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

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Deana
My 14 year old daughter is almost, if not fully weight restored plus about the extra 10%. She’s been doing relatively well with FBT and has gained about 25 pounds in the past 6-7 weeks. Her mood had gotten better and quality of life much better. Family dynamic overall way better. There has been underlying anxiety that has really bubbled forth as the ED voice has faded. Her pediatrician recommended Prozac, 10mg, for the anxiety. She’s been taking it for 1 week today. In the middle of last night, she awoke with severe anxiety that is still continuing at this moment. She can’t relax, her eyes are buggy, her teeth are jittery, she can’t relax. She is overcome with thoughts of things that she feels she’s done wrong or thought wrong. These things aren’t “ bad” and she continues to want my reassurance that it’s ok. This feels like torture. Please, please give me insight here. My son has PANDAS. When he was stuck with PANDAS, this is how he behaved. I asked the pediatrician, who is a PANDAS specialist if this could be what my daughter is dealing with. She said no because the anorexia wasn’t sudden onset. I’m just so desperate to help my poor girl
ED began at age 13, though I didn’t recognize it until she was almost 14. Through FBT, she’s gained almost 30 pounds since 3/15/20. Life is getting better. We have a few pounds and a lot of commitment left to go 💗
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Enn
Hi there, As we are not doctors here , i can only advise you to speak with her doctor ASAP. Could this be a side effect of the meds? Maybe. Keep reassuring her, keep her close to you and ensure there are no suicidal thoughts. If there are, take her to the Emergency Department asap. 
Please let us know how it goes.
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)
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Deana
She’s got an appointment tomorrow and she’s sleeping with me tonight. I’m just desperate for her to be ok 😢 Thank you for your response
ED began at age 13, though I didn’t recognize it until she was almost 14. Through FBT, she’s gained almost 30 pounds since 3/15/20. Life is getting better. We have a few pounds and a lot of commitment left to go 💗
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atdt31_US
Pandas mom here, too. Not too sure why the doctor thinks they are mutually exclusive. Or that the anorexia was as much prior to, as opposed to an early sign. RAN and EDs certainly come with anxiety that can present in an extreme way .... but with one Panda in the family, I would not so easily dismiss it. Obviously you have thought of recent illness ... broaden that and remember infection can be low grade and hide in tonsils, sinuses, perianaly, and can look like ingrown toenails.  Personally I would consider a trial of a Pandas remedy like augmentin for 30 days; or ibuprofen 24/7 for seven days, or a steroid burst. My kid always responded well to antibiotic and her stomach does poorly with ibuprofen, and we have never done a stetoid burst .... but since you have a Pans doctor, see if they will try one these, diagnostically.  
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
Also, I did not track how long the Prozac has been on board and I do not know typical doses...BUT I do know that ssris in Pandas can be ineffective  or Even exacerbating and, when appropriate relative to flare timing,  most doctors start at MUCH lower dose for a P/P kid than a typical kid ... I think 1/4 dose or so. 
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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Torie
Deana wrote:
She’s got an appointment tomorrow and she’s sleeping with me tonight.

Good.  Is this a regularly-scheduled appointment, or is it the soonest they could see her?  I would want her seen asap because I'm sure this is very difficult for you, her, all involved.  Did you discuss the possibility of reducing or stopping the med today?

Please keep us posted - thinking of you xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Deana
Took her in to the pediatrician this morning. The dr thought it was unlikely that it was PANDAS/PANS because she’s 14, but did a strep test anyway. Turns out it was positive. She has PANDAS. I wonder how long she’s had it with less symptoms. I am hoping her anorexia is PANDAS based. I’m not going to get my hopes up, but at least this extreme anxiety and OCD will hopefully calm down soon with antibiotics. She also took her off the Prozac for now at least. She’s gotten other labs ordered and we’ll take it from there. Thank you everyone for your replies. We’re on a long, bumpy road, but we'll make it to the end eventually 💗
ED began at age 13, though I didn’t recognize it until she was almost 14. Through FBT, she’s gained almost 30 pounds since 3/15/20. Life is getting better. We have a few pounds and a lot of commitment left to go 💗
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atdt31_US
Well, I think congratulations. A correct diagnosis is usually better than poor health and no diagnosis. My d’s ARFID appears to be non p/p related but she has had growth and feeding issues since birth (ultimately probably some gene issue that contributes to ARFID and p/p, but outside of flare she has always had eating issues. Inside flare she actually binged!).

I hope the antibiotics clear up all the symptoms with your daughter, food and otherwise. It definitely happens!  If not, come back for feeding tips.   Great job to get the doctor to revisit the possibility!  
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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Deana
It was a false positive. The culture came back negative. Turns out the behavior was from a really bad reaction to Prozac. I think she might be near her baseline before starting it now. It’s definitely been an awful experience for us. 
ED began at age 13, though I didn’t recognize it until she was almost 14. Through FBT, she’s gained almost 30 pounds since 3/15/20. Life is getting better. We have a few pounds and a lot of commitment left to go 💗
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atdt31_US
With your family history I would continue the antibiotic unless there is reason to stop it other than the negative culture. 
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
Pandas/pans kids often have “really bad reactions to drugs like Prozac.”  It stinks, but that is yet another symptom that cuts both ways ... could be more evidence of a pandas like process. Of course, could just be a medication reaction. Or even coincidence. But again, with a know Panda sibling, I would proceed as though pandas unless some risk I don’t see outweighs the potential benefit. 
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
How is eating now?  
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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Deana
Thank you for your responses. She’s been off the Prozac for 8 days now. She is getting better. The rapid result strep test being positive does still baffle me, and I’m going to mention it to the doctor. As she was coming down from the Prozac, she let me know the anxiety and OCD thoughts were building, not sudden. This does give me some reassurance that it’s not PANDAS related. I’m not closing the book on it though 💗
ED began at age 13, though I didn’t recognize it until she was almost 14. Through FBT, she’s gained almost 30 pounds since 3/15/20. Life is getting better. We have a few pounds and a lot of commitment left to go 💗
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Torie
Deana wrote:
Turns out the behavior was from a really bad reaction to Prozac. I think she might be near her baseline before starting it now. It’s definitely been an awful experience for us. 

Prozac made things worse for my d, too.  Sucks.

Hope things are getting a bit better now. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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