Matthew's Occupational Therapy Experience
At first Matthew was an awesome eater. He started at six months like any other baby...we had to teach him how to use the spoon, but he was doing a great job. He would even open his mouth and extend his head forward to take the next bite, he seemed to really enjoy eating! Of course not everything stayed in, but no kid is a pro right off the bat.
When we started our second trial, white potato, we started to have issues with Matthew eating. I used the food processor to get the potatoes as smooth as possible, but that also made them really gummy. When giving them to Matthew I would mix breast milk in until it seemed like the right consistency for a beginning eater. It took a LOT of breast milk, because I was trying to get the potatoes to a "1st Foods" consistency, which is more of a liquid. He did great until the last day of the trial...I guess the potatoes were just too thick....he threw them all up, right there in his high chair. It took a week of solid work and pulling out all of the tricks to get him to voluntarily let us put a spoon in his mouth again. I thought things were back on track, and then two days later it happened again...and that was the end of any fun at meal times.
At first we could still coax a spoon into his mouth. We'd sing, dance, use light up toys, tickle him, let him use "grown up" utensils...you name it, we tried it. And each trick would work, but only for a few days. It got to where if we made him laugh he'd stick his tongue out and curl it up while laughing, so that he could deflect the spoon. And it wasn't fun anymore...Matthew was getting frustrated by the end of each feeding. At first we would use the crying to try to shove more food in, but quickly realized that this only made things worse. All I needed to get him to eat was a teaspoon of whatever food we were trialing, but it was like pulling teeth! I put off feeding him, because it was extremely stressful. He HAD to get the teaspoon of food in, because we needed to know if he was allergic to it. I remember just walking away one day...sobbing. Luckily Nick was working from home and he stopped and took over for me. If Nick hadn't been there I would have lost my mind that day. I mean, how hard can it be to get 1 tsp of a puree into a baby's mouth?
The thought that Matthew needed occupational therapy (OT) had already been in the back of my mind, but that was the day that decided it for me. He needed it. He refused to take a spoon from anyone, and we had tried everything! It seemed like he would go around the house putting everything else in his mouth, but as soon as it was something he could eat, he would just shut down. I seriously entertained the idea of mopping the floor and just putting bits of his safe foods on it. The only thing that stopped me was the thought that it was probably a bad idea to teach a kid with FPIES to eat random things off of the floor ;)
So, while we waited for the OT evaluation I backed off. We took a leap of faith and bought an entire case of CheeCha Puffs on Amazon.com (they are from Canada, so bulk was the only way to get them here in Texas). The CheeCha's were the only baby friendly snack food we could find made with one of Matthew's safe foods. You should have seen us the day they showed up on the doorstep - I think Nick and I literally did a happy dance :) And when we put them on Matthew's tray and he actually put one in his mouth and ATE it...just writing this makes me cry. There is no way to describe how incredibly stressful it is when your child won't eat. Or the joy you feel when they actually eat something! Now we at least had a starting point, something he actually enjoyed eating.
We would still try to use the spoon, but backed off whenever Matthew started to get upset. Instead of pushing the spoon, we would just dip his CheeCha's into one of the purees we were trying to feed him. Anything we gave him seemed to get pushed right back out by his little tongue, anyway. The only reason he could get the CheeCha's down was that they became gummy and sticky when he gummed them, so he couldn't push them out with his tongue because they were stuck to it ;) We also started using a mesh food feeder, which he loved to chomp on. The mesh food feeder actually helped us figure out part of what was going on with Matthew. It seemed like he hated the foods we were giving him...things he used to accept he would absolutely refuse. But when we put it in the mesh feeder he would chomp on it like there was no tomorrow. This told us that it wasn't a matter of taste, it was a matter of control.
When we had our first OT appointment we were given three areas to focus on with Matthew. He did have control issues, as well as a tongue thrust issue and a texture issue. The techniques and tools we used were tailored to help Matthew with his problems, but I've outlined them below just in case they can help anyone else out while they wait to start OT. It was a great experience for us, and since each child is different, I definitely recommend OT to help your little one learn to eat! We had eight appointments before Matthew "graduated." He's still not perfect, but he ate an entire avocado with a fork just the other day, so he's come a LONG way!!!
