Discussions By Condition: I cannot get a diagnosis.

Elevated ASO Titers (PANDAS)

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: cciosek
  • August 13, 2008
  • 02:41 AM

I wanted to share my story and ask for some advise because I'm not sure if I'm treating my son with a wrong diagnosis. My son was diagnosised with ADHD & OCD. He is currently taken 5mg Adderall XR & 12mg Zolof for his ADHD & axiety/OCD behaviors. He is six years old and just started these medications three months ago. I have seen a difference in his behaviors but not a huge one and I'm not sure if it's more ADHD or OCD/Tics/Tourettes but after going through all symtoms with the doctor this is what he came up with. We have been struggling with wierd behavior for about two years and new something was just not right but waited because maybe these behaviors were age appropiate. Once he started in school, the teachers even noticed the same behaviors we were experiencing at home. These behaviors include: very fidgety, unable to make eye contact, anxiety over a pencil falling on the floor and not being able to move forward without dwelling on that all day, shakes his head, talks excessively and this just names a few. The behaviors are worse on some days than others and we can't see to figure out why. We ran blood work last year and noticed that his ASO titers were high (478) and the neurologist told me to see the pediatrican to see if he has strep throat. Well for about seven months, every time I went to the pediatrian, I had them check for strep and most of the time it was positive but no signs of a sore throat. So the conclusion was that he was a carrier for strep throat. I had done some research at that point, and found something on the internet about PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep) My son fits all of the characteristics and I was so happy to finally figure out what was going on with him. Well, when I mentioned this to the doctors, they thought I was nuts. He didn't have this. So I continued struggling with him until we started the meds about three months ago. Well, the past two months, he started having bad headaches and frequent urination. I had to count and it was 15 times that he went in 4 hours. Even my family couldn't believe that he had to keep going so much. Again, I went to the doctor to make sure he didn't have an infection and I also mentioned the headaches. The pediatrician said everything looked fine and that I should mention to the neurologist when I see him next. So that is what I did and more blood work was done to see his levels. Well, his RBC & WBC were just below normal & his ASO titer wase now at 1178. I don't know what to do next. I truly believe my son fits the diagnois for PANDAS and I want to make sure the meds that he is taking are OK for that diagnois. I go to bed at night wondering if I'm doing the right thing with the medicines. I'm hoping that someone has experienced anything like this and has some advise for me. I don't want the doctors to think I'm looking for this to be PANDAS but that is how they make me feel. Need your advise. If you have any input please advise.

Cheryl

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  • I wanted to share my story and ask for some advise because I'm not sure if I'm treating my son with a wrong diagnosis. My son was diagnosised with ADHD & OCD. He is currently taken 5mg Adderall XR & 12mg Zolof for his ADHD & axiety/OCD behaviors. He is six years old and just started these medications three months ago. I have seen a difference in his behaviors but not a huge one and I'm not sure if it's more ADHD or OCD/Tics/Tourettes but after going through all symtoms with the doctor this is what he came up with. We have been struggling with wierd behavior for about two years and new something was just not right but waited because maybe these behaviors were age appropiate. Once he started in school, the teachers even noticed the same behaviors we were experiencing at home. These behaviors include: very fidgety, unable to make eye contact, anxiety over a pencil falling on the floor and not being able to move forward without dwelling on that all day, shakes his head, talks excessively and this just names a few. The behaviors are worse on some days than others and we can't see to figure out why. We ran blood work last year and noticed that his ASO titers were high (478) and the neurologist told me to see the pediatrican to see if he has strep throat. Well for about seven months, every time I went to the pediatrian, I had them check for strep and most of the time it was positive but no signs of a sore throat. So the conclusion was that he was a carrier for strep throat. I had done some research at that point, and found something on the internet about PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep) My son fits all of the characteristics and I was so happy to finally figure out what was going on with him. Well, when I mentioned this to the doctors, they thought I was nuts. He didn't have this. So I continued struggling with him until we started the meds about three months ago. Well, the past two months, he started having bad headaches and frequent urination. I had to count and it was 15 times that he went in 4 hours. Even my family couldn't believe that he had to keep going so much. Again, I went to the doctor to make sure he didn't have an infection and I also mentioned the headaches. The pediatrician said everything looked fine and that I should mention to the neurologist when I see him next. So that is what I did and more blood work was done to see his levels. Well, his RBC & WBC were just below normal & his ASO titer wase now at 1178. I don't know what to do next. I truly believe my son fits the diagnois for PANDAS and I want to make sure the meds that he is taking are OK for that diagnois. I go to bed at night wondering if I'm doing the right thing with the medicines. I'm hoping that someone has experienced anything like this and has some advise for me. I don't want the doctors to think I'm looking for this to be PANDAS but that is how they make me feel. Need your advise. If you have any input please advise. CherylOur son is 6 too, he had a titer of 1200 in may, 900 in june ad now it's 400. Normal is Take care!
