PANDAS and Anorexia

[mrsoregon]

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!

[Buster]

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.

 

Our 7 year old had similar issues in February and March of 2008. She was obsessed with a fear of weighing more than 50 lbs. She had full body morphology issues and compulsions/rituals around food. You can read our case at : http://www.pandasnetwork.org/case2.html

 

While the contamination fears and hallucinations were scary, the anorexia was life threatening.

 

The key item for us was insisting on a throat culture once we learned about PANDAS. Getting her sister cultured (who was positive). Treating both with the right antibiotics (amoxicillin did nothing). Azithromycin for us was key -- also it was slightly easier on the GI tract. If you think it's PANDAS, strongly, strongly recommend maintaining full-streng azithromycin to prevent recurrance of the anorexia.

 

Regards,

 

Buster

[EAMom]

Hi...it's Buster's dw here.

 

I should add that the link isn't totally up to date. We finally did do IVIG in August 2009 (at Stanford, used a dose of 2 grams/kg/over 2 days). Although Dd was overall doing well on Azith (250mg/day since June 08), we were seeing exacerbations (mood, anxiety, some restrictive eating, "measurement compulsions", handwriting issues...."nothing" compared to the @#$^& of Spring 08 when she dropped from 50 to 42 pounds in 2 weeks) when family members (usually it was her sister, but I also got strep in April 09) got strep or when PANDAS dd had viruses (fifth's, H1N1). We were also seeing a "baseline change" where after each exacerbation she didn't completely return to normal. We also wanted to (hopefully) ensure that the anorexia/full-blown pandas would have even less of a chance of coming back (esp. when she eventually goes off abs as an adult). It's too early to say if the IVIG was a sucess...we are cautiously optimistic but would repeat it if needed.

[momto2pandas]

I can speak to my own experience on this one. I started with anorexia nervosa when I was 12 back in 1979, about 14 years before I was diagnosed with what would later come to be called PANDAS. I had had other kinds of PANDAS symptoms since first grade, but nothing that severe. It was the same story. I got what would turn out to be a very persistent infection, and then I literally woke up anorexic one day - my memory of it is very specific. At the time, anorexia nervosa was practically unheard of. Went from 90 pounds down to 55, 2 years out of the next 5 spent in hospitals, very bad ticcing & OCD & eventually depression all the while, etc. etc., but I made it through. The anorexia nervosa actually "went away" prior to my antibiotic treatment so I can't give advice about how to put a stop to it, but one thing I can say is that when it really left, it went away just as quickly as it came on, and then never came back even one jot (and that was 25 years ago, now). One day, I just wasn't anorexic any more, and there wasn't even any "baseline change" that persisted longer than the duration of habit - all of that weighing and calorie counting and obsessive fretting no longer interested me. At first it was actually a difficult adjustment for me NOT to be anorexic anymore after years of living with it at various levels, but once it truly turned off, it just never turned on again even though there were moments when I wanted it to.

 

I don't have any medical advice about how to deal with exacerbations other than what you probably already know re. infection treatment and immunotherapy. Antidepressants were somewhat helpful in keeping my head above water at times during that period (they just had the old-fashioned ones then). I don't think they were curative and I had lots of bad reactions to them (including mania), but it's possible that without those boosts here and there I would have died. If I had a child with AN, I would try them, cautiously, if it came down to desperation. As for other advice - just my opinions, of course: First, don't be fooled into thinking that weight gain means recovery. In my history, there were loads of fits and starts that looked like recovery from a weight gain perspective, but that weren't. I can't tell you how many times I gained and lost 25 pounds or more during that time, when everyone thought I was "cured" (but I knew I was not). If the compulsive behavior hasn't gone away, then the disease still needs to be treated. Second, it is very easy for anorexia nervosa to destroy relationships between kids and their parents, since it looks so much like willful self-destructive behavior - stubborness and defiance. I won't bore you with my whole story, but try to remember that it is an affliction that some day your child will come out of, and she will remember how the people around her treated her - as if she was the perpetrator, or as if she was the victim. After all this time, I still can't forgive my parents for the way I was handled during that time. (I don't mean to imply that you're not doing it right - this is very general advice!).

 

I have a child with PANDAS now (probably two of them - not 100% sure about my little guy yet), and my biggest fear in the whole thing is that some day he'll develop AN like I did. I thank God, though, that we know so much more about how to help kids now than we did in my generation. So far my guys are relatively mild but I worry, of course...

[EAMom]

I won't bore you with my whole story, but try to remember that it is an affliction that some day your child will come out of, and she will remember how the people around her treated her - as if she was the perpetrator, or as if she was the victim.

