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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mema
Hello Wonderful People.  I posted on this forum back in Oct when my grandson first presented with eating restrictions  after a school mate told him he was fat. (my group name was different as I had made an error creating my log in and used my actual name :-) It soon became clear that he had PANDAS/PANS, and has been in a flare ever since Oct.  It took some time to get our family "on the same page" with this guy and what he needs, but we are finally there.  So sad, but there you are.  Our little guy is 7 and his OCD/eating restriction/anxiety associated with it is getting worse.  We began CBT about a month ago...it moves so slowly and, in my opinion, doesn't seem to be addressing the big issue...getting him to eat.  I have just finished reading Eva Musby's book and it feels right.  His Mother has agreed, as has my Husband (we all live together) that I can do this, and I have spoken to our Psych as well.  He just cautions that we have to be calm and compassionate.  I am the primary care giver for this wonderful tortured little guy, and also the primary "researcher" on his PANDAS/PANS eating restriction.  Thanks to the help I received from this forum in Oct, I have been able to sneak oil, butter and whole whipping cream into his foods and so his weight loss has been minimal (well...there has been no  growth...so considerable but he is still on the growth chart, albeit at the 2nd % now)  But...he is now restricting more and facing anxiety that is so cruel...so...I want to start the FBT at home...based on my reading and videos...with some support (but not a lot I don't think) from the Clinical Psychologist we see.  My question, I guess, is...do you think it will work?  His restriction is theorized to be OCD based (I'm fat, I can't eat)  he suffers terribly multiple times a day related to eating.  Currently he eats only breakfast and dinner...he did snack sometimes in the evenings but has stopped almost two weeks ago.  I feel we MUST move forward IF it will work...thank you for all that you do
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miam
Hi mema, I am not familiar with PANDAS/PANS but it sounds to me like your grandson is exhibiting symptoms of RAN so I will share my experience refeeding our 7yo son. Started restricting and compulsive exercise in December. He was diagnosed at the end of February, we started refeeding in March. He is now WR and making great progress with tackling fear foods. So yes I think it will work. You should start taking control of all his meals. Do not allow skipped meals/snacks. With little ones the concept of "magic plate" works well. Keep him out of the kitchen while you cook. For meal time w
e followed Eva Murphy's tips from her videos and book and it worked really well for us. Of course you should prepare to face great resistance. It will be tough. We got food thrown all over the kitchen walls, huge anger outbursts, a lot of despair at the beginning. After a couple of weeks it became easier. Our mantra is keep feeding. Never, ever, skip a meal or snack. Cut back on the exercise.
Chances of full recovery are very high at this age. This is what I keep telling myself when things get tough.
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mema
Hi miam.  Thanks so much for your response. I'm so sorry your son (and you) went through that :-(  Good for you for being so pro active and getting on it!  Wow, weight restored in 2 months!  I have to look up what RAN is...:-)  Theoretically, if we could get his PANDAS/PANS into remission then there would be a good possibility that the eating restriction would abate, but we have had no luck with that (and it took until Dec to get a diagnosis and the help we needed with that...another story)  We will begin tomorrow (we have company today and...so) and I will be as strong as a rock and gentle as a lamb...I hope.  It's already tough. At least the tough will be with a goal of relief...so perhaps easier to bare

Thanks again.

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Foodsupport_AUS
Welcome back mema. There are a few parents here who have reported a primary diagnosis of PANS/PANDAS.  I think the important thing is to remember that the behaviours your grandson are showing are the same as anorexia nervosa (RAN is restrictive anorexia nervosa to distinguish from binge purge anorexia nervosa BPAN). Much of his anxiety and mood will be exacerbated purely by the degree of dietary restriction - there are numerous studies that show the worsening of mood with severe restriction. As such the first treatment should be food, food and more food. Treating him for a bacterial infection/inflammation will never overcome his malnutrition. As such feeding him as per FBT is by far the most logical thing to do. 

