L Haven

I agree with you Vickie, and I'm reminded that developmentally, beginning to understand and and deal with the reality of dying is age-appropriate for kindergarten/first graders. Sort of mastering the Macabre, I guess. Lena

PANDAS is so all-encompassing that I think ANYTHING they do during an episode is probably PANDAS-related/influenced. I don't mean to sound cavalier, but I wouldn't worrry too much because I think it will pass. My son has been drawing things he never had an interest in before, and they always include some form of violence (eg Dinos in a bloody battle, pirates walking the plank) and weapons. It troubles me, but I haven't dissuaded him because I think it may be an expression of, and an outlet for, his anger and helplessness about having PANDAS. At least he shows them to me and chuckles about the silliness! And Halloween is awfully shiny and candy-filled, so perhaps your daughter is reacting to the excitement and newness of that. Best wishes, Lena

For me, the self-injury/self-hating has been hard to talk about, so I appreciate your replies. I also want to gently say, without sounding alarmist or negative, that I think we need to be aware that when a doctor hears of this symptom, he/she may take things in a very different direction, and I say this as both a psychologist and a parent. Although my son was a neurology patient on the neurology floor, when we were admitted to Children's for IVIG we were met only by a psychiatrist (actually still an intern). My son's room had a very large man (a "babysitter) sitting in it in case my child needed to be restrained. He was to stay in the room with us. My child's hospital bed was fitted with restraints. For two days we were barraged by psychiatrists pressuring us to allow them to admit my 10-year old to the hospital's locked psychiatric ward. This ward is for very seriously disturbed kids. If I left the room momentarily, on return I would find 2 or 3 psychiatrists talking to my child without my permission. They seemed incapable of understanding the difference between a teenager cutting herself with a razor blade, and a 10 year old with PANDAS. My son has never, ever been violent (I mean, this kid is nice to bugs); he hadn't even left a bite or scratch mark on his arm. And now my son's chart says PARENTS REFUSED PSYCHIATRIC HOSPITALIZATION.

Yes, we've hidden sharp things, too.

Wow - Sammy's story is on the aol main page! "Determined Mom Saves Teen's Life . . . "

Yikes, sorry for all the repeat posts. I think I get it now . . . Lena

And Susan, my son has said awful things about himself too. And drawn pictures, or slipped notes under my door, saying & showing "bad" things about himself. It's scary to me - I never want him to feel that way about himself. And of course, logic doesn't help - that's the nature of this beast - so saying things like, "But if you're bad, why do you have so many friends?" never works, so I feel I have no way to "talk back" to the irrationality. Lena

From @18 months old: head banging on walls and the floor, later started biting hands and wrists, over the years has added punching herself in the head, kneeing herself in the face, slamming herself in the hips w/ elbows. She used to do a lot of pinching on her arms and thighs, but hasn't done that in a while. She doesn't want o do this, wants us to keep her safe, and we try, but we take the beating when we interfere. She tries to "keep her hands nice" sometimes, too. The urges overpower her though. This is the absolute worst part of this whole thing for us.... Yes, you're right. It is the worst part.

From @18 months old: head banging on walls and the floor, later started biting hands and wrists, over the years has added punching herself in the head, kneeing herself in the face, slamming herself in the hips w/ elbows. She used to do a lot of pinching on her arms and thighs, but hasn't done that in a while. She doesn't want o do this, wants us to keep her safe, and we try, but we take the beating when we interfere. She tries to "keep her hands nice" sometimes, too. The urges overpower her though. This is the absolute worst part of this whole thing for us.... Yes, you're right. It is the worst part.

From @18 months old: head banging on walls and the floor, later started biting hands and wrists, over the years has added punching herself in the head, kneeing herself in the face, slamming herself in the hips w/ elbows. She used to do a lot of pinching on her arms and thighs, but hasn't done that in a while. She doesn't want o do this, wants us to keep her safe, and we try, but we take the beating when we interfere. She tries to "keep her hands nice" sometimes, too. The urges overpower her though. This is the absolute worst part of this whole thing for us....

Are any other families dealing with PANDAS seeing any self-injury? When my son is in meltdown mode, when it's all at it's worst, and he is sobbing on the floor - he will sometimes bite his own arm, or slap his own face. It's really distressing. Sometimes he fights the urges, even grabbing one hand with another to stop the slap, but it's a huge struggle. Anyone else??

