F.E.A.S.T's Around The Dinner Table forum

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Pernickety
Has anyone successfully weight-restored their child with significant GI dysmotility? What did you find most helpful to achieve this? Our D(18) has an unspecified eating disorder diagnosis and no body dysmorphia and was treated unsuccessfully for multiple years for typical anorexia. I suspect her food struggles are secondary to high anxiety and her autism mixed with associating food with pain and sickness due to gastrointestinal dysmotility from a medical condition. We followed a strict meal plan for about three years but the emotional burden for D was heartbreaking and she only deteriorated mentally in this time, so for the last year or so she's mostly been deciding what to eat (with significant encouragement from myself). My main concern now is her lack of weight gain despite evidently trying really hard to eat enough. She doesn't have a problem eating dense, high calorie foods (took a long time to get here but thankfully she will now accept extra butter/cream, etc. added to her meals!!) but despite eating as much as she can manage and being in pain and exhausted all the time she's only just managing to maintain. There's definitely no food hiding going on, although this has previously been a big problem (developed after spending months around other kids while attending a day patient program - her treatment team said that due to autism she mimics the behaviour of others). I don't know what else I can suggest or support her to try having regularly to turn this situation around. Her diet is very limited due to the aforementioned issues and whatever food added will need to be easy to digest and dense. We've gotten so close to what I think would be weight-restored so many times over the years and are now about 3-4kg away again. ;-(
Sorry if this isn't the right place to post this, but her autism and history of avoiding food when not feeling well makes things a bit more complex and friends that haven't been through similar struggles to get their children to eat enough don't quite understand how difficult and emotionally exhausting it can be to worry whether she's had enough and how to get more in the next day. I'm at my wits end with worry and just want her to get to a good stable weight so she can do her best in her exams and have a good chance of going off to university and living independently. 
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atdt31_US
What does she currently eat?  If she truly is wanting to gain we can likely brainstorm some GI friendly ideas if you give us some likes and dislikes or what a few regular days of intake look like. Does she have an actual GI diagnosis?  
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth. FWIW ED-D is a fraternal twin and we have no other kids.
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Mamaroo
Hi Pernickety

It's great that your d is so close to WR, we here all know that the last couple of kilos are just as difficult as the first few.

In our case, my d lived on Ensures for months and gained very nicely on them. So my first suggestion would be to get Ensures or something similar. They are very easily digestible. After several months we switched to food, but my d stopped gaining weight. I struggled to figure out why, either I was useless in calculating calories or her body wasn't able to extract the calories from food as easily as from the Ensures. I put her on a gluten 'lite' diet, exchanging most gluten options with gluten free ones and it was easy enough. Bread was the only difficult thing to exchange as the gluten free ones were just awful. In the end I gave her sourdough bread, which had less gluten than normal bread. Also I baked muffins etc with gluten free flour, which worked very well. She started to gain again on this gluten lite mealplan and after several months on this, I gradually introduced gluten again and today she is eating everything normally.

I also gave her probiotics every day, which might have helped. I only give probiotics once a week now.

Good luck and let us know with which food she struggles with and we can suggest alternatives. 
D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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tina72
What about ensure or fruit smoothies with canola oil/rapeseed oil added?
Can you tell us what she can eat so we can come around with ideas where to add?
Can you increase portion size of her food? What do you think how much calories she eats and what will she need?
Just an idea, but if she is able to maintain her weight, could they add the kg that are needed by tube feeding?
Keep feeding. There is light at the end of the tunnel.
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Pernickety
Ah sorry I didn't give details of what she actually eats. Should I make an edit to the original post or is it alright just to leave this comment? 
So any supplement drinks are a no-go as she was completely tube + supplement fed for a while and now freaks out at the thought of drinking them again. The last attempt had fortisip all over the kitchen floor... 

She has an actual GI diagnosis, confirmed by multiple tests and preceding the eating difficulties. Interesting about the difference after going gluten-free Mamaroo. My D already pretty much eats zero gluten-containing foods so sadly that's not an option to try but it might help others. 

