Alarmingly underweight tween

[Anonymous]

Anonymous wrote:

Anonymous wrote:Not OP,

9:26, how does the feeding tube work at night? Your child eats normal food during the day, then the feeding tube at night? Does it make him full or sick? How noticeable is the tube during school? Uncomfortable?

I think this is something we now need to consider. My DS is almost 14 and weights less than 80 lbs and is not growing.

We have another apt with a top pediatric endocrinologist later this month.

9:26 here - sorry you're in this position. Sorry OP and others on this thread are in this position as well. I hope the following is helpful.

We do the tube feeds overnight so he can just eat regularly during the day. It was/is important to us that he continue to enjoy meals and participate in everything meal and food related in a normal way. In my son's case, as I said, he isn't a picky eater. He actually prides himself on being a fairly adventurous eater and likes to cook. He just somehow can't manage enough quantity. (He feels queasy a lot after eating, and is rarely actually hungry. No medical reason we could ever elucidate despite many many specialists.) Anyway, we really don't want to create an unhealthy dynamic around meals and food where there wasn't one. Thus our decision to use it at night, although we could certainly use it anytime if we need or want to.

So how it works .....we have a pump and feeding bags that are provided by insurance. We fill the bag with however much ensure or pediasure and set the pump at a slow rate. So for example, we are currently doing 4 cans of 1.5 cal pediasure over 7 hours. That's about 1400 calories. We just fill the bag, hang it onto the bed frame, run it through pump, attach the tube, turn it on. It's pretty simple. (You can get a whole hospital set up with an IV pole but we really wanted this to NOT be what his life is about, so we have the bare minimum going.) There's sort of a learning curve with how to run the tubing so that it doesn't get occluded (like if he rolls over on it), because the pump alarms and wakes everyone. Pretty frustrating, but over time we've worked out a method of safety pinning it that works 99% of the time. It has an alarm to tell you when it's finished, but we disabled that, so it finishes quietly while he's sleeping. He wakes up, disconnects it, and goes.

Initially, it is definitely hard. It's a surgery, they put a hole in your stomach, and it hurts. I don't want to minimize this. It was hard on me, too. I let them put a hole in my perfect baby! I had a lot of bad thoughts about my terrible parenting and how we got to that point.

Afterward, I was actually amazed at how fast he recovered. He was very sore for 2-3 days, then mildly sore for maybe a week. He was depressed at the situation. (Although he did agree to it and recognized that we needed to do something.) He was at school a week later and participating in PE. Initially he had a longer PEG tube (something about these healing better), then 6 weeks in they replaced it with the button. The PEG is more annoying because it flops around, but it wasn't terrible. The first month or so we had that stupid alarm going off all the time, we'd fail to connect things well and there'd be a leak, etc. At this point though, it's pretty easy and low maintenance. The button g-tube has to be changed every few months; you just deflate the balloon inside and slide it out and insert a new one, and inflate its balloon. he was nervous about this the first time, but since then has done it himself twice. We've mastered the tubing arrangement and the alarm rarely goes off, etc. Supplies are delivered to my door once a month.

The tube isn't noticeable under a shirt. At first you could kind of see the PEG, especially because he was SO skinny, but only if really looking. The button not really at all. For a while he kept his shirt on under his PE shirt, but he decided he was getting too hot and now changes in PE. Kids have seen it and there were a couple of questions but no negative commentary. He swims with it. We cover it with a tegaderm or he wears a swim shirt, or not, depending on where we are. (Mostly to avoid comments, frankly, because any water you can swim in is ok for the tube.) He doesn't feel full when we do the slow rate overnight. He's not hungry for breakfast, but he never was really a breakfast eater. (And now we can afford to let that go!) If we do a whole can right at once, which we have done once or twice experimentally to add calories, he's full, but only in the same way you would be if you just drank it. You could do it fast enough to get sick, but you could do that by drinking it, too. Manageable by controlling the rate. He can tell if the fluid is super cold but otherwise doesn't notice he says. The tube itself doesn't bother him. It's all healed with perfect looking skin around it. Some people have problems around them, but he hasn't.

It is a big decision, and I wish we weren't in that situation in the first place, but we don't regret it. Not only is he growing, he's more even tempered, more focused, more rational, less anxious, and happier in general. He'll never be a big guy, and I still don't know what happens in adulthood, but we're on a much better trajectory than we were.

Thank you PP. How much has your son gained?

Did you work with a ped. endocrinologist or gastrologist (sp).

