Alarmingly underweight tween

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Your DD weighs 53lbs at almost 12 yo; nowhere near puberty; and 3 years bone delayed -- which doctors at NIH assessed as a consequence of inadequate nutrition. She cries because she is unable to eat more than a few bites. Her cousin nearly died of an eating disorder. And despite all this, neither her father nor her therapist nor her primary pediatrician is concerned? Truly bizarre.

I think people need to lighten up on OP. She's working with a lot of doctors, most of whom are NOT that concerned. There is a lot of natural variation in people's bodies. Puberty isn't considered "late" unless the girl hasn't had her period by age 16, so it's entirely plausible and normal that puberty could be years off for an 11 year old. (I think something like 5-10% of Caucasian girls don't have their period by 14.) I had a grandmother that lived on butter, meat, potatoes and dessert twice daily, yet never weighed more than 90 pounds unless she was extremely pregnant -- which is just to say that size is a bell curve, and some people are going to be at one end of it regardless of what they do. I agree that the fact that OP's daughter gets upset about eating is not a good thing, but she's working on that. Berating her this way is really not helping (and she may be right that this is all increasing her daughter's anxiety around food).
OP, good luck with the new doctor. If you find some great solution, please come back and post, as I think there are many people who are struggling with the same questions.

OK I will thanks.

I wanted to add something that might be helpful for others who are struggling with natural variation. DD's endo team at NIH was extremely interested in her from a research perspective. It seems very late puberty is not well understood at this time, but there is a very strong genetic propensity toward this growth pattern. The fact that every member of DH's extended family on this paternal side experienced puberty late, they are of German descent, grew into their 20s and ended up taller than normal, is significant. The age of menses for women on his side ranges from 16-19 years; men all grew through college. This is why DH is not concerned, and why DD's ped endos were not overly concerned. They suggested low calorie as a contributing factor, because that's obvious if you track her calories. But they also indicated that you cannot compare her to an "average" 11-year-old. Perhaps she is not eating because physically, she is like a 7-year-old and little kids don't eat much. That is what her endos and her primary physician think. My fear is that she is small because she's not eating, but some of her docs think she's not eating because she is small. Maybe my anxiety about what is "normal" for a kid her age has contributed to lots of fear and stress around eating. Her cousin's experience with anorexia shook us all to the core and added a level of anxiety around food that wasn't there before.

The way forward is not as simple as some posters seem to think. I may never feel comfortable with our path, I may always doubt our doctors. It's my nature. I've never done this before. But I know food can't hurt, so that's what we're doing.

Your baseline information seems off OP. The idea that your DH's family is unusual because the men grew through college is incorrect; boys typically enter puberty much later than girls and it's perfectly normal for men to grow in their late teens and early 20s. Also the presumption that 7yos don't eat much suggests to me that you have not met too many 7yos. If that is the basis for her pediatrician to dismiss an NIH team's assessment that she is significantly bone delayed as a result of insufficient nutrients, you really are overdue in finding a new pediatrician.

Actually, the more significant factor is that all the women got their periods between 16-19 and also continued growing into their twenties, which is highly unusual statistically. You are simplifying the NIH team’s conclusion. Constitutional growth delay was the primary diagnosis on her chart with insufficient caloric consumption as a “contributing factor.” My point is that it’s not a simple case for anyone, including her doctors.

From page 2, OP posted: "Her team at NIH concluded that her bone delay is most likely a result of “insufficient caloric intake.”" It IS simple, she doesn't eat enough to grow.

[Anonymous]

Thank you to the poster who shared the aroundthedinnertable.org forum.

I have been reading the success stories thread and a recurring theme is pediatricians who told concerned parents "they are fine, try to have them eat more" - then a month later their child was admitted to a hospital because their bp is so low or they are having heart problems, or the kid stopped eating and drinking water and even refuses to swallow their own saliva. The thread is old and the beginning of the stories is even further back in time, but it still makes me sad.

[Anonymous]

Anonymous wrote:Thank you to the poster who shared the aroundthedinnertable.org forum.

I have been reading the success stories thread and a recurring theme is pediatricians who told concerned parents "they are fine, try to have them eat more" - then a month later their child was admitted to a hospital because their bp is so low or they are having heart problems, or the kid stopped eating and drinking water and even refuses to swallow their own saliva. The thread is old and the beginning of the stories is even further back in time, but it still makes me sad.

Also, the stories are so hopeful. These families have been through a lot but they made it to the other side. I just was thinking that I feel bad for OP. Her team is really giving her conflicting messages. I hope this new pediatrician who is knowledgeable about undernourished kids can give her an answer.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP, I really don't understand your latest post, specifically the statement that all the many doctors and specialists you've seen in the past year have told you that your DD is fine and just a late bloomer.