 

NOT boring!! I think always think it's fascinating to hear about PANDAS from adult-who-had-it-as-a-child point of view.

 

BTW...I went to a school where (I was in 8th grade in 1979) we had a girl who had anorexia in 7th grade, and several more in high school. I don't know if they had PANDAS (probably not...I'm not so much aware of tics/ocd/mood issues), probably "regular" anorexia nervosa. The girl who had it so early was a top student. champion cross country runner, got lots of academic awards as well. One sad thing was that her growth was severely stunted b/c of the malnutrtion. So, in college she still looked like an 11-year-old girl (I understand this wasn't great for her social life). Another girl from my class ended up dying in her early 20's b/c of cardiac complications of anorexia (which she also had in high school...I think starting our Junior year or so.)

 

Knowing these people is one reason anorexia in my dd (7.5 years old at the time) really scared the be-jeezers out of me.

 

When did you hit puberty? Was your recovery tied in with that at all?

[thereishope]

During my son's 2nd strep triggered exacerbation he just stopped eating. I mean he ate nothing. He was 5 years old. At this point I knew he had PANDAS, and I remembered reading on a website that anorexia could be a symptom so I knew I had to tackle it asap. He never voiced why he wouldn't eat. I had to begin spoon feeding him for nourishment and it had to be things like yogurt and appleasauce since he refused to chew since he did not want to eat. He would lick small amounts off the spoon when I put it to his mouth. In the course of 1 1/2 weeks he lost 6-7 pounds putting him at about 36 pounds at 5 years old. He had others problems present during the time of his refusal to eat. I even explain to a 5 year old in detail what a feeding tube was. He refused to eat.

 

When he finally began eating again, it was a process. First he had to get all his own food. It had to be cold, individually wrapped food. Then he graduated to cooked food, letting me get his food together. Today, he's completely fine and his eating habits are back to normal. He is even trying new things and eating things he doesn't like because I'm his mom and I tell him to!

[T_Mom]

MsOregon--Welcome and I am sorry you have had to find the forum, but may it be a help--

 

Our d was treated for sudden onset anorexia for 3 months, and then it left -- HORRIBLE time.

Scary and I will do anything in our power to never go back there again--

 

One week in November she came home weeping and wailing about being fat, counted calories obsessively, bounced her legs, ran around obsessively to burn calories, lost 10 pounds in two weeks, insisted on pounding out an hour + on the treadmill or would dissolve in tears and rages... this was winter of 2007. (Team of AN doctors, Maudsley method via Children's hospital we instituted, etc.etc.etc.) Most frightening thing I have ever encountered bar none--

 

We wondered if it was Pandas at the time, but we were not sure. Our d was essentially "OK" for awhile -- (though healing, as evidenced in schoolwork, slow recovery...) but "OK" with no AN, and not medicated for about 4 months.

 

Then the following summer she had what Dr Rapoport called an OCD storm.

A steroid burst (via Dr. K.'s protocol, www.webpediatrics.com) and ten days of full strength antibiotics (since she had sinusitis on an MRI show up!) and after a few weeks, on 8/26/08 she literally "walked" out of it, came downstairs walking and talking on her own--(she had been holding painful positions, eyes closed, spit in her mouth, bathroom accidents, and not speaking (at all) due to OCD for 3+ weeks.) We had seen doctors from Hopkins, NIH, Children's, etc...to no avail. UNTIL we found a compassionate local neurologist who did the steroid burst, even as he said to us, "This is off-label, but..."

 

She was again not medicated for about 4 months after this, but just as Dr K had predicted, it hit again OCD and tics 4 months later. We treated her again with antibiotics and she made a slow recovery and has been on full strength Amoxicillan for about a year now.

 

You have obviously done a good job of getting her help NOW, and hopefully, she will not have anymore exacerbations--perhaps the antibiotics have done it for now. I will mention, that EAMom suggested we try a month of full-strength antibiotics and that was critical for our d's healing--We believe the continual use of antibiotics has been essential for our d.

 

Knowing what we know now I would have tried steroids and antibiotics sooner-- to hit it with every possible remedy, thankfully we know now--

[momto2pandas]

Unfortunately puberty didn't help me at all, but it's hard to say, since the anorexia nervosa actually started right around that time and once you get down to 55 pounds, your body is a long way from actually being in puberty. I had actually gotten my period only once, and then became anorexic. I didn't start menstruating on my own again for several years.