So she is happy to eat a lot of meat, fish, eggs, nuts, dairy (always full-fat) and dark chocolate which is great as those foods are nutritious and dense, but I'd prefer her to eat more carbohydrate containing foods - however after months and months of arguments every mealtime over trying to get her to eat these and not being supported by my husband (very much a 'let her eat what she wants and everyone will be happy' person, blaming my anxious personality on all the fighting and saying if I relaxed about meals she'd eat enough -> not true) I was worn down and she's quite stubborn and rigid-minded so I don't think I could persuade her to change unless she wanted to. Vegetables used to be a heavy feature in her diet but her gastroparesis means her stomach can't handle fibrous foods well so they've almost gone. She's got intestinal bacterial overgrowth too (planning to treat with antibiotics once exams are over) which was just diagnosed but looking back it's likely the carbohydrate fears developed because her gut gets incredibly distended after carbs due to fermentation. Keeping track of all the different problems and reasons for each fear is quite difficult. I can understand to an extent why she's so adamant not to eat those foods though because it's quite obvious when she's not feeling well, but it doesn't exactly help with the weight gain as it rules out many of the best weight-gain foods! I think she's been eating roughly 1400-1600 for the past six months, down from about 2500 as a day-patient. This is where she's historically always maintained/very slowly lost, so a few hundred more will hopefully be enough - however we've struggled through hyper metabolism in the past with her needing 2800+ to gain, but that seems to only set in when she's eating 2000+ consistently. 

I don't know if I could increase portion sizes any more. I've tried helping her pick denser foods but increasing the volume leads to GI problems and [warning - maybe too much detail?] vomiting of undigested food up to 12 hours after a meal (not deliberately, I've seen it happen and she's definitely not inducing it). Then the next day or two after a bad GI event she seems to regress with more childlike behaviour and needs lots more encouragement to eat and I'm sure if I wasn't there she'd drastically under eat for her needs. So its a vicious cycle! Although she's willing to try things, in the last month she's definitely limited her selection of 'safe' foods more as her anxiety is escalating about being unwell over the exam period. 

As I was writing this, I realised it sounds a bit like she has ARFID. It was mentioned years ago but because her safe foods weren't plain carbohydrates (e.g. chips, pasta, bread), and as the onset of restricting was in adolescence, although she's been particular about food since she was little due to ASD, the psychiatrist said it wasn't this so gave her an OSFED(?) diagnosis. Can ARFID present in this way and does that impact how I should support her to make the necessary changes at all?
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atdt31_US
Pernickety:  couple thoughts

1.  Yes, ARFID can present this way.  But I don't think the label itself will mean much in terms of changing the approach, in light of the organic gastro things you have to work around.

2. There is a member here whose son has gastroparesis (Tali97).  If you go to the start page of the forum and look to the top left, there are three bars.  Click on that and a pull down menu has a search option. Search gastroparesis for threads to discuss it .... generally, and I am sure you know this, frequent but smallish meals will generally work best with gastroparesis.  Can you get in the extra calories by adding one or two meals/snacks?  Many people here awaken the child with a liquid offering that is quite caloric but also with a very small footprint. 

My morning ritual is to give my d a sort of "thick milk" consisting of about 3/4 cup melted Haagen dasz, 1/4 cup whole milk, 20-30 grams of melted peanut butter (I actually buy peanut butter sauce online).  This ends up being only about 8 ounces of liquid but is 400-600 calories depending on how much I concentrate it with peanut butter and ice cream.  I take it to her either an hour or so before she should awaken for school, so she can drink it through a wide straw while almost asleep and then just roll back over for an hour, or sometimes she wants it when she awakens for the day.   I do not recall if gastroparesis needs low fat ... I don't think it does, so if I am misremembering that, sorry, and chime in so we can brainstorm some other options with you.  


2.  Dairy is high carbohydrate and it is great that she'll eat it and that her GI system can handle it.  Dairy can be a great friend.  Does she eat ice cream?  Siggis yogurt or similar ... Icelandic or greek, or one of th thick ones with lots of protein are good choices for small footprint (embellish with seeds or nuts or homemade gf granola).   What about cheese?  Both quite caloric.

3.  For the SIBO, has she ever gone to a Low FODMAP diet (reducing highly fermentable carbohydrates) (look at the Monash site for what I found to be great info)?  I have been on one for several years now for GI issues (not SIBO).  It takes some stuff out of play, but if she is already GF (as am I, about 95%), you are already missing those good things anyway (flour tortillas, easy pasta out, great hamburger buns, etc).  BUT I can certainly find lots of things to gain weight on, even when eating a pretty strict elimination phase of Low FODMAP (the elimination phase should only be short term but my own issues elongated it for me so I had to learn how to gain on it.  CORN and RICE are both Low FODMAP.  If you added in an ice cream offering like my shake; incorporated some ground nuts into some of the meats or other things she'll already eat or 30 grams of peanut butter somewhere; and something like a plate of corn tortillas and melted cheese (hard cheeses are low lactose), you'd have a lot of extra calories right there. 

