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.

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Dawn75
Hello, I'm new to the forum and was looking for some advice. My son is 26 and we've been dealing with low weight issues for awhile. He has always been on the slender side since childhood and has always been into fitness and being active, When he was 19 he was diagnosed with a severe form of arthritis. Over the years he was able to get back to moving around as well as before with all the advancements in medicine. He was doing quite well. Last summer towards the end of graduate school, he developed slightly higher blood pressure. After that I started hearing him talk about how he cleaned up his eating and how it helped. By fall, he started looking alarmingly more thinner. I had approached it several times with him but he would always shrug it off. He ended up needing more extensive testing because around that time the arthritis meds he was on quit working as well so we needed to switch them. GI tract looked fine but the doctor was concerned about his low weight and sent him to a nutritionist. He only went one visit to her, stating that she was not helpful and he would gain weight on his own. All the months since then, all of our discussions, visits (he lives 2 hrs away) and phone calls always end up centering on this issue. He has gained a few pounds since that procedure last fall, but seems to be at a plateau for awhile now. He knows he needs to gain weight, and feels like it became so low with anxiety and over exercise to reduce stress from school. He refuses to approach the idea of having an eating disorder and getting any kind of professional help. He is finished with graduate school, is now a mid level health practitioner and about to start his career in a few weeks. He has a long time girlfriend who has been concerned with his weight but feels like he is making progress. He has actually finally agreed to see a mental health counselor and has an appointment next week. This took months to get him to agree to, I am sad that it will be skyped now (because of all the corona concerns) since I was hoping the counselor would take one look at him and know he had weight issues to deal with. He is under the care of his long time rheumatologist, who he admits has had some concerns on his weight but he never quite discloses the full extent of the concern. My question is do I keep pushing full force to try to make him see a nutritionist? Or should I just keep it as supportive as I can? 
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Torie
Hello, and welcome.  So sorry you have had the need to join us here.

Please be aware that many if not most nutritionists are so accustomed to focusing on obesity issues that they can often do more harm than good with our AN kids.  And anyone can call him- or herself a nutritionist - unlike a dietitian, who is registered after completing an educational program.  Still, many here have found that dietitians (and also doctors) are not necessarily up to date with the latest research and thinking about eating disorders.  So it might be prudent to speak with the prospective health provider first yourself, it that is possible.

Much better would be if someone could convince him to be evaluated by a reputable eating disorder center.  I realize that is *much* easier said than done.  Perhaps his girlfriend could be enlisted to help advocate for this?

If you think there is a chance of persuading him to contact an ED specialist, we are happy to help you sort through how to find one.

Please feel free to ask all the questions you like. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Foodsupport_AUS
Welcome to the forum, it sounds like your son has been quite ill with eating issues, weight and exercise for some time along with his other medical issues. Unfortunately those with eating disorders commonly deny they have an issue and challenges to this by doctors or nutritionists are commonly pushed aside by the person with the problem. 
I wonder whether your son has seen a doctor with a lot of experience in eating disorders.  These sorts of clinicians are few and far between.Despite him denying this is a problem it sounds like there is a strong possibility of medical compromise including bone and heart complications. It may be easier to get him to see this sort of person rather than a psychologist or psychiatrist with ED experience. This would be a way of trying to establish the state of his health over and above his other medical issues. 

There person who I am most familiar with this sort of knowledge in the US would be Jennifer Gaudiani. She is based in Colorado but  I understand is generally pretty approachable to help point people in the right direction. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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Torie
Despite him denying this is a problem it sounds like there is a strong possibility of medical compromise including bone and heart complications. It may be easier to get him to see this sort of person rather than a psychologist or psychiatrist with ED experience.  

That is a good point - it is important to evaluate bone and heart health.  And although AN sufferers generally exhibit little or no concern about most health issues, many of them DO care about their bones so he may be more amenable to investigating bone density than psych / mental symptoms.  xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Dawn75
Thank you so much guys for replying, it is such a comfort speaking with someone that has been through this also. I will check into a ED specialist around his area. I had contacted NEDA earlier this week and they were going to send me some info but I hadn't heard from them so I will follow up. I did not realize the limitations of a  nutritionist but as always I am reminded about what a unique situation this is and how much I don't know. I do try to always incorporate all the medical damage that he is doing to his body (I am medical too, and have dealt with some malnourished pts but these were due to underlying medical issues). It is very scary to have a pt with the same BMI and read everything in their chart and what it is doing to them. He does feel very comfortable going to doctors so maybe I can suggest a bone scan. I keep hoping some term or condition will shock him into realizing he needs help. I think part of the issue when he sees these doctors is that he is well spoken and very agreeable and he actually told one of them on a recent visit that he is well aware that he is low weight and is working on it. I think this appeases them but who knows? I'm not at the visits and can only piece together what he tells me. And I've come to realize how deceptive a person in this condition can be, purposeful or not. Thank you so much for all of information. 
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Torie
Do you have an idea how low his weight is?