 

I woke up this morning remembering two things, though, that preceded my sudden recovery. One was that I started taking hormones to make me get my periods back and protect my bone density - but I was on those for at least several months before the "light bulb went on", so who knows. The other - and I don't remember the precise timing since I never tied it together before but I can trace it down to being close in time - was that I was diagnosed with tuberculosis (positive TB test + positive chest x-ray), and started taking isoniazid, which I was on for 2 years. It was during the early part of that time that I suddenly recovered. I just looked isoniazid up on wikipedia, and it is "bactericial to rapidly-dividing mycobacteria". Wikipedia also states that it is never used on its own to treat active tuberculosis, so I presume that I must have been hit with some heavy antibiotics at the time also, but I don't recall that part. Who knows if there is a connection, but it's funny that after posting last night my brain dredged up overnight the fact that I actually was treated with antibacterials at that time.

 

I won't bore you with my whole story, but try to remember that it is an affliction that some day your child will come out of, and she will remember how the people around her treated her - as if she was the perpetrator, or as if she was the victim.

 

NOT boring!! I think always think it's fascinating to hear about PANDAS from adult-who-had-it-as-a-child point of view.

 

BTW...I went to a school where (I was in 8th grade in 1979) we had a girl who had anorexia in 7th grade, and several more in high school. I don't know if they had PANDAS (probably not...I'm not so much aware of tics/ocd/mood issues), probably "regular" anorexia nervosa. The girl who had it so early was a top student. champion cross country runner, got lots of academic awards as well. One sad thing was that her growth was severely stunted b/c of the malnutrtion. So, in college she still looked like an 11-year-old girl (I understand this wasn't great for her social life). Another girl from my class ended up dying in her early 20's b/c of cardiac complications of anorexia (which she also had in high school...I think starting our Junior year or so.)

 

Knowing these people is one reason anorexia in my dd (7.5 years old at the time) really scared the be-jeezers out of me.

 

When did you hit puberty? Was your recovery tied in with that at all?

[Megs_Mom]

I think this discussion is the one that scares me the most. I agree - antibiotics and steroid as fast as you can, even if you just see a day or two of behavior. I try to make three days my rule of thumb, but it's hard for me to see even a glimmer of it coming back. I was up all night last night because she strugged last night when at a ball game with her dad. She ate the freaking hot dog, and then told me about the intrusive thought (her first really intense one in about 3 months), but I am a nervous wreck today.

 

We only saw glimpses of this, but it scared the living ##@## out of me, and I have the most empathy for the parents on this board who had this manifestation. Even at age 3, I was asking how a child could be anorexic. But for Meg, it was never truely there - she was obsessed over "sugar" and this went to all kinds of foods, including fruit and juice. But she did not lose weight - she would eat, but we had to have food out all the time & keep it really low key. She also examined all her food for "spots" or damage, and checked labels for out of date. She always asked if things were "bad". She would have panic attacks if she was served a large plate of food. At restaurants, we would nearly leap over the table when the food arrived, to ensure that nothing was put in front of her - I would get another plate & give her a little at a time. A waitor surprised her with an ice cream sundae once in July, that was the size of her head. She was in my lap in seconds weeping her heart out. Anything that she learned at school was a nightmare - such as fat content. Once she learned that you can "burn off sugar" and then confessed to her therapist that she was doing jumping jacks or running around to "balance out" the food she had eaten. I have never dieted - so how she could even know about food balancing was terrifying. And she was also the kid that eats anything, even Sushi, so this was a complete turnaround in character as well.

 

Overall, Meg's OCD was debilitating - but she was not starving herself, or worrying about body image - it was all about her getting sick. I wonder if this is just developmental, because she is not at an age to worry about anything like weight yet. The idea of this coming back & possibly morphing into Anorexia keeps me up at night - I had to come here 3 times before I could read this entire thread. I am scared to death about how many teens that are anorexic might actually have PANDAS.

 

We will never have a scale in our house - they give me the heebie-jebbies. When she asks me for a treat now, I always say yes - we are only very slowing trying to have rules again in our house, such as eat your veggies before desert. I don't really care - and I smile with pride when she orders a Sprite. I feel like the wierdest mom.

 

I will pray for your child, and hope that antibiotics and prednisone will keep the storm at bay - if I were you I would NEVER take her off antibiotics. All my best -

[momto2pandas]

I just read that isoniazid is pretty much always given with rifampicin, so perhaps that is what I was taking. I don't remember that part specifically, though.

 

 

I won't bore you with my whole story, but try to remember that it is an affliction that some day your child will come out of, and she will remember how the people around her treated her - as if she was the perpetrator, or as if she was the victim.

