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

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atdt31_US
One of the main things I would like to see this forum add is a quick form section people can draw from and either use as a good starting point for their own letter, or maybe even just print it and use it in some cases.  If you also think this is something you would like, please indicate the sorts of letters/forms that you have wished you had in the past.  I'll start:

1.   Because my daughter has had extensive GI and other work ups, and has had some co-existing matters that, whether related to ED or not, put her in contact with unEDucated doctors and their staffs, I now have a cover sheet that I hand to them when we check in.  When they say, at reception, I can hold onto it and give it to the nurse/doctor, I say no, I need them to have it and read it before we are called back there.  I've attached the form I now use.  You can tweak it to fit your needs if you wish.  I can say with certainty it has helped ... at one in-hospital test we had, the whole nurse team that saw my d over about six hours had clearly read it and completely heeded it.  I typically also include an update so the provider knows the important stuff for the visit, including recent symptoms, and relevant history if the doctor is new.  But I put this as the short cover sheet and instruct they MUST read the cover sheet BEFORE we are called out of the waiting room, even if they don't read the longer update.   

2. A note for the school nurse -- we have the nurse monitoring snacks so I have had extensive discussions and she knows what to avoid and what to do/say.  BUT if we did not have that relationship, I would give the nurse a written version of the blind weight memo above -- in my school at least, parents fill out medication forms including that if my kid has a headache or needs Tylenol for braces pain, etc, that they can administer the pain reliever.  At our school, that means that the nurse would weigh the kid to ensure proper dosage.  Each time, even if two consecutive days.  And the kid would know the weight.  SO .... you might want to do a version of the blind weight memo for the school nurse.

3.  I don't have one, but I am in the process of trying to formulate a DEAR DOCTOR letter that gives very nuts and bolts on my d's ED.  I will share it here if I ever get it done.  If anyone has one to use as a starting point, feel free to post it or pm me if you are willing ...

4.  I don't have one, but I am in the process of trying to formulate a DEAR TEACHER letter to give to science, pe, health, school nurse, school counselor, etc.  I have had to address this stuff too many times over the years.  There is no point in reinventing that wheel each time so I think it is time to just buckle down and create a concise letter that will get their attention and let them wrap their heads around the flip side of their anti-obesity messaging.  I do not blame the teachers.  I do however think if they knew the stakes, the teachers would gladly and naturally incorporate tempering language into their classroom presentations that they currently just do not know to do.  They have no idea an off-comment about exercising more or cutting out fast food could be the gateway to a kid and a family enduring the hell that is a full blown eating disorder.  They also have no clue that after the nutrition or health units they should keep an eye out for red flags to see if they triggered an extreme response.  I actually think it is only fair to the teacher to give them this info.  Again I will share this letter when I get it done.  If anyone has a sample letter I could use as a starting point, that would be great.  I have also been in contact with the person from the School District that oversees the health curriculum and he is receptive to reading materials so I am also gathering that .. concise, accurate, and attention-grabbing is my goal.  I can't get him to do the harder work of delving deeper if I don't make him care right out of the gate.  Any materials any of you think particularly impactful?  I plan to ask him to read Brave Girl Eating and then gather some journals by people like Locke and LeGrange.
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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atdt31_US
mimi321 wrote:
Hi, I have a letter I wrote to the school administration regarding our d's condition and to our provincial government regarding the health program. A little later I will dig it up on the computer abd send you a copy if you like. I agree, this would be great to have. 


if you could post it or pm it to me that would be great, if you get a chance. Thanks!!
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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