    Anonymous 42789 Replies
    • September 20, 2009
    • 08:19 AM
    • 0
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  • I wanted to share my story and ask for some advise because I'm not sure if I'm treating my son with a wrong diagnosis. * * *I don't want the doctors to think I'm looking for this to be PANDAS but that is how they make me feel. Need your advise. If you have any input please advise. CherylCheryl,I'm very sorry to hear about your son. We've gone though a similar nightmare with our child. I am not a doctor, I'm just an educated medical consumer, but I feel that I could write a book on PANDAS. We're still not sure whether or not our child has PANDAS, but it made sense to us (and it continue to make sense to us) to treat it as possible PANDAS by giving treatments that WOULD be effective IF it were PANDAS. As with many diseases, we find that we continually have to balance the potential risks and side effects of the treatments with potential benefits based on the severity of the illness, and you will too. The PANDAS theory is relatively new (10 years old), and there is a lot of controversy around the PANDAS theory. The notion that an psychiatric disorder (OCD) presently classified as an "anxiety disorder" may be triggered by a bacterial infection runs counter to a hundred years of freudian psychiatric doctrine, and many practitioners who have not taken the time to review the research are inclined to dismiss it outright. However, medical scientists who are actually involved in PANDAS research are mostly in agreement that for some subset of pediatric OCD patients, their illness is triggered or exacerbated by an autoimmune mechanism triggered by the strep bacteria. They are not sure what the exact process is (which is at the core of most of the controversy), but fact remains that, when researchers took a group of kids with sudden-onset OCD that coincided with a strep infection, and gave them either a procedure that removed the antibodies from their blood, or a procedure that regulates the body's immune response, their psychiatric symptoms improved dramatically.If your doctor thinks that PANDAS is bunk, and is not willing to review the studies and reviews about PANDAS published in his profession's professional journals, then you should run, not walk, to a doctor who recognizes the disease. Be prepared to have to look hard--your best bet (though by no means a sure bet) may be your nearest children's (research) hospital. Be sure to see a rhumatologist or an immunologist. The closest well-studied disease akin to PANDAS is called Sydenham's Chorea, which is in the realm of rhumatology. If a neurologist doesn't see anything obvious in a basic neurological exam or on an MRI, he's likely to send you home with a pat on the head. Regardless of whether your child is a carrier of strep or has a symptomatic strep infection, your doctor should be willing to treat with an extended course of antibiotics to rout out the strep, and prophylacticly to prevent new infection. With your child's ASO titers skyrocketing as you describe, antibiotics would seem to be no-brainer. Augmentin is an antibiotic that is thought to have anti-inflammatory effects as well, and at least one PANDAS researcher recommended its use to us to treat suspected PANDAS. Killing the bacteria may be insufficient, because people still have circulating antibodies long after the bacteria that triggered them is gone. Infections trigger many different antibodies, and researchers have not yet identified which strep antibodies cause PANDAS; but they are pretty sure that it is NOT ASO antibodies. Moreover, it is suspected that while strep is the initial trigger of PANDAS, other infections, including viral infections, may trigger subsequent PANDAS episodes.If a few months on antibiotics don't help, the next step might be a course of prednisone (2-5 weeks), both diagnostically and as a potential treatment. This is done concurrently with more antibiotics. Diagnostically, if the OCD symptoms improve after a course of prednisone, it is more likely to be PANDAS, because prednisone is an anti-inflammatory and immune suppressant drug, not an anti-anxiety drug (in fact, prednisone often causes nasty mood swings as one of its unpleasant but short-term side effects). At least one neurologist who specializes in PANDAS has told me that she sees some PANDAS kids get better after prednisone and without further treatment other than long-term prophylactic antibiotics. The next step after that might be IVIG, which is the IV administration of a blood product that regulates the body's immune response. We found that the doctors who were most resistant to treating as possible PANDAS were the ones who were the least understanding of the severity of the disease that our child (and family) was experiencing. Good luck.-asaxon
    asaxon 2 Replies
    • September 21, 2009
    • 05:09 AM
    • 0
