Phasmid Posted January 14, 2011 Report Share Posted January 14, 2011 Even after IVIg (although only 8 days ago), my ds12's obsession with his "fat body" is getting worse. His PANDAS doc is concerned now, and wants him evaluated as well by the OCD clinic director at UCLA. He is not avoiding all food, but the obsession is getting exhausting for both of us. It starts upon waking, and ceases only when he goes to bed. Doc says he doesn't see this with other PANDAS, but then again doesn't have very many. Does your child have/had this? Did you resort to pharmacological help as well? Did that work? Did high dose IVIg stop it? Did low dose IVIg stop it? My son had low, replacement IVIg only- wondering if I should push for high dose next time. Starting to panic now... Link to comment Share on other sites More sharing options...
Megs_Mom Posted January 15, 2011 Report Share Posted January 15, 2011 Hi - we did not have abnormal body image, maybe partially due to her age. But it is a pretty "normal" type of OCD. I don't think EAMom or Buster are on right now, but their daughter is a good example of another child with this issue. Others have posted about this as well. There are plenty of parents here that have found some help in a very low dose of Zoloft, although of course, use caution and watch carefully to ensure that you are not seeing activation. What dose and type of abx are you on? Link to comment Share on other sites More sharing options...
Buster Posted January 16, 2011 Report Share Posted January 16, 2011 (edited) Even after IVIg (although only 8 days ago), my ds12's obsession with his "fat body" is getting worse. His PANDAS doc is concerned now, and wants him evaluated as well by the OCD clinic director at UCLA. He is not avoiding all food, but the obsession is getting exhausting for both of us. It starts upon waking, and ceases only when he goes to bed. Doc says he doesn't see this with other PANDAS, but then again doesn't have very many. Does your child have/had this? Did you resort to pharmacological help as well? Did that work? Did high dose IVIg stop it? Did low dose IVIg stop it? My son had low, replacement IVIg only- wondering if I should push for high dose next time. Starting to panic now... Hi Phasmid, Our child (at the time 7 years old) had compulsive questioning around food and food facts. She started with "will this make be gain weight?" "will my arms be bigger than my sisters?" "does this have fat in it?". This then turned into restrictive eating so that when she did eat she "wouldn't weigh more than 50 lbs". In her case, she had an obsession around not weighing more than 50 lbs. There was nothing rationale here. She was outright paniced and couldn't quite express what would happen if she did weigh more. She had body image issues with odd measurement rituals trying to prove to herself that she hadn't gained weight. Her pictures and drawings became quite odd with strange proportions. This got so bad we had to hospitalize her for malnutrition because she had lost 15% of body weight in 2 weeks. It sounds like your son has a very different presentation (i.e., not the restrictive eating, but the compulsive questioning). We did three things that helped our daughter: 1) 10 days of augmentin 2) We got food into her using pediasure and calling it "medicine" 3) We put her on a lowdose SSRI I know we changed three variables at once, but the combination helped -- who knows exactly which was the trigger. It sure seemed to be the augmentin, but the SSRI and food probably helped too. We tried upping the SSRI and that was definitely a mistake as she had activation. We dropped that back down and we were back to contamination fears and restrictive eating again. We switched to a different SSRI (low dose) to soften withdrawls off the 1st SSRDI and that seemed to help a bit. Then we switched from augmentin/amoxicillin to azith and had dramatic improvement. It's hard to know which combination of stuff helped - i.e., delayed response to augmentin, getting food in her, the delayed response to SSRI, or the nearer term effect of azith, but she had dramatic improvement on the 9th day of azith. My point is that the body image issue went mostly away. This is over 2 years ago. The restrictive eating had a resurgence about a year ago and we did decide to try HD IVIG and this resolved symptoms. Not sure whether our case helps you any, but yes, body image questioning is a standard/common OCD trait. Restrictive eating is deadly and scary. Wishing you the best, Buster Edited January 16, 2011 by Buster Link to comment Share on other sites More sharing options...
browneyesmom Posted January 17, 2011 Report Share Posted January 17, 2011 Oh gosh, yes! My DD11... was 9 when diagnosed. That year, she had a lot of worry about her weight and would say that she was "fat". It worried me too. She did not gain any weight for an entire year! After her t/a, she did improve and gained 10 pounds - thank goodness! When she caught strep again this past spring - 2010 - that was not an issue, thankfully. She is 4'9" and weighs about 68 now - lost a few pounds over the last few weeks when she was so sick & was hospitalized. Link to comment Share on other sites More sharing options...