Hi Eileen, In 2003 my 6 year old was diagnosed with PANDAS at Children's Hospital Boston. There were two possible treatments: Medication, or IVIG. No one we knew had even heard the disease, and IVIG scared us. We declined. In 2007 we had a second, far more severe episode of PANDAS. My son had IVIG about 18 months ago. I'm sorry to report that he didn't experience any relief. When we requested IVIG we were very surprised to discover that IVIG was no longer a treatment option at Children's Hospital. It was as though it had never existed. We moved heavan and earth, and my son finally had the procedure. He breezed through the procedure with no side effects. I'm happy to answer any questions about our experience if anyone has them. Best wishes, Lena

Were your peds at Children's Hospital in Boston? Or private practice pediatricians? We would have to cast our vote with "inconsistencies," unfortunately. Although at least, even in 2003, they believed in PANDAS. We've also done EEGs, EKGs, MRIs (to rule out a brain tumor), and nighttime monitoring (in the hospital) with video camera and leads attached all over his body. I'm glad you have the phone convo set up with Dr. Lattimer :-) And thank you for replying! Lena

Best wishes on the IVIG. Yes, it seems plasmaphareses/plasma exchange/PEX (these are all the same thing, yes?) is something we need to look into. He did have a course of antibiotics, but never over a long period of time as it sounds like some children have. We had a truly infuriating, awful experience with hospitalization, and I think as a result we've become very cautious about interventions. But we must try again. Thank you for the advice. I will check into Dr. Latimer. By the way, although IVIG wasn't the help we'd hoped for, my son breezed through the procedure with no side effects at all. Again, best wishes - Lena

You guys are amazing . . . I can't describe what its like to talk to someone who understands . . . after all this time of trying to explain. Thank you for posting back. We live in Boston. He had IVIG only in 2007. It seems a number of people have had episodes or exacerbations with Fifth Disease. He's had antibiotics intermittently - as soon as we suspected an infection, but never on a long-term basis as some of you describe. I think we need to do that. I'll make an appointment Monday. We do periodically all get checked for strep.

My son's first episode, in 2003, occurred as he was opening his presents on his 6th birthday.

Hi Everyone, I'm so overwhelmed at having found this message board . . .not sure where to jump in. I'm happy to meet you. I've been able to find VERY little info on cognitive deficits, other than the deterioration in handwriting, which is fairly common. For older kids, the deficits are tough, because they're aware of the differences in themselves. Here's my story: In 2003 my bright, happy Checkers prodigy ("I've never met a grown-up I couldn't beat!") was in kindergarten, and having a great year. He developed scarlet fever (which I had always imagined as some turn-of-the-century, languishing disease - actually, it's "just" strep and a rash - who knew?). He was treated with antibiotics and good to go. About 3 months before kindergarten ended, I noticed that the teacher's attitude toward my child had changed. When I asked her about it, she said that he had recently become "quarrelsome," and hypothesized that he had "multiple learning disabilities." As a former teacher, I couldn't believe we were talking about the same kid. I was puzzled. About a week later, while opening presents on his 6th birthday, my son's head and neck body to jerk. He also developed a vocal tic - a sort of brief, high screech that was almost constant. The symptoms made no sense to me, and they were growing worse. We had no family history to help explain it. I checked into EVERYTHING, and then late one night I stumbled on some paragraph about children who've recently had strep, and subsequent behavioral changes. I printed it out and took it to my pediatrician the next morning. She said, "I've never heard of this," gave him a mega-injection of antibiotics, and called the Neurology Department of Children's Hospital. His ASO was very high. His neurologist diagnosed him with PANDAS, and said it was the clearest case of PANDAS they had, because the previous strep infection had been documented by the pediatrician. One doctor seemed quite excited about this. At that time, many people did not believe in PANDAS as a discrete entity. One physician (an immunologist we went to) had never heard of PANDAS, and pronounced it "ridiculous." At that time the treatment was pills (a major tranquilizer, and a neuroleptic (Thorazine) and IVIG. We tried 3 courses of different medicines; his symptoms worsened. He also had some visual distortions - has anyone else experienced this? He would see blue lines, or the bark on a tree would be a frightening face, etc. He had terrible side effects from the medication. Truly, he was more miserable with them than without. After 4 trials of different medications, we decided to wait it out with no more pills. He entered first grade still ticcing and screeching (although it was growing quieter), with separation anxiety and a bee phobia. About half way through the school year the symptoms slowly eased up, and ended. We had 4 lovely PANDAS-free years. We hoped we were in the category of kids who only experienced one episode. We weren't. Strep swept through his classroom, and he got sick. He missed 4 1/2 months of 4th grade. His motor ticcing was so severe that his muscles ached. He was frequently frightened - even of things like the second floor of our house. He couldn't sleep alone. He had headaches and dizzy spells. He was angry. He began to have "misery tantrums" - I'm not sure how else to explain them. He would twist o the floor and sob, "I want to die." This could go on for hours. His was admitted to the neurology department at Children's. He had IVIG. Nothing changed. We spent a total of 4 days there. I discovered that now, EVERYBODY believed in PANDAS, and nobody (at least here in Boston) believed in IVIG anymore. We fought hard to get it, even meeting with a panel of neurologists to argue our case. Now they believed in Orap, which is an anti-psychotic, and can cause tardive dyskinesia (the hallmark of which is ticcing - now there's irony.) Why does Orap help tics? Dunno. After about a year, the symptoms began to subside. Then he caught Fifth Disease at school. To our horror, all the symptoms returned. We had thought it was only strep we had to worry about. Where we're at now: It'll be two years in January. We haven't actually had a period that was completely symptom-free. Each time my son begins to get a cold or flu, the symptoms return full-force. We can actually TELL he's about to get sick by the tics and tears and fears. We've noticed major cognitive changes - our 11 year old forgot the multiplication tables, couldn't name the months of the year, frequently seemed foggy about events that were routine. His teachers noticed the change immediately. Always good at Math, even addition took him a bit of time. He couldn't read with fluency, where formerly he'd devoured the Harry Potter books. The thing that troubles me the most is how he feels about himself. PANDAS has been going on so long that it has changed who he is. He uses anti-anxiety medication and anti-depressants. He has become pessimistic and self-conscious. To say his "self-esteem" is low is a major understatement. I miss him; HE misses him. So, a day at a time.

