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

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Psycho_Mom
Hi All,

No offense, but it's been lovely to take a step back from this forum for a little while. D has been doing extremely well, completed first term away at college, seems in solid remission, still eats somewhat more to schedule than a normal young adult, still feels like she has to eat more than she'd like, but has been able to do it.

Now there's a new big problem, and I am back once again to ask for advice. D has developed a bad case of acid reflux. A near-constant feeling of mild heartburn, sometimes severe. She's seen two docs and been prescribed two kinds of PPI's. They don't help much, she feels not great, and eating is more difficult. She's lost three pounds.

We're seeing her chiropractor, and trying to have her have more snacks and smaller meals, and thinking about stress reduction techniques (which I think she's really gotten fairly good at) but.....whew, you see that this could be a real problem. Any advice?

Thank you all,
D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
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atdt31_US
My first thought is to give an aggressive dose of short term laxative to clean her out. Can still eat lots of calories, but make them low residue. On my phone and no time to type right now, but constipation (even when it is not obviously present) can present like this.
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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AUSSIEedfamily
Dear Psychomum,

I used to suffer from heart burn/gastric reflux type symptoms with a constant need to burp. At this time I was seeing a manipulative therapist (a qualified physotherapist who also qualified in musculoskeletal manipulation) Brian Edwards (dec) who was one of the most emminent manipulative therapists in Australia. He would manipulate my back because it was sore & the heart burn/gastric reflux type symptoms would dissapear. Brian was not convinced of the correlation between the two until my wife developed the exact same symptoms. She was booked in for a barium meal scan by the medical doctor an unpleasant test that I had some years before to try & find the reason for my heart burn/gastric reflux they found nothing. I advised the wife to see Brian which she did. Brian was sceptical of being successful for my wife but could see her back was tight & would benefit from manipulation & was very surprised when my wifes heart burn/gastric reflux type symptoms & constant need to burp went away after he manipulated her back. No need for the barium meat test. Unfortunately Brian has passed away.

My wife still gets episodes of heart burn/gastric reflux type symptoms with constant need to burp & we now recognise what to do. I give her a good back massage & it eases the symptoms then we book an appointment for the local manipulative therapist & her heart burn/gastric reflux type symptoms go away.

A chiropractor may be able to help, if not consider a Musculoskeletal manipulation therapist.

My back pain was usually just between my shoulder blades & its the same place with my wife. I dont get this very much anymore as I know how to keep my back in good condition although every now & then there is a need for me to see the manilulative therapist if the symptoms persist
ED Dad
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Trytrytry
Some simple things - sleep with the bed up so not lying flat, mine take PPIs plus when in bad phase carry around bottle of gaviscon (ant-acid over the counter) and drink it from the bottle, not becoming too full at one sitting - multiple smaller meals with low fat but don't know how diet change will work for your d.
I have seen non-ed people gain quite a bit of unwanted/unneeded weight by self medicating by constantly drinking milk. Some people believe certain spicy or types of food make things better/worse.

Was this an issue before? Does she have a history of purging -that will weaken her sphincter, has her diet changed? Meal size?

Sorry I have no answers only what are obvious things to try. A gastroscope will show if she has inflammation in her oesophagus but
I want a realistic dr and team, not someone who says what I want to hear and not a 'touchy feely nice' dr that doesn't have success.
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atdt31_US
I am at my computer now, with better ability to respond.  I am not a doctor so this is just my experience (ratified, however, by my kids' GI).  My underweight d (believed by nearly everyone to be non-ED) had severe reflux from weeks-old until about 8 or so years of age.  Tons of Prilosec and other similar meds to get a handle on it.  They worked somewhat, but not ever completely.  Simultaneously, she had little willingness to eat AND was severely constipated.  Unsure on when the constipations started, but the others were by four weeks of life.  At 2.5 years of age, with the eating and reflux issues still severe, she had rectal prolapses, so we added daily laxatives to the meds already in place to deal with the reflux.

Fast forward 7+ years and she went off Prilosec and changed laxatives.  Her tummy and reflux issues began to change and in some ways abate - was able to stay off Prilosec but tummy complaints persisted and caused undernutrition.  Then, after a year of the "new" laxative, she began doing quite poorly and as an experiment, we took her off all laxatives, despite clearly still being dependent on a laxative to not be backed up.  We now help the constipation with daily enemas (2+ months of this).  In those two months of limited oral laxative, her appetite has gone up, her tummy complaints have gone down (disappeared, actually), and she has no reflux.    

After a long appointment with her GI this week, my take is that it is very possible that her first symptom was constipation, albeit unrecognized as a newborn/infant.  It is possible that being backed up caused or contributed to much of the reflux and lack of appetite/unwillingness to eat for literally her entire life.  We don't know for sure yet, but GI says it makes sense and is supported by some other cases she has seen, personally.

Also, anecdotally, I suffer from severe constipation and require significant medications (otc) to function in that regard. I have had a diseased part of my colon removed recently, and even that has not abated the need for daily laxatives for me. When I decrease, or other circumstances alter my ability to stay on my daily laxative regimen, one of the first symptoms is reflux and, interestingly, the exact back pain between the shoulder blades described by ED Dad.  When I clean out and don't get behind on bowel movements, reflux disappears.  Hard to tell exactly, but it seems to be the same with my d -- since keeping her bowels better regulated, we have had no reflux complaints after years and years of severe reflux.

I think it is very easy for patients and doctors to under-recognize constipation because there may be daily bowel movements of apparently decent volume and even consistency,  but if they are less-than-complete evacuations, they stack up and ultimately cause issues further up the tube (causing reflux or other discomfort/lack of appetite).  This is my working theory (and that of our very-involved GI, at least as I understand her position).  

