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martican

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What a gift to find out about this forum after 18 months of AN struggle! Now I feel I have a 24/7 support, not just once a week.

Let me introduce myself, and our situation. My d is 14 y.o. dx with AN. At age 4 she was dx with Asperger’s. Prior 1st AN signs she had a miserable year bc she couldn’t connect with her peers, she had no friends, felt depressed and suicidal.

Dec 2015 – dieting started and purging. Family doc dismissed us saying it will pass. We had to wait for ED clinic appt till Feb 2016

Feb 2016 – ED assessment, sent to the hospital for 3 weeks at 84 lbs. Came home with 94 lbs.

March 2016 – outpatient FBT Maudsley treatment. ED therapy once a week till present. She regurgitated and vomited after some meals, quite often. Wasn’t swallowing her saliva (all that started in the hospital).  I insisted on the scope but specialists blamed ED. We live in Canada, Ontario, hence long waiting list for health services.

July 2016 – finally scope and gastric motility done. Gastro said one of the slowest digestion she has ever seen. Biopsy showed Eosinophilic Esophagitis (EoE) – inflamed esophagus. The cause is usually food allergy. I was questioning if this could be due to her vomitting but gastro said given very high amount of eosinophils (white cells), it is food allergy. She has never been allergic to anything. Symptoms of EoE very similar to AN, treatment absolutely opposite (low calorie meals, small frequent amounts, lots of food restrictions, preferrably 6 allergen food elimination diet to find the culprit). It was a catch 22. Meds to increase digestion didn’t help at all. Steroid treatment didn’t work. Finally, 5 wks of elemental diet (liquid hypoallergenic drinks only) helped to bring EoE under control in Jan 2017.

Jan 2017 – still at 95 lbs. Started taking steroids in order to eat everything except dairy an soy (per gastro doc), vegetarian per her choice. Still wasn’t gaining weight.

Feb 2017 – caught her vomitting at night. Took another stress leave, and 24/7 monitoring started. Partial school day, lunches at home. Monitoring at school in place. She tends to have suicicadal threats bc she feels lonely, regular psychiatrist appts.

May 2017 – she is at 107 lbs. Still can’t have soy and dairy until next scope (next month). Got her eat fish and we are at 2 bites of chicken (work in progress). She absolutely loves animals bc she still has trouble making friends but given the fact  she loved meat prior AN, there’s no choice for her until she is fully healthy. She is still struggling with early satiety, and hates the feeling of fullness, screams that she has her limits but I push till sometimes she regurgitates. Help! I hover below 3000 cal a day bc of this!

Also, she experiences abdominal pain a lot. More like discomfort which is released by burping but it is an ordeal for her to wait for that burp. I found somewhere on this forum digestive enzymes, so I started that today.

One last thing … what is “WR”? I see it a lot in this forum J




scaredmom

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Reply with quote  #2 

Hi
Welcome, I am pretty new here too and live in Kitchener Ontario. WR means Weight restoration. You will get a lot of support and guidance here so please keep asking questions. I am not sure what to advise you today. Others will be here soon to give you more information.

We went to McMaster in Hamilton for inpatient for my 12 yo daughter for 3.5 weeks in March-April. She was admitted here in Kitchener first and our pediatrician transferred her there. It was good and our team here is FBT and really supportive.
I heard certain parts of Ontario (ie Toronto) may not be so good. Where are you located? Ottawa may have a ED program for children?

Can you try smoothies/milkshake even non dairy? I have added canola oil to everything I can. At 120 cal per tablespoon I add in 5-6 with my daughter's smoothies so it increases the calories to over 1000 easily and she does not complain at all. I add it to spaghetti sauce too. I basically fry all foods in a lot of oil now to increase the calories without increasing the volumes or amount of food on her plate. There are some threads here on high calorie foods. Also I have searched cystic fibrosis web sites for recipes for high cal foods too.

Wishing you all the best.  

Foodsupport_AUS

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Reply with quote  #3 
Welcome to the forum. 
It sounds like you have been on quite a journey so far with your D. 
Early satiety is common. It can be really tough to work out whether it is genuine physical satiety or mental satiety. No easy way of working it out either. My D still seems to get it at times, yet at others seems to be good at soldiering on through. 


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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
Torie

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Reply with quote  #4 
Welcome, martican.  So glad you found FEAST - it is the club everyone wishes they didn't have to join, but is so grateful to find when they need it.

You are so right that your d need to keep gaining and keep eating meat.  And that she needs 24/7 monitoring to stop the purging. So, so much easier said than done, I know.

I wonder if you can increase the number of meals / snacks so that the calories can increase without adding more to any given meal.  As keepsmiling said, you can add a surprising amount of canola oil to everything from soup and yogurt to pasta and sauce.  Stir vigorously and - voila! - it disappears without changing flavor or texture in most cases.

I have to say, I'm skeptical about the gastro's ability to understand ED sufferers.  "Gastro said one of the slowest digestion she has ever seen."  Well, duh, that's what happens with restictive ED.  So maybe you are right that it is esophagus irritation rather than allergies, especially since she never had trouble with food groups pre-AN.  

