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

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

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Nadine1169
20 year old d with recently diagnosed PANDAS — it is associated with OCD and ED. Is anyone else in the same situation?  
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tina72
Hi Nadine1169 and a very warm welcome from Germany! I am so sorry that you need to be here with us.
My d does not have pandas but RAN. There were a few parents here with pandas but that was some time ago. I try to find out who that was so you can have private contact when I have more time later.
Anyway, pandas or not, ED must be treated the same way in all cases, food must go in.
So we can help with that no matter if we have experience with pandas or not. Pandas must be treated with antibiotics in addition but refeeding and AN behaviour is mostly the same.
My d is 19 so I get what that means when they are young adults. She was 17 at diagnosis.
Please ask all your 1 million questions, we are here to help you.
Keep feeding. There is light at the end of the tunnel.
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tina72
Maybe these threads can help you:
https://www.aroundthedinnertable.org/post/diagnosed-pandaspans-with-ocdeating-restrictions-still-in-a-flare-will-fbt-work-9751367?highlight=pans&pid=1304405995


https://www.aroundthedinnertable.org/post/does-it-make-a-difference-if-its-pandas-does-anyone-have-recent-experience-of-pandasan-7372757?highlight=pans&pid=1301905676

Feel free to contact the persons that are mentioned there, I think they have not posted here for a longer time and may not be around here any more.
You can contact a person by clicking on the names. Then there will be an orange arrow on the left with "email xy".
Keep feeding. There is light at the end of the tunnel.
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Ellesmum
Hi, f you’re on social media I know there are PANDAs groups you might find helpful. 
Ellesmum
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Foodsupport_AUS
Welcome to the forum. There are a few parents around whose children have PANDAS.  My understanding like Tina's is that if there are OCD symptoms and eating disorders associated they should be treated in the same way as usual, with the Strep infection treated as well. PANDAS is reported as being incredibly rare in a young adult. https://www.nimh.nih.gov/health/publications/pandas/index.shtml#pub1 How can we help you? 
D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
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Nadine1169
Hi, 
I actually don’t know-technically- how to respond to a person’s individual thread. Help?
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scaredmom
Hi Nadine1169,


So if you wish to reply you can just type a response as I am doing here or you can click on the quotation marks at bottom of their posts and you have quoted them like this.  

Nadine1169 wrote:
Hi, 
I actually don’t know-technically- how to respond to a person’s individual thread. Help?

Hope that helps. 
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:
Hi Nadine1169,


So if you wish to reply you can just type a response as I am doing here or you can click on the quotation marks at bottom of their posts and you have quoted them like this.  

scaredmom wrote:

Hope that helps. 
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Nadine1169
Thank you. 
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Nadine1169
I think maybe I should rename myself terrified and guilt riddled mom
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tina72
Nadine1169 wrote:
Thank you. 


When you push "return" after clicking on the quote button you can add a text to that quote.
Keep feeding. There is light at the end of the tunnel.
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tina72
Nadine1169 wrote:
I think maybe I should rename myself terrified and guilt riddled mom


There is no need to feel guilt riddled. You did not cause that. It is not your fault.
Terrified is normal 🙂. We all felt that in the dark days.
It will get better. If there is really a pandas infection (as this is very rare that must be tested) this can be tackled with antibiotics and the ED and the OCD are from that infection of the brain and that can be tackled too. ED is treatable and she will get healthy again. No panic. You are not alone. Here is an army or parents from all over the world waiting to help you!
Keep feeding. There is light at the end of the tunnel.
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deenl
Hi Nadine and welcome,

We have all felt this way. It is just part of the process that we have to go through when we get used to the fact that our children are ill. As you learn more about the illness, you will come to see that our kids are all suffering from a 'series of unfortunate' events - a combination of genetic vunerability, too few calories and in your case a nasty bug. ALL of us feel it took too long for the penny to drop and too long to get access to good care - even in the most perfect of circumstances (most of us did not have perfect circumstances). I have regrets but I do not feel guilty - how could I have known when it took the doctors months to diagnose him? 

