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NY Times article--do you think this is ED?Open in a New Window

Hi all,

I thought this would interest some folks here--it's about a teen with severe ongoing gastrointestinal problems (vomits up whatever she eats or drinks).

Might this be ED?

The end of the article asks readers to contribute what they think the diagnosis might be.

Here's a link, and the whole article is posted below: https://www.nytimes.com/interactive/2018/06/20/magazine/netflix-diagnosis-series-lashay.html

YP

***

Doctors Don’t Know Why This
Teenager Can’t Keep Down
Food and Drink. Can You Help?

 
 

“I don’t know where to go from here,” the doctor said to the 14-year-old girl, Lashay, and her anxious mother. The girl had been in the Intermountain Primary Children’s Hospital in Salt Lake City for nearly a week. Her pediatrician had admitted her there because for the past 2 months the girl had been unable to keep anything she ate or drank in her system. Just about any food or drink, no matter what it was, seemed to come right back minutes or sometimes hours after being consumed. She’d lost nearly 10 pounds. It was strange and terrifying. She had no nausea, no abdominal pain, no diarrhea. She did have a mild headache, and her eyes felt a little sensitive to light. Her mother was worried that her child wasn’t getting enough into her system to keep her alive.

 

A Strange Event on Vacation

Everything seemed to start just after a family vacation in Costa Rica over Thanksgiving. Lashay and her parents, along with her sister, spent the first day hiking in the beachside forest of Manuel Antonio National Park. They were an active family and spent all their vacations engaged in sports and other activities. Suddenly, a large raccoon ran up the path and threw itself on Lashay’s foot. She screamed, and the raccoon bolted up and took off. The girl’s foot wasn’t bleeding, but her skin was broken by what looked like a scratch or a scrape. There was no puncture wound. They cleaned the area with alcohol and turned their attention to the frightened girl. But she was soon enjoying the rest of their vacation — swimming in the beautiful blue waters of the rivers and the Pacific, white-water rafting, ziplining down forested hills and, of course, more hiking.

The raccoon attack seemed to fade into the background, but it didn’t stay there. When Lashay and her family got home to their small suburban Utah town, both she and her mom came down with some kind of gastrointestinal problem. The mother had diarrhea and a headache. Lashay had a headache, too, along with repeated episodes of vomiting. Over the next several days, the mother got better, but Lashay did not. Suddenly, her mother remembered the raccoon scratch. Why would this nocturnal animal attack her daughter in broad daylight? A single word came to mind: rabies.

She took Lashay to see her pediatrician, who shared her concerns. He instructed her to take the girl to the emergency department. The doctors there would know if Lashay needed the vaccine to prevent rabies.

The doctors in the emergency department at Primary Children’s Hospital agreed that the patient did need shots. They attributed her vomiting to a bug she may have picked up while traveling. They sent off a basic blood test to look for an infection or another cause for her symptoms. When the tests came back normal, the doctors gave her the first shots and sent her home with instructions to come back if her condition worsened. (You can see a note from the first E.D. visit here.)

A Second Visit to the Emergency Department

A week later, Lashay was back in the E.D., not because she was worse, but because she wasn’t any better. She continued to vomit — often several times a day after eating or drinking just about anything. She had no nausea or diarrhea. Indeed she had been constipated for most of the past weeks. Other than the persistent vomiting, she had no symptoms of any illness. Her exam was likewise quite benign.

One concern with vomiting without nausea is that it could be caused by increased pressure in the brain. The E.D. doctor performed a careful neurological exam. It was completely normal. Her abdomen wasn’t tender or distended. She was given some fluids intravenously, and blood was taken. Again, it was all completely normal. So why was she still vomiting? her mother asked. Hard to say, the doctor told her. Could be gastroparesis (a slowing down of the stomach) caused by the virus that she and her mother had when they first got home from vacation. This can last for weeks but should resolve on its own. They gave Lashay some Zofran, an anti-nausea drug, and encouraged her to drink more and follow up with her primary-care doctor. (You can see the note from the second E.D. visit here.)

