Registered: 1469330855 Posts: 27
Reply with quote #1
I can not believe I am still here with absolutely no progress and ED behaviors just digging in deeper on my poor daughter. PHP, In Patient, Residential and virtually NO progress all year except for 6 weeks when WE forced the issue of taking my AN D off gluten. She was tested by a gastroenterologist for celiac and that was negative, and an allergist for wheat allergy and that was negative. All of the doctors and various treatment providers insist it is totally the eating disorder and we are in denial, and refeeding will fix everything, but my daughter has 2-3 episodes a week with extreme stomach pain, she has blood in the urine, and stool, and they are constantly monitoring her sugar level. She does not purge, and she is pretty much 100% compliant. She tries so hard to eat through all the pain, but sometimes can't even stand up straight. And the more we bring it up, the more the doctors poo-poo it as all the eating disorder. HOWEVER, when we forced the issue and she was gluten free she gained 10 pounds in 4 weeks. (She was not happy, but definitely and self admittedly pain free) She does not want to be gluten free, she already knows admits to a lot of restrictions which she has overcome, but she will do anything to get a normal life back. All this treatment has destroyed her psychologically. (Not to mention how it has destroyed our health, our finances, our family, our friendships, and our faith - yes we are in therapy and trying hard to care for ourselves and our other kids, but we are not super heroes) There must be a better way.
She has been treated residentially for over 100 days, and in patient for over 50 days and PHP for the rest of the time, and the only success was during her Gluten Free days, but all the providers insist we are buying into the ED behaviors. We constantly get treated like we are the problem. This is so frustrating, now they are recommending long term care as if she is un treatable and needs to be committed for life. I am hoping to get her transferred to Veritas Collaborative this week, but every time we try to effect a provider change DCF comes after us, and the existing team blames us for not working with them, HOW LONG DO WE WORK WITH PROVIDERS THAT DON'T DELIVER RESULTS? As soon as we try to hold them accountable for results they start taking it out on my daughter, and blaming us for not being supportive. Any suggestions on the gluten issue would be greatly appreciated. And if we are the problem, I can take it, tell us to stop trying to intervene, and the girl should take the pain until she learns to eat and drink what she should. __________________ D diagnosed with AN January 2015, attended PHP, IOP, Residential 18 weeks, back to PHP, IOP 26 weeks, at home struggling, with 1 doc 1 therapy visit per week, til Christmas 2016, back in residential treatment now.
Registered: 1469330855 Posts: 27
Reply with quote #2
One other note, besides treatment this year, she was in residential treatment in 2015 for over 100 days and PHP half of 2016, so there has been various treatment teams, we are on our second primary care doctor, because the first doctor told my daughter never to come back because she cried and made a scene in the office when he yelled at her for losing weight and wanting to play sports again. He said to her she'll never play sports again, so we are constantly doing damage control for the professionals. Ugggggh. I am feeling so hopeless. She was an amazing girl, making amazing progress, and someone always has to beat us down or her down along the way. I wish I could sue some of them for the abuse she has taken from these inept providers.
__________________ D diagnosed with AN January 2015, attended PHP, IOP, Residential 18 weeks, back to PHP, IOP 26 weeks, at home struggling, with 1 doc 1 therapy visit per week, til Christmas 2016, back in residential treatment now.
Registered: 1385153142 Posts: 1,130
Reply with quote #3
you sound really frustrated, and I'm sorry for that. You ask how long you should stick with providers that don't deliver results, and I think many of us would agree that there should be a significant weekly gain during WR. If your team isn't able to do that, for whatever reason, then it might be best to find another one. What are your other options? Sending warm support, xoOTM __________________ D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old.
Registered: 1284535839 Posts: 3,113
Reply with quote #4
Sorry Daddyg that you are so frustrated and feeling lost.