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  • I wanted to share my story and ask for some advise because I'm not sure if I'm treating my son with a wrong diagnosis. * * * I don't want the doctors to think I'm looking for this to be PANDAS but that is how they make me feel. Need your advise. If you have any input please advise. CherylCheryl,I'm very sorry to hear about your son. We've gone though a similar nightmare with our child. I am not a doctor, I'm just an educated medical consumer, but I feel that I could write a book on PANDAS. We're still not sure whether or not our child has PANDAS, but it made sense to us (and it continue to make sense to us) to treat it as possible PANDAS by giving treatments that WOULD be effective IF it were PANDAS. As with many diseases, we find that we continually have to balance the potential risks and side effects of the treatments with potential benefits based on the severity of the illness, and you will too. The PANDAS theory is relatively new (10 years old), and there is a lot of controversy around the PANDAS theory. The notion that an psychiatric disorder (OCD) presently classified as an "anxiety disorder" may be triggered by a bacterial infection runs counter to a hundred years of freudian psychiatric doctrine, and many practitioners who have not taken the time to review the research are inclined to dismiss it outright. However, medical scientists who are actually involved in PANDAS research are mostly in agreement that for some subset of pediatric OCD patients, their illness is triggered or exacerbated by an autoimmune mechanism triggered by the strep bacteria. They are not sure what the exact process is (which is at the core of most of the controversy), but fact remains that, when researchers took a group of kids with sudden-onset OCD that coincided with a strep infection, and gave them either a procedure that removed the antibodies from their blood, or a procedure that regulates the body's immune response, their psychiatric symptoms improved dramatically.If your doctor thinks that PANDAS is bunk, and is not willing to review the studies and reviews about PANDAS published in his profession's professional journals, then you should run, not walk, to a doctor who recognizes the disease. Be prepared to have to look hard--your best bet (though by no means a sure bet) may be your nearest children's (research) hospital. Be sure to see a rhumatologist or an immunologist. The closest well-studied disease akin to PANDAS is called Sydenham's Chorea, which is in the realm of rhumatology. If a neurologist doesn't see anything obvious in a basic neurological exam or on an MRI, he's likely to send you home with a pat on the head. Regardless of whether your child is a carrier of strep or has a symptomatic strep infection, your doctor should be willing to treat with an extended course of antibiotics to rout out the strep, and prophylacticly to prevent new infection. With your child's ASO titers skyrocketing as you describe, antibiotics would seem to be no-brainer. Augmentin is an antibiotic that is thought to have anti-inflammatory effects as well, and at least one PANDAS researcher recommended its use to us to treat suspected PANDAS. Killing the bacteria may be insufficient, because people still have circulating antibodies long after the bacteria that triggered them is gone. Infections trigger many different antibodies, and researchers have not yet identified which strep antibodies cause PANDAS; but they are pretty sure that it is NOT ASO antibodies. Moreover, it is suspected that while strep is the initial trigger of PANDAS, other infections, including viral infections, may trigger subsequent PANDAS episodes.If a few months on antibiotics don't help, the next step might be a course of prednisone (2-5 weeks), both diagnostically and as a potential treatment. This is done concurrently with more antibiotics. Diagnostically, if the OCD symptoms improve after a course of prednisone, it is more likely to be PANDAS, because prednisone is an anti-inflammatory and immune suppressant drug, not an anti-anxiety drug (in fact, prednisone often causes nasty mood swings as one of its unpleasant but short-term side effects). At least one neurologist who specializes in PANDAS has told me that she sees some PANDAS kids get better after prednisone and without further treatment other than long-term prophylactic antibiotics. The next step after that might be IVIG, which is the IV administration of a blood product that regulates the body's immune response. We found that the doctors who were most resistant to treating as possible PANDAS were the ones who were the least understanding of the severity of the disease that our child (and family) was experiencing. Good luck.-asaxon
    asaxon 2 Replies
    • September 21, 2009
    • 05:13 AM
    • 0
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  • All of you should read the new book "Saving Sammy" by Beth Alison Maloney. It is a true account of how she tenaciously got the right treatment for her 12-year-old son who developed PANDAS. The protocol involves some of the standard, long-recognized OCD treatments such as SSRI's and antipsychotics for the most severe cases, but also uses Augmentin XR (a time-release version of the antibiotic) at both a treatment level and a prophylactic level for a while. She's had great success, and Sammy is virtually "cured" of his most severe and debilitating OCD behaviors. Read, really! My son is 12, was diagnosed with OCD at 6, and has had waxing and waning of the OCD's strength for all these years. I first heard about PANDAS when he was about 7, but his doctors didn't agree. Even if it IS real, said his psychologist, no one really has a protocol for addressing it. But that's not true anymore, thanks to Maloney and her doctors! So, I'm going back on the march to get my son tested AND treated, assuming the tests come back positive!Good luck all!
