PANDAMOMMN

Thank you for your quick reply! We had not been on prophylactic antibiotics over the past nearly three years until just this fall. Our pediatrician (not the original woman who ignored the symptoms, but a better one in the same practice) has been very opposed to antibiotic use. He finally relented and allowed us a prescription for amoxicillian that we have used for about three weeks. Doesn't seem to be doing too much. When my son had mycoplasma pneumonia in Sept. and was on Zithromax he was a COMPLETELY different child--so much better. We realized we had seen the same thing after an antibiotic injection when he had strep in May. However, the pediatrician was very skeptical. What type of antibiotic results have you seen?

Debbie, Have you looked into Sydenham's Chorea? There are both heart-related symptoms and the skin bumps as part of that condition (and it is very PANDAS-like). Here is a link to a Sydenham's symptom article: http://www.mdvu.org/library/disease/sydenhams/syd_sym.asp Just a thought.

I first posted to this site in Sept. 2007, in our first year with the PANDAS in our life. My son is 10 and though life is much more functional and liveable, he struggles daily. I'm excited to see so much more activity under the PANDAS heading here! My initial post was buried somewhere else in the site. I decided maybe providing more information on our PANDAS journey would perhaps help others identify what additional information our family should know. It's a long story that has been our family's life since late Dec./Jan. 2007. We have had four different psychiatrists confirm a PANDAS diagnosis--but have struggled mightily finding a pediatrician who fully believes in PANDAS. I feel this failure on the pediatrician end resulted in much more damage and trauma in our lives. Here is our PANDAS story. My now-10-year-old son, Evan, started acting very "un-Evan-like" just after Christmas 2006 (at ate 7 1/2 and in second grade at that time). He started out on Dec. 26, 2006 saying he felt like he had staples in his mouth and spitting into the sink every few minutes. Then he started measuring himself every few minutes on a wall growth chart. Our normally compliant, happy-go-lucky child started being very defiant and odd. He sometimes would stare at us like we weren’t even standing there talking to him. His eyes were dialated in late afternoon. He couldn’t tolerate loud noises. We started going to the pediatrician every week, trying to get it sorted out. Initially she said he had a sinus infection and speculated that it may be causing pressure on his frontal lobe, and he seemed to get better right after getting antibiotics, but his behavior became more and more bizarre as we finished the course of antibiotics. He has been prone to both sinus infections and strep infections throughout his life. No strep test was performed in January as the doctor was focusing on the sinuses. Because I could see an improvement on the antibiotics (Zithromax) and could definitely see when the Zithromax dosage was waning that he got worse, I pleaded for continuation of the antibiotics. The pediatrician refused. A perfectly normal and fully functional child before, Evan seemed to have no idea why he was doing odd things. He couldn't seem to figure out how to put on his coat or boots anymore. He tried to put his stocking cap over his hood, for example, or would forget to put on a shirt in the morning. He couldn't sit still in the afternoons or concentrate at school. He couldn't perform multi-step tasks. He suddenly couldn't follow any directions. He stopped eating anything but bread and milk. He started wetting the bed. He stopped being able to use scissors or write. He was washing his hands until they bled. It was terrifying and very odd. January 2007 felt like we were racing against the clock trying to get it all figured out. We had him tested for everything from mercury poisoning to brain tumors to rabies. His second grade teacher was so amazing. She kept saying there had to be a medical reason and kept treating him the same, saying she had a completely different kid in class prior to Christmas but that she didn't want him to lose confidence in himself. I googled like crazy and pleaded with my pediatrician in mid-January 2007 that I thought it was something called Pediatric Autoimmune Neuropsychiatric Disorders Associated With Strep (PANDAS). The list of symptoms was an exact match. I contacted a PANDAS researcher at the National Institutes of Health (Dr. Susan Swedos) who seemed to agree. Our pediatrician ignored me. We desperately tried to get appointments with mental health professionals, but were put on two-month waiting lists. Then, at the end of January, Evan told several children at school, and the school