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Scaredmom2019 Show full post »
Made appt for GI testing to be sure. I thibk IBS is present and maybe meds might help slow down the digestion. I read all over that ED and GI go hand in hand but that GI comes during recovery or after. My D had the GI long before ED. In fact GI led to ED. So I think I'm following the best path. Full medical workup to see if she has anything GI related that could be treated. Then regardless she will need tons of anxiety work and care. Maybe ED treatment isn't best but we will carry on til GI workup. Its hard because a lot of the ED places seem to have exact thoughts as to what ED is and how to treat etc. We are atypical in that GI (I think ARFID) got us here. They treatment doesnt seem very knowledgeable about our needs. My D fears food related to GI and always has. 
It can sometimes be a chicken and egg issue. I have seen sometimes on the forum that the child had GI issues and in the end it was all ED.and that some had a true GI issue and ED. Of course those with a primary GI don’t always hang around here on the forum as it may not be the best place for them either. At the beginning it can be so perplexing.  So I can truly sympathize that it can be so muddy to figure out. If you keep vigilant and keep feeding and check out the bowel issues, then I think you are doing all that is necessary.
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)
Yes thank you I appreciate that. It was for sure the GI first then followed by years of disordered eating (not sure full ED) but avoiding food while out of the house etc. I think she has ARFID secondary to GI. Either way, eating is crucial. Luckily she doesnt need weight gain (shes at very low end of normal range) but more weight wont hurt. She doesnt seem to fearful about weight gain either - just having to poop. She actually poops sometimes DURING meals. It is a far too much. 
You are right that there is a strong relationship for some between the gut and anxiety. Jennifer Gaudiani also refers to a strong mind body connection. The idea of eating and needing to use bowels is common to all animals - called the gastrocolic reflex as discussed here https://www.verywellhealth.com/gastrocolic-reflex-1944913

There may of course be nothing at all physically wrong with her gut as is the case with most with IBS - they are just extraordinarily sensitive to the normal physiology, but of course it is essential things like Coeliac is ruled out as a potential contributer to her symptoms. 

I suspect she may need to gain weight - being at a low end of normal range may mean she is not where her body needs to be and many here have reported that gaining some weight actually improves a lot of the anxiety. 
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.
Luckily she doesnt need weight gain (shes at very low end of normal range) but more weight wont hurt.

If she is at the very low end of normal weight range she definitivly needs weight gain. She needs to have a good normal weight to help with brain recovery or you will have GI problems and AN problems in addition.
Keep feeding. There is light at the end of the tunnel.
Ok I think I got it!
Her number 1 fear/ issue is stomach aches and having to have bowel movement away from home. She doesn't want to gain weight but she is not really afraid of it. Weight gain or being "fat" is not her primary issue. Because of this the peers dont really understand her (she feels). She is eating 90% of her food and I'm not having any issues at home with her not eating. She has never given me a stand off or really been distraught aboit eating....except that it is going to give her tummy troubles. This has been an issue for many years with her not eating before school or at school due to stomach issues. This summer she was really stressed and decided not eating at all would alleviate her stomach issues....she then kind of slipped into "I like being super skinny'. 
She has OCD and this all started at age 5 when she feared peeing her pants and that lasted for a year or so. Then it moved on to fears her eyes were too red. Both these fears were obsessions with a ton of checking and fear. 
We are still in treatment and carrying on but she really only wants this to fix her stomach issues. If I could promise than 10lbs would fix her tummy issues - she would fairly easily put it on. 

Have you ever heard of PANDAS or PANS (P/P)?  Some of what you have written are some pretty big red flags that there could be something in her immune response to infection (or other trigger) .... five years old; OCD; food restriction; vague tummy complaints; and, most notably especially in the presence of those other things, urinary concerns ..... those together suggest PANDAS (or PANS -- pandas is sort of a subset of pans, both of which are likely on the spectrum with Autoimmune Encephalitis).

I have found that the best place to get up to speed quickly on P/P is to go to youtube and put in Swedo (doctor) and pandas and look for video presentations from 2019.  She is a doctor and goes to conferences put on for other doctors and/or parents of p/p kids ... she generally does a good overview.  Miroslav Kovacevic is another good name and he is who initially reviewed our timeline (also going back to early childhood -- actually infancy with us) and suggested further tests to rule in p/p.  Finally, there is starting to be a recognition that p/p is not actually all that rare (one in two hundred kids, or more) and that some of them might be hiding in plain sight in ED treatment centers.  Again, youtube is great -- search for the sane conference in Sweden, in 2019 and look for dr Cynthia Kapphahn's video presentation within that conference.  She is a Stanford ED doctor and speaks to how she now has protocols to try to identify p/p kids who present to her with ED .... they might need different treatment for ED and certainly need treatment for p/p.  
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.