Nadine1169 wrote:
I think maybe I should rename myself terrified and guilt riddled mom


The terror passes too. I found information so important and empowering. I devoured books and websites. I also found that while I remained stressed for a very long time and needed medication to deal with the anxiety, the terror passed. About 3 months in, a friend asked how I was and I said that weirdly I was ok, I was getting used to our new normal. I guess the body can only stay in full panic mode for a certain length of time.

With the benefit of hindsight, all I can suggest is accepting your feelings as entirely normal. Try to deal with them as best you can (I used long baths) and know that they will ease.

Wishing you strength and courage,

D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
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Nadine1169
She has had the OCD and eating portion of PANDAS for 8 years and I missed it. I brought the OCD and my research on PANDAS to the doctor 15 years ago and was dismissed and I fell for it. 
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Nadine1169
The unfortunate thing is that these episodes also coincided with major transitions: new school, then 6 years later  transition to middle school, then high school, then college, and now back home. 
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tina72

We all missed something. My d lost 10 kg and I did not realise that it is AN.
You should blame it on the doctor that did not believe you 15 years ago.
Now you need to look forward. Looking back and thinking what you did NOT does not help her.
Look forward and learn what you can DO NOW to help her.
OCD is often there even years before ED moves in. My d was born with OCD 🙂.

So she is at home now? Is the pandas already treated with antibiotics? Has she lost a lot of weight? Is there a lot of what we call fear food - is she restricting a lot? How can we help with ideas to get food in, what to cook and how to tackle fear food?

Keep feeding. There is light at the end of the tunnel.
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scaredmom
A formal welcome from me!
Do you have an actual diagnosis? It is not clear if you think she has PANDAS or if it has been formally diagnosed? What kind of professional support do you have? And how are they treating her currently?  

please ask all the questions you have.
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
[QUOTE username=tina72 userid=4964560 postid=1308651994]

We all missed something. My d lost 10 kg and I did not realise that it is AN.
You should blame it on the doctor that did not believe you 15 years ago.
Now you need to look forward. Looking back and thinking what you did NOT does not help her.
Look forward and learn what you can DO NOW to help her.
OCD is often there even years before ED moves in. My d was born with OCD 🙂.

So she is at home now? Is the pandas already treated with antibiotics? Has she lost a lot of weight? Is there a lot of what we call fear food - is she restricting a lot? How can we help with ideas to get food in, what to cook and how to tackle fear food?

She is home now and has a confirmed diagnosis of PANDAS. All the strange food behaviors began at at age 12 and after nutritionist she got back on track, although still focused on food.  She’s lost a lot of weight and, before her most recent bout with strep, had started eliminating oil, which she didn’t have a problem with before. She had gone off Lexapro, is still on Adderal.  She then eliminated chicken and began eating only vegetables, which lead to extreme weight loss. She is 21, so she cooks food in our kitchen. She used to bake a lot and try to make everyone eat it, now she even stopped doing that. Our family is definitely fractured from all of this and there had already been cracks in our family, so on top of those issues and my daughter being angry and blaming, I don’t know how to handle all the viciousness that is spewed at me and our family because I know that she has all of this going on, and that part of what she is saying is true about us. This is all so complex. 
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Nadine1169
[QUOTE userid=6791850 postid=1308658666][QUOTE username=tina72 userid=4964560 postid=1308651994]

We all missed something. My d lost 10 kg and I did not realise that it is AN.
You should blame it on the doctor that did not believe you 15 years ago.
Now you need to look forward. Looking back and thinking what you did NOT does not help her.
Look forward and learn what you can DO NOW to help her.
OCD is often there even years before ED moves in. My d was born with OCD 🙂.

So she is at home now? Is the pandas already treated with antibiotics? Has she lost a lot of weight? Is there a lot of what we call fear food - is she restricting a lot? How can we help with ideas to get food in, what to cook and how to tackle fear food?