Another idea is that rice can pack a punch ... you can toast the 1 cup of raw rice with two tablespoons canola or rapeseed oil.  When smells nutty, add the liquid (I add 1.5 cups liquid) and cook per normal. The oil disappears but you will have just added about 240 invisible calories to the rice ... top with your normal sauce or whatever and that can add up (enhance the sauce, too, with butter, cream, oil...).

4.  Homemade granolas (you can add all gf stuff and seeds and nuts your d already likes) can pack a big punch ... I think there is a recipe on here, but just google it and sort through for your d's likes and needs.  You an put it on or in lots of stuff (grind it to add to meatballs or meatloaf; sprinkle on yogurt or oatmeal; etc)

5.  Sorry, I am still half asleep but want to give some quick thoughts ... good luck and I think perhaps you need more calories than you mentioned at the end ... if she was at 2500, maybe shoot for that again and see if she gets there.  Given her age and diagnoses, I wonder if at some point you will need to train her to eat almost like a diabetic gets taught ... first priority is to get weight and state right, but then, it seems she'll need training on how to feed herself in order to get enough of what she needs  by more, smaller meals throughout the day.
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth. FWIW ED-D is a fraternal twin and we have no other kids.
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atdt31_US
Here is one response by Tali97.  Sorry, I can't do a link, but here is her narrative:

As the parent who has a son who has always had pain on eating with resulting in restrictions. He got praise from doctors for years that he was only eating to live and not loving to eat. Until they realized what the consequences were for him.He suffered from constipation for the first 9 years of his life. He is celiac and dairy/soy intolerant. He also has gastroparesis.(So he does not trust food and can at any time find it extremely difficult to eat)

Some observations from working with him.

He needs to be informed about any change in his diet and trust that people will work with him if he finds things difficult. However, he knows that we are working forwards to him being able to maintain his weight and increase the number of foods that he feels safe eating.

If a recipe is changed he needs to be told.(You can limit the facts on the change, but he needs to know it will be different) If he is not told it will taste bad and he will not eat it. 

"We managed to reintroduce drinks by getting his agreement to drink those he used to like or introducing things like ginger ale that should help nausea.

A snack a bedtime is something that in the past was successful in raising his weight.

A dietician was helpful in getting his agreement to introduce foods. She took a very problem-solving approach to his diet. You need this number of calories, with this amount coming from protein, fats, and carbs how can we achieve this. Then gave her ideas while working with his tastes. This put me in the position of working with him instead of telling him that I was imposing a change in his diet. She was the one that added coconut oil to his shakes. Coconut oil does add flavor in some cases but it is a taste he is used to and tends to make things sweeter. 

We have successfully raised his weight and he has been able to maintain it. He maintains through highly palatable foods. But this is aided by prokinetics and olanzapine. (The prokinetic he used is not readily available in the US and the olanzapine controls his nausea and vomiting)

While his weight was going up he did develop kidney problems but these resolved after his weight stabilized at its new level."

The quotes is Tala's language.  I am adding, I think in your situation, at some point working with an ED-wise nutritionist/dietician might be a benefit but you would want to have one on one discussions to be sure the person understands they are there to help with the SIBO/gastroparesis stuff and to be a foil for telling your d how she needs to eat that is different than she did pre-diagnosis and different than her peers ... more calories than them, more meals than them, smaller meals than them, late night and early morning offerings .... and how to make them palatable and "safe" for her GI system.  You might have to interview several to find one that does not do harm, but I suspect in your case it might be worth it. 
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth. FWIW ED-D is a fraternal twin and we have no other kids.
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Pernickety
I'll reply properly when I have more time later, but thank you very much for your input. It's given me lots to go at! I'll read through all of Tali97's posts. I hadn't thought to search for gastroparesis before, sorry.
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tina72
Pernickety wrote:

So any supplement drinks are a no-go as she was completely tube + supplement fed for a while and now freaks out at the thought of drinking them again. The last attempt had fortisip all over the kitchen floor... 


What about a homemade milkshake or a fruit smoothie with oil added? It disappers in the blender, she will not see or taste it if you use rapeseed oil. Was the game changer here...

Pernickety wrote:
So she is happy to eat a lot of meat, fish, eggs, nuts, dairy (always full-fat) and dark chocolate which is great as those foods are nutritious and dense, but I'd prefer her to eat more carbohydrate containing foods - however after months and months of arguments every mealtime over trying to get her to eat these and not being supported by my husband (very much a 'let her eat what she wants and everyone will be happy' person, blaming my anxious personality on all the fighting and saying if I relaxed about meals she'd eat enough -> not true) I was worn down and she's quite stubborn and rigid-minded so I don't think I could persuade her to change unless she wanted to.