That's completely at odds with previous statements you've made on this thread, for example on page 2: "Her team at NIH concluded that her bone delay is most likely a result of “insufficient caloric intake." It's also contradicted by the very conversation that precipitated your original post, the suggestion by her dietician who is part of her medical team at Childrens' that you may need to consider a feeding tube.

So which is the correct version -- a fine late bloomer or a child whose growth is significantly delayed by insufficient nutrients?

DP. I read that post as saying that she has received conflicting opinions from various doctors. There have also been conflicting opinions in this thread. It's hard enough parenting when you know what the right thing to do is, it's even harder when you don't know what the right thing to do is.

OP here. Thank you. You've hit the nail on the head. If it seems confusing and overwhelming, imagine how it feels to us.

Yes, we've received conflicting advice, even from the same specialists (e.g. the dietician who told us to relax about eating three months ago, then suggested a feeding tube last week, then said to try supplements instead five minutes later). Even she didn't recommend limiting activity. Her endos weren't overly concerned about her growth, maybe because they see small children all the time, and suggested we follow up with a ped GI and nutritionist. They couldn't say which was a greater factor, genetics or nutrition. Her ped GI ruled out underlying illness and referred us to a dietician and therapist for anxiety. Her therapist is not concerned about eating disorders and does not recommend medication. Her primary care physician has never been concerned. My husband is satisfied we have excellent doctors all telling us she is fine, except a dietician who has contradicted herself. He believes we are causing her anxiety with all this testing and stress. He may be right, but how can we know we are doing the right thing? What if we miss something? What if we choose the wrong approach? Are we in denial or trying to make sense of the advice we've been given?

Today I will meet with a new pediatrician who hopefully can guide us. Someone needs to steer this ship, or at least coordinate her care. DD is angry I'm dragging her to yet another doctor. DH is angry we are paying out of pocket for a doc who doesn't take our insurance. And once again, I'm doubting myself, but doing my best to focus on food and fun. Those are the only things I know for certain we need right now.

You have a number of specialists -- particularly and ped. GI (who sees lots of kids who have eating issues and physical GI issues) -- and they are telling you that there is nothing physically wrong with your child that they can fix. They point to anxiety. Even your questioning (i.e. what if we miss something, what if we choose wrong, etc.) points to YOUR anxiety. I do get it, OP. I have spent many years stressing over my low-weight kid's health. But, what's different b/t you and me is that you are insisting in the face of evidence by the medical professionals that something is wrong with your child. But, there is no physical evidence of disease. There is evidence of anxiety... maybe that is native to your child... maybe part of it is coming from your stress. The fact that she cried when she couldn't eat doesn't mean she has an eating disorder. It could mean that she is stressed out so much that she doesn't have an appetite and/or she wants to please you, but just can't eat. All of this could be explained by anxiety around eating (be it from her or you). It's a lot of stress. She surely has received a lot of messages that there is something WRONG with her. Of course she is going to have a hard time figuring out if she is eating to please you and the doctors or to please herself.

Your child doesn't want to go to another doctor. Gee, I wonder why! How many people did you list in you post above that said to dial it down? Your husband, your daughter (you know... the one who has no control over this escalating situation), various doctors and specialists. What's the worst thing that happens if you say to yourself: I'm going to just drop the whole food/eating problem solving thing for 4 mos. and see what happens? I feel like there are a lot of arrows pointing at you needing to calm yourself. Your husband is on the ground and seeing your child first hand. He and your DD should be the ones who you listen to the most. Not random people on DCUM.

And for those who are concerned about an eating disorder, that's a legit concern generally, but don't you have to be careful to make sure you aren't taking more control away from the person who already feels out of control (if there is an eating disorder)? Isn't treatment going to require that the person with an eating disorder gets MORE control over their future. I don't know that your DD has and Eating Disorder... but she's probably on the way to getting one b/c of all the anxiety and stress around her eating and growing.

My advice: Listen to your husband and DD. Work with them to discuss your concerns and a plan -- a plan that your DD has some agency and ownership of. Maybe that plan is that you back off of the medical appointments for her for X mos. During that time you will probably need to see a therapist for your anxiety b/c you won't get through the X mos. without talking to someone. See what happens. Give your daughter some space to step forward into owning her health. If you are up on her all the time about eating, you don't give her any place to step up to. Let her dance. Let her exercise (so long as it isn't 4 hrs per day excessive). I think you have stated the answers that the experts have -- but, you are not comfortable taking those answers. That's what needs work.