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:It seems some posters won’t be satisfied until OP finds a doctor to diagnose an eating disorder whether one exists or not. I get that some parents have been through this and it’s awful. But that might not be the answer here. OP I hope you find a doctor you can trust.

It’s really not normal for a 12 year old to have a BMIof 12.8. If her doctors say she doesn’t have an absorption problem like celiac disease , and it is documented that she is not eating enough calories, then what is left but an eating disorder?

The only other possibility is lack of food access but her parents are giving her food so it’s not that.

This “delayed puberty” thing is a red herring imo. Yes some kids are just short and hit their growth spurt later. But this kid isn’t that short she’s skinny and not eating enough.

I wouldn’t be satisfied as a mom until a doctor experienced in eating disorders (not feeding disorders) explained to me why this was not anorexi or ARFID. And the reason can’t be “no body image issues” because young kids often don’t have that.

Today, 3.5% of children are underweight in the US, down from over 5% in previous decades. That means that there are a number of kids with low BMIs. On its own, is this a medical problem? OP describes her DD as smart, active, funny, has friends, etc. She is short, though.

7.7% of households with children have food insecurity affecting the kids (8% of households with children have food insecurity only affecting the adults in the household).

[Anonymous]

Anonymous wrote:

Thank you PP. How much has your son gained?

Did you work with a ped. endocrinologist or gastrologist (sp).

20 lbs in almost 9 months. They actually said some kids gain as much as a pound a week, but he hasn't quite managed that. We'll take it though. Still only in the 4-5% for BMI but this is a huge improvement from the .1% where he started. Also have seen some decent height growth (a couple of inches, and there was maybe 1/8 inch total in the preceding two years). Now 13, he is finally in size 10 jeans and outgrew some shoes. He was and is still seen by both endocrine and GI. (Along the way, we've also seen genetics, immunology (because of recurrent illness), pulmonology (ditto on recurrent illness), and nutrition countless times.) It was endocrine who first suggested a tube. By the time GI brought it up some months later, we'd had time to get past our initial reaction of "we're nowhere near that!" and "ridiculous!" Still seeing endocrine because growth trajectory remains a question. GI did the tube and manages calorie increases, etc. They talk to each other and team manage.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:It seems some posters won’t be satisfied until OP finds a doctor to diagnose an eating disorder whether one exists or not. I get that some parents have been through this and it’s awful. But that might not be the answer here. OP I hope you find a doctor you can trust.

It’s really not normal for a 12 year old to have a BMIof 12.8. If her doctors say she doesn’t have an absorption problem like celiac disease , and it is documented that she is not eating enough calories, then what is left but an eating disorder?

The only other possibility is lack of food access but her parents are giving her food so it’s not that.

This “delayed puberty” thing is a red herring imo. Yes some kids are just short and hit their growth spurt later. But this kid isn’t that short she’s skinny and not eating enough.

I wouldn’t be satisfied as a mom until a doctor experienced in eating disorders (not feeding disorders) explained to me why this was not anorexi or ARFID. And the reason can’t be “no body image issues” because young kids often don’t have that.

Today, 3.5% of children are underweight in the US, down from over 5% in previous decades. That means that there are a number of kids with low BMIs. On its own, is this a medical problem? OP describes her DD as smart, active, funny, has friends, etc. She is short, though.

7.7% of households with children have food insecurity affecting the kids (8% of households with children have food insecurity only affecting the adults in the household).

Are you implying that food insecurity is correlated with being underweight in the US? It's actually the other way around. Households with food insecurity in the US have normal or overweight children, not underweight.

[Anonymous]

Anonymous wrote:

Anonymous wrote:It seems some posters won’t be satisfied until OP finds a doctor to diagnose an eating disorder whether one exists or not. I get that some parents have been through this and it’s awful. But that might not be the answer here. OP I hope you find a doctor you can trust.

+1

+1

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Thank you PP. How much has your son gained?

Did you work with a ped. endocrinologist or gastrologist (sp).

20 lbs in almost 9 months. They actually said some kids gain as much as a pound a week, but he hasn't quite managed that. We'll take it though. Still only in the 4-5% for BMI but this is a huge improvement from the .1% where he started. Also have seen some decent height growth (a couple of inches, and there was maybe 1/8 inch total in the preceding two years). Now 13, he is finally in size 10 jeans and outgrew some shoes. He was and is still seen by both endocrine and GI. (Along the way, we've also seen genetics, immunology (because of recurrent illness), pulmonology (ditto on recurrent illness), and nutrition countless times.) It was endocrine who first suggested a tube. By the time GI brought it up some months later, we'd had time to get past our initial reaction of "we're nowhere near that!" and "ridiculous!" Still seeing endocrine because growth trajectory remains a question. GI did the tube and manages calorie increases, etc. They talk to each other and team manage.