This is very much ED behaviour...dark chocolate is a thing that is mentioned in those pro*n* sites that it has less sugar and less calories. She needs to eat carbohydrates if there is no medical reason not to eat it. You are totally write and your husbands approach feeds the ED. You need to introduce carbohydrates again. They are all stubborn and rigid, that is ED. You do not need to persuade her, if you wait until she decides to eat that you might need to wait for years. Serve it and insist that she eats that. It is a normal part of a fullnurished meal and it is ED behaviour to restrict carbohydrates so it has to stop.

Pernickety wrote:
I think she's been eating roughly 1400-1600 for the past six months, down from about 2500 as a day-patient. This is where she's historically always maintained/very slowly lost, so a few hundred more will hopefully be enough - however we've struggled through hyper metabolism in the past with her needing 2800+ to gain, but that seems to only set in when she's eating 2000+ consistently. 


You will not see constant weight gain with less than 2000 calories so you need to go back to that 2500. I would try to serve a fruit smoothie as drink in addition to 2 meals or snacks every day. With that you can easily get 500-1000 calories extra only with 2 glasses.

Pernickety wrote:
I don't know if I could increase portion sizes any more. I've tried helping her pick denser foods but increasing the volume leads to GI problems and [warning - maybe too much detail?] vomiting of undigested food up to 12 hours after a meal (not deliberately, I've seen it happen and she's definitely not inducing it). Then the next day or two after a bad GI event she seems to regress with more childlike behaviour and needs lots more encouragement to eat and I'm sure if I wasn't there she'd drastically under eat for her needs. So its a vicious cycle! Although she's willing to try things, in the last month she's definitely limited her selection of 'safe' foods more as her anxiety is escalating about being unwell over the exam period. 


The childlike behaviour after these incidents sounds like a low blood sugar behaviour I would see here after a skipped meal or snack. Very common for ED. So if portion size is not a good idea, then try to get slowly more fat in (butter, cream and oil on everything - works even with applesauce) or get her to eat more carbohydrates. Try to find out if the "fear food" is only really because of medical reasons or if AN tricks you out to be allowed to restrict more. Have a list and try to find out what she ate 1 or 2 years ago without any problems but does not seem to be possible now.

By the way, you cannot shock us here with too much details 😂 this is the right place for ALL details...
Keep feeding. There is light at the end of the tunnel.
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atdt31_US
Here is a link to the Low FODMAP cheat sheet I use a lot because it is easy to quickly tell if the food qualifies (red list versus green list). Again, the Monash site has great research and explanations of FODMAP if you want to look into it. 

https://www.ibsdiets.org/fodmap-diet/fodmap-food-list/
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth. FWIW ED-D is a fraternal twin and we have no other kids.
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scaredmom
Hi pernickety
welcome!
I do hope you get the info and support you need.
atdt31_US has given you loads of information to get started. May we ask what the actual diagnosis is?  Gastroparesis and SIBO for sure but others? Is she on meds to help, and how long has she had the diagnosis? 
Is she under a specialized GI team? And what are their thoughts regarding getting her gain? Do you have a dietitian ? 
Sorry so many questions. We all wish to help. Please ask all the questions you have.
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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atdt31_US
Hmmm .... some say Low FODMAP good for sibo but jury maybe still out in it.  https://www.monashfodmap.com/blog/whats-go-with-sibo/
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth. FWIW ED-D is a fraternal twin and we have no other kids.
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debra18
My daughter at this point eats most foods but still has difficulty with quantities. She drinks two high calorie shakes a day which provides over 1500 calories alone. Morning shake has ice cream and heavy cream ( you can add chopped nuts, syrup, cookies etc to get more calories) and in the evening frozen fruit, juice, chopped nuts and vanilla or strawberry syrup.
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Pernickety
Atdt31_US, that chart is helpful, thanks. 

Hi Scaredmom - she has gastroparesis, reflux and intestinal dysmotility (so dependent on medication), SIBO, and I suspect rumination syndrome too, but this hasn't specifically been tested for. Waiting to see the GI doctor again to trial medication that should encourage her stomach to empty. Significant GI problems for about five years, but growing up complained of stomach pain frequently which I think was a combination of anxiety and hypersensitivity to physical sensations common with ASD - this probably also contributes in part to her struggles now. She's fallen through the cracks at the moment, not under the ED team anymore, but also not seeing a dietician and still waiting to see the GI doctor again. Hopefully when we see the GI doctor next they'll drill in the importance of gaining weight. She hasn't had a period in five years and I'm terrified of all the long-term damage that's been done.