The little research I can find about management of PANS/PANDAS all includes treating the malnutrition as well as the infection, it often does not resolve by itself. This is a recent review article https://pdfs.semanticscholar.org/d6e2/d1fb8a788e6d50805bc338507993356c9dcf.pdf
D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
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mema
Thank you Foodsupport_AUS. I appreciate the link (I've got it, actually).  I don't know what happened...how we got stuck in waiting to help this poor little guy with treating the eating disorder...part of it was a lack of family unity on the direction/diagnosi and a bunch of hooey...part of it is head in the sand, part of it expecting the next treatment would resolve the whole mess and make it go away.  Regardless, we're here now, united as a family and armed with the tools (books, videos, and this group) to move forward.  

I think I'm going to need you a lot. I'm reading a lot of the past posts looking for tips/clues/input.

I'm frightened

Thank you
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jsrachels
Hello - I'm sorry you are going through this.  Our son was diagnosed with PANDAS a little over 2 years ago.  He was hospitalized for 2 month (in a ED unit) where he was weight restored.  He was counting calories and weighing himself daily but also showing "not typical" symptoms (general weirdness, almost autistic like).  Although his ASO/DNASE level were very high after 3 back to back strep infections, they did not acknowledged PANDAS. They they did get him WR and for this I am gratefully (as I felt that this was the most important factor in his recovery).  The longer the brain is staved, the longer the recovery and even if it's only a month, brain recovery is VERY LONG.  They told me it was more due to OCD/Anxiety rather than typical anorexia.  Afterwards we did FBT at home, as well as pursued the PANDAS diagnosis and treatment which we did get immediately upon release as I had been working on getting him in to see a PANDA specialist while in the hospital. I believe the recovery has to involve both getting him to eat right away as well as getting treatment for PANDAS.  He was on antibiotic for a year and we had his tonsils and adenoids removed.  Two years later his strep titiers are finally within normal range (he has not had strep since).   He is doing really well and even tells me how his loves certain food, but it has been a very long road and our family suffered greatly.  He takes 20 mg Prozac daily now which seems to help and was a life saver in the hospital.  I literally saw the body dysmorphia melt away once he was put on it.   He is also on Adderall for ADHD which also seems to help.  He has had strep too many time to count and his OCD has waxed and waned since birth.  We never put the pieces together until right before he had to be hospitalized.  Prior to this he was doing really great and had not had strep for 2 years.  Then, the OCD, headaches, vocal tics, stuttering, baby talk,emotional liability, and general "weirdness" started. Then came the back to back strep infections. Regardless of the cause, FBT does work.  but, if it PANDAS, I would suggest find a doctor willing to monitor for ASO, DNASE, Mycoplasma, TGFB1, & vitamin D at least every 3 months (This is what we do).  If you child does get strep (or Myco IGG/IGM) treat with antibiotics for longer than the usual 10 days when a infection occurs (as well as ibuprofen) and be sure and take a good probiotic daily (up the dosage when he on antibiotics).  I also give him turmeric and vitamin D for inflammation, as well as fish oil (which also seems to help).
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Mamaroo
mema wrote:
  I have just finished reading Eva Musby's book and it feels right.  His Mother has agreed, as has my Husband (we all live together) that I can do this, and I have spoken to our Psych as well.  He just cautions that we have to be calm and compassionate.  I am the primary care giver for this wonderful tortured little guy, and also the primary "researcher" on his PANDAS/PANS eating restriction.  Thanks to the help I received from this forum in Oct, I have been able to sneak oil, butter and whole whipping cream into his foods and so his weight loss has been minimal (well...there has been no  growth...so considerable but he is still on the growth chart, albeit at the 2nd % now)  But...he is now restricting more and facing anxiety that is so cruel...so...I want to start the FBT at home...based on my reading and videos...with some support (but not a lot I don't think) from the Clinical Psychologist we see.  My question, I guess, is...do you think it will work?  His restriction is theorized to be OCD based (I'm fat, I can't eat)  he suffers terribly multiple times a day related to eating.  Currently he eats only breakfast and dinner...he did snack sometimes in the evenings but has stopped almost two weeks ago.  I feel we MUST move forward IF it will work...thank you for all that you do


It's a good thing that you have read Eva Musby's book. It is an excellent place to start. A lot of books are written for teenagers and girls, so it's hard to find good resources for the young boys.

