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

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

Join these conversations already in progress:
• Road To Recovery - Stories of Hope
• Events for Parents and Caregivers Around the World
• Free F.E.A.S.T Conference Videos

Visit the F.E.A.S.T website for information and support.

If you need help using the forum please reach out to one of the moderators (listed below), or email us at bronwen@feast-ed.org.

nbjames
Hello

I really don't know if.... well I am just wondering if this is normal and if I am on the right track.

My D 16, has been seen by GI for abdominal pain for 2 years now.  Worked up with every test imaginable and no more dx than functional dyspepsia (they don't know what the dx is).  Her pain is triggered when she eats.  Everything she eats hurts her stomach for about 1 - 3 hours afters.  In October we noticed her getting really thin and she admitted that she stopped eating breakfast because she would sit on the bus in pain and her school day would suck.  She also ate less b/c bigger meals made the pain last longer.   Got in to FMD and I pushed really hard to get her seen by eating disorder b/c I knew there was a problem and her weight was dropping fast.  I guess I yelled enough and she was put urgent and seen at the hospital.  Her heart rate was 43 and they admitted her. 

Spent 2 weeks in hospital and then d/c.  We are now at home for the past month.  She eats everything in front of her it takes forever and she her pain is constant.  She cries at every meal.  Needless to say we have noticed her scratching her hands and curling in a ball and saying she doesn't see an end.  I yelled and screamed some more and got her into Pain clinic (no help) told to do CBT.  We have her in a therapist to work on the fear she has of food (it causes her pain).  Got back to FMD and started on antidepressant.  She is sad all the time, sees no hope.

I don't know what to say to her.  What positive encouraging things can to keep her eating, to see hope when she sees none.

The abd pain was here before the ED and I know that the stomach hurts when refeeding but this is compounding on her already normal amount of pain.  her P stopped in October but just got one last week (so yea, although she was not happy b/c that meant cramps on top of pain).

Has anyone else experienced this?  Abd pain not really diagnosed that morphs into an ED to stop the pain now in a full blown ED with chronic pain. I am sure there are body issues into that as well.

any help and I am looking for something to help my D and keep her eating, positive, and alive.
Quote
scaredmom
hi nbjames,

I welcome you to the club that no one would willingly join. I am sorry for the circumstance that have brought you here and there is hope. 
You have done really well for pushing your doctor to get assessed. Many have found that they had to really advocate for good care and to be taken seriously by the health professionals.

I am glad she is eating all that is in front of her that can only help. 
For her pain, is she on meds? Sometimes a therapeutic trial of meds for pain can help.

Sometimes a low dose antidepressant or neurological meds can help. For example: Cymbalta (here in Canada) can act as both an antidepressant and pain med for those with neuropathic pain. As well as lyrica (pregabalin, or gabapentin). Just thinking out loud here. I am sure your team has tried or thought of this already.
Has she seen a neurologist to consider neuropathic pain, that is referred to her GI tract?

Some have found that trying to be positive did not work (ME). Soft kind murmurs, that this will get better etc.. may help too. 

Was there a psychological trauma prior to the GI pains? I wonder about the psychology behind the pain too.
Is she gaining? 
Please ask all the questions you have. 
We really want to help. There is such  a wealth of real life experiences from all over the world. 
I hope you find the support and information you need. 
XXX
Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
Quote
tina72
Hi and a very warm welcome from Germany although I am sorry that you need to be here.

If they can exclude any physical reason for this pain it might be a psychosomatical reason. Another idea is that ED is going around much longer than you think and it was ED related even when you did not realise that. Many parents did not see ED many months before it was obvious it is there (my hands up, too).
Did you try plant meds already? A warm cushion? Is she constipated, too? Does she drink enough?
Did you try some low dosage pain meds given just around meals so she can eat better?
Is it more with special meals? ED patients often eat vegan or vegetarian diets with tons of vegetables that are hard to digest. Did you try drinking calories in milk shakes or smoothies?
Did you try to give her dried intestinal bacteria to help the intestine system? Malnutrition leaves a nearly dead intestine system like after chemotherapy or antibiotics. That is often one cause of the constipation during refeeding.