General Tips
The most important tip they gave was to not let your little one get frustrated. You can tell they are getting frustrated before the crying starts if you look look for the body language signs (turning their head, arching their back, trying to dive out of the chair, etc). If they are, distract them with a toy, a sippy cup, anything that takes their attention off of what was upsetting them. Once they calm down you can try again, but if they are just done and you can't reset them, come back to it later after a break. This was and is hard for us, because our philosophy with our oldest was "no toys at the table..the high chair is for eating ONLY!" It was also hard because I needed to get that 1 tsp of trial food in at one time, so that I would know Matthew had enough to possibly react to.
Texture Issues
This was the most counter-intuitive part of OT. A lot of the techniques didn't even have to do with Matthew's mouth, but they really do work. We found that you really have to stay on top of these techniques...when Matthew started improving we'd slack off, then see him regress, so we'd start up again and he'd improve. It was a crazy cycle and SO frustrating, because he'd eat so well and we'd let our guard down, which would result in a nose dive in how well Matthew would eat.
Technique #1: The scrubby brush! The Wilbarger Technique has nothing at all to do with their mouths, but it really works. Do it every two hours while they are awake. You take the scrubby brush and rub their back vigorously with enough pressure to make the bristles flatten out. Do this while singing "Row, Row, Row Your Boat." When the song is over, repeat on each of their arms (don't forget the tops and palms of their hands), and on each leg (don't forget about both the tops and bottoms of their feet). You focus on their arm or leg for the entire song, and then just add a sing-song line at the end "And don't forget the hands/feet!" while you scrub their hands/feet. This works best on bare skin, but if they have a onesie on you can do it on top of it for their back. You should take off socks, and roll up sleeves and pants legs. Do not do this on their tummy or their head. You should follow this up by doing joint compression on their arms and legs. If they crawl, they get the compression on their arms already. For the leg compression, just stand them up holding them with your hands on each side of their chest. Then make a bouncing motion, pushing down for a second to make sure their feet are solidly on the floor, then releasing the pressure, and repeating about ten times.
Technique #2: Using a Nuk massage brush, rub the inside of their cheek or their tongue multiple times a day. Just enough to get them used to the texture. This can be while they are playing or while they are eating.
Technique #3: Use a Munchkin mesh food feeder to introduce different textures to your child. They can chomp on it and get the feel of more solid foods without having to take an entire bite of it. If you think your child totally hates the taste of a food, you may want to try it in a mesh food feeder. Matthew would chew things to pieces in the feeder that he wouldn't even let into his mouth in their normal form.
Technique #4: Let your child experience multiple types of textures. Fill a bucket or plastic container with different types of things...sand, dried beans, popcorn kernels, dried peas, pebbles, marbles, etc. Put little trinkets in there that they will want to grab (to entice them to actually stick their hand in there). Then let them explore the texture with their hands. You can also let them put their feet in it. Don't push it, if they are freaked out by the texture just back off. Try it again on a different day. Obviously, you have to watch them closely while doing this, because most of these things are not suitable for kids to put in their mouths, or your child may be allergic to them. Use your best judgement to keep your child safe.
Tongue Thrust Issues
Not all babies catch on to how to chew, so you have to teach them this skill. And yes, I know they have no teeth back there yet, but "gumming" things is their version of chewing :) When you chew, you use your tongue and cheek in concert to hold food over your molars. This keeps the food in the right place so that your teeth (or gums, if we're talking babies) can do the work of tearing the food apart. Babies with tongue thrust issues have no clue how to use their tongue, so they just keep sticking it out of their mouth, which causes the food to come out with it. Here are a few techniques that will help you teach your child the correct way to use their tongue.
