PANDAS and Anorexia

[EAMom]

So I laughed (thank you for that) about the sprite, and being a "normal mom". When my kids ask for ice cream- I almost break my neck running to the freezer to get it for them. Rules about eating have also gone out the window here (although yes, we are healthy and organic- but also push ice cream, yogurt, bread and olive oil, and juice- yes juice. My dh used to complain that they drank too much juice- not enough water- now I really push the juice just to get the calories in).

 

Yikes- pandas brings you to your knees as a parent, and makes you really realize what is important.

 

Same here...I push juice (esp. the stuff with probiotics--Good Belly) and ice cream! I also make brownies with DHA eggs and canola oil. One good thing about brownies and cookies...that is one time that dd asks for MILK.

 

In June 08, when dd was first recovering from her Spring 08 Anorexia, I remember bursting with joy when dd polished off almost a whole package of Trader Joe's oreos.

[Worried_Dad]

Our son's 2nd major exacerbation (Summer 2008, age 12) resulted in him losing 20 lbs in about 6 weeks. Every meal was agony, and we feared we'd have to hospitalize him several times.

 

For him, only high-dose abx and IVIG helped resolve the anorexia. (And psych meds - ativan in particular - made it much, much worse!)

[momto2pandas]

I always wondered if there was something more physiologic to it than just the emotional part. While I was in the throes of it, when I was in the hospital and trying to gain weight (more or less forcibly), it took at least 5000 calories per day for me to put on weight, sometimes up to 7000. The staff were completely convinced that I was somehow managing to purge or was exercising on the sly, neither of which was true. They even took the plants out of my room because they thought I was vomiting into my plants (absurd!). I never purged and had no explanation for why it was so difficult for me to gain weight, and they never believed that I was actually consuming that many calories. But once I was "cured," I gained 25+ pounds in no time at all just eating what I was hungry for. The funny thing also, is that I grew two inches at that time, after not having grown for years, even though I was in my late teens by then.

 

I have since learned that some immunodeficiencies are associated with poor fat absorption, and I wonder about this. I've always had a problem absorbing fats - even whole milk always gave me diarrhea, and I had lots of apparent malabsorption during the anorexia years. My doctors had basically explained it as the anorexia itself having "ruined" my gut, but I have always suspected otherwise. Eating, especially fats, made me feel really physically uncomfortable during that time.

 

 

 

 

Megs Mom- I read your post, and can tell you I have the same fear. Julia ate very little during her exacerbation, and while she didn't lose weight, she didn't gain any weight from January to September (she did grow a couple of inches though). My bigger fear now is for my older daughter however, who we are now pretty convinced is also suffering from pandas (when I have a little distance from it, I will post her experience). She eats very little now. For her, it is all wrapped up in fear of stomach ache or throwing up. She eats ok at breakfast and lunch- but almost no dinner, and very little snacking (this is very out of character- before strep she LOVED eating, and ate a very varied diet).

 

So I laughed (thank you for that) about the sprite, and being a "normal mom". When my kids ask for ice cream- I almost break my neck running to the freezer to get it for them. Rules about eating have also gone out the window here (although yes, we are healthy and organic- but also push ice cream, yogurt, bread and olive oil, and juice- yes juice. My dh used to complain that they drank too much juice- not enough water- now I really push the juice just to get the calories in).

 

Yikes- pandas brings you to your knees as a parent, and makes you really realize what is important.

 

I had not really thought about this, as Meg is normal looking - and very athletic, so she is always thin. But your post made me grab her medical records again. Our worst time this year was June & July. On 5/25 she was 54.6 lbs at a doc visit - on 7/6 at another visit, she was 52.8. I always just say she is 50 lbs, and never thought about it. She was weighed yesterday at GI appt, and was an astonishing 58.5 lbs! We were all shocked at how much she weighed - she has gained 6 lbs in the last 4 months since she started antibiotics. We have joked in our house that she would never make the 8 and 80 rule for car seats, as she has not really gained weight in the last year. So as I look back, she was certainly stopped in her tracks during the worst times in terms of weight gain. So maybe a growth spurt, but now that I think on this, it feels like I was missing something obvious.