Am I getting it right that your D's pain interferes with her eating, but when you removed gluten she was able to gain weight because she had less pain? We are not doctors and so we can't diagnose but there are a few things that I think are worth mentioning. Abdominal pain, cramping, muscle spasm is incredibly common in those with eating disorders. There is a higher rate of things like irritable bowel for example. When food is restricted there is often pain associated with that, when increased the stomach often is not used to dealing with the increase. My D did have some stomach issues before she got sick 7 years ago. It is now a lot worse. My D has had on occasion positive testing in the stool for blood. Like your D she had testing for coeliac disease, as well as inflammatory bowel disease. She has neither. Probiotics have been somewhat helpful at reducing the episodes of pain. (large numbers with broad spectrum of species) I have also been told that it is likely her blood was due to gastric irritation. We were also told that FODMAP intolerances have increased frequencies after dietary restriction, ie. more pain. So what to do? If there really has been a benefit to her from avoiding gluten and this is the only thing, I would run with that at the moment, getting her physically more healthy is the most important thing. If they are confident she doesn't have coeliac it can reintroduced in small amounts later. It is likely that your D does have genuine pain. Her eating disorder will influence how she views this as well as what she thinks is causing things. It can't do anything else. The advantage of treating primarily at home is that we know our kids well and sometimes can work out ways around issues that others cannot. Most programs have a series of strict rules and protocols that are not varied for any reason other than clear (read serious impact on health) medical issues. When working with groups of eating disorder patients this is understandable. Negotiations can be endless so leaving rules as rules though often incredibly rigid often works. So if you are planning on changing providers, having a clear plan of what you think that can do differently and finding out if they can do it is important prior to a change. There is no doubt that an eating disorder is a miserable illness to have. It is horrible to see our children suffering with them but also important that we continue to have hope and be the agents used to help bring about changes. That sweet child/young woman she used to be is still there. __________________ 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.
Registered: 1454901521 Posts: 129
Reply with quote #5
So sorry to hear about all your troubles with your treatment team ☹. That sucks!
I also put my d on a gluten free diet, despite tests showing negative on gluten and celiac. It might be worth doing the dna test for celiac as it is way more accurate. My friend's d only showed a positive test result on the genetic celiac test, all the other came out negative.
When we started to refeed in April of last year, she would not eat food and was refed on ensures (which is gluten free). Slowly she gained weight and in August it was decided to switch to food, starting with a sandwich. Took her a whole month to be able to eat a whole sandwich. Afterwards we switched her over to normal food, but then her weight gain had stalled. In October she had blood tests done and showed phosphate deficiency. If you look that up, you'll find that's very rare, so rare I couldn't find over the counter supplements, and needed a script. Someone on this forum suggested that she might have absorptions issues.
I decided to try gluten free and see if that helps. I bought gluten free bread, gluten free pasta and made gluten free snacks. She started to gain weight again and I decided to stay gluten free. The gluten free bread tasted awful, so I looked up which type of bread had the least amount of gluten. Turns out sourdough bread had the least and she is eating that since. I bake using gluten free flour and the red hopes turn out exactly like before.
Your d might also benefit from a probiotic and aloe vera juice, which supports the intestines.
If you want more information regarding gluten free and gluten's effect on the brain, you can search for gluten free and autism. There are plenty of parents with autistic children who believe going gluten free improved their child's behaviour.
In May this year, a genetic study was published, showing the link between AN and autoimmune disorder, so I do believe gluten might aggrevate her eating disorder.
Please feel free to ask more questions.
I hope you can find a treatment team who will listen to you.
Best of luck ☺☺☺
__________________ 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. Challenging fear foods now.
Registered: 1438737617 Posts: 1,212
Reply with quote #6
A few thoughts on the issues you bring up. I'm not sure when you pushed for gluten free but she gained 6 pounds inpatient (during which time you didn't mention if she was gluten free) which leads me to think that it is ED stuff. Pain and discomfort during refeeding is the rule rather than the exception. If you do think she has celiac, she needs the genetic test and an endoscopy with small bowel biopsy (my sister-in-law has celiac so heard about this issue at length). If those tests are negative, then she doesn't have celiac.
Have you called Veritas and had them initiate a transfer? If DFC are involved, that is probably the only way you are going to get away from the treatment center you are at now. DFC shouldn't be a problem if she is being transferred her from one treatment center to another.
HOW LONG DO WE WORK WITH PROVIDERS THAT DON'T DELIVER RESULTS?
I hear you. Been in that place with my daughter more times than I wish to admit. You will be stuck there until you talk to Veritas and have them intervene. I honestly don't think you are going to be able to do the move yourself with DFC involved unless you get them on board. I would talk to whomever is handling your case and let them know the plan. They might have to do the transporting but if you are serious about getting away from where you are now, you need them on board and Veritas ready and willing to do admit her the minute she gets there. I know I keep saying this but having been in your position I think it is the only way you are going to get your daughter someplace else.
Registered: 1452437794 Posts: 1,438
Reply with quote #7
Personally I would pull out all the stops to get her into Veritas ASAP. Please listen to this video, it covers a multitude. __________________ Son,DX with AN, (purging type) age 13 in October 2015 , (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
Registered: 1504817517 Posts: 2
Reply with quote #8
Consider contacting Dr. Fassano at Harvard. He is the expert on celiac. He's thevone who found it in the US.