Please feel free to post as much as you like and ask as many questions as you have.  That's why we're here. xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
EC_Mom

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Reply with quote  #5 
My d had tons of stomach pain and 'early satiety', i.e. she didn't want to eat more and felt full! But that's ok, she can eat even if she feels full. And she has to. I agree that I'm skeptical about the cause of the esophagus problems, but I'm not a doctor. What about an allergist?
martican

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Reply with quote  #6 
Thank you for warm welcome [smile] 
scaredmom - we are in Windsor. Teen health clinic's approach pretty much aligns with what I read here. EoE dx messed up the process bc even therapist had a hard time to determine how far to push if there was a medical issue. In Jan 2017, I asked to be sent to London and Toronto, but Toronto said NO - go to London, and London was reluctant bc of her EoE dx and we had to wait for another scope to prove them that it was under control. The assessment in London finally happened last week (THEY told me about this forum), and they assured us we are on the right track, and if we struggle within next 6 mos to get to 118-120 lbs they would hospitalize her. They do not accomodate dietary restrictions in their program. 
Canola oil! Why didn't I think of it - I was trying coconut oil but it goes solid in the smoothies, flaxseed oil/olive oils have flavors ... thanks! I do coconut ice cream (non-dairy) smoothie for her so I will sneak it in. 
Torie - we are doing 3 meal/3 snacks already and with her pace of eating she eats every 2-2.5 hrs. I will explore the recipe book someone mentioned to find more calorie dense food, plus canola oil everything possible. EoE dx - I know - I feel I am the only one who thinks it is related to her AN in the team of doctors we are involved in. I even had a second opinion in London on her results. I guess we will find out one day. We just have to go forward. 
therese534

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Reply with quote  #7 
Hi Martican,I can relate to your daughter having a medical diagnosis underpinning the restrictive eating. I know about EoE as my daughter has had three endoscopies, and the last two have discovered eosinophils in her esophagus but not to the extent necessary to qualify for full blown EoE. She has GERD and lactose intolerance and severe osteopenia from all the years of not eating enough since childhood. What is key is the question: does your daughter think she is too fat? Does she WANT to gain weight, but can't eat enough due to physical challenges? Is she afraid of high calorie foods?

My daughter has none of this distorted thinking about food and calories, she just finds eating enough too difficult physically. She gets full very fast and is often nauseous. EoE is a serious diagnosis that can't be ignored. There is no other explanation for it except an immune dysfunction in body,a highly allergic reaction in the esophagus. I would try to get in touch with support groups for families with EoE, because you can't treat your daughter like any other kid who doesn't have this serious medical challenge. When you say she purges, are you sure this is because she's afraid of getting fat or afraid of calories? Kids with EoE are always vomiting. They can't help it. Does your daughter tell you why she feels the need to vomit? EoE is relatively rare and it can't be ignored. It is real and endoscopy results can't be faked. Perhaps families dealing with EoE would have information on how they keep their kids from chronic Malnutrition.

I wish you the best in trying to help your child.


Sotired

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Reply with quote  #8 
Hi,just in terms of meat-definitely keep it to small amounts of white meat at the moment,chicken and fish if there is gastric trouble as red meat can cause vomiting and severe pain.
I hope things start getting better for you soon.

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Mamaroo

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Reply with quote  #9 
Hi Martican

Sorry you had to find your way here. Hopefully we can give you some good advice and plenty of encouragement. In Julia Ross's book "The diet cure" she gives some suggestions for gut recovery after dieting. To heal the digestive track she suggests drinking aloe vera juice. My d use to love drinking that during our regular hospital visits. She further suggests to eat soft or pureed food and also to take digestive enzymes (has it started to work for you?). That helps with the 'too full' feeling. If that doesn't work, she recommends propulsid, which you would need a prescription.

Does your d take additional vitamins. My d takes the following: a good multi vitamin, calcium, omega 3 oil, zinc, probiotic and then some over the counter anti- anxiety meds (which I also take [smile]).

My d also loves animals and wanted to be vegan, however I pointed out that she was already eating eggs and cheese and our care coordinator at our treatment centre said that if she ate meat before, she should eat it again. She now eats every type of meat / fish / chicken / pork and still loves animals. Even if you are vegetarian, plenty of animals had to die to produce fruit and vegetables. Birds are routine killed and although insects and other bugs don't fall under cuddly animals, they also perish in the name of food production. It's better to accept that it is part of the circle of life and try to care for animals in another way, such as volunteering at a shelter.

