Feeding Clinic Update

posted in: Apollo, Special Needs | 33

Seattle Children's Hospital Feeding Clinic

Apollo had a feeding appointment at Seattle Children’s Hospital yesterday. This news, unlike the recent news from his pulmonologist, wasn’t particularly good. He hasn’t gained a single ounce (or if we want to get technical, he hasn’t even even gained a gram) since the beginning of June. In other words, the entire time he’s been seen by the Feeding Clinic. I asked how much they would like him to gain in that amount of time (over four months) and she said a pound and a half.

Ouch.

And one point I was told, “You don’t need to start tube feeding him again yet…” but if he doesn’t start gaining weight, back to the tube and formula supplements we go.  Once again, the question of WHY? Why can’t he gain weight on his own? The only time he has steadily gained weight is when he has gotten formula through his tube. No, he hasn’t been tested for metabolic issues or anything like that, because we know if we increase calories through his tube, he can and will gain weight. 

Apollo is seen at the Feeding Clinic every two weeks. I have a myriad of specific instructions I am supposed to follow for his feedings: Apollo is supposed to eat every 2.5-3 hours, I need to give him a protein, a starch and a fruit or veggie, he is supposed to have 15-20 minutes for each meal. So yeah, it’s pretty much like feeding a newborn. A newborn who just won’t eat enough. 

Five years of struggle to feed Apollo make this mama weary.

His teacher kindergarten has been outstanding, working with us. When I pack his lunch each morning, I send a list of the foods in his lunch box and the teachers makes notes about how much he eats. The dietician at the Feeding Clinic was thrilled with the written record of both what he was offered and what he ate. It really helps her get a feel for his eating habits and calorie intake. In looking over his lunch records from the last month, she commented on a trend I suspected, but was half denying….he has slowly started eating less and l less at school, and at this point every calorie counts. 

So, it seems, we are back to the beginning. This is why, even though we aren’t currently using the tube, we need to leave it in until everyone is sure it is no longer needed.  

So there you have it, a not-so-good report from the Feeding Clinic.

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33 Responses

  1. :/ Is he really that small for his age? My 7 year old doesn’t have medical issues, but he’s really small for his age and doesn’t eat a lot. He was born small…just 5 pounds 8 ounces at full term…and I’ve just always figured he will eat what his body needs…it is offered, and we encourage him to try things, but we don’t make an issue of it. So is it possible that Apollo just is going to be a smaller kid? Also I would guess that the excitement of being at school sort of distracts him from eating…but this is also “normal”. Hopefully as the newness of school wears off he’ll settle down to eat more, but why are they so concerned? All kids go through growth spurts and halts… Hang in there…this, too, shall pass….

    • bakersdozenandapolloxiv

      Its not about whether he is small or big, it is about his own growth which is dropping again. Judah was small, in fact, smaller at five than Apollo is right now! The difference is he was growing on his own curve. Small, even tiny, is perfectly fine. Not growing at all, is *not* fine. Does that make sense? Also, Apollo is not a typical kid in anyway. He is a kids with heart and breathing issues who was tube fed for three years, this makes it a very different scenario.

  2. Boo on the report! I am so sorry and can only imagine how weary you are. Plus, when you are weary, any negative news can cause us to just crash. Ask me how I know this. I am praying that Apollo begins to eat more and gain weight and that you get some rest, physical and mental!

  3. How frustrating! It’s great to hear that he is eating, but that it’s not been enough for him to grow, argh! I have to say though, 1.5 pounds in 4 months sounds like a lot. But zero does seem too little too.

    I’m glad to hear his teacher is so supportive of the issue as well. I hope he starts eating more at school.

    One question regarding the proteins he eats. Is he also getting fat with it? I recall that he can’t have dairy? My friends son has a myriad of allergies including dairy egg, tree nuts and peanuts and is small, but he was not growing for awhile. His parents were encouraged to make sure he was getting enough fat. ie chicken thigh vs breast etc. His allergies meant it was more difficult to provide the needed fat Once he started consuming more fat, he shot up 3 inches in a short time! Kids need fat to grow. I am not a dietitian or anything though, it’s just something to consider.

