anorexia round 2 - beerae22 or anyone else?

[perl]

Hello! Long time lurker, first time poster, mom to a 6.5 y/o PANDAS boy with a question about food restriction/anorexia. I've read a lot here (esp from beerae22 who seems to have been on a similar journey with her DD) and it's been soooo reassuring to know that we're not the only ones out there dealing with this.

 

In a nutshell, DS had an abrupt onset of typical PANDAS symptoms in February 2014. With prompt antibiotic treatment (mostly Rocephin injections - he would take nothing by mouth), most symptoms went away (or decreased so that his level of functioning was no longer greatly impaired). The only residual symptom was the severe food restriction.

 

At the worst point, DS would only consume McDonald's vanilla milkshakes (no toppings! perfect temperature!) and popsicles. Thankfully, I was able to find a paper online that had been co-authored by a doctor who works at an eating disorder clinic within driving distance that treats "food phobia."

 

We got him into their partial hospitalization program in July where he was on a moderate dose of olanzapine and a feeding tube was placed. After about a month, the program did its "magic" and DS was eating like a little piggy! He gained 10 lbs during August!

 

During the past few weeks, we've seen him starting to restrict again. Things really amped up after a relatively mild virus (a bit of vomiting and fever for ~24 hours then diarrhea for a few days). He's eating practically nothing during the day, and has stopped eating several staple foods. While he is still doing the "bite, chew, swallow" and eating solids and crunchy foods, the tics (which mostly happen while he eats) are back in a big way. He's getting messier (before treatment he would take a bath after he ate anything) and eating less in quantity. I'm getting scared.

 

His pediatrician has him on Zithromax 500 mg three times a week as strep prophylaxis. I'm going to contact the doctors at the eating disorder program (one of whom knows Swedo a bit) to see if they can recommend someone but wondered if the parents who've been through this can offer any advice or tell me what worked for their child. In my mind, we could try different antibiotics (he won't swallow pills - grrrr) but IVIG will likely be the "big fix." Basically we've been telling the medical doctors what to do and backing it up with published research (husband is MD and I'm NP) but I don't want all of this on us - it's way over our heads. Should we consult Dr T? Dr K? We're headed on vacation to Mexico for a week and I have a feeling this might push DS back into full-blown restriction mode. Haaaaalp!!

[Chemar]

Hello

I am bumping up your first post so others can respond

[searching_for_help]

Dr. L and Dr. K diagnosed our dd with PANDAS (but technically, she is actually PANS - they seem to use PANDAS as the catch-all.) She has had the restrictive eating part for over 10 years. (She's 23). OCD, extreme anxiety, insomnia, urinary frequency, etc., etc, ugh...

 

We did IVIG with dr. K. several years ago. It did nothing, but I do realize all kids are different. She almost died in January (one hospital suggested hospice - they don't believe in "forcing" adults to eat...) but ACUTE in Denver saved her. Strangely, her intrusive thoughts calmed down after a few days there, and we weren't sure if it was due to the plasma exchange she had had 2 months previous, or the low dose Clomipramine (Anafranil) they put her on.

 

We're beginning to wonder if it was the plasma exchange that helped then, as she is once again going down the rabbit hole, and she is still taking the Anafranil. Her immune system just isn't working right - she had shingles about a month ago, and she was having drenching night sweats a few days before she started having the intrusive thoughts, food refusal, etc. It has taken 9 months to get about 50 pounds on her, and I can't believe this is happening again. We know she has Bartonella, too, (the rashes showed up about 3 months after the plasma exchange), but she was scratched a few weeks ago by a stray cat - and I'm wondering if that cat had babesia. (I'm not sure what else would cause drenching sweats.)

 

The problem with plasma exchange is it usually doesn't work immediately, if it works at all, and often doesn't last. You are at an advantage in that your child is young and ED treatment centers will take him, but honestly, non of them are very good, except ACUTE, but that is only for the extreme cases. None of the places we've checked into believe in PANDAS. It's maddening. It's a totally different ballgame with an unwilling adult. (EVEN if you pay the money for guardianship - we found out it didn't mean much of anything. They still have to go WILLINGLY, which will NEVER happen in our case.)

 

You mentioned his symptoms ramped up after a mild virus. Personally, I'd suggest adding Valacyclovir (an antiviral) to the mix to see if it might help. ANYTHING to stop the progression. Your child sounds clearly like a PANS situation to me, so you have to get someone to help you find what infectious process is causing the problem. In our case the Bartonella is probably hampering her immune system. We're working on it, but after years of this, we are all getting worn out.

 

Another thought - IVIG, from my understanding, is not screened for things like Lyme, Bart, etc. Many PANDAS kids have Lyme and coinfections already, but since the IVIG wasn't affective for our dd, I kind of wish we hadn't possibly exposed her to other things. (Remember that Hep C and other things didn't used to be tested for in blood either...) But if I'm correct (someone correct me if I'm wrong), plasma exchange is not the same (plasma instead of blood cells) so would be safer.

 

My heart goes out to you - it's so difficult to watch your child suffer, but hopefully with more knowledge about this problem out now, your child won't have to suffer as many years as our has.

[dasu]

My daughter also had restrictive eating and lost >10% of her body weight, although we did not notice this until a consult with Dr L. She had been on other abx but clindamycin and rifampin cleared restrictive eating and other lingering symptoms. I truly wish I could be in similar shoes (no more arguing for meds!) but I think doing a consult would be advantageous particularly if things get worse in the future. The first visit is painfully slow but the PANDAS symptoms can present so quickly. Also I would try to minimize exposure.

 

@searching_for_help Excellent if dreadfully sad post. The health care "professionals" who suggested hospice should be fired. Do you think there is something in your house that aggravates your daughters symptoms?

Edited November 18, 2015 by dasu

[BeeRae22]

I'm sorry, just now seeing your post.... Not sure I have much to offer-- fortunately my dd is more or less back to baseline now after such a long road. Definitely sounds like pans/pandas flare though- especially if its after illness. Did your son have strep? Lyme? I'm curious about your reference to ivig being the "big fix"... Have you been successful with it in the past? There was a time when I was wishing we could try it but we couldn't get approval with no positive strep (dd had myco p and suspected Bart, no strep).

We did zith/Augmentin combo first, switched to zith/Bactrim, and later when we added Minocycline was when we saw the biggest improvement with eating.... Finally backing off meds after close to 2 years of treatment of full doses abx... Down to just zith and doing great.

Is your son taking any meds now?? My first thought is that although you said he'd improved with eating, I'm wondering if he wasn't fully recovered yet-- any other symptoms????