Sorry, so much questions but we need a bit more information to be able to help you better...
During refeeding these stomach pains are quite normal. The malnutrition and starvation makes the intestine system shrunk and it takes time to make it grow to a normal level again.
Keep feeding. There is light at the end of the tunnel.
Quote
nbjames
Hi There

Well they seemed to rule out everything.  Gluten, ulcer, Motility, MALS, H Pilori, structural abnormalities you name it.  She has had scopes, scans, MRI, CT, biopsies, nuclear medicine, multiple GI type drugs.  nothing.  No other symptoms but pain.  no constipation or diarrhea. we have literally tried everything with no help.

FMD started her on Lexapro but I read what you wrote about Cymbalta and now an kicking myself for not knowing about that one.  Although I may look mad going back to FMD after 1 week and saying change it.

they would not put her on Gabapentin (too many side effects for teenager) and I even asked for CBD oil - nope.

She was never depressed before but it seems like she is so sad now. and angry at times  My friends call it resting b-ch face.  the look I get when food is put on the table.  It is her sadness that kills me.. That is why i pushed for an antidepressant ( I really didn't want her on one) the FMD said SSRI would help with pain.

Refeeding is hard when I know that dinner, which is a big meal, will cause her 3 hours of pain afterwards and no amount of hot water bottles or special positions help.  No neurologist yet.

The ED outpatient we are in is a joke and they refused to get her a psych consult since their only push is refeeding and using the Maudsley (sp?) approach.  We only see NP and SW and they are both useless (the visit lasts about 25 minutes).




Quote
tina72
"She was never depressed before but it seems like she is so sad now. and angry at times  My friends call it resting b-ch face.  the look I get when food is put on the table.  It is her sadness that kills me.. That is why i pushed for an antidepressant ( I really didn't want her on one) the FMD said SSRI would help with pain."

That is really normal behaviour for a malnurished brain of an ED patient. The depression is due to malnutrition. Does she eat enough fat? 30% of intake should be fats. The brain is running on sugar and fats and those are normally the first cut out with restriction.
It is very likely that the pain is not physical but in her head. Angst can cause pain.

Did you already try aloe vera juice? That covers the stomach from inside and helps with the acids. Maybe worth a try.

"The ED outpatient we are in is a joke and they refused to get her a psych consult since their only push is refeeding and using the Maudsley (sp?) approach."
That is quite normal for ED treatment as most of the symptoms are due to malnutrition and fade away with refeeding. Anorexia is a biochemical disease and not a psychological.

"Refeeding is hard when I know that dinner, which is a big meal, will cause her 3 hours of pain afterwards and no amount of hot water bottles or special positions help."
Is it less painful with smaller meals? Can you think about feeding her small portions every 1-2 hours instead of bigger meals for some time x?
Keep feeding. There is light at the end of the tunnel.
Quote
Kali

Hi, I'm sorry your daughter has been suffering like this and welcome. I hope you will get support here.

Just curious, I know you said she has been tested for everything but did that include testing for Crohn's Disease, Acid Reflux, Ulcers, Irritable Bowel Syndrome and possible Lactose Intolerance? I'm not a doctor and we can't diagnose anything here, but these medical conditions come to mind when I hear your story as they can cause stomach and digestive woes. 

It is still possible that there may be a medical issue here even though it is currently undiagnosed but clearly she does have to eat. Are there any foods which cause her less discomfort?

I once had an undiagnosed condition which caused severe stomach pain and had a ton of tests, landed in the hospital, lost alot of weight because it hurt to eat and in the end was treated with a strong antibiotic which seemed to clear it up. I had been in Central America and also went to an infectious disease specialist and the consensus was there that I might have picked up a protazoan infection (but they never found any evidence of it)  and the hospital thought I might have had a burst cyst on an ovary which caused an infection (also never confirmed with tests). It was never really clear but after the course of very strong antibiotics it got better. Did you and your daughter visit any areas before she initially got ill and started getting stomach aches where she might have picked up some sort of infection which is not commonly seen where you live?

warmly,
Kali

Food=Love
Quote
nbjames
there is no food that makes it worse or better.  eating an apple or a bowl of pasta generates the same pain.  the pasta will mean the pain is longer in duration simply because it is more food.

she has been tested for everything and it is all negative as this is her only problem.  no diarrhea, constipation, vomiting ect.  normal urine, normal bowel movement ect.
Quote
scaredmom
Aaah do you think this is just ED? 
Many have had years of GI symptoms with no real diagnosis and the refeeding was the answer.
I believe she is in pain and I think the food will really help over time. It takes time for the stomach to work again. It is shrunken and pain may get worse before it gets better. 
You know your situation best. It just really seems very ED-like.
XXX
Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
Quote
scaredmom
Just found something interesting:
http://www.mirror-mirror.org/gastrointestinal-symptoms.htm

