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Anorexia and PANDAS


T_Mom

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If anyone has experience with turning around PANS related anorexia would you please share how you saw resolution to the issues (either here or pm)

 

Our oldest is having anorexic struggles which appear to be PANS based. (This happened once before 4 years ago.) (Sudden onset, not just "thin" related much more an OCD related, morphed suddenly from intrusive thoughts OCD into AN, etc.)

 

 

My question is: If your child has gone through AN issues w/ PANS, at what point did you see a resolution to the eating disorder "immediately" with IVIG, abx, pex? --or once the body was re-nourished to higher bmi?

thanks.

 

*(I see this has been touched on before, http://www.latitudes.org/forums/index.php?showtopic=11839, if anyone has any other experience with pex or IVIG helping I would love to hear the timeline of your experience--thank you!!!)

Edited by T.Mom
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T Mom,

I don't have anything similar to what you're dealing with, but my DD6 has had eating issues - GERD related but probably a little OCD driven - she has intrusive thoughts and won't share those all the time. We are seeing improvements from treating methylation issues. I believe her biggest issue is with not having enough available folate (B9) to convert into seratonin. We have started supplementing folate as well as zinc/B6 (she tested borderline for pyroluria) and she has gained weight. The other day, she asked for TWO sandwiches, when in the past it was all we could do to get to her to eat a half sandwich.

 

I know you've had really positive results from IVIG and that's so awesome. But if you want to look into something less big-gun, Nancy just posted a nice overview of methylation and it might be worthwhile to give the folate a try. Both my kids also had good results with inositol (B8).

 

I know this doesn't answer your question directly. But wanted to pass it along as "food for thought". You might PM EAMom for her experiences post-IVIG. This is a big interest to Meg's Mom too. So maybe drop her a line as well. Hope it's something you're able to put behind you soon!

 

xo,

Laura

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I am so sorry you are going through this.

 

So- although my girls never presented as classic anorexia, both would eat VERY little, and it was becoming very scary.

 

Our oldest would not eat after 3 because she was afraid she would get sick. That went on for a long time, and we didn't really catch on until later. Then when things went downhill with pandas she wouldn't eat anything after breakfast, for the rest of the day. It was very scary.

 

Difficulty with eating is usually one of my younger's first, and low level symptom. For her, food becomes not palatable. She will be hungry, but cannot find anything she wants to eat. Normally she is a picky eater, but has a nice list of "favorites" that she eats all of the time- when pandas/eating problems hit- she no longer likes these favorites. She ends up eating next to nothing, yet being hungry and miserable.

 

Both girls went an entire year without gaining a pound at ages 5 to 6, and 8 to 9, (actually, I think they lost quite a bit with pandas, but gained it back when they got better, to remain even)- the pediatrician was concerned.

 

During these times, I put them in front of a movie for meals, when possible, with a tray of tasty small bite foods (fruit, veggies and dip, cubes of meat and cheese, whole wheat crackers, tea sandwiches, pizza bagels, etc). I noticed they would forget and eat more without even realizing it. We also did lots of smoothies (ice, strawberry kefir, frozen strawberries, frozen blueberries, milk, mango sorbet and I added protein powder- vanilla "muscle milk"). I know your daughter is older now, so these things may not work as well for her.

 

PEX immediately resolved these issues for both girls. Although our road since has certainly been bumpy- we haven't seen a time as bad as that initial onset prior to pex. I know your doc, and she will take this very seriously- I hope you have gotten in touch.

 

I hope this helps a bit....

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Dont have any answers but we are dealing with anorexia also. My son is 16 he is not under weight and eats some. His problem is OCD with food he thinks about it constantly. He had a nine month bout of throwing up constantly last year. He is just walking around and throws up what seems like involuntarily. He had IVIG in October and said he thought he felt less concerned about food after it. Now the throwing up has returned. Many doctors have ran test and cant find a physical reason for the vomiting. PANDAS Sucks!

Melissa

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  • 3 weeks later...

Hi T.Mom,

how are things going? Better I hope.

 

I think renourishing is really important (assuming they've lost 15-20% and have distorted body image). For us renourishing helped, but Azith (took about 10 days for dd to "decide to get better" and start eating) was the thing that really helped turned the OCD/distorted eating. I think prozac and advil helped too.

 

Also, based on this article, if my PANDAS dd had AN (like she did in 2nd grade) I would also think about trying Amantadine (since it looks like it wouldn't take very long to see if it works) and it might help get out of the scary not-eating crisis situation. Here's the article http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3061844/

and here's info on Amantadine (parkinson's drug) http://en.wikipedia.org/wiki/Amantadine ... interestingly, it also has glutamate modulating properties and anti-viral properties.