Technique #1: When putting food in your child's mouth (whether it's a puree or something more solid), place it in the back on one of the sides (over where the molars will eventually be). There's a learning curve to get the technique down, and sometimes it's easier to just use your finger to "hook" it back into the right spot. By placing the food there you give it a fighting chance of staying in, and they will instinctively move their tongue over to explore the food. Make sure you alternate sides...it's really easy to find yourself always feeding one side, but never the other.
Technique #2: Use a chewy tube (the yellow was the right size for Matthew at 10 months old) or Nuk massage brush to teach your child to chomp down. Hold it over where their molars would be, and just let them gnaw on it. The goal is for them to chew on it 10-20 times straight on each side. They can hold it and do this themselves as well. We would roll the brush (or the chewy tube, though it was harder to get food to stick to it) in the food we were trying to feed Matthew to get a few more calories into him...we figured it couldn't hurt ;)
Technique #3: Use a Munchkin mesh food feeder to teach your child how to chomp down. This allows you to introduce them to more solid foods, without the worry that they will choke on it. It gets them used to the up and down motion of chewing.
Control Issues
Your kid should be able to take a spoon from you. Matthew wouldn't at all, so we focused on getting him used to us bugging him all day every day. Every couple of hours we had to annoy Matthew by sticking our fingers where he liked them the least - in his mouth. Over time, he got used to it, and we could increase the amount of poking and prodding he'd endure. The goal was for it not to phase him to have us poking around in his mouth at all :)
Technique #1: Put your index finger on the inside of their cheek, and your thumb on the outside of their cheek. Squeeze them together lightly as you pull your finger out, repeating on alternating cheeks until they get upset.
Technique #2: Take your index and middle fingers, holding them in a "V for Victory" sign. Hold onto your child's head with your other hand, to give yourself leverage and to keep them from wiggling away. Run your "V" fingers down the outside of their cheek, from the top of their cheekbone (by their eye) to the point of their chin, with a good amount of pressure.
Technique #3: Just poke around in their mouths. Be careful to avoid those little teeth (two teeth or ten, they can still really hurt you!). Poke their tongue, press on the back of their gums where their molars are supposed to be, etc. You can make it fun by grabbing their tongue or letting them do it to you too :)
More Help
For more great tips, check out this article from The FPIES Foundation, written by a fellow FPIES Mom who just happens to be a pediatric occupational therapist :)
When we started our second trial, white potato, we started to have issues with Matthew eating. I used the food processor to get the potatoes as smooth as possible, but that also made them really gummy. When giving them to Matthew I would mix breast milk in until it seemed like the right consistency for a beginning eater. It took a LOT of breast milk, because I was trying to get the potatoes to a "1st Foods" consistency, which is more of a liquid. He did great until the last day of the trial...I guess the potatoes were just too thick....he threw them all up, right there in his high chair. It took a week of solid work and pulling out all of the tricks to get him to voluntarily let us put a spoon in his mouth again. I thought things were back on track, and then two days later it happened again...and that was the end of any fun at meal times.
At first we could still coax a spoon into his mouth. We'd sing, dance, use light up toys, tickle him, let him use "grown up" utensils...you name it, we tried it. And each trick would work, but only for a few days. It got to where if we made him laugh he'd stick his tongue out and curl it up while laughing, so that he could deflect the spoon. And it wasn't fun anymore...Matthew was getting frustrated by the end of each feeding. At first we would use the crying to try to shove more food in, but quickly realized that this only made things worse. All I needed to get him to eat was a teaspoon of whatever food we were trialing, but it was like pulling teeth! I put off feeding him, because it was extremely stressful. He HAD to get the teaspoon of food in, because we needed to know if he was allergic to it. I remember just walking away one day...sobbing. Luckily Nick was working from home and he stopped and took over for me. If Nick hadn't been there I would have lost my mind that day. I mean, how hard can it be to get 1 tsp of a puree into a baby's mouth?