Lashay’s pediatrician sent her to a neurologist, who also did a careful exam and got an M.R.I. — both were completely normal. The neurologist sent her to an infectious-disease specialist, who sent off blood, stool and urine to look for bugs that could cause this strange and persistent vomiting. It wasn’t giardia, a freshwater parasite that usually causes diarrhea; nor could she find evidence of other parasitic infections. She tested her for helicobacter pylori, a common cause of gastritis and vomiting — negative. It wasn’t celiac disease. She wasn’t pregnant. Her liver, pancreas and kidneys were normal. (You can see the reports of those first outpatient studies here.)

Still Sick and Tired

Throughout all of these visits and tests, Lashay continued to vomit several times a day. The infectious-disease specialist was worried that the persistent vomiting was making the girl dehydrated, and she sent her back to Primary Children’s Hospital to expedite the rest of the work-up.

Lashay spent four days in the hospital and got a thorough and thoughtful evaluation. She was seen by a slew of doctors: the infectious-disease specialist who admitted her, a second neurologist, a gastroenterologist and a psychologist. In addition, because Lashay had started to feel dizzy when she stood up, she was seen by a physical therapist as well. The infectious-disease specialist again sent blood and stool to look for additional infections. Again, the results were all normal. A spinal tap was performed and fluid taken; it was normal. The gastroenterologist performed an endoscopy: There were a few white blood cells found at the base of the esophagus — not uncommon in the setting of chronic reflux — but otherwise normal.

 

By the end of the fourth day, the doctors had found nothing. The pediatric gastroenterologist had made a practice of going each evening to check up on Lashay and review the results of the studies with her and her mom. On their fourth night in the hospital, he sat, as usual, on the bed next to Lashay. But his normally cheerful demeanor was gone. He seemed quieter. He went over Lashay’s time in the hospital and the work-up that had been done so far. None of the tests done by any of the subspecialists had shown anything wrong. He just wasn’t sure what else they could do for the young woman.

Lashay’s mother listened in distress. She felt as if the doctor was giving up on them. If there was nothing else to be done, she wanted to just take her daughter home, she told him. (You can see some of the notes from this first hospital stay here.)

Seeking a Second Opinion

Back at home, Lashay was vomiting 10 to 15 times a day. Her mother decided to take her to the other hospital system in Salt Lake City, the University of Utah Health Medical Center, for a second opinion. The care provider there sent Lashay back to Intermountain Primary Children’s Hospital.

A new team of doctors focused on disorders caused by abnormalities in the GI tract rather than any ongoing pathological process. Most reasonable pathology, they suggested, had been ruled out by the extensive testing done during her first hospital stay and before.

Functional disorders can be triggered by infections or other types of pathology but continue long after the initial event has resolved. The team first thought she might have what is known as cyclic vomiting syndrome (C.V.S.). This is an unusual disorder seen primarily in children when episodes of nausea and vomiting alternate with periods of good health. The episodes of vomiting are often triggered by physical or emotional stressors and have a stereotyped presentation, so that while different children with the disorder might have different ways of being sick, each time an individual child gets sick, the episodes are very similar. The disorder is often associated with migraine headaches. Most children with C.V.S. have a family history of migraines, and up to 75 percent will develop migraines themselves by age 18. C.V.S. is often treated the way migraines are: with daily medications either to prevent the headaches, or those taken once the headache has started, to end it quickly.

 

The pediatric gastroenterologist agreed that the girl had a functional illness, but he wasn’t convinced it was C.V.S. He observed that the patient did not exhibit the violent retching of vomiting, but instead had a rather effortless and painless regurgitation of food and liquids from the stomach into her mouth. This suggested that Lashay may have something known as rumination syndrome. In this disorder, the muscles in the stomach and esophagus somehow run backward, and recently consumed food or drink travel out of the stomach, up the esophagus and into the mouth. It is either then spit out or swallowed. It is not clear what triggers this phenomenon, but it has been associated with both psychological stimuli, like mood disorders, or physical stimuli, like constipation.