She is home now and has a confirmed diagnosis of PANDAS. All the strange food behaviors began at at age 12 and after nutritionist she got back on track, although still focused on food.  She’s lost a lot of weight and, before her most recent bout with strep, had started eliminating oil, which she didn’t have a problem with before. She had gone off Lexapro, is still on Adderal.  She then eliminated chicken and began eating only vegetables, which lead to extreme weight loss. She is 21, so she cooks food in our kitchen. She used to bake a lot and try to make everyone eat it, now she even stopped doing that. Our family is definitely fractured from all of this and there had already been cracks in our family, so on top of those issues and my daughter being angry and blaming, I don’t know how to handle all the viciousness that is spewed at me and our family because I know that she has all of this going on, and that part of what she is saying is true about us. This is all so complex. 
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Nadine1169
She is being treated for PANDAS with antioxidants and she looks a little better and is buying new foods and cooking chicken again - without oil- but I haven’t seen her eat it-as her new therapist told her not to eat with us because of all the food battles that have erupted. 
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scaredmom
Just a question to clarify.
Is she being treated with ANTIBIOTICS or ANTIOXIDANTS?  The usual treatment is antibiotics as well as food to gain.
If could have been a typo but you mentioned antioxidants.
Is this team a specialised PANDAS team or ED team?
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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Mamaroo
Welcome from me as well, Nadine. Sorry you had to struggle so long with this illness. Here is a great article I found on Pandas:
http://discovermagazine.com/2017/april-2017/hidden-invaders

You said her therapist has told her not to eat with you, is this an ED therapist? Ideally you should look for an FBT therapist as FBT has been shown to work, while the jury is still out with regards to other types of therapy. With FBT the family used to help the patient returning to normal eating behaviours. Run from any therapist who suggests that you (or anyone else in the family) have caused this illness. 

My d was not able to eat with the rest of the family, so I sat with her in her room to supervise her. I distracted her by playing candy crush. I would suggest getting a meal plan, that will illuminate a lot of food battles. Please send us more questions,  we understand.  Sending you lots of hugs  🤗🤗🤗🤗
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:
She is being treated for PANDAS with antioxidants and she looks a little better and is buying new foods and cooking chicken again - without oil- but I haven’t seen her eat it-as her new therapist told her not to eat with us because of all the food battles that have erupted. 


That seems to be no ED therapist. If any possible she should eat at last with you or another person that supervised that she really eats what is served. Best option would be to eat with whole family at normal dinner table if possible. All food is served on ready made plates for all family members like in restaurant. No negotiation - what is served shoud be eaten.
Food that you do not SEE going in is normally not eaten. That is basically needed for progress in refeeding.

You should try to get her out of the kitchen and stop buying food and cooking and baking, if that is not eaten later it is ED behaviour.
You cook, you serve, she only is required to eat.

It is normal that she is agressive and angry and blaming because ED wants to seperate you and wants her to eat nothing and you are the enemy for ED and want her to eat. So if that is extreme and a problem for the rest of the family try to seperate in different rooms for meals, you and d in the dining room for example and the rest can eat in the kitchen if possible.
Keep feeding. There is light at the end of the tunnel.
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Nadine1169
tina72 wrote:


That seems to be no ED therapist. If any possible she should eat at last with you or another person that supervised that she really eats what is served. Best option would be to eat with whole family at normal dinner table if possible. All food is served on ready made plates for all family members like in restaurant. No negotiation - what is served shoud be eaten.
Food that you do not SEE going in is normally not eaten. That is basically needed for progress in refeeding.

You should try to get her out of the kitchen and stop buying food and cooking and baking, if that is not eaten later it is ED behaviour.
You cook, you serve, she only is required to eat.

It is normal that she is agressive and angry and blaming because ED wants to seperate you and wants her to eat nothing and you are the enemy for ED and want her to eat. So if that is extreme and a problem for the rest of the family try to seperate in different rooms for meals, you and d in the dining room for example and the rest can eat in the kitchen if possible.
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Nadine1169
She will not see an ED therapist. And She has been very spirited, has been sassy her whole life and now she is just vicious and using the CBT And terms to divide and conquer the family. 
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