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Garden
I feel stuck. Daughter is 13, with severe PANS (getting treatment by neurologist) and the PANS is the basis for her anorexia and orthorexia/OCD-type restricted eating.

There was a 6 day hospitalization, which was a waste, and step-down to a not very helpful dietician (which was too big a step, to be honest).

We switched to a much better dietician. Weekly hour long meetings with a blind weigh-in, 30-40 minutes of basically talk therapy about food with her, then the remainder of the hour with just me. She gained a bit of weight, but has stalled out twice. We added a Maudsley therapist who is aggressive and makes daughter feel bad. I know she's supposed to be very successful, but I'm not sure it's a great fit. Unfortunately, daughter has extreme social anxiety and group therapy is her nightmare, so intensive outpatient or partial hospitalization with various group therapies all day isn't great either.

She has had extreme stomach pain that has interfered with eating. She had extensive GI work up months ago, and dietician kept saying it was pain from refeeding, but she's eaten about 2000 calories for two months then we moved to about 2400 calories for two months, so that didn't make sense. (I know I need to increase, but she's been failing to complete dinner / evening snack lately due to excruciating pain). By the way, I kept saying the pain started before the restricted eating, but no one really heard me.

I finally pushed her GI for an x-ray, and sure enough, she has a "tremendous" amount of retained stool. So mad that no one really heard us when we reported the pain. We are doing a cleanout right now. My hope is that we make good progress once the stool is removed. 

How do I move forward? She needs to be able to travel for IVIG every month (two travel days, two infusion days, and multiple days of recovering from severe spinal headache + nausea afterward). Not sure what kind of program would allow this (not to mention insurance). 

Btw, my younger daughter also has PANS and is housebound from it, so my emotional/energetic resources are stretched thin.
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debra18
I can only tell you about my own experience. You can take from it what you want . I also suspect my daughter's AN was from some kind of infection. She was 11 when she became sick. She was always thin and ate little and easily became full or had stomach aches. Than one day she stopped eating all together (was eating less than 300 calories a day and only two foods). She was crying from stomach pain all the time. She developed all AN symptoms . Was completely withdrawn and depressed. I found resources about refeeding and refed her myself with monitoring from ped.  For about 4 months she was crying from stomach pain all the time. She developed all classic AN behaviors like standing and spitting. But over time with supervised eating 6 times a day she improved. Two high calorie drinks a day helped (she still needs them) so she doesn't need to eat huge quantities of food . She eats all foods now but still cannot take one extra bite than what she needs. What you described with retained stool happened to my daughter too. I think it's called delayed gastric emptying and is very common. It improved over time but took a long time. 
I recently went away on vacation and my daughter stayed with a classmate. She said she loved the mother's sourdough bread. I want to try to make it. I think it helps with digestive issues. I don't know if anyone else used this? 
Again this is my experience. 
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tina72
You say the PANS is treated by a neurologist. That is interesting for me as here that would do a GP (a neurologist could not subscribe intense antibiotics that are needed with PANS here). Is she treated aleady with antibitotics and is the PANS infection done now? Is she seeing a PANS specialist? I know they are rare...

All you describe, the OCD, the social anxiety, the belly pain, the digestive problems are very common with AN. Many patients have that pain during refeeding because the stomach is not used to this amounts of food and a lot of patients suffer from constipation. Is she drinking enough? Did you already try to add magnesium and vitamin c for supplement? This helped with constipation here, too.
I can only say what Debra already said. We saw all these problems here, too (without PANS). It is normal AN problems and in most cases it gets better with constant feeding and time.

What is IVIG?

"30-40 minutes of basically talk therapy about food with her"
I do not really see what this should help with. Does she have fear food? Does she eat better after that talk?
Nutritional rehabilitation is in many cases more important than any therapy. As long as her brain is malnurished she might not even understand that she is sick.
Keep feeding. There is light at the end of the tunnel.
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debra18
I would want to know how successful is this ivig treatment? Did you speak to someone who had a child that recovered from it? There is a doctor near me that treats pandas but I didn't hear of anyone that had a child that recovered as a result.
Also I wanted to say my daughter also had social anxiety. This surprisingly improved with refeeding.
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mtkmbc4
I can’t speak to the PANS/PANDAS but I think it’s important to have disease related causes of abdominal pain investigated (as your doctor did when constipation was discovered)

Its also important to know that not all pain has an underlying disease as the cause. What I mean is that migraines do not have any abnormal lab tests or brain images and chronic abdominal pain (or leg pain or any other sort of pain) may not have any identifiable abnormality as the cause. The brain perceives pain for many reasons including anxiety and other reasons. The pain is real, not imagined, not faked. The very same parts of the brain responsible for registering pain of appendicitis are firing when people experience abdominal pain due to anxiety, it’s just that the signal that triggered the abdominal pain did not originate from injured tissues in the intestines.
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atdt31_US

Garden -- sorry you are dealing with all of this, especially, to some extent, with two kids at the same time.  Ultimately, you ask "how do we move forward" -- it seems you answered your own question.  You know she needs to clean out and you know she needs to keep consuming enough calories to gain weight and you want to have her available for IVIG treatments.   That is a lot, but it does not seem there are any you can omit (of course, IVIG is controversial .... but if you are solidly in the camp of believing your d has PANDAS and that IVIG is right for her, then you need to find a way to keep those treatment appointments). 