guidance counselor, that he was going to take his life with scissors or a knife. He had a very convincing plan to carry this out. We were called immediately. We learned when a child presents "suicidal ideations," things are jerked out of your hands quite quickly in this day and age, even if the child is only 7. He was not going to be allowed back in school unless he had had a psychiatric evaluation. Our pediatrician's office refused to see him at that point and told us at that time there are only two places to take such a young child in the Twin Cities for this, Abbott Northwestern Hospital or Fairview Riverside. Because Abbott is attached to Minneapolis Children's Hospital, the children are admitted trough the Mpls. Children's emergency room, so we chose Abbott. Unfortunately, once we got to the Mpls Children's emergency room at 3:00 p.m., it became apparent they had no idea how to handle a child in psychiatric distress. And there were not beds at Abbott until 2 p.m. the next day. Evan was treated very, very badly at Children's and I can't even begin to relate the horrid events that unfolded there. He was put in restraints when he became claustrophobic in the exam room. He was given no less than 5 intramuscular injections of horrible anti-psychotic medications within 12 hours, all of this when he had not eaten for 24 hours. He was given no IVs. No blood tests were taken. It was a nightmare. A resident took my husband aside and said, "I don't know what your religious beliefs are, but have you considered exorcism?" Once he got to Abbott, things got a bit better (bearing in mind he was in a psychiatric ward with mostly 12-17-year olds-- they just don't get many 7-year-olds there. The first two days there were mostly spent trying to get him back to earth after the horrors of Mpls Children's as the medications worked out of his system. We were not allowed to stay with him overnight, which was very, very hard. He was diagnosed with PANDAS almost immediately as the psychiatrists at Abbott said there is absolutely no other condition that comes on with that combination of symptoms, that quickly. (We have no family history of OCD or mental illness on either side, and Evan had NONE of these behaviors prior to Dec. 26, 2007). Initially we were told that the PANDAS diagnosis was a good thing because that meant the damage was probably temporary. I am since questioning how "good" PANDAS is.... The Abbott psychiatrist thought that Evan wasn't really suicidal, but that his plans were the result of him feeling so terrible about all things he was doing that he couldn't control or understand. The Abbott psychiatrist started Evan on 30 mg. of Zoloft and handed us off to the University of Minnesota. Our family had no experience with psychiatric medications. We know now that Evan experienced the activation side effect of the Zoloft. At the time, we thought it was the PANDAS that caused him to leap over the furniture, knocking pictures off the wall. We felt as if we had a completely different child in our lives than the one we had prior to December. Even though this has become a lengthy description, it is a greatly simplified, and sterilized version of what have been living. The psychiatrist at Abbott found a psychiatrist and psychologist at the University of Minnesota (housed, ironically, at Fairview Riverside--the hospital we didn't choose to go to initially....) who supposedly were knowledgeable PANDAS researchers. Evan started going to the U of M to see a psychologist in February 2007. He was enrolled in a new PANDAS study at the U of M. He will not be receiving treatment as part of the study, but his experiences will be followed and documented. His normal life is gone. From February to June 2007 my son could not be in school for more than 1 hour at a time. He would run out of the school almost every day. He couldn't handle being in his classroom because it was too confining, but could sometimes tolerate the library. We kept taking him because he really wanted to be there. He was unable to learn anything. He started fainting unexplainably in March 2007 and stopping breathing while he was unconcious. This was completely new, as he had never done this before in his life. These symptoms (along with 2-3-hour rages) coincided with our taking him off the Zoloft (at the recommendation of the U of M psychiatry resident). We asked the psychiatrist and pediatrician whether the rages and fainting could be Zoloft-related, but no one seemed to hear us. We took Evan to Fairview University Hospital when he was repeatedly passing out and turning blue in March. They put him in the Pediatric Intensive Care Unit. He was claustrophobic. They tied him down to the bed for 4 solid days (this is not even legal we have since found