We refed with a meal plan, which was placed on the fridge to lessen anxiety. The meals were consistent and presented at the same time every day for months, including weekends and school holidays. All activities were arranged around meal times. Later my d was able to eat in the car, so that made going out a bit easier.

Have incentives in place, such as play time on the xbox/playstation/ipad after he is able to finish his meal. Initially we gave the incentive when my d was able to eat more than the previous day. It took 7 week to my d to follow the meal plan. When he is not able to eat the meal you prepared, don't substitute it with other food, rather substitute it with a liquid supplement (ensure plus). Otherwise he will always substitute the meal with something less and he will be constantly calculating in his mind what is less. Take the choice away from him to lessen the anxiety.

Deenl,one of the moderators, has a boy who was refed. Here is a link to her post: https://www.aroundthedinnertable.org/post/the-super-resistors-when-lsuye-and-magic-plate-cause-total-shut-down-8122350?&trail=25#gsc.tab=0

Good luck with refeeding and 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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mema
Thank you so much Mamaroo for your tips. I'll read the posts from Deenl..I'm so pleased for you and your daughter that you have successfully brought her home to her sweet self.  I can use all the hugs and tips I can get. Today was day 1...daunting to say the least...
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mema
jsrachels wrote:
Hello - I'm sorry you are going through this.  Our son was diagnosed with PANDAS a little over 2 years ago.  He was hospitalized for 2 month (in a ED unit) where he was weight restored.  He was counting calories and weighing himself daily but also showing "not typical" symptoms (general weirdness, almost autistic like).  Although his ASO/DNASE level were very high after 3 back to back strep infections, they did not acknowledged PANDAS. They they did get him WR and for this I am gratefully (as I felt that this was the most important factor in his recovery).  The longer the brain is staved, the longer the recovery and even if it's only a month, brain recovery is VERY LONG.  They told me it was more due to OCD/Anxiety rather than typical anorexia.  Afterwards we did FBT at home, as well as pursued the PANDAS diagnosis and treatment which we did get immediately upon release as I had been working on getting him in to see a PANDA specialist while in the hospital. I believe the recovery has to involve both getting him to eat right away as well as getting treatment for PANDAS.  He was on antibiotic for a year and we had his tonsils and adenoids removed.  Two years later his strep titiers are finally within normal range (he has not had strep since).   He is doing really well and even tells me how his loves certain food, but it has been a very long road and our family suffered greatly.  He takes 20 mg Prozac daily now which seems to help and was a life saver in the hospital.  I literally saw the body dysmorphia melt away once he was put on it.   He is also on Adderall for ADHD which also seems to help.  He has had strep too many time to count and his OCD has waxed and waned since birth.  We never put the pieces together until right before he had to be hospitalized.  Prior to this he was doing really great and had not had strep for 2 years.  Then, the OCD, headaches, vocal tics, stuttering, baby talk,emotional liability, and general "weirdness" started. Then came the back to back strep infections. Regardless of the cause, FBT does work.  but, if it PANDAS, I would suggest find a doctor willing to monitor for ASO, DNASE, Mycoplasma, TGFB1, & vitamin D at least every 3 months (This is what we do).  If you child does get strep (or Myco IGG/IGM) treat with antibiotics for longer than the usual 10 days when a infection occurs (as well as ibuprofen) and be sure and take a good probiotic daily (up the dosage when he on antibiotics).  I also give him turmeric and vitamin D for inflammation, as well as fish oil (which also seems to help).
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mema
jsrachels, I am so terribly sorry your son has this absolutely despicable disease.  How wonderful that he has you for his bear mom.  I wish you the utmost luck on your journey to wellness and congratulate you on getting him weight restored.  gosh.  what a journey.  Our guy presented with strep in 2014/2015, got antibiotics and all the symptoms went away for almost 2 years.  When he presented again in Oct of 2017 with the eating restrictions he was strep neg and I had a hard time then to find a doc that would look at him for PANDAS/PANS.  We kept getting referred to psych :-(  We ended up going out of network to find a P/P friendly doc who recognized his P/P and has been helping us with treatment.  He has never tested positive for strep since 2015...so we don't know what the trigger is/was.  He is Myco IGG/IGM neg, ASO & DNASE neg. D is wnl (but we supplement)  I'll look up TGFIB.  We are waiting for labs now for other co infections (lyme, yeast, etc)  He gets NAC, D, C, multi vit, omega 3, theanine, CBD.  Our doc is a peds neurologist, wonderful, caring and gently but..P/P friendly rather than "expert".  We are on Amy Joy Smith waiting list...I don't know if we'll go with her if/when she calls...regardless, today was day one with FBT for re feeding at home.  It went pretty well but was heartbreaking for both of us.  I wish you, your family and your son a peaceful heart...
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mema
Ok...day two of re feeding hell!  OMG, I can NOT believe I have to put this sweet child thru this 4-5 times a day!  Incredible!  He raged for hours yesterday after putting one tiny piece of bread in his mouth at "lunch" (his first "lunch" since Dec) and woke this morning into a rage over his regrets :-(  So terribly sad.  Breakfast went ok once he was calm and had a bit more time...as he always has been 'allowed" to eat breakfast.  But "lunch" was beyond despicable.  Screaming for someone to help him. Begging me to allow him to have one day without being tortured...it took an hour for him to come to the table...and I called that a victory.  I know, some would have required he eat...but I just don't think that he could have, regardless of how long we sat...and for that I mean "stood" as he does not sit.  I can't believe the pain...and I can't believe that I have to put him thru this again in a few very short hours...