Treatment for rumination syndrome is primarily behavioral. Patients are taught how to identify the abnormal muscle contractions and use deep breathing exercises to inhibit the abnormal backflow. If that doesn’t work, smooth muscle relaxant medications can be used to inhibit the reverse movements. (A test done a few months later, measuring the squeeze of the stomach muscles, seemed to confirm this diagnosis.)

Lashay agreed to try to learn how to use relaxation behaviors to stop the regurgitation. At first it seemed to help a little. She and her family were told that it could take weeks, possibly months for her to recover. And even after recovery, the symptoms can recur, even years later. (You can see the notes from the second hospital stay here.)

Pursuing More Answers

After a few days, Lashay was sent home with a medicine to make her food move a little more quickly though her stomach and GI tract and instructions on how to continue to work on the problem. Although Lashay worked with specialists to try to use relaxation techniques to help her keep her food down, she didn’t notice much of a difference, and after a few weeks she stopped using the technique.

Lashay’s mother didn’t fully accept the diagnosis of rumination and kept searching for doctors who could figure out why her daughter couldn’t keep anything down. She took her daughter regularly to get intravenous fluids when she felt that her daughter was dehydrated. The IV fluids were particularly effective in treating the headaches, which were now almost constant. They also helped with her lightheadedness, which had been rare but was now something she had most of the time. A new gastroenterologist tried multiple courses of Flagyl, an antibiotic often used to treat intestinal infections, and that seemed to help. But the benefit disappeared when the antibiotic was stopped, which led that doctor to conclude that her symptoms were probably not caused by an infection.

Finally, Lashay was referred to a doctor who specializes in a disorder known as Postural Orthostatic Tachycardia syndrome or POTS. This is a disorder of the autonomic nervous system — the system in charge of maintaining body functions over which we have little conscious control, like heart rate, blood pressure and digestion.

A common pathological feature of POTS is difficulty getting blood to the brain when going from lying down to standing up. Normally when you stand up, the nervous system immediately implements a series of changes to get blood from the lower body, where it is pulled by gravity, up to the head where it is needed. To do this, nerves tell blood vessels in the legs to squeeze, sending blood upward. At the same time, other nerves tell the heart to beat a little faster to distribute the arriving blood more quickly. These changes are immediate and usually work so quickly that they are not even noticed. But in those with POTS, this system doesn’t work well; it takes blood a long time to get to the brain, and the patient feels lightheaded and often nauseated and can even faint.

This doctor checked Lashay’s blood pressure and heart rate when she was lying down and then after she stood up. In most people, the heart rate might increase and blood pressure might fall, initially but will quickly recover. If someone is dehydrated, her blood pressure will go down, and the heart can race for up to 15 minutes. But in someone with POTS, standing after lying down will cause the heart rate to go up, but the blood pressure will stay the same. In Lashay’s case, the heart rate went up and the blood pressure dropped. The doctor thought she was probably dehydrated and gave her some intravenous fluids. He repeated the test. Again when she stood up, her heart raced and her blood pressure plummeted. Despite that, the doctor thought it was likely that the patient did in fact have POTS.

The treatment for POTS is directed at maintaining blood pressure when standing. To do that, patients are often prescribed a high-salt diet or salt tablets and compression stockings. Exercise is also an important part of treatment. Simply contracting the muscles of the legs will help send blood back from the periphery to the heart and brain. Lashay tried all these treatments, for nearly a year. None seemed to do much good. The only thing that helped was the intravenous fluids she still got regularly. (You can see the initial note from the POTS doctor and the testing for POTS here.)

Lashay saw another doctor in that practice who diagnosed her with something called Mast Cell Activation Syndrome (M.C.A.S.). This is a condition in which mast cells, which control allergic reactions, fire off inappropriately, causing hives and flushing and a drop in blood pressure and sometimes nausea, vomiting and POTS. She was started on strong antihistamines and medications often used to treat asthma — another disease of inappropriate mast cell activation. None of those medications worked, either. (You can see the note from the M.C.A.S. doctor here.)