out), ostensibly to keep his IVs in. They performed a sedated EEG, but the results were inconclusive because of over-sedation. They also performed a lumbar puncture. They never did find a reason for the fainting, but started him on an anti-seizure medication just in case seizures were the cause (Depakote at 250 mg twice/day). He was so traumatized by that experience in the hospital that he would not go in buildings, with the exception of his elementary school for the entire months of March, April, May and most of June 2007. He would jump out of moving vehicles if we tried to take him places. Life pretty much stopped for us outside of this house. Experts brought in by our school district suspected he suffered post-traumatic stress as a result of the hospitalization experiences at Fairview University. Because my husband is am amazing person with unlimited patience, he started taking Evan on drives every single night (Evan called these their "cruises.") in spite of the risk of Evan jumping out of the car. Our therapists told us, "If you can't get him in the building, we can't do anything for you," and left it at that. (We have since found this is also unethical, they should have provided us with some type of plan to help us get him functioning again). We felt so alone and lost. My husband alone came up with the idea of taking Evan for drives every night and then he gradually started working to try to get Evan to go into the local Cub Foods grocery store. It is a big, open store and he coaxed Evan to go in to get a slice of Pizza or candy. Eventually they worked into going into a video store. Over the years, we worked back into going into buildings gradually. And so we plod onward. Apparently he has one of the worst PANDAS cases that has been seen in Minnesota because it just wouldn't resolve. His psychiatrist suggested we start him on Citalopram in April 2007. We titrated the dose up very gradually after the Zoloft activation. The psychiatrist said PANDAS kids seem to tend to react differently to SSRIs than other children. Because Evan's OCD symptoms are so out-of-control (wore the same clothing from March to Sept. 2007, could only use certain "routes" when walking ANYWHERE, couldn't eat food anyone else had touched, etc.), we increased his Citalopram 2 in Sept. 2007 to 10 mg. in the a.m. and 15 mg. in the p.m. The OCD almost completely went away with the increased Citalopram dosage and the passage of time. There are many other details I could relate, but this gives a general idea of what we have been through. How long should we expect this to go on? We need to hear some happy endings with PANDAS children. The child has no friends anymore. He has an amazing, upbeat attitude, but every day is still a bit of a struggle. Any thoughts, folks?

I decided maybe providing more information on our PANDAS journey would perhaps help others identify what additional information our family should know. It's a long story for only having been our family's life since late Dec./Jan. We have had four different psychiatrists confirm a PANDAS diagnosis--but our pediatrician does not believe in PANDAS. Consequently, we are terrified of what is going to happen next when we have no pediatrician on our "team." Here's the story: My now-8-year-old son, Evan, started acting very "un-Evan-like" just after Christmas. He started out on Dec. 26, 2006 saying he felt like he had staples in his mouth and spitting into the sink every few minutes. Then he started measuring himself every few minutes on a wall growth chart. Our normally compliant, happy-go-lucky child started being very defiant and odd. He sometimes would stare at us like we weren’t even standing there talking to him. His eyes were dialated in late afternoon. He couldn’t tolerate loud noises. We started going to the pediatrician every week, trying to get it sorted out. Initially they said he had a sinus infection and speculated that it may be causing pressure on his frontal lobe, and he seemed to get better right after getting antibiotics, but his behavior became more and more bizarre as we finished the course of antibiotics. He has been prone to both sinus infections and strep infections throughout his life. No strep test was performed in January as the doctor was focusing on the sinuses. Evan seemed to have no idea why he was doing odd things. He couldn't seem to figure out how to put on his coat or boots anymore. He tried to put his stocking cap over his hood, for example, or would forget to put on a shirt in the morning. He couldn't sit still in the afternoons or concentrate at school. He couldn't perform multi-step tasks. He suddenly couldn't follow any directions. He stopped eating anything but bread and milk. He started wetting the bed. He stopped being able to use