You know when you write something and you feel like you have covered all the bases but then a couple days later you realize you missed some pretty substantial points...well that is what happened so I am here to follow up on my original Oral Adventure with a few other tidbits.
Periactin (Cyproheptadine): This is a type of prescription medication that was first put on the market to help with allergies. However, over time they realized that this same drug increased the users appetite significantly. You really have to google it and find forums about people using it solely to increase appetite but it is prescribed for just this reason. Noah was prescribed this drug and put on an original 2.5 ml/ 2x daily schedule. However, we soon realized after the first day that this was too much for his little body. We dropped it down to 1 ml/ 2x daily which worked for over a month. Your body does tend to get used to this medication so over time it will built up a tolerance and the usefulness will start to decrease. Since we dropped him down to such a small dose we have been able to increase it a tiny bit at a time over the course of a few months to keep his appetite stimulated and keep our little guy hungry. It really has worked wonders for us. Some people say it works so well because it makes you so thirsty. We would not know if that was the case for Noah seeing as he wont drink for us no matter what. However, he consumes so much more and is hungry more often than he ever was off of it. We have played around with this medication and will take him off of it completely for a few days and then start the small dose over building it up over time. Our doctor has given us permission to do this. Without this medication I am pretty positive Noah will have never been able to gain the weight he has. I have also read that food tastes so much better while on this medication which allowed Noah to experience new tastes and we have found that he is in love with avocados which is wonderful since they are packed with calories. We buy a bag every time we visit Coscto and then we blend them with all kinds of other foods and then freeze 2 ounce servings in glass jars (used baby food jars). He can eat a jar every day and that alone is over 100 calories for just 2 ounces depending on what we mixed in it. (see what I mean about forgetting to talk about some important tidbits...this one is major and yet it still slipped my mind).
Exercise Band Tubing: Not just for those arm or leg stretched anymore. You can actually use the tubing part to help with chewing and teething exercises. We picked up one of these bands at a local discount store for $5. Buy the extra strong bands instead of the easy stretchy kind. Go home, cut off the handles, but the tubing into pieces around 6-8" long, wash them in the top rack of your dishwasher or in really hot water. Then with adult supervision put one end of the tubing into your child's cheek and watch as they start to chew on it. You might have to get the chewing motion started by pressing up on their jaw first. This band is durable and flexible enough to provide a stimulating and enjoyable tool for your young one. If your child has fully grown teeth they might be able to bit really hard and puncture the tubing but this tubing is durable enough to only leave a hole and not tear off at all. For extra strong support you can tie knots down the tubing before you cut it into pieces and the knots will also add as a chewing tool. ****you must always supervise your child while using this technique and please be extremely aware of them not choking or sticking it down their throats. You will also want to evaluate the tubing as you go along to watch out for any hole puncture or pieces that look like they need to be cut off. I hold the tubing for my son the whole time. You might notice that their saliva will get into the tubing and collect there. Be sure the wash the tubing after every use and store in a zip lock bag for sanitation reasons. You can even put the tubing in the freezer for 10 minutes to add additional sensations. I do not recommend leaving it in the freezer for too long however to prevent the rubber from breaking down by freezing.
Mesh Teethers: NOT like the ones I picture below.
These are wonderful tools on the market. However, for my little hypotonic guy they are just made too big and the mesh bags are just too wide for him to really get into his mouth. Now, if your child can use these toys then I highly recommend them. Noah however could not because of the reasons I just stated. I found that buying some soft mesh material, putting smaller softer foods in them to start off with, and then twisting the material until it formed a small little pouch, Noah was more apt to actually accept it in his mouth. It was much smaller, didn't have this massive plastic handle to intimidate him, and still provided the same type of teether but more suited to his aversions and weak mouth. I liked to start off with diced canned pears or peaches. They kind that are cut into tiny squares and were soaked long enough in the juices to soften them just right and provide some intense fluid flow in his mouth. You can also try chunky applesauce or mushed avocado or carrots. The mesh will trap any pieces so they do not choke and over time they learn to trust the mesh material and will accept it more and more. The thing that I liked the most was that he learned to take on the juice and fluids from the different types of foods without having to actually swallow the chunks. After he mastered a certain type of food using the mesh I would do it again but add the smallest of pieces of the food directly into the same side of his cheek so that now he would feel the substance and have to swallow it. Avocado worked best for Noah since it was smooth and soft and not full of too much juice like the fruit. You can then eventually work up to testing just the fruit piece by piece into their mouth without the mesh cloth. ****I would cut tons of these clothes and then throw them away after one use. Just make sure the cloth you use is strong enough to not fall apart in their mouth from using their teeth.
