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. |
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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. |
| 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. |
| this entire thread makes me so sad. This poor little girl has an eating disorder. I wish you peace and recovery OP. |
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. |
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. |
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. |
I disagree with this 100%. I think you are on the right track with meeting with the new pediatrician, OP. |
| OP here and 16:39, I think you should be my therapist. Thank you. |
| Wow, no wonder OP is anxious. OP, listen to your doctors. Listen to your family. Listen to yourself. You’ve already heard what we have to say, and we can’t agree anyway. I wish you the best of luck. |
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https://www.theguardian.com/society/2019/apr/09/for-five-years-we-dreaded-every-meal-my-infant-sons-struggle-with-food
I read this and thought of you OP. Obviously, the author had a completely different situation and a different food related problem, but you're not alone in parenting a child with food and growth issues. I'm not comparing your situations with the author's but I thought it may be helpful to read about the food related issues that other families have. |
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. |
DP. I am not a doctor, just a parent to a child who is the same size as the OP's DD, 54" and 52 lbs. He's younger though at 9. He's not terribly terribly skinny. OP has never been clear if her DD has stopped growing taller or remains on/near her growth curve. My DS is on his growth curve, and his pediatrician is unconcerned. Restricting activity seems like the wrong thing to do, IHMO. |