It's a real problem that so many of the sufferers are very articulate and persuasive and thus manage to convince their health providers to back off.  We see that over and over and over.

As you probably know, his docs cannot tell you anything about him without his permission, but they are fully allowed to listen to whatever you tell them.

Take care. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Dawn75
Hello Torie, the highest his weight has ever been has been 132 lbs. He is 5'10. He always ate well, and although he liked to be active, it was always just within reasonable limits. The 132 was actually after he finished his bachelor's and was home with us for his year before graduate school. Before this he actually was around 128 lbs all during last couple of years of high school, and that was the highest he ever weighed. He was always slender but looked healthy and always had normal behaviors. When he dropped all that weight before his scope, he tried to say he was 114. I was horrified at that and then begun the real battle of struggling to get him to see someone or even see that his behavior and weight wasn't normal. That was last fall. Then I noticed that he might have gained a little and he said he had but then he tried to tell me it was about 10 lbs which I knew it couldn't be. He had actually had a 6 month period from seeing his rheumatologist , and then had went for a follow up. By this time I had stopped going to be appointments with him, last one was when he was 23. He finally wanted his privacy and his condition was under control pretty well so I relented. From the little he would tell me she was pretty upset with his weight loss. She referred him to a hematologist and GI doc. Long story short, due to his low weight and the massive loading doses of new biologic medicine for his arthritis, his liver was hit a little and white blood cell count was extremely low. This resulted in him getting taken off and repeating labs. Last labs were finally back to normal but with all of the coronavirus outbreaks and I suspect because she was still upset about his weight, she is asking him to hold off another month, then repeat labs. Now when he saw the rheumatologist and received the first labs he finally was scared enough to tell me how much he really weighed which was 107 lbs. I felt like I had fallen down a mine shaft and couldn't catch my breath. The worst of it was I knew he was lower during the scope and he did tell me 100 lbs. It was all I could do to respond calmly because this was the first time he had actually told me the truth . He has stayed about at the 107 mark since even though he tries to say he is trying to gain weight and I can't expect him to magically be "plump" (his words). I have tried to convince him then and for awhile that he has all the signs of an eating disorder. He states he does not because he knows he looks like "shit" and wants to gain weight. He tries to state that he knows what anorexia is from school and he does not not have it and I have to just calm down. And his Dad, and his sister. All our visits and calls consist of me trying to balance acting normal and having normal conversations, to including verbalizing how concerned we are with weight and please realize that you need help to succeed at this. It is tough when you see that he is able to finish school, maintain a good relationship with a very decent young lady, pay bills, upkeep his own household, and be active in his church but won't accept help. The only good changes I have seen this last couple of months is that he does look a tiny bit heavier, he admits he was eating too clean and was exercising too heavily. He did have his first appointment this evening with a psychiatrist and is supposed to be following up every other week. This is for anxiety. And now we have shelter in place, exposure to a new virus and him starting a new job in an ER next week which was about the only job he could find in an area oversaturated with the profession he is in. Stay safe and take care also.





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Torie
Hi Dawn, It is always challenging trying to help our young adult children.  I wonder if he would accept suggestions for a provider who is available by Skype.  I am trying to remember the names of people who have helped forum members - I think Therese Waterhaus (?) is a dietitian who is at least sometimes available by Skype.  I know many here have been happy with her help.  You may wish to contact her to see if she thinks this would be a good fit.  Others may have additional suggestions if you think something like that might be a possibility.

It may be a difficult time to schedule a bone scan, but perhaps the reminder that this can be a problem will be motivating for him.  Would his girlfriend be amenable to cooking with more canola oil (rapeseed in UK) and butter do you think?  Can you encourage him (and his girlfriend, if appropriate) to eat more meals with you?

You are of course correct that he really needs to regain the weight he has lost.  I hope we are able to help you make some initial steps.

