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Nadine1169 Show full post »
scaredmom
This is common with many of our kids. Very strong willed.
Does she live with you and do you have incentives for her? If you pay for things like a cell phone or car is there a way to make it that she ‘ does it your way’ in order to keep her phone or tuition if she goes to school etc?
it is very difficult.
Do you have support too? To help you with the stress of it all?
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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Nadine1169
scaredmom wrote:
This is common with many of our kids. Very strong willed.
Does she live with you and do you have incentives for her? If you pay for things like a cell phone or car is there a way to make it that she ‘ does it your way’ in order to keep her phone or tuition if she goes to school etc?
it is very difficult.
Do you have support too? To help you with the stress of it all?
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Nadine1169
We have complete financial control and at our wits end. There unfortunately have been screaming matches and she along with her new therapist said that she will call the police. 
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sk8r31
Sending you a virtual hug;  so sorry that you are feeling at your wit's end.  That is not uncommon, unfortunately.  And many have strong-willed kids too and have had to find the best way forward for their kid and their family, which can vary according to issues and needs.
I wonder if you might find something helpful for your situation on this super-resistors thread.
As well, I hope you are getting support too.  Seeing a therapist for yourself, or your GP for meds if necessary.  I needed both when we were in the throes of ugly ED stuff in our house.  Please do prioritize your own health needs, in order to be of best support to your d and family.
Sending warm support,
sk8r31
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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Mamaroo
Nadine1169 wrote:
We have complete financial control  

That's great, apart from food and basic hygiene products, you can use anything else as leverage to get her to eat. Frame it in a positive way: "you can get your phone back after you've eaten" instead of "I'm taking your phone if you don't eat". Another thing I would do is stop paying for that therapist. She is driving a wedge between you and your d.

Nadine1169 wrote:

There unfortunately have been screaming matches and she along with her new therapist said that she will call the police. 


We all had screaming matches and nobody is a winner. You need to fake calmness and confidence in front of your d. If she sees you screaming or losing control it will increase her anxiety. She needs to know that you are in control, like a benevolent dictator. This will create trust so that she can eat what you put in front of her.

I can recommend the UCSD eating disorder program,  they run 5 day courses, here is a link:

http://eatingdisorders.ucsd.edu

Can you give us more iinformation about her medication? I'm not familiar with the ones you mentioned. I know it is very hard at the moment and you have been struggling very long with this. Try to take out some time every day to get away from ED.
D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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tina72
Nadine1169 wrote:
We have complete financial control and at our wits end. There unfortunately have been screaming matches and she along with her new therapist said that she will call the police. 


Screeming matches do not lead to anything, we had to learn that, too 🙂.
Complete financial control is great. So think abut having a plan and a contract with her. We wrote down what we are doing for her (paying for life, insurances, car, phone, University, all else and what she has to do for that (eat 3 meals 2 snacks, see GP regularly for blood and weight check, maintain her weight, be a team with us). She knows first consequence for not eating is no car keys and she loves her car...🙂Best incentive ever here.

By the way, who pays for the new therapist? If you pay for him, I would have a talk with him. He does not need to give you any information about your d but he can listen to your concerns and tell you something about how he wants to get her back to normal eating. Is that a FBT therapist? If not, can you change to some?
Keep feeding. There is light at the end of the tunnel.
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mjkz
I agree with Tina. If this therapist is not supporting you and you are paying the bills, then I'd stop paying for the therapist.  Finding a therapist is not easy but once you got a good one that will support you and your daughter half the battle is won.  I used FBT with my daughter who was 21 or 22 at the time.  We had a contract that very clearly set out goals and what was needed if the goals were not met (i.e. a higher level of care, etc.).  I didn't ask her to sign the contract but told her if she was going to live with me the contract was the new rules of the house.  She wasn't happy but she was financially dependent and had no choice.
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Garden
I have a 13 year old with PANS. She spent 6 days in a hospital for refeeding, and we have seen a nutritionist at an ED clinic weekly ever since. We added a Maudsley family therapist, but she has a strong personality and my daughter isn’t taking to her. Although we have started treating the PANS, her case is so bad that it takes a long time to see improvement.

She is on antibiotics and monthly IVIG. If your daughter has severe PANDAS, it really must be treated aggressively by a PANDAS specialist. Antibiotics alone will really only work for mild cases. She may need oral or IV steroids or more. 

Like others have said, weight restoration is still primary. Fat free food is not allowed. She needs carbs, fats, and protein. Honestly, she doesn’t even really need vegetables right now. Give her a good multi vitamin, and focus on things like cheesy mashed potatoes (I know that might sound impossible right now - we manage avocados and almond butter well - any other fats are huge struggles).

Best of luck!
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debra18
I think that my daughter has something like PANS. I believe it was caused by an infection from a vaccine (sorry to be controversial here. I am not telling anyone not to vaccinate). She had an acute case where she literally stopped eating over night. She has responded well to refeeding and is doing well now. But still needs more calories than before and basic monitoring. I know people that have been diagnosed with Pandas and I didn't see that anitbiotics helped them. I would love to see there is a cure that whatever is going on in my daughter's brain would be magically fixed but I haven't found that yet.
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atdt31_US
Garden wrote:
I have a 13 year old with PANS. She spent 6 days in a hospital for refeeding, and we have seen a nutritionist at an ED clinic weekly ever since. We added a Maudsley family therapist, but she has a strong personality and my daughter isn’t taking to her. Although we have started treating the PANS, her case is so bad that it takes a long time to see improvement.

She is on antibiotics and monthly IVIG. If your daughter has severe PANDAS, it really must be treated aggressively by a PANDAS specialist. Antibiotics alone will really only work for mild cases. She may need oral or IV steroids or more. 

Like others have said, weight restoration is still primary. Fat free food is not allowed. She needs carbs, fats, and protein. Honestly, she doesn’t even really need vegetables right now. Give her a good multi vitamin, and focus on things like cheesy mashed potatoes (I know that might sound impossible right now - we manage avocados and almond butter well - any other fats are huge struggles).

Best of luck!


garden:  I am looking for a pandas  specialist for diagnosis/rule out. ... are you willing to share who your dr Is and what state you are in?  I believe I am set up to receive emails through this site if you are willing to privately share the info ... 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. FWIW ED-D is a fraternal twin and we have no other kids.
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Nadine1169
We are near Chicago and see Dr. Kovacevic, although I’ve never met him, as my daughter is 20 and insists on going alone. She’s extremely defiant. 
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tina72
They all are extremly defiant...seems to be a charcteristic of ED all around the world.
Who pays for that doc? If its you - who can stop you from going there for an appointment and ask all the questions you have? He does not need to tell you details about your d, he can speak "in general" but you could ask all your questions. Just an idea.

He seems to be quite experienced but maybe has some old fashioned ideas about refeeding. Can you ask him about FBT-tay? That is the FBT version for young adults (17-25).
Keep feeding. There is light at the end of the tunnel.
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