F.E.A.S.T's Around The Dinner Table forum

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Scaredmom Show full post »
Scaredmom
mnmomUSA wrote:
Do you have an ED team at all yet?  If you are in the US, let us know a general idea of where, and we may be able to point you in the right direction for GOOD help (as bad "help" can be worse than no help at all).  Unfortunately, not all doctors and ERs are created equal in that respect.  My pediatrician told me that in medical school, she had two HOURS of training on ED.  That was it.  She quickly realized that I knew more than she did (from reading around this site) and was willing to take direction from me on what I wanted her to say to my daughter and what I didn't want her to say to her.  She became a key ally for me. Not all doctors are so willing.  And, we were very lucky in that we were referred to a Children's Hospital ER where they had an affiliated ED, fully FBT compliant, program.  So, from the beginning, we had help that said "parents are in charge of eating and you (to my daughter) must eat what they say to eat."    And, I'd say you had a success this morning in that SOME food went in.  Keep building on that.  Calm, compassionate insistence that food be eaten....even if you are not feeling very calm or very compassionate.  That's the part that is so so hard.


Yes we have a team in place. She had an urgent referral to a specialist at the children's hospital and her appt is this Friday. We are located in Canada. I am anxious to see how the appt goes!
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atdt31_US
Some people use times of relative calm to call the police/fire/mental health ... whatever emergency agency you May at some point call in the midst of a big tantrum or lengthy food or hydration rejection, and meet with their Mental Health officer (without d present) to explain your situation. That way if you need them on an emergency band is they k ow the back story. You can even tell them what you need ... I need you to be willing to transport her to this hospital for tube feeding because she has not eaten for x hours.  
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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mnmomUSA
Scaredmom wrote:


Yes we have a team in place. She had an urgent referral to a specialist at the children's hospital and her appt is this Friday. We are located in Canada. I am anxious to see how the appt goes!


I hope that this appointment is the beginning of getting the assistance you need!  Hang in there.  I will be waiting to hear how it goes!
D, age 18, first diagnosed March 20, 2013, RAN, at age 13 Hospitalized 3 weeks for medical stability. FBT at home since.  UCSD Multi-family Intensive June 2015. We've arrived on the other side.  :-)  D at college and doing great!
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