It sounds like you have a cooperative team. Would you mind sharing whether they are part of a hospital system like Children’s or Georgetown?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:It seems some posters won’t be satisfied until OP finds a doctor to diagnose an eating disorder whether one exists or not. I get that some parents have been through this and it’s awful. But that might not be the answer here. OP I hope you find a doctor you can trust.

It’s really not normal for a 12 year old to have a BMIof 12.8. If her doctors say she doesn’t have an absorption problem like celiac disease , and it is documented that she is not eating enough calories, then what is left but an eating disorder?

The only other possibility is lack of food access but her parents are giving her food so it’s not that.

This “delayed puberty” thing is a red herring imo. Yes some kids are just short and hit their growth spurt later. But this kid isn’t that short she’s skinny and not eating enough.

I wouldn’t be satisfied as a mom until a doctor experienced in eating disorders (not feeding disorders) explained to me why this was not anorexi or ARFID. And the reason can’t be “no body image issues” because young kids often don’t have that.

I'm the mom who posted about doing the feeding tube. "Disordered eating" and "Eating Disorder" (i.e. named thing) don't necessarily correlate that well. She should ask as many people as possible, and it could be an "Eating Disorder".. BUT ... careful. Some of what they are throwing in ARFID is not helpfully served by ARFID treatments as they stand now. Ask, definitely, but think critically. If it doesn't fit, don't try to make it fit. Get the diagnosis only if it brings with it appropriate help. Further, just because nobody has found a medical cause doesn't mean there isn't one. I think my kid's signaling is off between gut/brain/caloric needs. They can't quantify it? No name for it? ok. Noted.

OP here. It sounds like our kids have some similarities. At least your posts really resonate with me. I have long suspected that DD’s signaling is off. And not just about feelings of hunger or satiety. She still delays using the restroom until the last second. She’s never had an accident, but it often comes close. At first I thought she had anxiety about using public restrooms, but she does this at home too. She wiggles and crosses her legs and when I ask her whether she needs to go, she insists she doesn’t. I’ve mentioned this to doctors but no one has suggested a connection to other physical cues like eating. I thought it might be related to control issues and anxiety, but again, I am the only one who thinks so. It’s lonely being a mom sometimes.

[Anonymous]

OP, the brain signaling thing is a classic ADHD symptom. For some kids, ADHD meds help with that (especially the bathroom problem) but because they can also descrease appetitie they are probably not indicated here. But I think that there is a LOT of research left to be done on all the stuff about brain signals in adhd and asd, and also the brain/gut connection. I know people working in this field, or who have had medical issues relating to this, and there’s just a ton the doctors don’t really understand yet.
But I think it’s helpful to talk to your daughter about the problem this way—for her, the fact that she doesn’t feel hungry doesn’t mean her body isn’t hungry. The signaling is being blocked by something. So she should just eat as much as she needs to grow, regardless of whether she feels hungry. Just like some people need to go to the bathroom on a regular schedule, even if they don’t feel the urge.

[Anonymous]

OP, I'm one of the parents who had a kid diagnosed with ARFID. He basically wasn't interested in food unless he was absolutely starving -- at the end of his rope in terms of needing food -- and then it seemed he would eat just enough to take the edge off his hunger if that makes sense. Once he was no longer absolutely starving, he'd stop eating.

It took about 2 years of patient effort to get him to continue eating until he was truly full, even to over eat on occasion. I never outright required/forced him to eat anything, but I strongly encouraged it and tried to reduce distractions that were encouraging him to finish quickly. For example, I often took him out to eat where he wouldn't have the distraction of wanting to go play on the computer.

I believe he had adapted to have a smaller stomach over the many years of eating just enough to keep the feeling of starvation away, but no more. Gradually over time, it seemed to me his capacity to hold more food before feeling full expanded.

Having very regular meal and snack times helped him to feel more hunger cues.

Also, seeing and smelling a food he liked or taking a small taste of it about 15 minutes ahead of time for some reason seemed to stir up his appetite and arouse him for food.

Finally, some peppermint (gum or mint) about 30 minutes before a mealtime might have helped. He also for a time was prescribed a liquid antihistamine I mentioned before that was mint flavored which might have helped. Usually he would feel hunger an hour after he took that medication.