My question...should I start a new thread about the re feeding, or will I get the support that I am needing from this one???
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debra18
Can you describe why he is afraid of eating? Fear of choking, stomach aches, gaining weight? What does he say when you require him to eat? Are there some foods he is less afraid of? Is it easier for him to drink? Can you require him to drink high calorie things like milkshakes? Can you use distractions like reading him a book?
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mema
He is afraid of getting fat. He will eat breakfast (now smaller than two weeks ago) and dinner. He ate snacks after dinner until two weeks ago. (Cereal bars) He will only drink water, milk in his cereal (spiked with cream). I allow anything at th table that will work...tv, iPad, anything. When he is eating g breakfast or dinner there are rarely any problems. He ‘checks’ his tummy but usually just eats. Sometimes he needs a break outside, but mostly just eats. Yesterday and today putting lunch in front of him sends him into terrible fear/crying/begging. Yesterday he did, as I said, manage a tiny bit of bread but sufferd terribly from it. Today it took an hour to get him to just stand at the table. So, his fear is ALL food other than breakfast and dinner. Oh...edited to include sugar and fats. Absolutely NO treats or anything considered to be a treat. Sugars have to be ‘natural’ (honey and syrup are ok). I tell him all sugars are natural as they all come from cane. Now we try to not answer ? about sugar/fat etc but it can put him into a rage...It’s all so terribly sad...
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debra18
Did you watch Eva Musby's videos? The one about getting your child to eat with trust is especially helpful. I use the word trust often with my daughter and it really works. "Trust me it's good for you." Maybe the TV can be incentive if he finishes eating lunch and use something else to distract him while he is eating. Did you set up a schedule of eating 6 times a day? Start with foods he considers healthy just to pack in the calories. If he eats better in the morning add a high calorie drink in the morning like hot chocolate, smoothie, or milkshake. You can start with ingreditents he considers healthy. Chopped nuts are something that can be easily added and have a lot of calories and fats.
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mema