scissors or write. He was washing his hands until they bled. It was terrifying and very odd. January felt like we were racing against the clock trying to get it all figured out. We had him tested for everything from mercury poisoning to brain tumors to rabies. His second grade teacher was so amazing. She kept saying there had to be a medical reason and kept treating him the same, saying she had a completely different kid in class prior to Christmas but that she didn't want him to lose confidence in himself. I googled like crazy and pleaded with my pediatrician in mid-January that I thought it was something called Pediatric Autoimmune Neuropsychiatric Disorders Associated With Strep (PANDAS). The list of symptoms was an exact match. I contacted a PANDAS researcher at the National Institutes of Health (Dr. Susan Swedos) who seemed to agree. Our pediatrician ignored me. We desperately tried to get appointments with mental health professionals, but were put on two-month waiting lists. Then, at the end of January, Evan told several children at school, and the school guidance counselor, that he was going to take his life with scissors or a knife. He had a very convincing plan to carry this out. We were called immediately. We learned when a child presents "suicidal ideations," things are jerked out of your hands quite quickly in this day and age, even if the child is only 7. He was not going to be allowed back in school unless he had had a psychiatric evaluation. Our pediatrician's office told us there are only two places to take such a young child in the Twin Cities for this, Abbott Northwestern Hospital or Fairview Riverside. Because Abbott is attached to Minneapolis Children's Hospital, the children are admitted trough the Mpls. Children's emergency room, so we chose Abbott. Unfortunately, once we got to the Mpls Children's emergency room, it became apparent they had no idea how to handle a child in psychiatric distress. And there were not beds at Abbott until 2 p.m. the next day. Evan was treated very, very badly at Children's and I can't even begin to relate the horrid events that unfolded there. He was put in restraints when he became claustrophobic in the exam room. He was given no less than 5 intramuscular injections of horrible anti-psychotic medications within 12 hours, all of this when he had not eaten for 24 hours. He was given no IVs. No blood tests were taken. It was a nightmare. Once he got to Abbott, things got a bit better (bearing in mind he was in a psychiatric ward with mostly 12-17-year olds-- they just don't get many 7-year-olds there. The first two days there were mostly spent trying to get him back to earth after the horrors of Mpls Children's as the medications worked out of his system. We were not allowed to stay with him overnight, which was very, very hard. He was diagnosed with PANDAS almost immediately as the psychiatrists at Abbott said there is absolutely no other condition that comes on with that combination of symptoms, that quickly. (We have no family history of OCD or mental illness on either side, and Evan had NONE of these behaviors prior to Dec. 26). Initially we were told that the PANDAS diagnosis was a good thing because that meant the damage was probably temporary. I am since questioning how "good" PANDAS is.... The Abbott psychiatrist thought that Evan wasn't really suicidal, but that his plans were the result of him feeling so terrible about all things he was doing that he couldn't control or understand. The Abbott psychiatrist started Evan on 30 mg. of Zoloft and handed us off to the University of Minnesota. Our family had no experience with psychiatric medications. We know now that Evan experienced the activation side effect of the Zoloft. At the time, we thought it was the PANDAS that caused him to leap over the furniture, knocking pictures off the wall. We felt as if we had a completely different child in our lives than the one we had prior to December. Even though this has become a lengthy description, it is a greatly simplified, and sterilized version of what have been living. The psychiatrist at Abbott found a psychiatrist and psychologist at the University of Minnesota (housed, ironically, at Fairview Riverside--the hospital we didn't choose to go to initially....) who supposedly were knowledgeable PANDAS researchers. Evan has been going to the U of M to see a psychologist since February. He was enrolled in a new PANDAS study at the U of M. He will not be receiving treatment as part of the study, but his experiences will be followed and documented. His normal life is gone. He hasn't been in school for more than 1 hour at a time since January, missing 42 days of school total. He would run out of the school almost every day. He couldn't handle being