Thinking of you xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Dawn75
Thank you so much Torie, these are all excellent suggestions. I will suggest the bone scan this evening when we speak, I thought he had one scheduled at one time, but I might be thinking of something else. I agree, hopefully the suggestion will trigger something even if he is unable to get in, I'll also look further into hopefully him agreeing to see a dietitian by Skype. I quickly scanned the internet and saw Therese Waterhaus's listing along with some others. There are also some podcasts linked to them so I'll take a listen to them also. Thank you so much for your suggestions and for your thoughts. Take care.
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Enn
Hi there, just a caution about doing a bone mineral density test (BMD) in a person with Ankylosis spondylitis as you mention in your profile, the test can be difficult  to interpret. He is at higher risk of osteoporosis due to his inflammatory arthritis. The illness itself due to calcification of ligaments can sometimes falsely increase the bone density and make it look more normal than it is.
You may already be aware of that as you are medical as well. 
Here is an article,  although done in older patients so be careful it may not translate well to a young man.
Here in Canada rheumatologists, and endocrinologists deal with osteoporosis and his rheumatologist would be the best person to help in that regard. Bone health is very important for all his issues. All the best
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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Enn
Oops I forgot to post it!
https://arthritis-research.biomedcentral.com/articles/10.1186/s13075-017-1480-0
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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MKR
You are thorough as ever and always bring the spot-on resources, @Enn!

This explains the risks to the bones, I like being armed with facts.
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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atdt31_US
Skype or remote providers I have read on here, esp for older sufferers:

1.  Jennifer Gaudiani
2.  Tabitha Farrar

I am sure you know this and have looked into it, with both of you being in healthcare ... but one autoimmune issue often suggests another .... have they checked celiac?
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.  UPDATE:  July 2019 diagnosed with PANS. Dr. said likely started first PANS episode at less than 1 or 2 years of age.  On long-term daily prophylactic antibiotics. BMI now about 16 after period of intense refeeding prior to PANS dx,  followed by stagnation as we sort out what is next. FWIW ED-D is a fraternal twin and we have no other kids.
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Dawn75
Thank you so much for the information. He is not willing to Skype a provider at this time but I will keep this information at hand and hopefully he will be willing soon. We were lucky to have a very good rheumatologist who looked into celiac disease right at the start because of low hemoglobin issues. This was years before all the eating issues. He was cleared of that but was found later to have a practically non-existent haptoglobin level which they are suspecting is probably autoimmune causing also. Supplemental iron had never helped.  We have never been able to find another reason why after work ups with GI docs, and hemoc doctors. Because his anemia had been non symptomatic they've been just waiting and watching. I'm going to read the resources available on here for tips too and just keep communicating and trying to convince him to not go it alone. Thank you so much again for the help, and I hope everyone is keeping well and healthy. Take care.
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mommiful
Dawn75 wrote:
I have tried to convince him then and for awhile that he has all the signs of an eating disorder. He states he does not because he knows he looks like "shit" and wants to gain weight. He tries to state that he knows what anorexia is from school and he does not not have it and I have to just calm down.


It sounds like he might have been taught about anorexia based on the diagnostic criteria from the DSM-4, which included "Intense fear of gaining weight or becoming fat, even though underweight." In the DSM-5, that has been changed to "Intense fear of gaining weight or of becoming fat, or persistent behaviour that interferes with weight gain, even though at a significantly low weight." The EDE-Q, a tool widely used for ED assessments, frames almost all of its questions in ways that would not capture cases in which the individual did not experience fear of weight gain, but exhibited behavior consistent with fear of weight gain. 

My daughter also has consistently said she wants to gain weight and is disgusted by how underweight she is, while not denying that she has AN and needs to gain weight. Unfortunately, knowing that she needs to gain weight has not made it any easier for her to do so. 



 



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mommiful
Dawn75 wrote:
Thank you so much for the information. He is not willing to Skype a provider at this time but I will keep this information at hand and hopefully he will be willing soon.


If your son is not open to meeting via Skype, those providers have some other resources:

Dr. Gaudiani has a book, Sick Enough: A Guide to the Medical Complications of Eating Disorders, written for medical professionals as well as patients and carers. You might find it helpful. 

Tabitha Farrar is a recovery coach who has recovered from AN and is respected on this forum and among treatment professionals. She has a YouTube channel and several books. These can be wonderful resources for individuals with AN and their families. 
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Dawn75
Thank you so much for the information on the resources, I appreciate it so much! 
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