Thanks debra18, Yes, I 've watched all of Eva's videos, some of them a couple of times.  I have her book as well, with it tabbed to the sections I am needing every minute it seems.  Here's the problem...I haven't yet (day two) been able to get him to eat lunch, any, much less finish it.  One small bite of bread yesterday, today it took everything he had to come stand at the table.   I am also using the helpful tips from Eva about what to say...You can trust me, I won't give you more than you need, Are you frightened?  I'll stay with you, you're safe, you can trust me, I know what you need....etc etc....Yes, we have a schedule (we have always had a schedule, as even as a tiny little guy he has done best on a tight schedule, so I am the queen of schedules...and he will  not drink milk, smoothie or shake or chocolate or peanut butter or..anything other than water...as those are "treats"...and forbidden. My current goal is to get him to eat lunch, and two snacks.  Once he eats a bit for lunch and snacks I'll work on adding in forbidden treat foods...I pack everything with as much calories as I can...he does not refuse any  "food" that isn't "treat" so, like for breakfast or dinner he's good...it's just not enough to sustain him.  I will add nuts...those can go in pancakes and if just put on his plate he may eat them (as he does with fruit). I forgot about nuts... 

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mema
So...i see from reading a lot of the posts that some choose to have 3 means and 2 snacks.  Even Eva Musby says that is ok. :-)  I was wondering if it would shoot myself in the foot if I chose to have the two snacks during the day, and allow the evening to be peaceful (well..at least not set off by me calling out the beast with a snack) so that he is able to perhaps get to sleep at a reasonable time.  Last night, we did a snack and it was terrible for two hours after that and so he wasn't asleep until after 9pm...

So, breakfast at 8, snack at 10, lunch at 12, snack at 2, dinner at 5?  What schedules do you do???

ok...excuse my wimping out.  I'm just frightened and terribly sad to see this little guy get punished to terribly...I know that to get to the other side we have to go through...I can do this...surely I can get through day 2!  ok...I'm good.  thanks (gosh, what a goof I'm looking like...
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Mamaroo

Hi Mema

Well done on starting to refeed! I know it is very hard, but if you stick with it, it will get easier and you will have your dear grandson back.

We have 3 meals and 3 snacks (breakfast 7am, morning tea: 10:30am, lunch 12:30pm, afternoon tea 3:30pm, dinner 5:30pm and supper 8:30pm). You can do it with 3 meals and 2 snacks and Kartini clinic has 3 meals and 1 snack, I've attached their meal plan for you.

If you were able to have a snack after dinner last night, I would continue with it. It will be all tears the first week or so, but afterwards it will be easier and he will be able to finish it in under 20 minutes. Also the snack after dinner (supper) goes straight to weight gain :-)

We had a very hard time just getting d to the table and eat. She could not eat with the rest of the family and had her meals in her room with me supervising. She also struggled with a sandwich and was only able to take a very small bite the first week. After another week she was able to have a quarter, then a half and so on until she was able to eat a whole sandwich. The deficit was usually made up by taking an Ensure Plus.

It took my d 7 weeks to be able to follow the mealplan. At the very beginning, we just tried to get more in her than before and to get her in the habit of having meals again (she only had breakfast), even if it just means sitting there and taking a single bite or sip. It is very hard on them. My d cried the whole day, but today she can't even remember those days and is living a life of a normal teenager.

My d also body checked, so I bought clothes in a size, which would fit her and one size up. After a month of weight gain I just replaced her clothes with larger sizes (labels cut off) so that her clothes fit looser and the weight gain won't be so noticeable to her.

You are already doing a great job, just keep on swimming and it will get easier!

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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jsrachels
What you are experiencing is very typical. You are confronting his fear and this will be the hardest part.  It does get easier,  but it is HARD and it effect every aspect of your life.  Stay strong! There is no shame in seeking help and if your PANDAS friendly doctor affiliated with a local hospital with ED clinic you may want ask about admittance.  Likely they will not accept him due to his young age.  But, it might help kick start his recovery.   Even if he/she is not affiliated, you might want to consider it.  Another option, if your doctor is willing, is to try a steroid, or even ibuprofen every 6 hours to treat any brain inflammation.   It's not a cure but, if it helps, it will help prove the PANDAS diagnosis.  Talk it over with your physician.  We never did this with my son but it wasn't really an option since we did not get a diagnosis until we were released.  Like I said, the reason "why" is not as important (In my opinion) as getting him re-fed.  You are doing great and no one will advocate or work as hard for your son's recovery as you.