Thank you Tina72, you've made some great points about her behaviour (makes sense) and the carbohydrate restriction. My problem is how on earth can I determine whether she is genuinely choosing to eat this way because of anxiety from the GI discomfort along with general health concerns, or if its the ED digging its heels in? This might be a silly question, but do kids without body dysmorphia ever intentionally limit their food choices as a way to restrict, as is common with typical AN? Also, d gets very, very strong interests and has spent hundreds of hours researching the optimal diet and benefits/negatives of different foods. So she always has a counter-argument and multiple citations/studies to defend her food choices. In fact due to her constantly talking about the health benefits my husband has now started eating a low carbohydrate diet and has actually normalised his high bp, feels less fatigued and lost weight. Is it vital that I challenge this now, or if its more from the GI anxiety and her interest in health can I focus just on refeeding with foods she can both tolerate from a GI and a mental aspect? I don't want to miss my chance to nip this in the bud if it is ED-related, but I also don't want to rock the boat and cause unnecessary anxiety if she genuinely feels better and is happy eating this way for the rest of her life (as long as she can eat enough of these foods!). I'm sure I can't be the only one who's had this dilemma and hopefully someone with more knowledge and experience than myself will be able to advise me on how to handle this. I hadn't considered it could be ED related, I was thinking more along the lines of the anxiety from the GI problems along with the ASD causing an obsessive focus on things. 
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Pernickety
Hi Debra18, is that 1500 in each shake or 1500 in total? Either way, fab job! Does she consume those instead of a meal when feeling very full, or as a snack? How did you get her to agree to those? I wish I could get d to drink a shake, it'd sort everything out very quickly. I've tried so many variations in the past and have never succeeded. She has such a mental block with smoothies from being tube fed and also drinking supplements in the past, both of which made her feel so sick. I know the solution would likely be to employ LSUYE (is that the right acronym?) but with her age and the journey she's been on to get where she is today mentally it'd be such a backwards step so I'm hopeful I can get her to eat enough independently without resorting to that.  
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scaredmom
Pernickety wrote:
Atdt31_US, that chart is helpful, thanks. 

Hi Scaredmom - she has gastroparesis, reflux and intestinal dysmotility (so dependent on medication), SIBO, and I suspect rumination syndrome too, but this hasn't specifically been tested for. Waiting to see the GI doctor again to trial medication that should encourage her stomach to empty. Significant GI problems for about five years, but growing up complained of stomach pain frequently which I think was a combination of anxiety and hypersensitivity to physical sensations common with ASD - this probably also contributes in part to her struggles now. She's fallen through the cracks at the moment, not under the ED team anymore, but also not seeing a dietician and still waiting to see the GI doctor again. Hopefully when we see the GI doctor next they'll drill in the importance of gaining weight. She hasn't had a period in five years and I'm terrified of all the long-term damage that's been done.

I know ED can present this way too. First with GI pains etc... and could be psychological too? Have they discussed psychological meds for her? 

 My problem is how on earth can I determine whether she is genuinely choosing to eat this way because of anxiety from the GI discomfort along with general health concerns, or if its the ED digging its heels in?

What happens if you just push food through the pain? It is common with refeeding to have GI pains and hot water bottles can help, distraction etc.. and as the stomach stretches it does feel uncomfortable and then over time as it stays stretched from previous, it gets better.

This might be a silly question, but do kids without body dysmorphia ever intentionally limit their food choices as a way to restrict, as is common with typical AN?

YES My d did not have dysmorphia and limited to foods that she thought were healthy.

Also, d gets very, very strong interests and has spent hundreds of hours researching the optimal diet and benefits/negatives of different foods. So she always has a counter-argument and multiple citations/studies to defend her food choices. In fact due to her constantly talking about the health benefits my husband has now started eating a low carbohydrate diet and has actually normalised his high bp, feels less fatigued and lost weight. Is it vital that I challenge this now, or if its more from the GI anxiety and her interest in health can I focus just on refeeding with foods she can both tolerate from a GI and a mental aspect? I don't want to miss my chance to nip this in the bud if it is ED-related, but I also don't want to rock the boat and cause unnecessary anxiety if she genuinely feels better and is happy eating this way for the rest of her life (as long as she can eat enough of these foods!).

What would happen if you challenged her on this? Many have had to fight through our kid's very logical arguments to get them to gain. What would you lose? Kids with ED are very good debaters and could persuade anyone with their logic. You can refeed however you wish. Ie safe foods then adding fear foods etc.. The main goal I feel is getting nutritional rehabilitation. Take care of the malnutrition, get the weight up and then deal with what you have in front of you.