EAMom Posted January 18, 2011 Report Share Posted January 18, 2011 (edited) Even after IVIg (although only 8 days ago), my ds12's obsession with his "fat body" is getting worse. His PANDAS doc is concerned now, and wants him evaluated as well by the OCD clinic director at UCLA. He is not avoiding all food, but the obsession is getting exhausting for both of us. It starts upon waking, and ceases only when he goes to bed. Doc says he doesn't see this with other PANDAS, but then again doesn't have very many. Does your child have/had this? Did you resort to pharmacological help as well? Did that work? Did high dose IVIg stop it? Did low dose IVIg stop it? My son had low, replacement IVIg only- wondering if I should push for high dose next time. Starting to panic now... Yes! Just to add to Buster's response...our dd dropped from 50 pounds to 42 pounds (in 2nd grade, at 50 she was a slender healthy child, at 42 she was emaciated) in a matter of 2-3 weeks. She would only eat 1 small meal a day. She would look in the mirror and considered herself to be fat. She weighed herself over and over again. She became obsessed with getting a new scale when the scale "broke" (we disabled it). What dose of antibiotic (and which one?) is your son on? Does advil help symptoms? I would encourage you to get aggressive with antibiotics, and then consider a steroid burst with HD ivig. I believe Hierge and T.Mom also had anorexia....not sure if there was distorted body image. I remember T. Mom mentioning compulsive excecising Also, there is a mom on this forum who had anorexia/pandas as a child. Was it mom2PANDAS? Edited January 18, 2011 by EAMom Link to comment Share on other sites More sharing options...
Phasmid Posted January 18, 2011 Author Report Share Posted January 18, 2011 Oh gosh, this gets so overwhelming. Just when you think you have one bud nipped, another one sprouts! To answer those who asked about antibiotics he is on: He has been on azithromycin since July, on/off. He's "on" right now. He will stay on now. Others he has been on = flagyl (for his C. diff., but "cured" his ocd very quickly), oral vancomycin after relapse on flagyl, azithromycin, Pen VK, and back to azithromycin. He is on 250mg. per day and he weighs 130 lbs. He was initially on 500mg. per day for 30 days. He has had 2 predisone tapering doses which worked well. He just had first IVIg, but low "replacement" dose. I am talking with his doc about doing a high dose next time. Just a reminder; my son is a very chronic case. We didn't know what was happening to him. So, he was sick from 2003 to 2009 without treatment. He resolved most major symptoms (which we thought were only vocal and motor tics) on his own each exacerbation. Here is a message I just got from Dr. K who was kind enough to answer my question about whether or not the disordered body image could be taken care of with low dose IVIg: "Disturbed body image develops later in the course of illness. This (if confirmed PANDAS) responds ONLY to high dose IVIG." Link to comment Share on other sites More sharing options...
Phasmid Posted January 19, 2011 Author Report Share Posted January 19, 2011 (edited) http://ajp.psychiatr...full/159/8/1430 Interesting paper on the anorexia related to PANDAS and D8/17 expression. Buster, thanks for your reply. I am going to ask our doc about this. I plan to ask for my son's second infusion to be high dose. I anticipate problems, since his IVIG is covered under immune deficiency diagnosis. What happens if we do high dose? I think insurace will refuse to cover the extra product. Today, after increased sinus issues/stubborn sinus infection, his body ocd is REALLY bad. More worried about it now. [sORRY.. JUST REALIZED THIS TOPIC HAS BEEN DISCUSSED ALREADY, THE D8/17 STUFF] Edited January 19, 2011 by Phasmid Link to comment Share on other sites More sharing options...
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