The thought that Matthew needed occupational therapy (OT) had already been in the back of my mind, but that was the day that decided it for me. He needed it. He refused to take a spoon from anyone, and we had tried everything! It seemed like he would go around the house putting everything else in his mouth, but as soon as it was something he could eat, he would just shut down. I seriously entertained the idea of mopping the floor and just putting bits of his safe foods on it. The only thing that stopped me was the thought that it was probably a bad idea to teach a kid with FPIES to eat random things off of the floor ;)
So, while we waited for the OT evaluation I backed off. We took a leap of faith and bought an entire case of CheeCha Puffs on Amazon.com (they are from Canada, so bulk was the only way to get them here in Texas). The CheeCha's were the only baby friendly snack food we could find made with one of Matthew's safe foods. You should have seen us the day they showed up on the doorstep - I think Nick and I literally did a happy dance :) And when we put them on Matthew's tray and he actually put one in his mouth and ATE it...just writing this makes me cry. There is no way to describe how incredibly stressful it is when your child won't eat. Or the joy you feel when they actually eat something! Now we at least had a starting point, something he actually enjoyed eating.
We would still try to use the spoon, but backed off whenever Matthew started to get upset. Instead of pushing the spoon, we would just dip his CheeCha's into one of the purees we were trying to feed him. Anything we gave him seemed to get pushed right back out by his little tongue, anyway. The only reason he could get the CheeCha's down was that they became gummy and sticky when he gummed them, so he couldn't push them out with his tongue because they were stuck to it ;) We also started using a mesh food feeder, which he loved to chomp on. The mesh food feeder actually helped us figure out part of what was going on with Matthew. It seemed like he hated the foods we were giving him...things he used to accept he would absolutely refuse. But when we put it in the mesh feeder he would chomp on it like there was no tomorrow. This told us that it wasn't a matter of taste, it was a matter of control.
When we had our first OT appointment we were given three areas to focus on with Matthew. He did have control issues, as well as a tongue thrust issue and a texture issue. The techniques and tools we used were tailored to help Matthew with his problems, but I've outlined them below just in case they can help anyone else out while they wait to start OT. It was a great experience for us, and since each child is different, I definitely recommend OT to help your little one learn to eat! We had eight appointments before Matthew "graduated." He's still not perfect, but he ate an entire avocado with a fork just the other day, so he's come a LONG way!!!
General Tips
The most important tip they gave was to not let your little one get frustrated. You can tell they are getting frustrated before the crying starts if you look look for the body language signs (turning their head, arching their back, trying to dive out of the chair, etc). If they are, distract them with a toy, a sippy cup, anything that takes their attention off of what was upsetting them. Once they calm down you can try again, but if they are just done and you can't reset them, come back to it later after a break. This was and is hard for us, because our philosophy with our oldest was "no toys at the table..the high chair is for eating ONLY!" It was also hard because I needed to get that 1 tsp of trial food in at one time, so that I would know Matthew had enough to possibly react to.
Texture Issues
This was the most counter-intuitive part of OT. A lot of the techniques didn't even have to do with Matthew's mouth, but they really do work. We found that you really have to stay on top of these techniques...when Matthew started improving we'd slack off, then see him regress, so we'd start up again and he'd improve. It was a crazy cycle and SO frustrating, because he'd eat so well and we'd let our guard down, which would result in a nose dive in how well Matthew would eat.
Technique #1: The scrubby brush! The Wilbarger Technique has nothing at all to do with their mouths, but it really works. Do it every two hours while they are awake. You take the scrubby brush and rub their back vigorously with enough pressure to make the bristles flatten out. Do this while singing "Row, Row, Row Your Boat." When the song is over, repeat on each of their arms (don't forget the tops and palms of their hands), and on each leg (don't forget about both the tops and bottoms of their feet). You focus on their arm or leg for the entire song, and then just add a sing-song line at the end "And don't forget the hands/feet!" while you scrub their hands/feet. This works best on bare skin, but if they have a onesie on you can do it on top of it for their back. You should take off socks, and roll up sleeves and pants legs. Do not do this on their tummy or their head. You should follow this up by doing joint compression on their arms and legs. If they crawl, they get the compression on their arms already. For the leg compression, just stand them up holding them with your hands on each side of their chest. Then make a bouncing motion, pushing down for a second to make sure their feet are solidly on the floor, then releasing the pressure, and repeating about ten times.