Hopefully you and your doctor have read these:

https://home.liebertpub.com/news/revised-treatment-guidelines-released-for-pediatric-acute-onset-neuropsychiatric-syndrome-pans-pandas/2223

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mema
Hello Mamaroo, and thank you for your kind tips. I so appreciate your input.  I'm so glad to hear that your daughter doesn't remember this horror.  I did indeed provide a snack this evening (your supper) and he just looked at it and matter of factly stated that there was no way he would eat it as he would go crazy in the morning like he did today.  He's so stinking smart. I encouraged and all of that but he wasn't having it.  He didn't recoil from it or cry...just steadfastly said no way.  Tomorrow is another day.  I know that I must push through and will stick with the 3 and 3 and...hope tomorrow I can get him to have a bite of lunch or snack.  Its been quite some time since he's had any lunch :-(   I have looked at the Kartini plan and have printed it.  Thank you.  Generally breakfast is just the two of us, and dinner has rarely been a problem (it has been 'allowed")  My fear is that the OCD/ED will stop that as well.  It's the lunch and snacks that have been taboo and are the big issues, at least for now.  I'll bang on them with a vengeance.  Poor me, poor him, ohhh...poor him.  I'll cry on this page frequently I'm sure as my resolve waxes and wanes.  We shopped day before yesterday for new summer shorts with elastic waists...but change is hard for him so I'm not at all sure I will be able to get him in them.  He has sensory issues on top of it...so that complicates everything.  I did, today, let the adjustable waist of his little jeans out one button each side, so hopefully that will help with his anxiety and checking. It's viscous.  

jsrachels, thank you for your post.  Unfortunately there is not eating disorder clinic near us, but we are in central Ca so Oregon is not to far (Kartini) and San Diego a few hours further south (I believe there is one there??)  We have tried steroids, in the beginning, with no noticeable effects, but certainly worth another discussion with the doc.  Ibuprofen is my best friend, along with CBD, D, C and NAC as well as Benadryl.  The P/P diagnosis is not in question.  And yes, I agree that it doesn't matter if its OCD, ED or BFD, the issue is that he needs to eat, and the treatment is the same.  Food.  OCD will cry as loud as ED but you beat them both with...food.  And yes, thank you, i have a copy of the guidelines in my binder (daily journal of his struggle)  

I so appreciate your support.




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Torie
Welcome back, mema.  Your family is super lucky to have you.

I wonder if it would help if you spoonfed him like when he was a toddler.  I was skeptical about that, but it really did help my d during the worst of times.  (Don't ask; just pick up the spoon / fork and go for it.)

Another tip I learned here is that if you wake him up an hour or two early, you might be able to get an extra snack in, and then he can roll over and go back to sleep until normal wakeup time.  (ED often gains strength during the day, so it makes sense to take advantage of those early morning hours.)

It is so godawful counterintuitive to require our kids to eat so much more than ED tells them they area allowed.  Yikes.  But really, the faster you can get his weight up, the kinder you are being.  As WC said so well, "When you're going through hell, keep going."  

I have to say it concerned me to read that he sometimes needs to take a break and go outside.  I hope this is supervised?  As you probably know, it's really important to make sure ED doesn't find any opportunities to start purging.  I followed the good advice I received here and told my d she needed to use the bathroom before each meal / snack so that she could stay with me at least an hour after every meal.  

I'm pretty sure you know this, but the more important thing is getting enough calories in.  It's okay if he says he hates you (he will be his normal nice self again when weight restored) and it's also okay if he yells, screams, cries, pleads, whatever.  As long as he eats enough, nothing else matters (well, almost nothing else). 