    Anonymous 42789 Replies
    • October 11, 2009
    • 03:15 PM
    • 0
    Flag this Response
  • All of you should read the new book "Saving Sammy" by Beth Alison Maloney. It is a true account of how she tenaciously got the right treatment for her 12-year-old son who developed PANDAS. The protocol involves some of the standard, long-recognized OCD treatments such as SSRI's and antipsychotics for the most severe cases, but also uses Augmentin XR (a time-release version of the antibiotic) at both a treatment level and a prophylactic level for a while. She's had great success, and Sammy is virtually "cured" of his most severe and debilitating OCD behaviors. Read, really! My son is 12, was diagnosed with OCD at 6, and has had waxing and waning of the OCD's strength for all these years. I first heard about PANDAS when he was about 7, but his doctors didn't agree. Even if it IS real, said his psychologist, no one really has a protocol for addressing it. But that's not true anymore, thanks to Maloney and her doctors! So, I'm going back on the march to get my son tested AND treated, assuming the tests come back positive!Good luck all!Remember - according to the NIMH, there is no "blood test" that can determine if a child has the autoimmune disorder referred to as "PANDAS". The diagnoses is made by clinical observation. Strep titers show creation of antibodies against strep, and can indicate an active or recently resolved infection. They can bolster your argument and assist in diagnoses if combined with observation of an explosion of OCD, aggression, etc. Alone, however, do not prove one way or the other. If a doctor insists on relying on these tests and nothing else to diagnose PANDAS - educate them. An avalanche of studies on this topic have been published since the late 90's. If they refuse to listen and choose instead to ignore a deluge of information from peer reviewed research, published in some of the most prestigious scientific journals on the planet, find a PANDAS literate Doctor. Latitudes.ORG has some great resources - check it out.
    Anonymous 42789 Replies
    • October 18, 2009
    • 01:43 AM
    • 0
    Flag this Response
  • Cheryl,I'm very sorry to hear about your son. We've gone though a similar nightmare with our child. I am not a doctor, I'm just an educated medical consumer, but I feel that I could write a book on PANDAS. We're still not sure whether or not our child has PANDAS, but it made sense to us (and it continue to make sense to us) to treat it as possible PANDAS by giving treatments that WOULD be effective IF it were PANDAS. As with many diseases, we find that we continually have to balance the potential risks and side effects of the treatments with potential benefits based on the severity of the illness, and you will too. The PANDAS theory is relatively new (10 years old), and there is a lot of controversy around the PANDAS theory. The notion that an psychiatric disorder (OCD) presently classified as an "anxiety disorder" may be triggered by a bacterial infection runs counter to a hundred years of freudian psychiatric doctrine, and many practitioners who have not taken the time to review the research are inclined to dismiss it outright. However, medical scientists who are actually involved in PANDAS research are mostly in agreement that for some subset of pediatric OCD patients, their illness is triggered or exacerbated by an autoimmune mechanism triggered by the strep bacteria. They are not sure what the exact process is (which is at the core of most of the controversy), but fact remains that, when researchers took a group of kids with sudden-onset OCD that coincided with a strep infection, and gave them either a procedure that removed the antibodies from their blood, or a procedure that regulates the body's immune response, their psychiatric symptoms improved dramatically.If your doctor thinks that PANDAS is bunk, and is not willing to review the studies and reviews about PANDAS published in his profession's professional journals, then you should run, not walk, to a doctor who recognizes the disease. Be prepared to have to look hard--your best bet (though by no means a sure bet) may be your nearest children's (research) hospital. Be sure to see a rhumatologist or an immunologist. The closest well-studied disease akin to PANDAS is called Sydenham's Chorea, which is in the realm of rhumatology. If a neurologist doesn't see anything obvious in a basic neurological exam or on an MRI, he's likely to send you home with a pat on the head. Regardless of whether your child is a carrier of strep or has a symptomatic strep infection, your doctor should be willing to treat with an extended course of antibiotics to rout out the strep, and prophylacticly to prevent new infection. With your child's ASO titers skyrocketing as you describe, antibiotics would seem to be no-brainer. Augmentin is an antibiotic that is thought to have anti-inflammatory effects as well, and at least one PANDAS researcher recommended