    • bakersdozenandapolloxiv

      Well, the 1.5 pounds is based on 5 year olds gaining 500 grams per day, which comes to 1.5 pounds in four months. If you think about it, that is a weight gain of just 6 pounds per year. Most kids reach this easily! He hasn’t even gained a gram!

      It is complicated. He eats dairy now, and loves pizza! But he’s got some digestive issues, and we now have to take him off a dairy for another few weeks, to let things even out. I hate removing an entire category from his diet!

      Yes, she pushed high-fat proteins. He likes pepperoni and “meat sticks”. We do what we can, but he often eats very small amounts.

      • I guess I have a skewed perspective as my kids are pretty small. 3-4 lbs a year is their norm, well until my son hit the big P. Then his muscle growth pushed his weight gain into high gear. Either way a gain of zero pounds is a red flag. Sorry you have to stop the dairy again.

        • bakersdozenandapolloxiv

          Exactly. Had he gained any weight, even an ounce or two, it would be a different story. No weight gain in 4 months for a child with a history of failure to thrive and a g-tube? A huge red flag.

  4. Ugh. I’m sorry. I have trouble getting my [totally normal, usually big-eating] kids to eat consistently at school. I can’t imagine how hard it is for him. My kids find there’s just too much distraction: friends to talk to, people to watch, recess to hurry to, and teachers and aides just aren’t as good as parents at saying “Make sure you finish.” The time limits don’t help. Is it possible to have an aide pull him out for snack and meal times to reduce the distraction and help him finish?

  5. Oops!

    I’ll be praying a solution is found!

    For a while my oldest was very underweight and he is still light for his age. When I was in desperate weight gaining mode with him, I made noodles with butter for sauce and a shake of Parmesan cheese, or made mac n cheese with only butter (no milk.) Since you need to be dairy free I guess those wouldn’t work, but maybe there are other things he would eat that are high fat. What about a fruit and almond milk smoothie with flax oil, almond butter or coconut oil mixed in? Or a combination of a couple of those fats? Will he eat avocados? They’re yummy on toast with butter (or coconut oil maybe?) and a shake of seasoning salt, or just on their own as a snack. Thanks for sharing the update, sorry the news is discouraging but I’ll be praying!

    • bakersdozenandapolloxiv

      He will eat pasta, but no butter. He won’t touch a shake or smoothie. On top of his weight issues, he is quite picky.

  6. Wild idea: since he probably really wants to be just like the other kids, and feels different, maybe he can get a lunchbox containing whatever the coolest kids in the class get to eat. (as in: “But Mom,the other kids get chocolate hostess cupcakes–not acai berries, quinoa salad, and wheatgrass shakes!) Or whatever. Whom does Apollo admire in his class? Get him to sit next to that kid and eat what that kid eats. And let’s hope that kid is no picky eater and maybe even chubby.

    • bakersdozenandapolloxiv

      Oh, he can have WHATEVER he wants in his lunch box! Seriously. He helps me pack them at night (its part of his therapy). He hasn’t commented on what the other kids eat..

  7. I’m sorry :(. Between dec. And jul. Kestrel gained no weight. Between her well child check and craniofacial team mtg she gained an inch and 1.5 lbs.

    Do you know what changed? Because I have no idea. We didn’t change supplements or anything. She just started eat more and better. While I’m thrilled, I’m also baffled.

    • bakersdozenandapolloxiv

      I hear you. Apollo had one or two instances of unexplained weight *gain* when he was toddler. Then, it would all be gone. I know you totally understand what I’m going through.

  8. So sorry for this, Renee! I’ve been reading since 2008 or 2009. I remember when you were struggling to wean Apollo. That seemed like it would never happen, but it did. Recently my third child (11 months) had weight LOSS between 6 and 9 months. Totally scared our doctors, lots of extra visits, etc. I was in shock. She seemed perfect in every way. Her two older brothers were chubby at that age. So I spent a month really working to fatten her up. Here are some things I fed her: peanut butter mixed with butter mixed with coconut butter (on a spoon), lots of cheese, avocado, butter on everything, very few carbs or grains, and when I did give her carbs, they were mixed with fat, such as applesauce mixed with butter. Well, it worked. She was actually still tiny on the growth chart, but she went from 13 to 16 pounds in one month (from 9 to 10 months). It helped that we were on vacation for two of those weeks, so while my relatives cooked meals and cared for the other kids, I could really focus on slowly spoon-feeding her fattening solids. It was stressful, and I still don’t know for sure if anything is wrong with her (I have Crohns, so that does not help put me at ease)…just sharing a little success story. I don’t know how it will work out for you and Apollo. God knows, and it’s in his hands. May he bless Apollo and make him big and strong. May he give you joy and patience in your mothering.

