Pans/Pandas and Anorexia?

[DCmom2016]

Our 12 year old son was just diagnosed with PANDAS/PANS after being diagnosed with anorexia this summer (the anorexia was a symptom of the pandas, we learned). We discovered that it was not "just" anorexia because as the re-feeding process was underway without much resistance from him, a whole host of other symptoms arose leading to this diagnosis. His primary symptoms now are extreme anxiety/mood swings/rage in addition to some physical symptoms that the doctors have observed. Has anyone else had their child's diagnosis begin with anorexia and/or have experience with extreme episodes of rage, particularly targeted as hatred (to the point of phobia) for a parent? Thank you.

[LNN]

My DD 11 is currently struggling with Pans-induced anorexia and ARFID, in addition to scrupulosity OCD and intrusive thoughts. Because of the ARFID, re-feeding is really difficult and whenever we insist on introducing a new food, OCD rears its ugly head and her fear of throwing up makes her go thru three stages of fear = 1. Flight - her initial reaction to an anxiety situation is to try to flee. When we won't let her leave the table, she goes into 2. Fight - she fights like a trapped wild animal , physically and verbally. Then when she's restrained and becomes exhausted, she goes into 3. Freeze - where she'll curl up into a ball and cry. These are the three primal responses we all have to fear. She seems to need to go thru all three phases before she then becomes compliant and will force her way thru a new food that's causing her to gag on every bite. Once she gets it all down. that food starts to lose its power over her. The next day, it goes down a little easier and by the 4th or 5th day, she's ok eating it like she used to.

 

The rage you're seeing may be OCD related. Preventing a ritual, not giving into a fear, or being perceived by the OCD as a threat to its power will induce rage in many Pans kids. If one parent is more likely to stand up to OCD, I can see how that could induce an almost phobic avoidance or fear of that parent. I can't tell you how my DD's anxiety skyrockets as meal time (or clothes shopping) approaches, and since I'm the one who's most likely to not negotiate, I'm the one who bears the brunt of the fight phase of things.

 

You might like the book "Talking back to OCD" by John March - a good way to get some perspective for tweens and parents.

[Sirena]

Yes, we had anorexia along with rage and a host of other neurological symptoms (anxiety, liability, intrusive thoughts, minor motor tics, etc.). In hindsight, I wish I had plunked down the $ for Igenix testing and Moleculera Cunningham testing way earlier because after a year of PANDAS treatment with only marginal gains, we finally did them recently and found that he has an active Babesia duncani infection (tick bourne) and most probably has Borellia too (based on species specific indeterminate bands on Western Blots). He was also significantly elevated autoantibodies and CamKinase II on the Cunningham panel. So he has BOTH Lyme&Co-infecctions AND PANDAS. We have to get these infections dealt with before we are going to be able to calm the infections down...

 

Best of luck to you. Eventually I found that if I just put food that I knew he liked on a plate in front of him without asking him about it, he would eat/pick at it, but at least he would eat. If I asked him what he would like or gave him choices, he would shut down or just say he wasn't hungry. Good luck, its a tough road, but you will find the answers and help you need.

[emma1]

Would anyone have any advise to share regarding Anorexia and PANDAs, My daughter is 12 and has had PANDAS since around 3 when she was admitted to the hospital because she had serve tics and they were checking for seizures, the next episode was when she was 5 and she had almost every PANDAS symptom, since then we have had some flares and treated with antbiotics but nothing that has taken her life away from her. I was lucky to get in to the PANDAs clinic at MGH so I stopped following all the PANDAS information which was a mistake because now I am in a crisis and having a hard time finding the time to catch up while this is going on.

 

She had three strep infections in Dec, Jan, Feb and shortly after would not eat for days and then limited calories. We went to MGH and she is on clindamycin but after a week she still continued to lose weight and her primary diagnosed with anorexia. We are about a month in and the doctors treating the anorexia say we should be following family based therpay to get her better. We were able to refeed pretty quickly and easily but they keep pushing her to eat more to get back on her growth chart projectory. I fully understand this thought but I am also thinking if its the PANDAS can I just let her eat what she is comfortable with as long as she does not back track until hopefully this flare passes. The FBT is causing her to have rage and violently lashing out at me. In FBT they say they don't care how the anorexia came on and its all treated the same. I am afraid the anorexra talk engraves it into her thinking and I coming on too strong after only a month and she is now eating what she is comfortable with. I know anorexia behaviors have to be changed but could they change on their own without pushing to hard if this comes from a PANDAs flair.

 

Also wondering if anyone that has come out of this can share what worked, vitamins, antibiotic, therapy. I have not see the PANDAS doctor again yet but did speak to him and he said maybe a low does of zoloft but that scared me too.

 

Thanks so much for any help you can provide.

 

[bobh]

We haven't had anorexia - I am just picking up on one thing you were told "In FBT they don't care how the anorexia came on .. it's all treated the same."

 

I feel that the PANDAS diagnosis does make a difference in how best to approach. One size fits all sometimes doesn't - but it certainly is a lot simpler to dispense.

 

Yes the Zoloft is scary, but if you start really really low, it is much more likely to be fine. A dose of 2.5 mg for our then 10-year old worked so quickly and well, that the prescribing doctor didn't believe it st first.

[bws1565]

In our experience, anorexia (or very poor appetite) was caused by Low Zinc stores. Once we started zinc supplements, her appetite improved.

 

Zinc is the one mineral that supports the immune system. If it is taxed to the limit, it will cause a drop in appetite. In our case it was Lyme/bartonella.

 

We were using an excellent source of zinc in a cream form recently. PM for more info.

[LNN]

In our situation, fbt was essential and the "why" behind the anorexia was temporarily irrelevant. It was eat or face a feeding tube. So we endured rages and hatred. We were in crisis. But once my daughter started antibiotics and prednisone, she became a partially willing participant.

 

We still had to count calories and use fbt in order to fight the ocd. It just wasn't as intense of a battle.

 

I would use bmi as a guide. You cannot let someone battling anorexia just eat when they want to. Whether it's from body dysmorphia or from pandas ocd, you can't trust an anorexic to eat responsibly. I agree with those telling you that the why doesn't matter, at least below a bmi of 18. It's too dangerous.

 

If she's been battling this since last summer, you can't just wait for this flair to go away. You need anorexia triage until she gets rid of whatever infection is triggering the pandas

[LNN]

I will add that at 12, she's entering her final growth spurt. Calories are critical and being underweight now could have permanent effects. I think you need to be very vigilant.

 

Fwiw, we reluctantly turned to lexapro. It didn't help with ocd. It only made her tired, and helped her fall asleep. That was a good thing. But there's a small study suggesting ssri's may stunt growth, so we'll be weaning off as we approach summer. Between the anorexia and lexapro, my dd12 hasn't grown any in the past year. I'd try adding a second antibiotic before adding an ssri. Imo

[bws1565]

Just a quick question relating to this topic.

 

My DD is a fair weight, but she many times "forgets to eat; or is just not hungry" If I would put food down in front of her, she would eat it all. I am concerned with her not getting the proper signal to eat. There have been times that she just ate breakfast after 4PM for no good reason.

 

Has anyone had their kid "forget to eat"?

[bobh]

Our kid definitely forgets to eat. He makes up for it eventually by eating a lot, but he readily lets himself get there.