So .... how to meet all those needs ...
1.  Clean out.  Good for you if your D13 will do this ... how are you doing it? There are many ways, and should be guide by your GI to make it as tolerable as possible (some are large volume, some small, some quick and more crampy other slower but take longer, et).  If she will do it the way your GI has ordered, consider yourself ahead of the game and let it work its magic.  
 
2.  You need to KEEP her cleaned out, however.  What has the GI recommended for after the cleanup and did she have any laxative regimen prior to this backlog?   If no prior laxative, perhaps a daily cap of Miralax will suffice.  The goal is at least one movement per day, and preferable of apple sauce/soft serve ice cream consistency.  If you do nothing, she will slowly back up again you will be right back where you are.  Stay on top of it starting immediately after the clean out.  There are other options if she won’t take MIralax … and my kids have in fact needed more than 1 cap sometimes …. my kids have been on daily laxatives for over 11 years.  Truly.  Some bodies need the help.  Yes, it can be an AN thing, but it can also be its own thing.  Either way, unless your GI says otherwise, you should plan on a year or more of helping her stay cleaned out. Again if she will take, and does well on Miralax, it seems to be the "best" option out there.  
 
3.  Food …. Keep feeding high calorie/small footprint.  I would resist advice to add fiber (has never once helped with my kids and many in our boats say it causes greater discomfort, feeling of fullness, etc).   Can you add in a daily drink …. I give my d about 8 ounces of “shake” every morning …. 1/4 container of 28 ounce Haagn Dazs container, melted in fridge over night.  Combine with 30 grams melted peanut butter (or peanut butter sauce right from tub) and 1/4 cup whole milk. This makes a thick milk with over 500 calories in a small footprint … Would your d drink one of those first thing in the morning or last thing before bed in addition to the other things you’v been giving her?  An extra 500 calories per day (one of these) will result in 1 pound gain per week (assuming other intake and exercise stays consistent).  
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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atdt31_US
debra18 wrote:
I would want to know how successful is this ivig treatment? Did you speak to someone who had a child that recovered from it? There is a doctor near me that treats pandas but I didn't hear of anyone that had a child that recovered as a result.
Also I wanted to say my daughter also had social anxiety. This surprisingly improved with refeeding.


As with all things PANDAS/PANS, there are not absolutes.  IVIG has reportedly helped tons of kids.  Of course, some doctors say it was not the IVIG so who knows.  This whole condition is very much in flux in the medial world ... very compelling studies and articles can be found on both sides of the issue.  Ultimately, if you think your kid fits, and a doctor is willing to run a treatment program for it, and if you have lots of money and can tolerate the risks some of the treatment protocols have, you might find yourself wanting to do the treatment "just in case."  That is actually where I am, although still in initial phases. But unfortunately, there is no definitive test to say "yes" this is infection-based or even "no" this cannot be infection-based. So the actual diagnosis is controversial.  And almost every prong of the treatment is also controversial, even assuming everyone agrees on the diagnosis. So.... in case you thought the ED world was filled with practitioners who believe or practice differently, PANDAS is that, on steroids.    Tons of great info out there on ivig if you want to read ..... I think all the reading in the world, as of today, will lead to a question mark ... but I suspect within three years more studies and peer review will help provide a more definitive answer on both PANDAS diagnosis and the proper way to approach treatment.

editing to add link to recent article re PANDAS...  https://www.jpeds.com/article/S0022-3476(18)30589-4/fulltext
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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mtkmbc4
Thanks atdt31 for directly but sensitively summarizing the state of scientific and medical affairs when it comes to PANDAS/PANS. I am big on evidence based treatments but there are so areas in which we just don’t have solid evidence one way or  the other. Educating oneself on the risks (and potential benefits) of unproven treatments is important. Among the risks are not only direct harm but loss of time and money pursuing other treatments. There are no easy answers and we each do the best we can for our children.
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Garden
Hi, re: IVIG.  In the US, severe cases of PANS are generally treated by neurologists, the issue is neuro-inflammation. Her case is really a cross between PANS and AE (autoimmune encephalitis). She has an abnormal clinical neuro exam, abnormal EEG, and there is an abnormality on her brain MRI. Her neurologist is one of the top PANS researchers at Columbia University in New York, and was on the panel that wrote the clinical consensus on PANS treatment published in the Journal of Child and Adolescent Psychopharmacology. Antibiotics are one of three pieces of the puzzle in treating PANS. The other two are behavioral (including therapy, etc, best for mild cases or other cases post-treatment) and immunomodulation, which might be steroids or stronger treatments. IVIG is first line therapy for severe cases of PANS. Second line would be Rituxamab or a few other options. 
She is not yet responding (which the doctor expected - it is on the border between severe and extreme + late stage) to IVIG. We may move to second line treatments at some point.