    • You have some excellent ideas here! Think I might start giving a few of them to my oldest at snack time. I have a hard time feeding my kids snacks because they are built so differently, but this would work perfectly because I could give one the high fat version and the other the regular version.

    • bakersdozenandapolloxiv

      Kate, a big part of the issue is still getting Apollo to eat. It’s not about what we offer him, it’s about what he will actually eat….

  9. Owen didn’t gain anything the first year we stopped using the tube. The 13th month, he gained a whole pound in one month. Apollo is probably getting distracted at school, you might try to see if there is a quiet place he could go to for his snacks. If he went to a separate place he wouldn’t be as distracted and might even eat more if it meant he could go back to the regular room sooner. The only other suggestion I have is to keep things as calorie dense as possible. Try nut butters on crackers, serve mayonnaise based dips with veggies, stuff like that.

    • bakersdozenandapolloxiv

      I actually think it is beneficial for him to eat *with* the other kids. And they eat in their classrooms, at their desks, so there is no back and forth. And you know Apollo, there are a lot of foods he just doesn’t eat. His doctors keep telling us to give him ranch dressing and dip with everything, but he won’t eat them! He won’t eat smoothies, or shakes. He only eats egg whites….

  10. Ugh! It can be a frustrating cha-cha these kids and their tubes 🙁 Complex little bodies and souls that they are! It often feels like a giant game of whack-a-mole doesn’t it? Social and emotional development *whack* weight gain and eating *whack* Praying the game slows for you soon or even ends with a plump, healthy kid and perhaps a a giant, fluffy unicorn (said as a Mama who knows all too well the fluffy unicorn is perhaps the more believably attainable of the two some days. I am reading as I vent my own complicated tubie at 5am!).

  11. Does he have any digestive issues that cause his bowel movements to be off? Is the tube formula GF? I’d wonder if he is celiac actually. Celiac disease is “turned on” by stress, and you guys have certainly been thru plenty of that! Since he is already consuming gluten, the blood tests would be the first place to start. Then if you really wanted to see if he had it, there is the scope test. Eating for a celiac is painful, and it makes your body incapable of getting any nutrients from the food you eat. Our son’s celiac was switched on from a life threatening intubated-and-scary fight with RSV when he was about 4 weeks old (and he was born a month early).

    It would be worth looking into, and wouldn’t require going gluten free as most people think. You actually want to be eating gluten when you are tested for celiac for accurate test results. Going off gluten and feeling “better” is not a reliable test.

    • bakersdozenandapolloxiv

      He doesn’t have any digestive issues that have been found. He has been tested for celiac.

  12. Anna, Sweden

    What does he do during mealtime, just sitting at the table eating? For these kids an Ipad with a movie/Tv might make mealtime less stressful? While the kids are watching you kan support them with food, food that is easy to eat with your finger, so you can put one load in each hand : )

    I guess he drink some kind of nutritionformula? They can taste a bit bad, well soda, like fanta or lemonade with sugar (of course not healthy) can sometimes help. Eating lots of sugar makes you want to eat more… And for kids like him, that can help them gain weight.

    This might sound crazy but is actually what some kids need to gain weight. Opposite to us mums who need to loose some, like myself.

    • bakersdozenandapolloxiv

      Most meals are at the table. At school he sits at his desk with his classmates. When we tube feed him, he takes in high fat/high calorie formula. He doesn’t drink it, so the taste really doesn’t matter. We let him eat whatever he wants…I am afraid to push juice too much, because I don’t want him to fill up on that, instead of actual food. We do give it to him at meal times.

  13. Hopefully the lack of eating at school will even out. I find my kids seem to eat less when school first starts because of all the changes then settle in and go back to normal. Even my oldest who has no food issues. Part of that might be that I am home so the majority of their lunches all summer are at home or the pool and then they go back to the craziness of the school cafeteria with a time limit on how long they have to eat. I hope he starts to gain a bit so you don’t have to go back to the feeding tube.