Sorry this message is so haphazard.  I just remembered another idea that might possibly help and that is to let him pick a video or TV show to watch during the meal ... if he delays too long between bites, you turn it off.  He eats the bite and you turn it back on.  Lather rinse repeat.

So sorry you are stuck battling this vile illness.  Please know we are with you in spirit.  xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Torie
P.S. I wonder if you could / are encouraging tiny baby steps toward eating lunch.  'It's okay - we aren't going to worry about eating at lunch today; you just need to sit here with me for a few minutes."  and next "...You just need to cut the food into two pieces." and next "you just need to taste the food" "take one bite" "take two bites" etc.

Keep swimming. xx

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

Welcome back, so sorry you have to be here.  I recall your post under your previous name.  Congratulations for getting your family in the boat (as the lovely Tina says).  Your little guy is lucky to have you.

I'm just wondering if you might try smoothies for one of the snacks?  It might be a little easier for him as it seems more like a drink?  If he finds them less daunting, it would be a great way to get lots of calories into him.  As you may have seen, smoothies come up quite often here, so a search should yield lots of results!  If not, we'd be happy to give you some ideas.

Good luck x
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mema
Well, I am here to say...I couldn't do it.  I just couldn't do it.  It was so so so terribly sad and I could't breathe, or sleep, and my daughter (his Mom) would go outside and put a pillow over her head and my dear sweet husband (75yr old) would sit and weep while I was supporting our sweet little guy to try to come to the lunch table.  By day three he managed to stand at the table for 2-3 minutes and eat one snack (that his OCD/ED had already consented to but punished him for terribly non the less)  His fear and pain were more than i could bare....And so...and so I am hoping beyond hope that there is a more gentle way to get there...We met with our PANDAS/PANS doc yesterday and discussed this, at length as I am terrified for this little guy right now as he continues to restrict more severely and suffer anxiety seemingly non stop (he had to come home from school today for the first time as he was on the floor in fear/pain as he was around cheetos and feared the dust got in him...so so sad!)  I am researching other options and we are looking at getting IVIG done in a timely manner, (which could put his P/P in remission and nock the OCD/ED to the curb...)but in the mean time I am being loving and kind and gentle and...frightened.  I may very well end up back with FBT but in order to do so I will, I think, need support from...I don't know who...

I'm in central Ca...and I will go anywhere...see anyone...any one have any suggestions?  i am calling Kartin Clinic tomorrow, and the Kaiser ED clinic (his insurance is Kaiser but they don't treat P/P so we have gone out of network for his care)...any ideas?

But I thank you.  You are an outstanding group of caring compassionate carers, and I so appreciate everything that you do. So much compassion, so much time that you give. Such a wonderful and desperately needed service.  Angels, each and every one and this weepy grandmother thanks you

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mema
Oh...hopenz...no smoothie as he will not drink anything other than water, and the milk in his cereal.  

and Tori, thank you so much.  I remember you well from Dec.  When he goes outside someone goes with him.  Usually he needs to swing to "reset" and spin (a rope swing...it has saved us many a time) I love the baby steps advice, and will keep it in my tools.  I still offer snacks and he does eat everything that i put on his plate for dinner.  If its not a "treat" he'll eat it..a good variety of foods so I am pretty good at hiding oil, butter and cream in his meals.  and if I can get One snack in him, much less an extra,  I will dance a jig and post it here!  I learned here when I visited in Dec to turn the iPad/tv on/off with bits and I do that...but generally, as he is "permitted' to eat breakfast and dinner, it's usually not a problem.  He talked this evening as he was getting ready for bed how much he looks forward to breakfast...

Anyway, thank you.  of to search for a more gently approach or someone else to do this for me!!! Ha!!

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Foodsupport_AUS
It may be that if you are unable to move things forward, the kindest and most appropriate thing may be to consider tube feeding. Remember his malnutrition will be making his ocd symptoms much worse and is threatening his health much more than the ocd itself. It is truly heart breaking to put our children through treatment that they find distressing but just like chemo for cancer, we don't really get a choice in this. 
D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
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