in his classroom because it was too confining, but could sometimes tolerate the library. We kept taking him because he really wanted to be there. He was unable to learn anything. He started fainting unexplainably in March and stopping breathing while he was unconcious. This was completely new, as he had never done this before in his life. These symptoms (along with 2-3-hour rages) coincided with our taking him off the Zoloft (at the recommendation of the U of M psychiatry resident). We asked whether the rages and fainting could be Zoloft-related, but no one seemed to hear us. We took Evan to Fairview University Hospital. They put him in the Pediatric Intensive Care Unit. He was claustrophobic. They tied him down to the bed for 4 solid days (this is not even legal we have since found out), ostensibly to keep his IVs in. They performed a sedated EEG, but the results were inconclusive because of over-sedation. They also performed a lumbar puncture. They never did find a reason for the fainting, but started him on an anti-seizure medication just in case seizures were the cause (Depakote at 250 mg twice/day). He was so traumatized by that experience in the hospital that he would not go in buildings, with the exception of his elementary school for the entire months of March, April, May and most of June. He would jump out of moving vehicles if we tried to take him places. Life pretty much stopped for us outside of this house. Experts brought in by our school district suspect he has post-traumatic stress as a result of the hospitalization experiences. Because my husband is am amazing person with unlimited patience, he started taking Evan on drives every single night (Evan called these their "cruises.") in spite of the risk of Evan jumping out of the car. Our therapists told us, "If you can't get him in the building, we can't do anything for you," and left it at that. (We have since found this is also unethical, they should have provided us with some type of plan to help us get him functioning again). We felt so alone and lost. My husband alone came up with the idea of taking Evan for drives every night and then he gradually started working to try to get Evan to go into the local Cub Foods. It is a big, open store and he coaxed Evan to go in to get a slice of Pizza or candy. Eventually they worked into going into a video store. Now he goes in a few buildings, but not many. And so we plod onward. Apparently he has one of the worst PANDAS cases that has been seen in Minnesota because it just won't resolve. His psychiatrist suggested we start him on Citalopram in April. We titrated the dose up very gradually after the Zoloft activation. The psychiatrist said PANDAS kids seem to tend to react differently to SSRIs than other children. Because Evan's OCD symptoms are so out-of-control (has been wearing the same clothing since March, can only use certain "routes" when walking ANYWHERE, can't eat food anyone else has touched, etc.), we increased his Citalopram 2 weeks ago to 10 mg. in the a.m. and 15 mg. in the p.m. And, we are terrified if he gets another strep infection he could be further set back. We cannot get him in any medical facilities at this point due to his anxiety. We did finally manage to get him to go back to the psychologist office in July, but all he has been doing there is playing in a sand table to get his confidence back in being there (at $300/appointment). I don't know what is going to happen regarding school. We have had meetings and meetings and meetings with them, but I don't know if he will be able to participate in school this fall or not. There are many other details I could relate, but this gives a general idea of what we have been through. How long should we expect this to go on? We need a pediatrician who can help us build our child's trust in the medical profession back up, in addition to one who at least BELIEVES in PANDAS. We were wondering about trying to get Evan to Chicago to see Dr. Miroslav Kovacacek ((found him at www.webpediatrics.com)) (I know this is an incorrect spelling). Has anyone seen him? We need to hear some happy endings with PANDAS children. Will this ever get better? How?? Thanks for any insight.

I am new to this site and I'm hoping for some answers. Our family has been living a PANDAS nightmare with our 8-year-old son ever since late December 2006. I am desperate to learn about any "happy endings" people might be having. How long do children tend to suffer with it? Do they ever come back to "normal?" It seems everything that can go wrong has with my son's diagnosis, treatment, etc. Has anyone pursued IVIG? Where are the best pediatricians? Our story is a long one and I want to make sure I am in the "right place" here before I share all of the details.