Technique #2: Using a Nuk massage brush, rub the inside of their cheek or their tongue multiple times a day. Just enough to get them used to the texture. This can be while they are playing or while they are eating.
Technique #3: Use a Munchkin mesh food feeder to introduce different textures to your child. They can chomp on it and get the feel of more solid foods without having to take an entire bite of it. If you think your child totally hates the taste of a food, you may want to try it in a mesh food feeder. Matthew would chew things to pieces in the feeder that he wouldn't even let into his mouth in their normal form.
Technique #4: Let your child experience multiple types of textures. Fill a bucket or plastic container with different types of things...sand, dried beans, popcorn kernels, dried peas, pebbles, marbles, etc. Put little trinkets in there that they will want to grab (to entice them to actually stick their hand in there). Then let them explore the texture with their hands. You can also let them put their feet in it. Don't push it, if they are freaked out by the texture just back off. Try it again on a different day. Obviously, you have to watch them closely while doing this, because most of these things are not suitable for kids to put in their mouths, or your child may be allergic to them. Use your best judgement to keep your child safe.
Tongue Thrust Issues
Not all babies catch on to how to chew, so you have to teach them this skill. And yes, I know they have no teeth back there yet, but "gumming" things is their version of chewing :) When you chew, you use your tongue and cheek in concert to hold food over your molars. This keeps the food in the right place so that your teeth (or gums, if we're talking babies) can do the work of tearing the food apart. Babies with tongue thrust issues have no clue how to use their tongue, so they just keep sticking it out of their mouth, which causes the food to come out with it. Here are a few techniques that will help you teach your child the correct way to use their tongue.
Technique #1: When putting food in your child's mouth (whether it's a puree or something more solid), place it in the back on one of the sides (over where the molars will eventually be). There's a learning curve to get the technique down, and sometimes it's easier to just use your finger to "hook" it back into the right spot. By placing the food there you give it a fighting chance of staying in, and they will instinctively move their tongue over to explore the food. Make sure you alternate sides...it's really easy to find yourself always feeding one side, but never the other.
Technique #2: Use a chewy tube (the yellow was the right size for Matthew at 10 months old) or Nuk massage brush to teach your child to chomp down. Hold it over where their molars would be, and just let them gnaw on it. The goal is for them to chew on it 10-20 times straight on each side. They can hold it and do this themselves as well. We would roll the brush (or the chewy tube, though it was harder to get food to stick to it) in the food we were trying to feed Matthew to get a few more calories into him...we figured it couldn't hurt ;)
Technique #3: Use a Munchkin mesh food feeder to teach your child how to chomp down. This allows you to introduce them to more solid foods, without the worry that they will choke on it. It gets them used to the up and down motion of chewing.
Control Issues
Your kid should be able to take a spoon from you. Matthew wouldn't at all, so we focused on getting him used to us bugging him all day every day. Every couple of hours we had to annoy Matthew by sticking our fingers where he liked them the least - in his mouth. Over time, he got used to it, and we could increase the amount of poking and prodding he'd endure. The goal was for it not to phase him to have us poking around in his mouth at all :)
Technique #1: Put your index finger on the inside of their cheek, and your thumb on the outside of their cheek. Squeeze them together lightly as you pull your finger out, repeating on alternating cheeks until they get upset.
Technique #2: Take your index and middle fingers, holding them in a "V for Victory" sign. Hold onto your child's head with your other hand, to give yourself leverage and to keep them from wiggling away. Run your "V" fingers down the outside of their cheek, from the top of their cheekbone (by their eye) to the point of their chin, with a good amount of pressure.
Technique #3: Just poke around in their mouths. Be careful to avoid those little teeth (two teeth or ten, they can still really hurt you!). Poke their tongue, press on the back of their gums where their molars are supposed to be, etc. You can make it fun by grabbing their tongue or letting them do it to you too :)
More Help
For more great tips, check out this article from The FPIES Foundation, written by a fellow FPIES Mom who just happens to be a pediatric occupational therapist :)