 

I really hope your other daughter does NOT have PANDAS. But I will tell you that Meg was 98% around stomach ache & throwing up. Nearly all contamination fears led back to that. All my best -

[EAMom]

Wow.

[sf_mom]

Ohhhhhhhh, how I can relate!!!!!! We never had juice in our house until last week. Now its what do you want juice, smoothie, pancakes, cookies!!!! Anything to keep them eating.

[thereishope]

I just remember sitting at the table thinking how was he suppose to get better when his body wouldn't have the nourishment to fight it. If he didn't have the nourishment to fight, he'd just keep getting worse.

 

I always kept a box of Dunkin Donuts on the counter for a couple weeks and made sure all food he liked was in reaching distance so he wouldn' have to ask. When he began to come around, he went through phase like he'd enter the kitchen in search for food but didn't want anyone to know it. If I saw him enter the kitchen, I'd back off into another room. After he'd leave the room, I would go in and notice crumbs on the floor.

 

I didn't want to chance he'd stop eating again. I knew that if he went long enough w/o food, his stomach would adjust to that feeling and the hunger instinct might start fading.

[kcdc3]

My 10 year old daughter just finished her 5th stint in the hospital for malnutrition. It all started at the end of August when she was sick with a sore throat and cold and then decided she no longer wanted to eat and began obessively weighing herself and jumping. When she was admitted to the hospital she was given a strep test with a positive result. They gave her 5 days of anitiobiotics and put her in an intense eating disorder program. This is a kid who has never cared about looks or weight - a funloving tomboy. She eventually began to eat and was sent home - only to have it happen again and again. At our wits end we tried a new team of doctors and a new hospital. She was insane with fear abour weight gain and had to be sedated because she was flipping out at the hospital about food - biting and scratching - I did not know this child!! She even had to have the tube down her nose because she refused to eat and her heart rate was so low and she had blue fingers and toes. She lost a total of 16 pouunds and did not need to lose a pound to begin with! This last team of doctors took the PANDAS possibility more seriuosly and began 2 weeks of antiobiotics and had all of us tested at home - even our dog. My 12 year old tested positive with no symptioms - she was a carrier. Both her and the dog went on antiobiotics because they were not able to say with certainty that he was not a carrier. She has been home for 2 weeks and is eating again and has put back on 10 lbs. I feel like our nightmare is finally ending but I fear it could come back if she gets infected again. I would love to hear from other parents whose kids have had an OCD PANDAS reaction around eating and weight gain. I would also love suggestions to help us know what to do if we supsect it is coming back. I don't have to tell any of you what ###### we have been through. Thank you so much!

 

Eating issues and fear of becoming overweight are at the very center of my dd's PANDAS. She is afraid of obese people (hyperventilates, avoidance, more tics) and is obsessed with her weight, what she eats, etc. It has completely taken her childhood away from her. We were given a diagnosis of OCD/anxiety and my dd was VERY resistant to therapy. She was placed on Zoloft, which made her much, much worse. We did not even know about PANDAS until Feb. of this year - she has been dealing with OCD behavior for 3 years, although not all the time was it the fear of becoming fat. This has just been the last and most scary wave of the "waxing and waning". After looking back at her medical records, we came to realize that her OCD behavior started after a strep infection 3 years ago. I have been fighting since Feb of this year to get a doctor to listen to me and to give me ABX. I think I've finally found a doc who is going to cooperate, but it has been tremendously painful and still is at the moment. So sad to see a 10 year old girl so obsessed about weight. I feel like we will be in a hospitalization situation if something doesn't happen soon. I think Dr. K mentions in some of his case studies that eating disorders can come with PANDAS.

[EAMom]

Has everyone seen this? http://www.neuropsychiatryreviews.com/dec0...4_anorexia.html

 

Unfortunately, Dr. Mae Sokol passed away from cancer a few years ago.