its use to us to treat suspected PANDAS. Killing the bacteria may be insufficient, because people still have circulating antibodies long after the bacteria that triggered them is gone. Infections trigger many different antibodies, and researchers have not yet identified which strep antibodies cause PANDAS; but they are pretty sure that it is NOT ASO antibodies. Moreover, it is suspected that while strep is the initial trigger of PANDAS, other infections, including viral infections, may trigger subsequent PANDAS episodes.If a few months on antibiotics don't help, the next step might be a course of prednisone (2-5 weeks), both diagnostically and as a potential treatment. This is done concurrently with more antibiotics. Diagnostically, if the OCD symptoms improve after a course of prednisone, it is more likely to be PANDAS, because prednisone is an anti-inflammatory and immune suppressant drug, not an anti-anxiety drug (in fact, prednisone often causes nasty mood swings as one of its unpleasant but short-term side effects). At least one neurologist who specializes in PANDAS has told me that she sees some PANDAS kids get better after prednisone and without further treatment other than long-term prophylactic antibiotics. The next step after that might be IVIG, which is the IV administration of a blood product that regulates the body's immune response. We found that the doctors who were most resistant to treating as possible PANDAS were the ones who were the least understanding of the severity of the disease that our child (and family) was experiencing. Good luck.-asaxonvery good information. My daughter was diagnosed with Pandas at the age of 7. Her ASO titer was in the 700's. She was put on Augmentin for 18 months and an antipsychotic drug Risperdal for 1 year. Her symptoms subsided and she was able to return to normal. Soon after stopping the antibiotic she started getting strep again and we opted to have the tonsils removed. Happy to say that she hasn't had strep since!
    Anonymous 42789 Replies
    • November 3, 2009
    • 00:55 AM
    • 0
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  • Cheryl, I'm very sorry to hear about your son. We've gone though a similar nightmare with our child. I am not a doctor, I'm just an educated medical consumer, but I feel that I could write a book on PANDAS. We're still not sure whether or not our child has PANDAS, but it made sense to us (and it continue to make sense to us) to treat it as possible PANDAS by giving treatments that WOULD be effective IF it were PANDAS. As with many diseases, we find that we continually have to balance the potential risks and side effects of the treatments with potential benefits based on the severity of the illness, and you will too. The PANDAS theory is relatively new (10 years old), and there is a lot of controversy around the PANDAS theory. The notion that an psychiatric disorder (OCD) presently classified as an "anxiety disorder" may be triggered by a bacterial infection runs counter to a hundred years of freudian psychiatric doctrine, and many practitioners who have not taken the time to review the research are inclined to dismiss it outright. However, medical scientists who are actually involved in PANDAS research are mostly in agreement that for some subset of pediatric OCD patients, their illness is triggered or exacerbated by an autoimmune mechanism triggered by the strep bacteria. They are not sure what the exact process is (which is at the core of most of the controversy), but fact remains that, when researchers took a group of kids with sudden-onset OCD that coincided with a strep infection, and gave them either a procedure that removed the antibodies from their blood, or a procedure that regulates the body's immune response, their psychiatric symptoms improved dramatically. If your doctor thinks that PANDAS is bunk, and is not willing to review the studies and reviews about PANDAS published in his profession's professional journals, then you should run, not walk, to a doctor who recognizes the disease. Be prepared to have to look hard--your best bet (though by no means a sure bet) may be your nearest children's (research) hospital. Be sure to see a rhumatologist or an immunologist. The closest well-studied disease akin to PANDAS is called Sydenham's Chorea, which is in the realm of rhumatology. If a neurologist doesn't see anything obvious in a basic neurological exam or on an MRI, he's likely to send you home with a pat on the head. Regardless of whether your child is a carrier of strep or has a symptomatic strep infection, your doctor should be willing to treat with an extended course of antibiotics to rout out the strep, and prophylacticly to prevent new infection. With your child's ASO titers skyrocketing as you describe, antibiotics would seem to be no-brainer. Augmentin is an antibiotic that is thought to have anti-inflammatory effects as well, and at least one PANDAS researcher recommended its use to us to treat suspected