Best of luck and please keep us updated

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D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for a year and WR at age 11 in March 2017. Challenging fear foods and behaviours now.
martican

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Reply with quote  #10 
Therese, thank you for sharing your experience! Despite my gut feeling about EoE, I am not taking the dx lightly and I follow GI doctor's advice to the T. So far, other scope turned our with zero eosinophils. Now, she is allowed to eat dairy but she is still on steroid gel, next scope in 3 months. Another option was to take her off steroid and stay off dairy and soy but I desperately needed more cooking variations and calories. I am hoping she will be wr by next scope so we can experiment with eliminating dairy/soy again while being off steroids as well, to confirm none of the other 4 allergens are causing EoE before we move to soy and then dairy with no steroids. She was also taken off Lanzoprazole, and she is doing fine without it.
My D was purging bc she couldn't handle the feeling of fullness. She said she felt much better after. She did stop with purging (we had another round after that but that was short lived). She doesn't care about calories at this point, she knows how much she needs to get better, and when shopping with me she goes for snacks with highest calories. Also, since my original post, her digestion did improve. I did try digestive enzymes and they didn't make any difference for her discomfort, only digestion which I am glad, at least something. I also tried ginger, no help. 
Her abdominal discomfort ... I noticed when she is doing something she loves, playing with her cat, or drawing, when she is so relaxed, she has no discomfort, it can last even an hour. I am thinking it is more anxiety related. She can eat 3000 cals a day which provides at least 1 lb a week weight gain. She is at 115.5 lbs now (5'3").
Fish and chicken is part of her diet now, although she does feel guilty about eating chicken. She told me she doesn't mind eating anything I give her, only that chicken is very hard for her. She eats it only in breaded and fried form.
She is worried she will end up overweighed. She doesn't like the way her body looks, she compares her thighs to mine, and says she looks chubby and she will not eat anymore as much (this happens at some shower times at night when she is tired). In the morning, she is okay with our routine. 
Mamaroo - I will try that analogy about animals being killed even for fruits and veggies. Very good point!  As to vitamins, she is on multivits, probiotics, omega 3, magnesium-calcium mix. She does volunteer at wildlife rehab, now once a week during summer. I keep telling her that she can't save any animal if she doesn't save herself first. Her response is that she would sacrifice herself over a cow. (I I am not even making her eat beef - we do eat it rarely anyway).  We had so many conversations about his, even with therapist and it's like hitting a wall. I think this is her ASD kicking in with her black and white theories. 

So, with AN thinking still present, we have good days and we have bad days. Work in progress. Thank you for following up [smile] 
martican

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Reply with quote  #11 
Mamaroo - also, she is on anxiety meds and mood stabilizers. ... I, myself, just asked my doc for emergency anxiety meds for really tough days. 
Mamaroo

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Reply with quote  #12 
Hi Martican
Thanks for the update and I'm glad you got some support for yourself. I was just thinking, that maybe wait until her state of mind (a while after wr) is better before telling her about the birds and the fruit. I don't want her to not eat fruit and vegetables anymore.

I'm happy to hear she volunteers at a wildlife rehab, that is a nice distraction.

Sending best wishes and tons of hugs!


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D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for a year and WR at age 11 in March 2017. Challenging fear foods and behaviours now.
martican

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I was thinking about it too Mamaroo, lol. Will do. I  read the whole thread about the importance of animal protein and if she was meat eater before AN, she should be eating it after AN as well. She never liked fish, ever in her life, but now she eats it because she has to. I understand that her point of view changed on animal treatments but I just want her wr with the same habits as before.
mjkz

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Reply with quote  #14 
Martican, I don't know if this is possible or not for you but my daughter was vegan and then vegetarian for a long time.  I got free range meats which really helped her eat meat again.  She was willing to eat meat from animals she knew had a happy life so to speak.

My daughter too had anxiety related digestive problems and discomfort.  Distraction was a key there.  Also it is not unusual for people to feel better after purging.  Purging releases neurotransmitters that make people calmer and feel more settled.  Some even get a feeling of euphoria out of it.  It is a very hard habit to break.

Glad to hear the EoE is under control.  My daughter is lactose intolerant and lost her gallbladder at a very young age to stones (how many 13 year olds do you know who have gallstones??!) so fats have to be rationed too.  The dietary restrictions are so hard when they are regaining.  It sounds like you have a solid plan though!!!
martican

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Reply with quote  #15 
Hi mjkz. That is crazy about your poor D's gallbladder. At such young age, they go through more than some adults. That must have taken lots of adjustments for you and the diet while dealing with AN. Especially with fats. I was very frustrated and felt like running in circles because of the need to gain weight while catering to EoE's opposite needs.  it took a while to set the plan that treatment of AN comes first, while keeping EoE under control. Once wr, we can focus on finding the culprit of EoE, if there is one.
It was a long process for my d to gain her digestion process; a year ago she wasn't physically able to handle cream in her smoothies or fried food, and now it is no problem.GI Dr. told us, once EoE was under control, that my d had no physical reason to spit out saliva or purge or have this abdominal discomfort (she thought that maybe she swallows too much gas unknowingly), so it all came down to AN. Spitting and purging got eliminated since then.

Interesting you mentioned about free range animals ... just yesterday we went to the farmer's market that takes place every Saturday morning (I have never been and lived in Windsor for 11 years!) and they were selling exactly this type of meat plus other farm products. Once she heard that those animals have a good life, and are taken care of in a gentle manner, she agreed to try their chicken. I was beyond happy inside while playing it cool outside. [smile] Will cook the chicken tomorrow. 
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