I'll try to respond to a few other questions. No, she would starve to death before she drank a chocolate shake. Thick milky anything is out, and chocolate is out. Believe me, we started with a GI and testing for the pain back in November, but she couldn't come up with anything. Did ultrasound of organs, endoscopy, tried several meds. Said daughter wasn't eating enough for it to be constipation [um, wrong]. Daughter has history of severe constipation, but we moved, so she sees someone else now.

She can't currently eat everything I give her, due to pain (she had been eating it all). We had been adding more every couple of weeks. We hit a wall, due to pain, in adding more, and then she started to backslide, re: finishing. We already do three meals, two snacks, and one snack we've gotten up to about 525 calories. 

She is cooperating with the cleanout, but of course, she is using black tea, not Gatorade.  The GI worked with us so that she could continue eating, though not under ideal circumstances. My other daughter is on a clear liquid diet for the cleanout, but that was unacceptable for anyone with an ED.
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Garden
mtkmbc4 wrote:
Thanks atdt31 for directly but sensitively summarizing the state of scientific and medical affairs when it comes to PANDAS/PANS. I am big on evidence based treatments but there are so areas in which we just don’t have solid evidence one way or  the other. Educating oneself on the risks (and potential benefits) of unproven treatments is important. Among the risks are not only direct harm but loss of time and money pursuing other treatments. There are no easy answers and we each do the best we can for our children.


Hi, yes, I understand. We actually have 100% medical coverage for this, because it was such a clear-cut case. Both kids were previously thriving, and now live very poor quality lives. Symptoms go way beyond behavioral. Trying nothing was not an option (and therapy was a hard fail - you can't talk brain inflammation away!)
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atdt31_US
What does she eat😃rink currently if a shake is out?  Adding canola is my go-to and you can get 120 calories from one tablespoon. Incorporates with vigorous stirring into MANY thing pretty invisibly ... yogurt; pudding; soups; pasta sauce. 

Tell us us what she does eat and we may have ideas to boost the calories of accepted foods. 
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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debra18
I am trying to understand your question and situation. I don't mean to sound disrespectful. Its my understanding that all cases of ED are due to brain inflammation and there is no evidence that talk therapy is useful in treating EDs. My daughter was also thriving and became suddenly very sick.
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Garden
debra18 wrote:
I am trying to understand your question and situation. I don't mean to sound disrespectful. Its my understanding that all cases of ED are due to brain inflammation and there is no evidence that talk therapy is useful in treating EDs. My daughter was also thriving and became suddenly very sick.


Hi, I was referring to the PANS. Some doctors think talk therapy is appropriate for the OCD, but it doesn't work if you don't treat the underlying inflammation/infections from the PANS.  I've never heard that all ED is due to brain inflammation? It isn't something our eating disorder clinic talks about.
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Garden
atdt31_US wrote:
What does she eat😃rink currently if a shake is out?  Adding canola is my go-to and you can get 120 calories from one tablespoon. Incorporates with vigorous stirring into MANY thing pretty invisibly ... yogurt; pudding; soups; pasta sauce. 

Tell us us what she does eat and we may have ideas to boost the calories of accepted foods. 

She drinks water and decaf tea. No other drinks. We do force a Kate Farm brand meal replacement - this was working with the dietician (as an ED clinic). She drinks 1/3 at breakfast, 1/3 afternoon snack, 1/3 evening snack.

Typical day:
Breakfast:
whole grain seeded toast with 1/2 avocado
whole grain seeded toast with fried egg
1/3 Kate Farm drink

Lunch:
Pasta with meat sauce. Lots of beef lots of added olive oil.
Cottage cheese.

Snack: 
4 tablespoon almond butter + grapes to dip in
1/3 Kate Farm drink

Dinner:
Large cheese burger on bun (two large thick slices cheese)
sautéed spinach with garlic + lots of olive oil
1/4 avocado

Snack:
4 tablespoons hummus + grapes to dip in
1/3 Kate Farm drink

Her fits about how much olive oil, etc, have increased recently.  Notices everything (she always has, but now she's on the watch for increases in food. There is a bit of variety in the meals, but she will not accept many foods. Her dietician has had her designate green/yellow/red foods as comfortable, difficult, and no @#$$%% way she'll eat them. We try to add in new "yellow" foods. 