Pasta & Grains: Now that Noah has surpassed most of his oral aversion to textures specifically we have started to introduce him to different tiny pastas or grains. Below are some of the types we have used. We start out with literally putting one tiny piece into his mouth (which usually goes unnoticed) and then we up it to 2, 3, 4, ect. Depending on what the pasta or grain are coated with usually depicts how likable it is for him. Most tomato based sauces he likes but there are a few that are too acidic for him especially when he is about to cut a new tooth and then he wont swallow it. The Quinoa is probably the one that we have had the least success with because this grain falls apart in the mouth which is very textured and Noah is not a fan yet. Orzo made with butter, heavy cream, parmigiana cheese, and a little salt and/or pepper is probably his favorite. The coating is smooth and creamy enough to help with the swallowing action so it doesn't stick to the roof of his mouth or down his throat. Spaghetti O's we have just recently tried. I found that the can contains different sized O's and he can easily chew and swallow the smallest and next to smallest O's but the bigger ones will break open to form a long string shape instead of an O and then he spits those out. The sauce that Spaghetti O's comes in isn't too acidic for Noah and he is able to swallow most of it. When he got tired I threw the rest into the blender to bend it for him and I did have to add a little Rice Cereal to thicken it up for his to eat the rest. I bought the can with the meatballs and I couldn't believe the amount of calories I was able to get into him and he liked it.
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| Chicken & Stars/boxed chicken noodle |
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| ORZO/SpachettiO's/Acini de Peppe/Quinoa |
Bottles and Sippy Cups: Like I mentioned in Part One of this posting we have tried, I think, every single type of bottle or sippy cup there is out there. Those for $1 picked up at thrift stores to those that cost $20 each. We have tried different nipple flows for bottles, have taking the stoppers out of sippy cups, and I even went as far are super gluing a couple different nipples together in hopes it would work for Noah. None of them have so far. However, just because it didn't work for Noah doesn't mean it wont work for your little one. Here are my thoughts on each of these bottles/cups. Because Noah has severe hypotonia any form of bottle or sippy where you have to bite down really hard and or suck to get fluid out is a no go for him. We have wasted too much $$$ on these types so we have had to try to figure out other ways to get fluid into him.
Honey Bear Cup: Literally an empty honey bear with a straw. You can buy these online for around $10 or make your own for around $2 each. Buy some empty honey bears with the lid that can open and close not the kind with the funnel top. Then go to your local hardware store, in the plumbing isle, and find 1/4" aquarium/fridge tubing. Cut a piece long enough to touch the bottom of the honey bear and leaves about 2" coming out of the top hole. Voila...your own honey bear cup. The ONLY thing to be aware of is that the size of the hole int he lid and the width of the tubing has to be tight enough to make a good seal or else you will not get the desired pressure suction in order to use this effectively. We had to literally use pliers the first time we tried to thread the tubing through the lid. The idea of this bottle is to fill it the liquid in the desired consistency as is allowed for your child. Then insert the tube/straw into the top front of their tongue like you would using a straw yourself. Then squeeze the honey bear slightly to allow the pressure to push the fluid up the straw and onto their tongue. It takes some getting used to for everyone involved but if your child cannot suck this is a good thing to try. If they cannot keep the fluid in their mouths try thickening it a bit so that the substance sits on their tongue. Allow them time to figure it out and swallow it before squeezing more into their mouth.
Cup Out Cup: These cups come in different colors and each color is a different size and flexable strength. You can easily see what fluid is going into their mouth and you are able to squeeze the cup to form their mouth better than a typical cup. You want to make sure that you are not pushing this cup so far onto their lips to where the edge of the cup is touching the corners of their mouth. If this is happening you are pushing too much cup into their mouth. You want the cup to touch the front part of their mouth and hopefully they will be pushing their lips onto the cup. It can get messy trying this for the first time so a big or towel is recommended.
MAM Training Bottle Nipple (6+ months): My son is stuck on MAM products. The only pacifier he will take is a MAM and the only bottle he can drink from (asleep) is a MAM. I think the reason for this is because he has a higher than average palate and the MAM nipples are build wider, rounder, and larger than other brands. The MAM Training Cup is one than has worked in the past for Noah because of the design of the rubber nipple. We take out the fluid stopped under the nipple and thicken the fluid so he wont choke but it can still drip out of the 3-4 holes on the top of this nipple. The soft pliable texture is each for him to gum on and yet he still doesn't have to necessarily suck to get the fluid out. It is large like I mentioned so they do have to open thier mouths wider than with other nipples and training cups. We still work with this one weekly and it has been the most successful for us so far.
Pigeon Cleft Palate/Lip Bottle Nipple: This bottle nipple was suggested to us by our Speech therapist. This nipple works under the assumption that your child cannot suck or seal their lips/mouth. At first we thought our prayers had been answered because that is exactly Noahs problem. You have to kind of gum or chew on this nipple to work or at least apply pressure from some area of the mouth to get the fluid flowing. There is a small white ring that you have to insert in the nipple if you want it to work. Otherwise it acts just like a typical bottle nipple. You do not have to buy the pigeon bottle for this to work. The best bottle to use are the really cheap Walmart brand bottles that are like $1. You need a very small ring for the nipple to fit. Dr. Brown bottles work as well but the seal isn't the best. We will continue to try this nipple but Noah keeps thrusting his tongue out of his mouth with it and that does not allow for the proper pressure to get the fluid to come out.