I'm sure I can't be the only one who's had this dilemma and hopefully someone with more knowledge and experience than myself will be able to advise me on how to handle this. I hadn't considered it could be ED related, I was thinking more along the lines of the anxiety from the GI problems along with the ASD causing an obsessive focus on things. 


And lastly you are not alone. Many of us have been where you are in some shape or form. 
The more you write, I wonder if ED is very strong here and making her GI issues worse. You of course know her best  and what you all have been through. Also AN can cause gastroparesis due to malnutrition.
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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scaredmom
Here are a few resources. Take what makes sense and toss the rest.
https://www.mirror-mirror.org/gastrointestinal-symptoms.htm

https://www.edcatalogue.com/disordered-digestion/

I am sure others with similar situations will be here soon too with information and support. 
How are you doing? Taking care of our kids can be wearing and ensuring you are taking care of yourself too is a priority.


When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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debra18
I think about 1500 total. You could easily get in 1000 in each shake. I used the ladder approach for the shakes. Starting with a cup of milk, than hot water with milk and honey, etc. Maybe you also could start with a cup of milk or juice with every meal? She drinks one shake with breakfast and one with supper. She understood it was easier to drink shakes than have to eat more food. Really I couldn't give any other advice besides the shakes because that's what worked for my daughter. So if you can do it some way, it's the best way to increase calories.
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tina72
Pernickety wrote:
Hi Debra18, is that 1500 in each shake or 1500 in total? Either way, fab job! Does she consume those instead of a meal when feeling very full, or as a snack? How did you get her to agree to those? I wish I could get d to drink a shake, it'd sort everything out very quickly. I've tried so many variations in the past and have never succeeded. She has such a mental block with smoothies from being tube fed and also drinking supplements in the past, both of which made her feel so sick. I know the solution would likely be to employ LSUYE (is that the right acronym?) but with her age and the journey she's been on to get where she is today mentally it'd be such a backwards step so I'm hopeful I can get her to eat enough independently without resorting to that.  


What does she drink? Is she drinking only water? If she drinks juice, you can change that to a juice shake. No milk needed in there. Some even added rapeseed oil to orange juice and then blend it, If she drinks milk, change to full fat milk and then add some cream to it. Slowly increasing. If she is really drinking only water this must be tackled as this is not normal and ED behaviour.

You do not need her to agree to anything. If I would have waited till my d had agreed to refeeding or shakes she would be dead now.
She will not agree. She is required to drink that as a medicine, just like chemotherapy.
Start with a shot glass and increase it daily. You can do that.

Her age is really no argument not to require something and not to do LSUYE. The older they get the more difficult it will be. She is living in your house and from your money I suspect and so you can set rules. My d is 19 now and we have a contract. We wrote down what we do for her (paying for life, insurances, car, phone, University and helping with everything needed) and what she needs to do for that (eating 3 meals 2 snacks, maintaining weight, going to GP when needed, getting weighed regularly and so on). She knows that first thing that will happen when she would refuse anything is that her car key would be confiscated (and she loves her car...). So if she wants to be treated like an adult she needs to behave like one. If she does not behave like an adult there is no reason to treat her that way.
It sounds hard but that is the only language ED understands...
Keep feeding. There is light at the end of the tunnel.
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tina72
Pernickety wrote:

She's fallen through the cracks at the moment, not under the ED team anymore, but also not seeing a dietician and still waiting to see the GI doctor again. Hopefully when we see the GI doctor next they'll drill in the importance of gaining weight. She hasn't had a period in five years and I'm terrified of all the long-term damage that's been done.


A dietitian is not needed to see for her, better for you so you can learn how to increase calories in portions.
She has to see a GP regularly if not the GI doctor. It is important to check her blood, heart and bones. They can get a heart damage very soon, even after refeeding. That must be checked asap.

If she did not have a period for 5 years, I am very concerned that this was not mentioned by the doctors. It is really a bad sign. She should have a dexa scan for osteoporosis soon. What about her vitamin D level? Other vitamins and minerals?

Pernickety wrote:
My problem is how on earth can I determine whether she is genuinely choosing to eat this way because of anxiety from the GI discomfort along with general health concerns, or if its the ED digging its heels in? This might be a silly question, but do kids without body dysmorphia ever intentionally limit their food choices as a way to restrict, as is common with typical AN?


Yes, they do. And a lot of kids do not tell their parents that they have body image issues and parents get that later that it was the case. If there is no medical reason not to eat carbohydrates the anxiety is without any reason and must be tackled. It is hard to see them being anxious but they need to get through that or they will use this excuse to limit more. My d was anxious about drinking a small glas of water in the end and refused even that and went IP for emergency case.