Hi Everyone, I'm so overwhelmed at having found this message board . . .not sure where to jump in. I'm happy to meet you. I've been able to find VERY little info on cognitive deficits, other than the deterioration in handwriting, which is fairly common. For older kids, the deficits are tough, because they're aware of the differences in themselves. He was Here's my story: In 2003 my bright, happy Checkers prodigy ("I've never met a grown-up I couldn't beat!") was in kindergarten, and having a great year. He developed scarlet fever (which I had always imagined as some turn-of-the-century, languishing disease - actually, it's "just" strep and a rash - who knew?). He was treated with antibiotics and good to go. About 3 months before kindergarten ended, I noticed that the teacher's attitude toward my child had changed. When I asked her about it, she said that he had recently become "quarrelsome," and hypothesized that he had "multiple learning disabilities." As a former teacher, I couldn't believe we were talking about the same kid. I was puzzled. About a week later, while opening presents on his 6th birthday, my son's head and neck body to jerk. He also developed a vocal tic - a sort of brief, high screech that was almost constant. The symptoms made no sense to me, and they were growing worse. We had no family history to help explain it. I checked into EVERYTHING, and then late one night I stumbled on some paragraph about children who've recently had strep, and subsequent behavioral changes. I printed it out and took it to my pediatrician the next morning. She said, "I've never heard of this," gave him a mega-injection of antibiotics, and called the Neurology Department of Children's Hospital. His ASO was very high. His neurologist diagnosed him with PANDAS, and said it was the clearest case of PANDAS they had, because the previous strep infection had been documented by the pediatrician. One doctor seemed quite excited about this. At that time, many people did not believe in PANDAS as a discrete entity. One physician (an immunologist we went to) had never heard of PANDAS, and pronounced it "ridiculous." At that time the treatment was pills (a major tranquilizer, and a neuroleptic (Thorazine) and IVIG. We tried 3 courses of different medicines; his symptoms worsened. He also had some visual distortions - has anyone else experienced this? He would see blue lines, or the bark on a tree would be a frightening face, etc. He had terrible side effects from the medication. Truly, he was more miserable with them than without. After 4 trials of different medications, we decided to wait it out with no more pills. He entered first grade still ticcing and screeching (although it was growing quieter), with separation anxiety and a bee phobia. About half way through the school year the symptoms slowly eased up, and ended. We had 4 lovely PANDAS-free years. We hoped we were in the category of kids who only experienced one episode. We weren't. Strep swept through his classroom, and he got sick. He missed 4 1/2 months of 4th grade. His motor ticcing was so severe that his muscles ached. He was frequently frightened - even of things like the second floor of our house. He couldn't sleep alone. He had headaches and dizzy spells. He was angry. He began to have "misery tantrums" - I'm not sure how else to explain them. He would twist o the floor and sob, "I want to die." This could go on for hours. His was admitted to the neurology department at Children's. He had IVIG. Nothing changed. We spent a total of 4 days there. I discovered that now, EVERYBODY believed in PANDAS, and nobody (at least here in Boston) believed in IVIG anymore. We fought hard to get it, even meeting with a panel of neurologists to argue our case.Now they believed in Orap, which is an anti-psychotic, and can cause tardive dyskinesia (the hallmark of which is ticcing - now there's irony.) Why does Orap help tics? Dunno. After about a year, the symptoms began to subside. Then he caught Fifth Disease at school. To our horror, all the symptoms returned. We had thought it was only strep we had to worry about. Where we're at now: It'll be two years in January. We haven't actually had a period that was completely symptom-free. Each time my son begins to get a cold or flu, the symptoms return full-force. We can actually TELL he's about to get sick by the tics and tears and fears. We've noticed major cognitive changes - our 11 year old forgot the multiplication tables, couldn't name the months of the year, frequently seemed foggy about events that were routine. His teachers noticed the change immediately. Always good at Math, even addition took him a bit of time. He couldn't read with fluency, where formerly he'd devoured the Harry Potter books. The thing that troubles me the most is how he feels about himself. PANDAS has been going on so long that it has changed who he is. He uses anti-anxiety medication and anti-depressants. He has become pessimistic and self-conscious. To say his "self-esteem" is low is a major understatement. I miss him; HE misses him. So, a day at a time.