No, no, no. The treatment for people with eating disorders who are malnourished is NOT to give them more control. It is to take full control and refers. Once weight is restored (or normal weight achieved), THEN there can be therapy around making good choices with food. That is the stage when the person can have more control. But people who (partially or fully) starve themselves do not get to control the food. Particularly children.

OP, you are on the right track. Please still do a consultation with an ED center, just to get their perspective.

[Anonymous]

Refers should say refeed.

[Anonymous]

Anonymous wrote:Thank you to the poster who shared the aroundthedinnertable.org forum.

I have been reading the success stories thread and a recurring theme is pediatricians who told concerned parents "they are fine, try to have them eat more" - then a month later their child was admitted to a hospital because their bp is so low or they are having heart problems, or the kid stopped eating and drinking water and even refuses to swallow their own saliva. The thread is old and the beginning of the stories is even further back in time, but it still makes me sad.

This is why those of us who have kids who have gone through this are being so strident and are not particularly reassured when OP says that her daughter has been seen by medical professionals who tell her there is nothing wrong (or that she doesn't have an eating disorder).

So many people have heard that exact thing for months before anyone told them there was actually a problem.

And the earlier you intervene, the younger the child, usually, the easier (more likely) the recovery. It is far better to start refeeding before the child is refusing all food for example.

OP, Shepherd Pratt up in Baltimore has an eating disorder clinic and they take insurance: https://www.sheppardpratt.org/care-finder/the-center-for-eating-disorders-at-sheppard-pratt

[Anonymous]

Anonymous wrote:

Anonymous wrote:

I also want to push back on the suggestion to pull from activities. If the child is enjoying the activities, for heaven's sake make every effort to keep going. Even physical activities. Yes, they burn calories, but mental health and enjoying life is important. OP is talking about stress and fear...keep things as normal as possible! Pulling her from sports will add to the fear, add to the stress. She absolutely needs to continue doing the things she enjoys unless she actually physically can't.

The child is almost 12 years old and has a BMI of 0.1%ile for kids her age. Her BMI is 12.8

She's not in the 1st %ile for kids 11 years 11 months,. She's at the 0.1 percentile.

Even looking at a BMI chart for a child who is only 8 years old, her BMI is still BELOW the 1%ile.

This is not some child struggling along at the 4th or 5th percentile BMI. This is terribly, terribly skinny.

Remember, BMI accounts for height. We're not talking about "somebody has to be the shortest" anbd "someone has to be the thinnest". This is accounting for her height (which is not that short at 4'6") she is very very very underweight.

Yes, I HAD THAT CHILD TOO. My son had a BMI of .1% and linear growth failure before we did the feeding tube. If she's at the point she can't participate, she needs to be in the hospital. Otherwise, they need to avoid messing up her life and routine as much as possible. Making this child miserable is the wrong answer.

[Anonymous]

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.

[Anonymous]

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

[Anonymous]

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.

[Anonymous]

Anonymous wrote:
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.

PP again, I got my wires crossed there where I wrote unhealthy dynamic. We won't want to create an unhealthy dynamic by doing magic plate or whatever forcing him to eat, but I wasn't talking about that here.

What I was trying to say is, doing the tube at night is just so we don't mess up the good stuff he already has going, liking what he does eat, etc.

[Anonymous]

I was told that my baby dd will eat when she is hungry. Repeatedly. Night after she was born, she didn't sleep in the hospital. I told them to give her a bottle for one feeding and then bring her to me for the next one. 7am and, of course, I couldn't sleep all night, and nobody is bringing her. I go to the nursery and say, hey where is my baby, and they said, oh she didn't' sleep all night until now. I asked if she ate, they said no. I said why didn't you bring her to me? Oh, we knew you wanted your rest. Nobody thought twice about a baby born at noon not sleeping at all that same night. She refused breast, formula, what I pumped...I fed her solids at 6 weeks. Drs kept saying babies eat when hungry, I told them she is vomiting even half an ounce and screaming all day long, nothing. They would say, she is only slightly dehydrated... At 7 months I said, screw you a**holes, insisted on endoscopy and ph probe. She had beginnings of ulcers in her stomach and her esophagus was burned. She was acidic like a car battery and refluxed below 2 121 times in 21 hours. Sometimes doctors are idiots. She is now a healthy young woman due to my telling doctors to eff off. FTT, no iron at 2 years old, chewing on walls! And they still kept telling me she was fine after knowing her history. Luckily at that point we had moved and had awesome NP and pediatrician. Just saying, some doctors are horrible at their job.

[Anonymous]

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.

[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.

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.

[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.

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.