKenna said...

Darah had this problem for a long time as well! Even crackers would cake up there...oh, and goldfish, too! She is now a munching pro...but it took some time and practice! Maybe you can qualify for speech via the feeding route if you can't via the language route?? IDK?

Bethany said...

I think it is fine to give it to her, you just have to make sure she downs the first bite before she gets the next. Nika does this too with meats ... chicken, hamburger, sausage, anything. Usually I try to get her to drink some in between because many times that washes it down.

The problem is sensory, really. Kids with DS and low tone don't always have the senses to realize their mouth is full, or that there is food impacted on their palate (which probably is higher than normal). Some therapies say to do oral sensory exercises prior to eating ... we used to use the sponge on a stick things with Payton. Talk Tools promotes that. Here is a link ...

http://www.talktools.net/s.nl/it.A/id.786/.f?sc=23&category=1335

AZmomto8 said...

(((((((((Charissa)))))))))) Meghan used to stuff her mouth too full and we would have to pull the food out. The low tone our kiddos have also affects how well they feel the food in their mouths, so they over stuff.

We give Kara PBI's too, but I cut them into 1/2 inch squares and she eats applesauce with it to make it easier to swallow. She will not eat the crusts, so that helps some. She eats right next to me as I feed Amanda so I can watch her and make certain she eats slowly.

She choked on a corn chip when she first got here. It actually sat in the back of her throat for a while because we did not see her pick it up and try to swallow it, she took it from Meghan (we think, could have been a hidden kid place, like under the sofa LOL. She was not choking, just complaining and drooling. We recognized the signs from when Meghan was a toddler and did baby Heimlich on Kara; it took a long time to dislodge it because the stinker kept sucking it back into her throat, trying to swallow it. We finally pulled it our once it was visible. I think both of us trembled for a long time after that. Kara had to be watched like a hawk after that, she still tries to put things in her mouth she shouldn’t.

Alicia said...

we have worked with Elias with the concepts of chew and swallow since baby. Now that Ava is eating, I will recommend to always add the word *chew* and mimic the actin so she knows what chew is and how she needs to do it.
And the same with swallow, to prevent for food to stay in the mouth, of course once is chewed

Also, do exercises with the tongue, in Mexico we have the obleas, dont know how is called in English (is the ones for communion in catholic church) our ST used them too much, because they tend to stick on the paladar, and will make/force them to remove it with the toungue, of course you or the kids could do it along with her so she knows how to do it... nfront in a mirrow is a good idea