  14. I feel for you and Apollo, I truly do. My last child was labelled failure to thrive. She weighed 14 kg at almost six. She had been that weight for years. Finally she was diagnosed as a migraine sufferer and given Periactin. By the next morning she was hungry and colour in her cheeks. That was her miracle. I pray that there is a simple solution for Apollo.

    • bakersdozenandapolloxiv

      Interesting! Apollo actually took Periactin for awhile after his first heart surgery. The hope was to increase his appetite, but since he has such a hard time eating, it just made life worse.

  15. So sorry to hear this. Will be praying for you and Apollo.

  16. Do you track his weight at home? It just seems that you have reported he has been sick alot, since he started school, and even if the illness isn’t the puking/diarrhea type, it is still likely to result in a weight drop. I’m just saying maybe he has gained a pound or so in the last 4 months, and lost it in a couple weeks of illness.

  17. My middle child (born very prematurely) is 3 and weighs 24.5 lbs. with her clothes on. We’ve gotten failure to thrive, not feeding her enough, need to be feeding her constantly, etc. A year ago, right after her 2nd birthday, she weighed 20 lbs. and six months later only 21 lbs. She had followed her own curve more or less to that point, but suddenly it was going off. Now we’ve managed to get three and a half pounds into her in the last six months and she’s on the charts for the first time in her life! Ironically it hasn’t been by following the doctor’s recommendations for putting ranch on everything, frying everything, etc. What has worked is giving her whole milk mixed with half and half to drink (and limiting her milk somewhat, so that she’s not filling up on it), only giving her three meals a day and rarely snacks, and feeding her the same foods as the rest of us. We dump a good dose of olive oil (the “light” stuff is no lighter in calories, it just doesn’t have a flavor) over pretty much all of her food. We also weight her meals with much more meat (thankfully her favorite food is meat) and fewer veggies. She’s not big on carbs of any sort, but will eat some bread, pasta, etc. She has learned to eat a broad variety of foods and is learning to eat in a healthy way. She eats much better this way, I think because she’s hungrier at meals and so fills up more on good calories. She actually eats more than most kids her age. Some of her size is genetic, but not all of it. I’ve been able to stop worrying about food for the first time in her life.

    Her little sister is also super skinny (my side of the family), but will catch up relatively soon in size, even though she’s two years younger. The younger of the two has a milk protein allergy, so we’ve been giving her coconut/almond blend milk–with 45% daily amount of calcium per serving–and melting in a large spoonful of coconut oil for fat and calories. She loves it as long as it’s warm, and it’s also helped her with weight gain.

    I don’t know if any of this would work with Apollo, as he’s pickier and maybe still just wouldn’t be hungry enough to eat a good meal at mealtimes, but maybe it would.

  18. I dont have experience with tube feeding, but one of my kids was picky to the extreme. (He is finally normal picky today – hooray!). Some ideas that come to mind: (probably you have tried these already…)

    * Since Apollo is big and intelligent would he perhaps cooperate if you discussed with him how important it is for him to eat? Does he want to get rid of the tube – could that be an incentive to him?

    * A behavior modification chart – i.e., stars for each time he finishes his plate and a prize at the end?

    * I used to stand a book up so I couldn’t see my son’s plate and then read him a story, from another book, all the time saying how I am sure that when I finish the book he wont have finished his plate – he loved to prove me wrong. I started with a plate that did not have much on it, and worked to larger portion sizes over time.

    * There is a method of desensitizing that is supposed to help very picky kids. (I hope I am remembering it correctly) Choose one item that you would like your kid to start eating. Then, every day for a week, you make this item and the kid has to eat only 2 bites of it. After a week, the child will usually either start liking the item, or be indifferent (i.e., willing to eat). I tried this on myself with an item I hated, and it worked. If you want to make it more interesting, call this process a scientific experiment, a chart his feelings for the food.

    Good luck! I always realize my limitations as a parent when it comes to food and bathroom problems – you cant force-feed them / force them to “go” in the bathroom… Frustrating to the extreme!

Please share your thoughts!