Lashay is now 17. She’s been going through this for nearly three years. At this point she takes no medicines except a painkiller when her headaches get too severe. She eats small meals and has learned to swallow the food that she regurgitates — a trick that has helped her stop losing weight. She still needs intravenous fluids three or four times a week. She’s trying to get out of bed and exercise at least every couple of days. But she has pains in her neck and back that make any movement difficult. She’s not sure what she has or what to do next.

What do you think is going on here? Do you recognize this condition? Could this be cyclic vomiting or ruminations syndrome? Could it be some type of atypical POTS? Or is it something else altogether? What should Lashay and her doctors look at next?

Enter your comments below, and briefly describe your thinking; how a diagnosis is made is often as revealing as the diagnosis itself. All answers will be reviewed, and the most promising diagnoses will be shared with the patient and her primary-care physician.

I’ll post an update in the coming days.

Category:

'Around the Dinner Table' Online Forum for Parents and Carers

 

10 DAYS TO GO TILL JULY 1 PLEASE READOpen in a New Window

In case you have missed the pinned post.

From  JULY 1 you will no longer be able to log in at FEAST-ed.org to go to the forum. From that date you will need to go to Aroundthedinnertable.org to log in to the forum.

This is part of us getting ready for our new website.

The first time you log in you will need to refresh your password. You will continue to use your username to log in as usual. 

We realise these changes will be confusing for some initially and the moderators will be around or contactable via the "Contact a moderator" link to help you sort things out. 

Category:

'Around the Dinner Table' Online Forum for Parents and Carers

 

ground hog day in our house.Open in a New Window

I have not been posting for awhile my now 16year old D is still not recovered albeit we have tried numerous therapies, CAMHs were unhelpful and discharged us as making no headway. She recently admitted she had been purging after her lunch and dinner but now with full supervision has stopped that went on from Nov to March post Camhs, we are attending CBT and  she is eating all of her meals plus fortisips after main meal, I weigh her blind forthnightly but she remains 40 to 41 kgs and has not ever gone above this, her mood is low and anxious about not developing never had menses and breast minimal.
I am beyond worry and think that if she doesn't gain soon we have lost the boat with her, already last year told she has osteoporosis, in patient is key but she is not "bad " enough to be admitted now as she is actually complaint with meals, she says we are not supportive of her I believe this is becaouse when our back is turned she is doing 40 situps or such like.

A.

Category:

'Around the Dinner Table' Online Forum for Parents and Carers

 

Dealing with outburstsOpen in a New Window

Hello all! Things have been going okay with my son. He was recently discharged from his mental health IOP, and will be doing out patient after we return from our family vacation.

My one concern is, the immense outbursts. My son is doing well overall, maintaining around 50-60th percentile and doing well on the depression/anxiety side of things. However, I feel as if he has developed a sort of “PTSD” from our past involving FBT. He gets frequent nightmares nowadays, describing fears of losing control of his life and being locked up forever.

My fear is how out of control he can get when he is provoked. The slightest bit of him feeling controlled and, he explodes. He is known for physical violence towards himself and others. I recall the first time we were doing FBT my jaw was almost dislocated and my head was ringing after a brutal punch. Thankfully, nothing of the like has occurred in the past year. Nowadays, he mainly takes it out on himself (ugh) if a situation arises. However, there are also suicidal and even homicidal threats/thoughts that occurred in the past.

The most recent outburst occurred around a week ago, which prompted me to ask this question. No physical violence (to self or others) nor threats were involved (yay!). However, scared me that it’d end up like it did in the past. My question is, do you have any advice for coping skills/therapeutic strategies to deal with anger. From my observation, DBT has been a HUGE helper and has brought us down from 10 to 2. However, I would like to bring that score down to even more if possible.