For my family I think we have a genetically slow colon motility that contributes in great degree -- but in your d's case, if she is backed up it could still be having the same result.  It seems to me, given that the meds have not made it better, something more structural like this is possible.  And, it seems to me, if you want to experiment to see if this could be a contributor to her current discomfort, you should be able to find a laxative and still maintain caloric intake -- but maybe changing the type of calories for a few days would be prudent to let the clean out be as effective as possible -- I am not suggesting a clean out like for a scope, but slightly less complete than that to allow for no fasting. 

Sorry for all the detail -- when you talk to doctors and kids about this as much as I have in the last decade, it becomes clinical and necessary to go into -- but sorry if this was too involved for the reader.  


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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melstevUK
Psycho_Mom,

My d is finally out of the other side of an and in solid remission.

However. for the past couple of years she has had really bad reflux and has needed medications like omeprazole to help.  It seems to be related to the stomach having to get used to larger quantities of food and maybe not being able to tolerate this.

She still takes the medication but over the past year she has mentioned nothing at all about the reflux.  I don't think it has totally disappeared but things must have improved or I would have heard about it.

I instinctively feel that this is another step on the recovery journey - the system has been 'messed up' with years of eating too little and suddenly the stomach has to cope with larger quantities.

I cannot prove that this is so - but my d's progress seems to evidence this.  Until she was ill she had no obvious gastric or intestinal symptoms.  The reflux started around the same time as her recovery.  So I remain confident that things will get even better.
Believe you can and you're halfway there.
Theodore Roosevelt.
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momof4_US
Glad to hear your daughter made it through the first semester.  3 of my four kids all have some reflux, some worse then other.  My daughter who suffered from ED had developed what first seemed liked chest pain or reflux.  The normal reflux medicines did not touch it.  What did help was taking her  hydroxizene which she takes for anxiety every so often.  within in 20 minutes after taking the pain subsided.  For my non ED daughter with really bad reflux she has to take double the OTC dose to manage her symptoms (prescribed by gastro MD).  Hope you get this sorted out.  wishing your daughter continued success!
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bccka5
Our D had major refeeding issues and constant pain. She was in IOP at the Cleveland Center for Eating Disorders (now the Emily Program). I mention this only because our doctors were really on top of things and prescribed a variety of things that helped during that time.

She took: Prevacid (first thing in the morning), Miralax (2 times a day), Simethicone (Mylanta Gas after meals) and Lactaid (when eating dairy). Our d continued to use these meds for 3 years and is just now starting to not need them. Around 10 weeks into refeeding she was tested for lactose intolerace and came back positive. The nutritionist told us that many ED patients become intolerant to dairy but if they continue to eat dairy and still use the lactose enzymes their bodies learn to produce the enzymes needed. We followed her recommendations and her body has amazingly healed itself!

She also needed anxiety medication because the pain in her tummy often manifested because of the fear of food, which also lead to extra gas, heartburn, etc. We had a hard time discerning between true GI pain and anxiety. It's a vicious cycle, as you well know. - Stay strong and persevere!!



Daughter diagnosed with anorexia at 12 in 2013 without having any image issues/concerns about calories or exercise. Hospitalized - 3 days. FBT at home along with outpatient therapy - 16 weeks. Recovered/weight restored - 4 years. Still gaining and growing but has no hunger signs yet.  
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Kali
Hi Pschomom

Bcck5 raises a good question about lactose intolerance which can cause stomach upset and reflux.

However your d has been to 2 drs. who have not said anything about that possibility, right?

An easy way to see if that might be the culprit would be to feed your d. soymilk or lactaid milk and avoid any cheese or other dairy from cows for a week or so and see if she feels any better. Goat or sheep cheese does not have lactose so you could feed her that in the meantime.

Does she notice whether the reflux becomes worse after any certain foods she eats?

If you find that the symptoms recede when you reduce the lactose in her diet, you could also try giving her some lactaid pills, they are not harmful they just have acidophilus in them, and see if they help. 

Kali
Food=Love
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bccka5
Hi Psycho_Mom, 
I've been thinking about your post ever since my last comment. After re-reading it I'm now starting to wonder if the acid reflux isn't more anxiety driven. Especially if the meds for reflux aren't working.

You mentioned that it was your D's first year in college. We all know that it a stressful time and often a trigger for the onset of many ED's. Could it be that even though she's doing well, the stress of it all has manifested in anxiety? My D was 10 weeks into refeeding before she developed a crippling anxiety that made it very difficult to eat. Because she already had such considerable GI issues, we thought this was just the result of weeks of major abdominal pain, bed rest, and pure exhaustion. She actually did have reflux, but again, the anxiety often times masks itself and presents in a similar way. (Of course her doctors knew this, but it took awhile for us parents to understand it all.)

Even now, 3 years later, if my D loses even 1 pound, we see that anxiety emerge. She's still on meds so that really helps her, but her psychologist, Dr. Warren, told us that a 1 pound weight loss makes the medication ineffective. It's a double whammy.

If your D has developed anxiety, her weight loss may actually be a contributing factor to her Gi issues. Stress reduction is excellent, as well as chiropractic care, but unfortunately if the pain persists, it may have to be treated with other medication that includes an anti-anxiety component. 

Just a few extra thought to consider. Good luck to you and your D!!! Please keep us updated.
Daughter diagnosed with anorexia at 12 in 2013 without having any image issues/concerns about calories or exercise. Hospitalized - 3 days. FBT at home along with outpatient therapy - 16 weeks. Recovered/weight restored - 4 years. Still gaining and growing but has no hunger signs yet.  
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