 

NOT boring!! I think always think it's fascinating to hear about PANDAS from adult-who-had-it-as-a-child point of view.

 

BTW...I went to a school where (I was in 8th grade in 1979) we had a girl who had anorexia in 7th grade, and several more in high school. I don't know if they had PANDAS (probably not...I'm not so much aware of tics/ocd/mood issues), probably "regular" anorexia nervosa. The girl who had it so early was a top student. champion cross country runner, got lots of academic awards as well. One sad thing was that her growth was severely stunted b/c of the malnutrtion. So, in college she still looked like an 11-year-old girl (I understand this wasn't great for her social life). Another girl from my class ended up dying in her early 20's b/c of cardiac complications of anorexia (which she also had in high school...I think starting our Junior year or so.)

 

Knowing these people is one reason anorexia in my dd (7.5 years old at the time) really scared the be-jeezers out of me.

 

When did you hit puberty? Was your recovery tied in with that at all?

[peglem]

We just finished a 10 day course of rifampin+augmentin. We're continuing on the augmentin. Very nice improvement in anxiety levels...I'm just afraid we need a longer course of rifampin...

Thank you so much for sharing this info.

[dcmom]

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.

[momto2pandas]

Not to scare anyone, but my symptoms were very much like that. I might have been happy about losing that first 5 pounds (which brought me from thin to noticeably thin, stylish at the time), but after that I was clearly too thin and knew it, and I lost the next 30 pounds not because I was trying to lose weight but because eating/food/fullness/specific foods (sugar, fats) caused such anxiety and panic. In the eating disorders programs I was in, I was always considered "atypical." The part that the doctors considered most bizarre was that I had no distortion whatsoever. They used to do this test where the asked you to create a loop with a string that was the size of your waist, your hips, etc., and then they measured the difference between your actual measurements and what you thought they were. I was always exactly spot on, better than "normal" people. Most anorexics are off by a massive amount. I was also atypical in other ways, e.g. I came out totally normally on all of the psychological testing, except for the IQ test. This led to a considerable period of not being diagnosed with anorexia at all but rather as being "poorly adjusted to extreme giftedness"... until I was rushed to the hospital in a crisis. Once the specialists had at me I received the diagnosis, though an "atyipcal" one.

 

 

 

 

 

I think this discussion is the one that scares me the most. I agree - antibiotics and steroid as fast as you can, even if you just see a day or two of behavior. I try to make three days my rule of thumb, but it's hard for me to see even a glimmer of it coming back. I was up all night last night because she strugged last night when at a ball game with her dad. She ate the freaking hot dog, and then told me about the intrusive thought (her first really intense one in about 3 months), but I am a nervous wreck today.

 

We only saw glimpses of this, but it scared the living ##@## out of me, and I have the most empathy for the parents on this board who had this manifestation. Even at age 3, I was asking how a child could be anorexic. But for Meg, it was never truely there - she was obsessed over "sugar" and this went to all kinds of foods, including fruit and juice. But she did not lose weight - she would eat, but we had to have food out all the time & keep it really low key. She also examined all her food for "spots" or damage, and checked labels for out of date. She always asked if things were "bad". She would have panic attacks if she was served a large plate of food. At restaurants, we would nearly leap over the table when the food arrived, to ensure that nothing was put in front of her - I would get another plate & give her a little at a time. A waitor surprised her with an ice cream sundae once in July, that was the size of her head. She was in my lap in seconds weeping her heart out. Anything that she learned at school was a nightmare - such as fat content. Once she learned that you can "burn off sugar" and then confessed to her therapist that she was doing jumping jacks or running around to "balance out" the food she had eaten. I have never dieted - so how she could even know about food balancing was terrifying. And she was also the kid that eats anything, even Sushi, so this was a complete turnaround in character as well.

 

Overall, Meg's OCD was debilitating - but she was not starving herself, or worrying about body image - it was all about her getting sick. I wonder if this is just developmental, because she is not at an age to worry about anything like weight yet. The idea of this coming back & possibly morphing into Anorexia keeps me up at night - I had to come here 3 times before I could read this entire thread. I am scared to death about how many teens that are anorexic might actually have PANDAS.

 

We will never have a scale in our house - they give me the heebie-jebbies. When she asks me for a treat now, I always say yes - we are only very slowing trying to have rules again in our house, such as eat your veggies before desert. I don't really care - and I smile with pride when she orders a Sprite. I feel like the wierdest mom.

 

I will pray for your child, and hope that antibiotics and prednisone will keep the storm at bay - if I were you I would NEVER take her off antibiotics. All my best -

[Megs_Mom]

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]

edit-double post