OP, do you feel that your child never felt hunger cues all throughout her life? Or when she was say 4 years old or 6 years old, was she eating normally but then something changed?

[Anonymous]

Thanks PPs, your posts are incredibly helpful. Even as a baby, DD didn’t recognize when she was full. She spent a week in the NICU due to poor feeding. I nursed her and when she didn’t gain much, I pumped and bottle fed breast milk for the first three months. The most she ate was 3 oz at a time. I threw away a lot of milk.

Since upping the supplements a week ago, something unexpected has happened. I was worried that the supplements would take the place of food and that DD couldn’t manage both. But that hasn’t happened. In fact, she is eating MORE now that we are supplementing. She now gets a hearty breakfast, protein bar for snack, lunch, a supplement and snack after school, dinner, and a supplement before bed. It’s only been a week but so far so good.

I’m also happy to report that we have found an awesome pediatrician. She comes highly recommended by people here, she has helped two friends’ daughters with eating disorders, and she instantly bonded with DD, possibly because she is well under 5’ herself. She didn’t discount the feeding tube approach, but didn’t feel it’s right for DD right now. Given DD’s ability to manage the supplements on her own and her new found enthusiasm for food (or fear of the tube), she recommended reevaluating in one month. Meanwhile, she will study her chart, calculate her nutritional needs based on her activities, and we will discuss a new game plan for weight gain. I couldn’t be more relieved. Not that she said all is well, but that she promised to fix whatever is going on together.

[Anonymous]

One other thing to mention about her early feeding. I breast fed her for almost two years. I continued to pump so my husband could feed her one day a week. That’s how I knew how much she ate. I never night weaned her. My doctor told me if she wakes up at night, she is hungry and to feed her. She woke once a night for two years and then slowly weaned herself. She began eating solids at 6 months, but always preferred milk.

[Anonymous]

Anonymous wrote:OP, the brain signaling thing is a classic ADHD symptom. For some kids, ADHD meds help with that (especially the bathroom problem) but because they can also descrease appetitie they are probably not indicated here. But I think that there is a LOT of research left to be done on all the stuff about brain signals in adhd and asd, and also the brain/gut connection. I know people working in this field, or who have had medical issues relating to this, and there’s just a ton the doctors don’t really understand yet.
But I think it’s helpful to talk to your daughter about the problem this way—for her, the fact that she doesn’t feel hungry doesn’t mean her body isn’t hungry. The signaling is being blocked by something. So she should just eat as much as she needs to grow, regardless of whether she feels hungry. Just like some people need to go to the bathroom on a regular schedule, even if they don’t feel the urge.

Yes, I'm PP with feeding tube.
I definitely think doctors have this all figured out! +100

We definitely talk about eating regardless of hunger, and the need to eat to grow and be healthy. And he gets that. He eats at mealtimes. And he'll come in sometimes and say, "I don't have any energy, I think I need to eat" etc. He's learning to recognize other cues. But it's a work in progress.

[Anonymous]

DOH!

Definitely DON'T think they have this all figured out. Sheesh.

[Anonymous]

Thanks for the update OP! I’m so glad you’ve found a doctor you trust. I think that was the missing piece. Best of luck to you and your daughter.

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP, the brain signaling thing is a classic ADHD symptom. For some kids, ADHD meds help with that (especially the bathroom problem) but because they can also descrease appetitie they are probably not indicated here. But I think that there is a LOT of research left to be done on all the stuff about brain signals in adhd and asd, and also the brain/gut connection. I know people working in this field, or who have had medical issues relating to this, and there’s just a ton the doctors don’t really understand yet.
But I think it’s helpful to talk to your daughter about the problem this way—for her, the fact that she doesn’t feel hungry doesn’t mean her body isn’t hungry. The signaling is being blocked by something. So she should just eat as much as she needs to grow, regardless of whether she feels hungry. Just like some people need to go to the bathroom on a regular schedule, even if they don’t feel the urge.

Yes, I'm PP with feeding tube.
I definitely think doctors have this all figured out! +100

We definitely talk about eating regardless of hunger, and the need to eat to grow and be healthy. And he gets that. He eats at mealtimes. And he'll come in sometimes and say, "I don't have any energy, I think I need to eat" etc. He's learning to recognize other cues. But it's a work in progress.

This is encouraging. Thank you so much for sharing your experience. It really helped to ease some of my fears. I’m glad to know your DS is doing well and that you are able to give him a normal and healthy life. He’s a lucky kid to have you in his corner. I want to be that for DD.