She was eating the above plan well, and was gaining, but started shutting down with pain, so I'm really hoping this cleanout will help a lot. 
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Garden
debra18 asked what my question was. I guess it's - what do you see as my next step? Evening intensive outpatient, no matter the group therapy aspect? Partial hospitalizations (8-3), even though we'll have to pull out regularly for IVIG and travel? G-tube? Try harder with Maudsley? Switch therapists? Keep an open mind about making progress once cleanout is done?

She is medically stable, but very underweight. She needs 12 more pounds to WR, though at some point the ideal weight is a moving target. She is 7 pounds above her low point. 
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atdt31_US
Hmm. Couple thoughts.
1.  maybe add canola instead of or in combination with the olive oil -- less taste and maybe less detectable.

2.  can probably add canola to hummus.  120 calories per meal (1 tbl) gets you close to a pound a week (all other things being equal). I know you don't want to risk losing a trusted food ... but even a little oil in each offering can add up to significant increases over a day.

3.  Could you grind almonds or pumpkin seeds and incorporate that into the ground beef prior to cooking the burger patty?  Also, many hear oil or butter the buns (and the toast for her as well).  Could maybe hide some cheese in the burger patty too before cooking?  If the avocado is mashed rather than sliced, could maybe stir in a bit of oil.  

4.  The cleanup will hopefully help.  My d really does eat better when not backed up and it has taken many years to get to where we are now, which is very rare days where constipation can be pointed to as the main culprit to decrease eating.  

5.  You probably need to figure out how to add in another offering. If she has insight into the constipation, maybe you could sell her on either a smoothie type thing with spinach or other food she sees as helping with motility and add oil into that.  
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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atdt31_US
What is her height and weight now?  WhAt was high BMI before illness?  
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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debra18
It's very interesting. What did the ED team say causes ED? In the patients that have ED and not PANs they don't see the brain is inflamed? Does your daughter have body dysmorphia? I did not think my daughter did but some time after refeeding i found a note from her she thought she was fat and her when she tried to eat her stomach felt like a blob (that contributed to her stomach aches). Is that possible?
If your daughter does not engage in fbt can you go to the fbt therapist yourself and your daughter would not have to participate in the therapy? It sounds like she is being medically monitored anyway. 
My daughter needed 3000 calories a day to gain weight. Severe stomach aches and delayed emptying lasted at least 4 months at 3000 calories. 
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tina72
Here the digestive problems (constipation, stomach ache, blowing etc.) lasted about a year after WR. It is really common.

"No, she would starve to death before she drank a chocolate shake. Thick milky anything is out, and chocolate is out."
They all say that. If I had got an € for each time my d said she would never ever eat something again and did later I would be rich now.

"We already do three meals, two snacks, and one snack we've gotten up to about 525 calories."
Do I get that right, 525 in total??? That is dangerous low. Maybe tube feeding in addition would help here...

Keep feeding. There is light at the end of the tunnel.
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Garden
tina72 wrote:
Here the digestive problems (constipation, stomach ache, blowing etc.) lasted about a year after WR. It is really common.

"No, she would starve to death before she drank a chocolate shake. Thick milky anything is out, and chocolate is out."
They all say that. If I had got an € for each time my d said she would never ever eat something again and did later I would be rich now.

"We already do three meals, two snacks, and one snack we've gotten up to about 525 calories."
Do I get that right, 525 in total??? That is dangerous low. Maybe tube feeding in addition would help here...



Thank you for your reply. Sorry, no, 525 calories just for that one snack. I’m proud of that one, as it had been hard to get there. At her worst, when she was hospitalized, she was probably at 800-1000 per day. A sample day is listed above. 
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Mamaroo
Hi Garden and welcome from me as well. Just a couple of thoughts. My d didn't engage in any talk therapy during refeeding. Around 6 months post WR, her team provided a couple of appointments with a psychologist, who said she was fine. In your shoes I would continue with her medical appointments, and seeing the dietitian if you think it helps. 

During the early months of refeeding my d only had ensures and gained nicely on it. When we switched to food her weight gained had stalled. I figured, maybe I wasn't giving her enough or her body wasn't able to extract the calories as effectively from food as from the ensures. Long story short I decided to put her on a gluten 'light' diet, cutting out all the obvious gluten, for example gave her oats in the morning instead of weetabix and buying gluten free bread. The dr didn't think it would make a difference and she tested negative for gluten intolerance, but she started to gain weight, so I stuck with it. The gluten free bread was replaced with sourdough after I read that it had a reduced amount of gluten. Later on I baked my own bread and the amount of gluten was reduced by having the bread proved through the night (much cheaper than sourdough bread). Now she can eat normal bread again without a problem.

I would add a snack between breakfast and lunch, morning tea, just give her the same snack she is already having. The aim is to increase the calories, you can work later on variety.

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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