Pernickety wrote:
Also, d gets very, very strong interests and has spent hundreds of hours researching the optimal diet and benefits/negatives of different foods. So she always has a counter-argument and multiple citations/studies to defend her food choices. In fact due to her constantly talking about the health benefits my husband has now started eating a low carbohydrate diet and has actually normalised his high bp, feels less fatigued and lost weight. Is it vital that I challenge this now, or if its more from the GI anxiety and her interest in health can I focus just on refeeding with foods she can both tolerate from a GI and a mental aspect?


This is ED. My d spend thousands of hours in internet planning diets and watched receipes and "learned" about "healthy eating". They all do that and this is a big trigger. You need to check what she is doing there in the internet, there are a lot of very dangerous sites for patients with ED where they "learn" how to restrict more and how to live with 500 calories a day and how to trick out the family. Check that. Limit her internet access if necessary. It is not normal to do that.
As for the arguments, this is no logical discussion with an ED patient and you can only lose that fight so please try not to engage into anything. Tell hubby that she is no good ressource for diet tips as she obviously does not know what a good diet is (or she would eat everything relaxed and be not underweight). Hubby should listen to his doctors and not to an ED patient.

Pernickety wrote:
I don't want to miss my chance to nip this in the bud if it is ED-related, but I also don't want to rock the boat and cause unnecessary anxiety if she genuinely feels better and is happy eating this way for the rest of her life (as long as she can eat enough of these foods!). I'm sure I can't be the only one who's had this dilemma and hopefully someone with more knowledge and experience than myself will be able to advise me on how to handle this. I hadn't considered it could be ED related, I was thinking more along the lines of the anxiety from the GI problems along with the ASD causing an obsessive focus on things. 


You will not be able to change her behaviour without rocking the boat. They all are anxious and we want to comfort them but this is not possible when what they do is harmful. If she had a drug addiction it would comfort her to take this drugs but you would want her to stop that although it would create more anxiety.
Keep feeding. There is light at the end of the tunnel.
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deenl
Hi Pernickety and welcome,

Pernickety wrote:
Hopefully when we see the GI doctor next they'll drill in the importance of gaining weight. She hasn't had a period in five years and I'm terrified of all the long-term damage that's been done. 

You are right to be concerned as this is a very clear sign of malnutrition and has dangerous implications for bone health among other problems. Be sure to bring this up at the meeting with the doctor. It is clear that your daughter's amateur research, together with her digestive issues are standing in the way of full nutrition and good health.

Pernickety wrote:
This might be a silly question, but do kids without body dysmorphia ever intentionally limit their food choices as a way to restrict, as is common with typical AN?  

Yes, no body dysmorphia or desire for thinness here, just an inability to eat.

Pernickety wrote:
Also, d gets very, very strong interests and has spent hundreds of hours researching the optimal diet and benefits/negatives of different foods. So she always has a counter-argument and multiple citations/studies to defend her food choices. In fact due to her constantly talking about the health benefits my husband has now started eating a low carbohydrate diet and has actually normalised his high bp, feels less fatigued and lost weight. Is it vital that I challenge this now, or if its more from the GI anxiety and her interest in health can I focus just on refeeding with foods she can both tolerate from a GI and a mental aspect? I don't want to miss my chance to nip this in the bud if it is ED-related, but I also don't want to rock the boat and cause unnecessary anxiety if she genuinely feels better and is happy eating this way for the rest of her life (as long as she can eat enough of these foods!). I'm sure I can't be the only one who's had this dilemma and hopefully someone with more knowledge and experience than myself will be able to advise me on how to handle this. I hadn't considered it could be ED related, I was thinking more along the lines of the anxiety from the GI problems along with the ASD causing an obsessive focus on things. 

I see both challenges and opportunities here. Your daughter is clever, determined and involved in her care. If you can harness those qualities towards health then the chance is good that the new habits will become very strong. However, the torrents of nutritional information, not all of it reliable, on the internet can cause significant  distress and confusion. You may have to limit her access to such sites. Perhaps a good dietician could take a similar problem solving approach to Tali's. In your shoes, I would hope that they would to be clear that they had to study for many years to acquire trustworthy knowledge and that the internet was only a source of confustion. I would also insist that they include the parents so that everyone is working together in sync and that the focus is on nutritional rehabilitation and weight gain. 