Again, I apologize for my incredibly long posts, but I prefer to give out as much information and background as possible. Thank you all!

Category:

'Around the Dinner Table' Online Forum for Parents and Carers

 

medicationOpen in a New Window

Hi all,

We are seeing a psychiatrist for the first time since diagnosis of RAN. My RAN son is in remission from his ED but has anxiety that wears him out and makes it hard for him to tell if he is hungry or anxious. Can you tell me if you child is on medication for anxiety, which one and if it has worked?

Psychiatrist wont do genetic testing (yet) and we are very limited to seeing a psychiatrist who has an opening. My son is 20 and has only been on Zyprexa for the first 18 months of recovery. 
 
thank you fellow warriors.

Category:

'Around the Dinner Table' Online Forum for Parents and Carers

 

Physical effects of AnxietyOpen in a New Window

I know many of us have kids with anxiety, and it often gets sky-high during refeeding and other challenging times in this ED journey.  I did a search on the forum and did not see any accounts of anyone reporting a kid with Myoclonic Jerks/Myoclonus.  

As I understand it, these are different than tics.  As I understand it, they can become worse with anxiety but I do not have an understanding (yet) if they can be caused solely by anxiety.  We are just beginning this part of life and have thus far only "spoken" with a doctor about it by email.  But thought if any of you have experienced this you could chime in.

D is having multiple Myoclonus events per day.  I captured several on video an the child psych said that is what they appear to be (as opposed to a tic).  

We will be trying to figure out if these put PANS/PANDAS back on the table and/or if other testing is needed and/or if changes to meds need to happen and/or if this is simply benign and/or if it is caused entirely by anxiety (seeing no other real signs of it) and/or if it is evidence of a newly emerging problem (epilepsy, etc).  

Category:

'Around the Dinner Table' Online Forum for Parents and Carers

 

Therapist in Indiana?Open in a New Window

Hello-
I wasn't able to find anything on the provider board, so I thought I'd put something out here to see if there were any ideas. Are there any therapists in the Indianapolis area to work with my daughter? We've had her see several different ones at the Charis center, and because that's the place that's "ruining her life", we can't find anyone she clicks with or trusts there. We still see the MD there, but she needs other support. She's not a talker, so we tried art therapy, but that didn't work either. She may be on the spectrum, so I want to pursue checking into that, but I don't know.

Thanks for any suggestions.

Category:

'Around the Dinner Table' Online Forum for Parents and Carers

 

For all of you DadsOpen in a New Window

For all of you Dads out there fighting the good fight, hoping you will remember today that things can get better and find the strength and channel your love to keep on going even when things seem impossibly difficult.......I found myself crying the other day when this song came on the radio.

 



warmly,

Kali


Category:

'Around the Dinner Table' Online Forum for Parents and Carers

 

EXCITING NEWS AND CHANGES ON AROUND THE DINNER TABLE. STARTS JULY 1Open in a New Window

Dear Around the Dinner Table,
I am sure many of you have noticed the under construction signs on the FEAST website lately.
We are in the process of creating a wonderful new website which should be easier to use for all.
As part of this process from JULY 1 you will no longer be able to log in at FEAST-ed.org to go to the forum. From that date you will need to go to Aroundthedinnertable.org to log in to the forum. . The first time you log in you will need to refresh your password. You will continue to use your username to log in as usual.
We realise these changes will be confusing for some initially and the moderators will be around or contactable via the "Contact a moderator" link to help you sort things out.
Foodsupport_AUS

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'Around the Dinner Table' Online Forum for Parents and Carers

 