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| MAM Bottle Nipple |
Other Bottle Nipples we have tried: Tommee Tippee nipples have a much wider base which is good for those who need that extra "face plant" on the base of the bottle nipple. It simulates the natural breast more than other brands and the nipple itself is rounded and bulbous. The MAM nipple is the one that we have had the most success with (while Noah is sleeping). This nipple has a flatter shape than most but is still really wide with a flat spot on the nipple base for deeper lip attachment. The Playtex nipple never worked for us at all and we think it is because the actual nipple portion is really short so Noah could never latch onto it properly. The medela nipples we used until Noah had to go on the feeding tube. He was able to latch onto these really easy and was the only kind of bottle and nipple we used during his first 4 months because I was nursing him at this time. Once he could take a bottle again he lost his ability to latch onto the small shape of this bottle nipple.
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| Tommy Tippie/ Playtex/Medela |
Nipple Flow: All brand of bottles will offer different nipple flows. They can be called stages or flows or sizes or range by age of infant. We found that the fastest flowing nipple works best for Noah but the liquid has to be thickened to a nectar thickness at least. The slower the flow of the nipple means the harder the child has to suck on it in order to get anything out. All this hard sucking will cause your child to tire out faster than they would have using a faster flow with a thicker liquid. There are also "Y" or "X" cut nipples sold mostly online but available in some stores. These flows are for really thick fluids of extremely blended puree foods.
Noah is currently on a MAM bottle with an "X" flow nipple: 6 ounces water, four scoops formula, 2-2.5 scoops of Thick IT using the measuring spoon that comes with the ThickIT. We wait 1 minute for the thickener to set up and if he is alseep he can down the mixture in under 10 minutes. If we wait longer than 30 minutes the ThickIT will get thicker and the flow slows down so we have to add another .5-1 ounce of extra water to the bottle. Zantham gum based thickeners (Simply Thick) do to get thicker as they sit out like the Thick It does. This bottle amounts to about 190-200 calories and around 7-7.5 ounces of fluid intake (taking into consideration the water dispersion from the powders)
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| VitalBaby Stage 3 |
Hard Spout Sippy Cups: Most if not all of these types of sippy cups no matter what brand they are have a very hard plastic spout with tiny holes in them and a hard removable stopper located under the lid. These sippy cups need to have the sucking action in order to use them, if you are using the stopper. If you removed the stopper then you will get small drips coming out of the small holes. This is the good part. Also, many brands come with handles. The bad part of these is that because of the hard plastic spout most children with eating difficulties can't latch onto the spout or seal their lips around the spout. They also chose not to try biting on the spout either because it is undesirable. So, for tipping the cup to drip in a few drops these sippy are good but unless your little one can suck or tip the cup back on their own they are more of a nuisance in my opinion.
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| Nuby |
Soft Spout Sippy Cups: These seemed like the most ideal sippy to try for Noah. However, will ALL of the soft spouted sippy cups you have to be able to have a strong enough bite or suck to get anything of these kids of sippy cups. I went this route because it seemed softer and more pliable to work with and many of the spouts are elongated more than the hard spouts so I felt like since Noah has a high palate the longer spout would fit deeper in his mouth and sit on his tongue more and maybe entice him to want to suck on it. Didn't work for him but it could for you.
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| Munchkin Sippy Cup/ TommyTippie/ NUK/ Dr. Browns |
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Trainer Cups: As you can see none of this cups have a stopper and are pretty much free flowing cups. If the cup is clear you have a better idea when the fluid might be pouring out but the solid cups it is like a big surprise shooting out of the hole and drowning Noah. He is completely not ready for this step but I wanted to share the ones we have tried. They will be handy when he does reach this step.
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| OXO Tot Trainer/Baby Bjorn/First Years/Avent |
Cups I plan on Trying next but cant really rate just yet:I have recently come across these two sippy cups that both have a soft spout but a different spout design than the ones we have tried. I like that the spout is elongated and shaped to promote lip closure. These will be my next two attempts.
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| Born Free/ ThinkBaby/ Nuby Sports Sipper |
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| Munchkin East Feed Spoon |
Feeder Spoons (google:Squeeze Spoon): We currently have the Munchkin shown below but there are many brands of this same idea. They can range anywhere from $6-$20 that I have found. They all pretty much do the same thing. That is you squuze the base the the food/thick liquid flows out of a hole and onto the spoon. I like this brand because it locks open or closed for ease of transportation. If the liquid you are using is thin it will pretty much just flow out as fast is if pouring from a normal cup. We have used this a few times with thickened formula on the days when Noah has refused to take any liquid. We also call this "cheat feeding" because if Noah is laying back on a deep recline we can pretty much get the entire container in him with no work on Noah's part. Not good in working on his eating technique but when he is sick or teething and refuses anything this is what he have to do in order to skip a trip for an IV. Below is a picture of the feeder spoon I plan on trying next. It is the Nuby Soft Flex Infafeeder.
As always, if you have any suggestions or ideas that you would like us to try please send me a comment or you can email me and let me know. If you provide an idea for me that will work and get Noah to drink liquids while awake I will send you a big fat thank you along with $100 bill. Yes, we are that desperate at this point. :) :)
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