Just food for thought.
XXX
Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
Quote
debra18
My daughter also complained of stomach aches and said that's why she wasn't eating. She lost a lot of weight in a short period of time. She never told me she thought she was fat or had a fear of gaining weight. I am finding now notes from her dairy from over a year ago that the reason she stopped eating was because she thought she was fat and every time she tried to eat she felt like her stomach was a blob of fat. I have no idea if this is your daughter's situation.i am not a doctor. Just telling you my experience. She had terrible stomach pains during refeeding but over time stopped complaining. I used a lot of distractions. She read books while eating and after.
Quote
scaredmom
Hi as I have been pondering your situation, I have a few comments.
As debra18 and Kali note, we are not doctors. Also I do not know if cymbalta  is indicated for the paediatric population. And at low weights meds may not work.

I would suggest first and foremost, she be nutritionally rehabilitated. Then when her weight is up to her historical weight percentile then consider other possibilities. For now put neurologist on hold.
many here have found with food and weight gain the brain and pain get better.
thinking of you,
XXX
Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
Quote
nbjames
hi debra18

did the pain get worse before it got better for your d?
Quote
tina72
If it is related to angst about food it will get worse before it gets better like nearly all ED symptoms.
I would try to get through it with small portions and high caloric footprints. Maybe you can try some over the counter plant meds, often the placebo effect helps with the pain (because it has its cause in the brain).

I want to add a thought about your nickname. This is a public forum and your name may be found using google. The last thing you need now is your d reading what advice you get here. So if that is your real name please contact a moderator to change that.
Keep feeding. There is light at the end of the tunnel.
Quote
debra18
Yes it got worse because I insisted on her eating full meals and snacks which were supervised in school and at home. She was crying in pain for about 3 months during this time. It's terrible to watch your child suffer but it's the only way for them to get better.
Quote
Kali

Hi nbjames,

I read an article today which reminds me of how you are describing what happened to your daughter and thought I'd pass it on. There was a teenager who presented, like your daughter, with severe pain when she ate. She had an exhaustive number of medical tests, all of which turned up nothing and then was diagnosed with anorexia. Only it wasn't anorexia. It was something called Median Arcuate Ligament Syndrome, which is very rare.

https://honey.nine.com.au/2019/03/04/14/29/anorexia-misdiagnosis-median-arcuate-ligament-syndrome?fbclid=IwAR0f3zB42bXbSdX-Q1ciB7Px_BIc8Qj22sNu45ixcQnavabT0TkdN-cEjj8

What do you think?

warmly,

Kali

 

Food=Love
Quote
nbjames
Oh yes, I pushed for MALS.  MRI neg.

I am an ER RN. I have spent the past 2 years researching EVERYTHING.  I have pissed off the GI docs so badly I even emailed the head of the hospital as well as the head of the fundraising board (on multiple occasions) just to get them to do more for her and get her seen ASAP when i didn't think it was moving fast enough.

I am exhausted.  there is not a single medical possibility that i have not pushed to have ruled out.  The only one that they cannot prove until weight restoration is SMAS so i am hoping within a month or 2 there is some movement in that way and this can prove to be the cause of her pain or be ruled out.

until then.... I cry alone in the bathroom or in the car... i watch silently while my baby sits in constant pain, as she has for almost 2 years.  curled up on the couch crying.  I yearn for her to be better and the loving happy girl i remember. 

as to whether or not my child will one day google this name.  we have always been honest with her as to what is going on and how we feel and if she googles this hopefully she will understand this posting has come from a place of love and our desperate need for support and help in a time when my husband and i feel hopelessly alone.   we are not, nor have ever been, embarrassed or silent about this dx of anorexia. 



Quote
tina72
Does some pain meds help? If not that is another sign for a psychosomatical reason...
Keep feeding. There is light at the end of the tunnel.
Quote
scaredmom
hi nbjames,

Thinking of you and hope all is OK.
XXX
Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
Quote
Mamaroo
Hi Nbjames

Sorry your d is suffering so much now and that it is so hard on you no. The only advice I have is to give her Aloe Vera juice, a glass a day. I give that to my d when she complained about nausea. Her nausea was made worse by drinking green tea. I hope things will turn around soon. Sending you lots of hugs 🤗🤗🤗
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
Quote

        

WTadmin