Sign of things to come?Open in a New Window

D had her last exam yesterday and we were invited to celebrate at a restaurant with 3 other families...14 of us in total.
We had a lovely meal and the evening was great fun. At the end my D said she had a great evening and wanted to hang out again soon. She also got an invite to the upcoming school prom by one of the boys who I think has had his eye on her for sometime but she has thrown out negative vibes at anyone who wanted to get close. I asked her how she felt about being asked and she said ‘very special.’ 😊
Good times returning. I’m scared of jinxing us but I actually feel we might be ‘there’ as in recovered. The professionals have said some really encouraging stuff this week.
D said the last exam was hard as she has missed so many school days and self taught what eventually came up in questions. She seems to have accepted that the A* may not be the end result and seems comfortable with that. Having such perfectionist qualities, this has been encouraging to hear. I hope this is really my new D. She’s not the old D but more like a newer version with qualities I never thought I would see....sociable, imperfection is fine, she gets normal teenage ‘anger’ and frustrations now...she has her voice!!!! I’m so happy today 😊
Tonight she goes to her friends prom party as a bit of a warm up for her own next week. Last year there was no way she would consider going to her own prom so her friend invited her to hers and she accepted as she didn’t know anyone going. Now she’s going to two and looking forward to it!!

Category:

'Around the Dinner Table' Online Forum for Parents and Carers

 

IsolationOpen in a New Window

My 14d, diagnoses with anorexia 7 weeks ago. Using FBT her weight is up 12 lbs. she eats everything I give her, never fights about it. She continues to have anorexic thoughts. But she had completely cut off all contact with friends, if we run into anyone she only says ‘hi’ in a whisper, never engages anyone not even her father or sister. She will talk to me, but now less and less, and usually in a whisper. Does speak to therapist if asked direct question. Mostly I read about children fighting, yelling and refusing to eat. I read about kids still hanging with friends. My d only wants to be home, with me, watching tv. I know none of it is normal, will this get better?

Category:

'Around the Dinner Table' Online Forum for Parents and Carers

 

What advice should my AN d give to her friend who is struggling?Open in a New Window

My d has had a heart-to-heart with a friend about whom she is very concerned.  Her friend (also 15 years old) is, like so many of our AN kids, extremely bright, high-achieving in many areas, conscientious and prone to stress.  My d has commented recently that this lovely girl seems increasingly withdrawn, anxious, and rather than the usual lunch box of sandwiches, fruit etc, has started bringing only a handful of nuts to see her through the day.  

My d obviously does not want her friend to 'go down the same path' as she did but does not know what to say or do to help.  I must admit I'm also at a bit of a loss, remembering all the persuasion, arguments, pleas, and information we tried to no avail with our d before diagnosis and before we understood about anosognosia.

My d is sworn to secrecy, but if the friend is who I think it is, talking to her mum is not a feasible first step (they don't have a close relationship).  The school counsellor is also, unfortunately, not a likely first port of call.

Category:

'Around the Dinner Table' Online Forum for Parents and Carers

 

BMI Machine in GP SurgeryOpen in a New Window

The practice manager of our GP surgery has approached me for some advice for the literature they intend to put alongside a new BMI machine that they are about to get.  I think he's asked me cos he's knows I'd go off on one if a set of weighing scales with all the BMI bells and whistles suddenly appeared in the surgery!!  It's great that he's thinking of the ED families, and I get that he and his staff are caught between a rock and a hard place over how to reduce obesity within the community while being sensitive to those with EDs.  Here is the text of the e-mail that he sent me, which I thought was very tactfully put...

We recently had an Away Day for the team centred around the big health challenges we face. One of the most significant is that 60% of our adult patients are overweight. We also don’t have any weight data for 30% of adults. We do know that weight gains is driving a significant rise in diabetes (among other things). Research elsewhere has shown that promoting self-weighing prior to routine appointments can ease GPs/Nurses into a better discussion about healthy weight. We do have scales and a height measure already in the waiting room which get a fair bit of use but they require effort from the patient to use and there’s no direct feedback on how healthy the weight is in the context of the height – i.e. Body Mass Index.  I organised a demo here of a fancy machine that does all the hard work and provides a simple printout which patients could bring into a consultation. I tried it “blind” on members of the team and they all found it very easy to use so we’ve decided to go ahead and buy one.