Edited by EAMom
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Thanks EAMom, the weekly mtg w/ the nutritionist is tomorrow and I will ask about Amantadine.

 

We are not out of the woods yet here. She has been struggling with eating--she had 3 not-as-bad days last week and then she saw the psych. and she had a pretty clear set-back. The psych. is a very "straight forward" AN counselor, which seems to be quite typical. However, with PANS I am not sure this is working. Facing this is very tough. I am seeing an entrenched AN that is really scary quite frankly. We did pex in early Nov. and will seek IVIG in Jan. Since our d has always responded very well to a steroid burst we remain hopeful.

 

I agree that re-nourishing is absolutely critical to recovery -- perhaps even with an immune modulating treatment. I wonder if that is why she did not respond well to pex.

My only wish is that we had done IVIG much sooner.

Edited by T.Mom
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Thanks EAMom, the weekly mtg w/ the nutritionist is tomorrow and I will ask about Amantadine.

 

We are not out of the woods yet here. She has been struggling with eating--she had 3 not-as-bad days last week and then she saw the psych. and she had a pretty clear set-back. The psych. is a very "straight forward" AN counselor, which seems to be quite typical. However, with PANS I am not sure this is working. Facing this is very tough. I am seeing an entrenched AN that is really scary quite frankly. We did pex in early Nov. and will seek IVIG in Jan. Since our d has always responded very well to a steroid burst we remain hopeful.

 

I agree that re-nourishing is absolutely critical to recovery -- perhaps even with an immune modulating treatment. I wonder if that is why she did not respond well to pex.

My only wish is that we had done IVIG much sooner.

 

Be sure to bring a printout of the article on Amantadine. (Our psychiatrist hadn't seen that study b-4 when we showed it to her, and was impressed enough to send it to the head of the Eating Disorder Clinic at Stanford.)

 

When we were bad in 2nd grade, Advil also helped with eating.

 

Yes, I'm surprised PEX didn't help more. I wonder if there is either an ongoing infection, or if things are so out of wack due to malnutrition (2ndary changes) that she needs refeeding before she can improve. That is what is impressive about the Amantadine, it seems like it would be a way to accomplish refeeding, get her eating.

 

I'll keep my fingers crossed that IVIG makes a difference. Are you thinking of doing a steroid burst? Or did you already do one?

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Hi EAMom, thanks for the follow-up. We saw the nutritionist but I had forgotten the article...so will have to email it to her to see what she suggests. Thanks again for the idea.

 

re: steroid burst, it was determined that given her state this was potentially dangerous, so we did not do one. Truthfully, I am just kicking myself that we did not do IVIG in August for her before this got out of control so quickly. We were told (again) that if she is not up in weight the next two weeks that inpatient feeding tube will be required (she had lost weight this past week.

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Sorry to hear about your daughters struggles. It is heart breaking to watch them struggle. My 16 YO son is suffering with involuntary vomiting of everything. It has been bad for 4 weeks now. He was hospitalized for 5 days while they looked at every possible cause and they placed a NG tube . The only cause they can come up with is eating disorder because of PANDAS. Involuntary vomiting is not typical eating disorder but with his history of Anorexia they feel this must be related. He is doing NG feeds for 10 hours at night and their goal is 1500 calories of Ensure each feed. He can hold down the NG feeds. He had HD IVIG the beginning of October (before this bout started) it did seem to help with other PANDAS issues. He had a LD IVIG first of December after this episode had started but we have seen no improvements at all. He is on 300MG Clindomycin 3X a day. The current plan is to do LD IVIG every four weeks for 6 months. If there is no improvement soon he will probably end up in inpatient care. We are in Southeastern VA. Were are you? How old is your daughter?

 

PANDAS Sucks!

Melissa

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Hi Missjo, how low is your low dose IVIG?

 

Here is a thread that discusses low dose IVIG and how it may be pro-inflammatory (so not what you would want for a PANDAS patient). Anyway, do be careful re the low dose IVIG, since there really isn't any evidence/research out there that shows it helps PANDAS. All the research, and what most PANDAS docs, like Dr. K., Dr. B. Dr. L., are doing is high dose-- either 1.5gm/kg or 2.0gm/kg (usually spread over 2 days.)

 

http://www.latitudes.org/forums/index.php?showtopic=7868&st=0&p=64034&fromsearch=1entry64034

Edited by EAMom
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  • 2 weeks later...

My 11 yo ds stopped eating and had a gtube placed this year. It has now been 11mos. He ha gained back most of his weight that was lost. We had an amazing turnaround with Clindamyacin, by Dr T. Was treated for high Myco P Igg. When he came off the abx, he stopped eating again. Our Neuro put him back on the Clinda, and he started eating again. We also use Marinol to increase his appetite. This stuff works great!! Pm me if u need any advice about the gtube...

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