There is also the additional challenge of parenting a child who is not neurotypical. I would encourage you to think back over her life to what parenting techniques you have used in the past. Also to what professional support has been helpful. Are there any techniques that you could adapt to the current situation? Has she accepted knowledge and boundaries better from a professional,for example? How did she react to situations where you simply said X has to happen? Did the firm boundaries help or make things worse? Answers to these questions may give you an idea on how to proceed. Very often less typical kids require less typical parenting skills. You know your daughter best.

It may not be possible to help your daughter get well without causing distress. I used to imagine that parents bringing their kids to cancer treatment would feel the same way - their kids miserable about a very difficult treatment but the parents knowing it is for their long term benefit. All we can do is be extra loving and caring and support them through it.

I do not think that any of us can give you definitive advice as your daughter's combination of issues is pretty unique but we can give you lots of ideas. Please take the ones you like and keep the rest in reserve. OFSED has many different faces and we all know that if you have met one person with ASD, then you have met one person with ASD. Even the most straight-forward ED journeys require lots of trial and error. We have a saying here that bears remembering - Feedback, not failure. Every technique that you try will bring you closer to the combination that will work. We would love to help you with ideas and support while you find the way forward.

Wishing you continued strength and courage,

D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
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Tali97
I could be misreading your replies, not sure if you have done a gastric emptying study. Is the drug that you are going to try a prokinetic? You say that your daughter has read up about diets that would help her, but have you? I found Crystal Zaborowski Saltrelli informative when my son was first diagnosed, she has written books on the diet for gastroparesis. What I have found is that everyone with gastroparesis has a different ability to tolerate different foods. For example general advice is that carbonated drinks are not good for gastroparesis sufferers, however, my son finds that the drinks do help him particularly ginger ale. 

 I know that trust is an important factor when dealing with my kid and getting his feedback is also important. He will often be willing to problem solve with me to get a better place eating wise when he started with a no. You say your daughter will not drink ensure etc. What we found that when he was totally fed up with milkshakes is that he was willing to pour the milkshake over cereal. When you say she will not eat carbs. Do you mean no pasta, bread, etc? You state that she will eat nuts. Will she eat nut bread, cakes made with almond flour? I have a lot of homemade gluten, dairy free waffles in the freezer that he can take out and eat. It helps me to have patience if I know that there is some food that he can get when his stomach is having a really slow day. 

Are cooked, pureed and juiced vegetables all too much for her? 
What makes things worse? What makes things better?  Does she have safe foods that she eats on days that she is struggling to eat? How does she reduce her anxiety? 

I will state that due to his inability to enough calories some days we rely on candy to make up the difference. He will often eat when he is not hunger and does not want to. He will not eat when he feels nauseous but will make a point to eat when he has somewhat recovered. He is very conscious of his responsibility to take care not to lose weight.
18 year old boy (Gluten Free/Dairy Free 2005)
 IP - March/April 2014.  ARFID.
 2015 - Gastroparisis
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Youthful_lady990
I'm so glad I found this group! My daughter has had chronic nausea for approximately 5 years. She has been in and out of IP for AFRID.  I've had a hard time accepting this as we really haven't been allowed to see GI doctors unless I leave the country and pay for it.     But she is getting better slowly. She was on erythromycin to improve motility. 250 milligrams three times a day 1 hour prior to eating for 6 months.   This certainly helped with her gastric emptying and allowed her to tolerate tube feeds better.   Last month it seemed to stop working so we tapered off.   I've now just started rubbing cdb oil on the bottom of her feet and that seems to help as well. I bought Elixinol brand.   Good to know others are struggling with the same issues and uncertainties and questioning whether it's a medical versus an eating disorder or combination of both.    She has been on olanzapine as that too has helped her appetite event and her anxiety.  We have just paid for a genetic test to see what psychotherapeutic drugs work best with her body and we'll go that route to help with other mental health issues.    once she returns home full-time we may likely do a second course of antibiotics for sibo as the first course decreased her nausea and pain by 50%!    She also had a detailed tick-borne test done in Germany and a couple of co-infections came back as potentially positive. Then I started researching lymes and a GI specialist did a study showing those people with chronic gut symptoms of which nothing else could diagnosed, 82% had a tick Bourne infection.   I had no idea some tick-borne infections can cause such debilitating gut issues!     
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tina72
Lyme disease can have a severe impact on all inner organs. Interesting idea.
Keep feeding. There is light at the end of the tunnel.
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mjkz
As someone who was treated for Lyme disease and has no eating issues, Lyme can affect just about everything. I had vision changes, joint pains, muscle pain, reflux and delayed gastric emptying just to name a few.  I don't think enough attention gets paid to Lyme disease!!  My daughter was treated too and her gastroparesis flared big time when she had Lyme.
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