 

What I’m hoping to do is to promote the new machine in the context of healthy weight. We know for a majority of our patients that means they should consider losing weight, but for some of course it’s the opposite. I’m thinking that just as we regularly monitor blood pressure we should be regularly monitoring weight. If I take Hazel to the vet for a checkup they always weigh her and I can see a graph of her weight over time but we don’t do that routinely and we should.

 

I’m conscious of the need to be tactful when it comes to promoting the new machine and our desire to start routinely collecting more weight information from patients. Naturally there are some patients who won’t want to be weighed and we respect that. Some may feel we’re “targeting fat people” and then we have to consider eating disorders and how our approach will impact them and their families. So prior to installing the machine I will need to work up some material to go with it for the nearby wall, TV screen, patient newsletter and handouts.

 

Anyway, I've attached the wording of the display that he plans to put alongside the new machine, and wondered if you guys have any comments/thoughts that I could feed back to him??

 

Many thanks! BMI Station.jpg 

Category:

'Around the Dinner Table' Online Forum for Parents and Carers

 

Adult with newly diagnosed eating disorderOpen in a New Window

Sorry...long post. As I see many of you have noted through reading posts, this eating disorder world is quite overwhelming. My sister is 30 years old and was "kind of" diagnosed with anorexia a couple years ago. She has always struggled with being overweight and dieting but nothing extreme. She got married in 2012 and started dieting not long after. Initially it was a good healthy weight loss, but then it seemed that nothing was ever enough. Red flags went up when my 1 year old ate some laxatives from a bottle of 100 that she had because "red meat tears up my stomach" and that's what we were having for Christmas dinner. My mom and I talked pretty frankly with her after that about how dangerous using them regularly is. For a while her weight was pretty stable. Then she started losing again. She wanted a baby but could not get pregnant (she was probably not having periods to be honest) so she did some fertility treatments. She got pregnant...with twins! This was in 2015. We were all so happy and she seemed to be too. In the beginning she could not eat anything because she was so nauseous and threw up a lot. Then she got a kidney stone which made her not be able to eat. Then she got diagnosed with gestational diabetes and "the doctors were getting onto her to control her diet." Mind you...she was VERY thin at this point. She never wanted anyone to go with her to her appointments. We were not allowed. At 22 weeks pregnant she got admitted in pre-term labor. It was awful and so scary. She told us that my mom was not allowed to come to the hospital because she and her husband needed time together (bear in mind my mom is the one who took her to the hospital and stayed with her for 48 hours straight while he contemplated whether or not he should come back from a fishing trip). I flew down immediately-no questions asked (I live in another state) and walked right in the room and held her and cried with her. They could not get her labor to stop despite the strongest meds. It made no sense...at all. We kept finding pills in her room on the floor or in her bed-she was on complete bedrest at this time so my mom and I were bathing her every day. We would give them to the nurses and comment to each other how careless the nurses were for dropping medicines so much. My sister was also on the bedpan non-stop with runny stools despite not eating much (in case they had to take her to the OR) and having no medications that would cause this. One nurse told me in the hall I needed to tell my sister to stop self medicating. I said she is not-I was so offended. She said look at her she is skin and bones. I replied because she was so sick in the beginning and then the doctors told her to exercise after she eats to control her blood sugars (I am a nurse practitioner-I should have realized that no doctor would tell her that-but I could not think like that at the time). Well...she delivered her babies and neither one made it. We held them and kissed them. I bathed them and dressed them in some tiny clothes donated by an organization. I laid in the bed with my sister and held her as she cried. It was so emotional. I asked her if she was taking any medicine from home at one point and she said no. I can't even get out of bed with all these cords...how could I? This was true. And she wanted these babies so bad. I wasn't giving her anything. My mom wasn't giving her anything. We were still completely oblivious. I stayed with her for 3 weeks. She did not want to be alone so I would nap with her and never leave her side. After I went home I was working and got a call from my mom. I answered and said I can't talk I am at work. She said you need to go outside and talk to your sister who I could hear crying in the background. She had been seeing a counselor-I even went with her to appointments before I left-her husband refused to. She kept saying this was her fault and she killed her babies. Well when she talked to me she told me the pills were hers. She had been taking laxatives for over a year. Sometimes up to 32 a day!!! And she was still taking them in that hospital! It was a slap in the face and inside I was so angry but I hurt for her-I genuinely hurt for her-and all I could say was I love you no matter what and we need to get you help. We told her she would have to tell her husband and she did privately. We told the counselor who said she had experience with this and knew a great dietician with a lot of experience. She started seeing them-one every other week because neither took insurance. This was in October 2015. Things seemed to be going ok. She gained a decent amount of weight and looked healthy again. Then it all fell apart. She started slowly losing again. The night before she was going to take my mom to surgery in October 2016 she came over at 2 am and told her she was taking laxatives again and needed help. She decided for herself that she wanted to go to inpatient rehab because she could not live like this anymore. I researched and found places that took her insurance (oh yea...between then and now I got pregnant with twins which probably greatly contributed to her starting to take them again...I was on bedrest at home for a very similar condition she had in pregnancy). We told her we would support any decision she made. She had not been seeing the counselor or dietician. She told her husband. He FLIPPED! Threatened divorce. Told her not to come home. Told her to get a hold of herself and just eat. We remained calm and told her we supported whatever decision she made. She changed her mind to intensive outpatient. I found a place for that. We had her set up to be admitted that Monday. She went home to get clothes Saturday night and ended up staying. My mom followed her and her husband to the IOP center and when they got there her husband told my mom she did not want to do it. My sister said she would go back to appointments with the dietician and counselor. The next thing we know she tells us that she will not talk about this with us because it is between her, her husband, and the dietician/counselor. WHAT?! We had been there this whole time and showed nothing but support. We kept telling her and her husband that this treatment was not working after a couple of months. She was developing lanugo and could not think. She needed something more. He told us to mind our own business and that they would be fine. Well January 2018 he finally called my mom for help. My sister had been too weak to walk for days. She had been vomiting non-stop. She got admitted to the ICU. Her rectal temp was 93.5. The doctor told them 3 more hours and she would have been dead. My mom and step-dad took her to the ER when her husband called. He stayed home with his 3 kids (from a previous marriage). Her labs were insane. She got a feeding tube. We did not give her the option to return to that counselor and dietician and neither did the hospital. She chose an eating disorder center that does weekly visits and set her up with a dietician and psychologist. She REFUSED to even consider IOP or residential. When she went to the first appointment the day she was discharged the doctor told her that she needed IOP or residential before they would treat her. We called a ton of centers but most don't take adults...only adolescents. We finally found an IOP that would take her and it seemed to be going really well. She was happy. She had to be admitted for a huge kidney stone which caused them to discharge her until after it was surgically removed for insurance reasons (could not have 2 concurrent admissions). She was to go back when it was taken care of. She never went back. She says she is eating everything she is supposed to but no one is watching. She says her husband monitors meals when the doctor asks but he works all day. She lost a significant amount of weight last week and is now at her lowest weight ever but swears she did everything right and was so discouraged. THERE IS NO WAY! My mom goes with her to every appointment. Weights have fallen out of her bra-her excuse was her husband told her to put them there so her boobs looked bigger. Really?! Who just has those lying around? I am at a loss. So is my mom. When I say I love you too much to let you go back to the hospital she says I will never let that happen again. How can she say that?!

Category:

'Around the Dinner Table' Online Forum for Parents and Carers

 

Treatment providers in DenverOpen in a New Window

My D will be a freshman at the U of Denver in the fall. She is in IOP now and d/c's in a few weeks. Does anyone have any recommendations for therapists, nutritionists, or psychiatrists in the campus area? We want to have a team fully in place before she arrives. I've also heard that the on-campus counseling department is very good. Anyone have experience with that? Thanks!

Category:

'Around the Dinner Table' Online Forum for Parents and Carers

 


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