PANDAS. Killing the bacteria may be insufficient, because people still have circulating antibodies long after the bacteria that triggered them is gone. Infections trigger many different antibodies, and researchers have not yet identified which strep antibodies cause PANDAS; but they are pretty sure that it is NOT ASO antibodies. Moreover, it is suspected that while strep is the initial trigger of PANDAS, other infections, including viral infections, may trigger subsequent PANDAS episodes. If a few months on antibiotics don't help, the next step might be a course of prednisone (2-5 weeks), both diagnostically and as a potential treatment. This is done concurrently with more antibiotics. Diagnostically, if the OCD symptoms improve after a course of prednisone, it is more likely to be PANDAS, because prednisone is an anti-inflammatory and immune suppressant drug, not an anti-anxiety drug (in fact, prednisone often causes nasty mood swings as one of its unpleasant but short-term side effects). At least one neurologist who specializes in PANDAS has told me that she sees some PANDAS kids get better after prednisone and without further treatment other than long-term prophylactic antibiotics. The next step after that might be IVIG, which is the IV administration of a blood product that regulates the body's immune response. We found that the doctors who were most resistant to treating as possible PANDAS were the ones who were the least understanding of the severity of the disease that our child (and family) was experiencing. Good luck. -asaxon Hi asaxon,I just signed up for this and I am not sure I am doing it correctly. My 15 year old son was diagnosed with OCD and possible PANDAS 6 years ago. We have been through so much over the last 6 years. Since his original diagnosis we have seen about 10 different doctors for treatment. We let go of the PANDAS possibility when his ASO titer was 257 in 2006 and 225 in Jan. 2007. We were told that wasn't high enough. Come to find out it was. We are currently in a crisis with full blown OCD and PANDAS. I had to withdraw my son from school 3 weeks ago. We heard about Beth Maloney's story and immediatly took him in to his Pedi. His ASO titer was 1,014. He start 2,000 mg Augmentin XR and Risperdol. We have seen a small improvement. We are considering Prednisone and possibly having his tonsils removed. Thanks so much for sharing your information. It has help us. I will let you know how it goes. Is your child OCD free now? Can you suggest any Dr.'s?Joan
    JoanCar 1 Replies
    • November 7, 2009
    • 10:52 PM
    • 0
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  • I wanted to share my story and ask for some advise because I'm not sure if I'm treating my son with a wrong diagnosis. My son was diagnosised with ADHD & OCD. He is currently taken 5mg Adderall XR & 12mg Zolof for his ADHD & axiety/OCD behaviors. He is six years old and just started these medications three months ago. I have seen a difference in his behaviors but not a huge one and I'm not sure if it's more ADHD or OCD/Tics/Tourettes but after going through all symtoms with the doctor this is what he came up with. We have been struggling with wierd behavior for about two years and new something was just not right but waited because maybe these behaviors were age appropiate. Once he started in school, the teachers even noticed the same behaviors we were experiencing at home. These behaviors include: very fidgety, unable to make eye contact, anxiety over a pencil falling on the floor and not being able to move forward without dwelling on that all day, shakes his head, talks excessively and this just names a few. The behaviors are worse on some days than others and we can't see to figure out why. We ran blood work last year and noticed that his ASO titers were high (478) and the neurologist told me to see the pediatrican to see if he has strep throat. Well for about seven months, every time I went to the pediatrian, I had them check for strep and most of the time it was positive but no signs of a sore throat. So the conclusion was that he was a carrier for strep throat. I had done some research at that point, and found something on the internet about PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep) My son fits all of the characteristics and I was so happy to finally figure out what was going on with him. Well, when I mentioned this to the doctors, they thought I was nuts. He didn't have this. So I continued struggling with him until we started the meds about three months ago. Well, the past two months, he started having bad headaches and frequent urination. I had to count and it was 15 times that he went in 4 hours. Even my family couldn't believe that he had to keep going so much. Again, I went to the doctor to make sure he didn't have an infection and I also mentioned the headaches. The pediatrician said everything looked fine and that I should mention to the neurologist when I see him next. So that is what I did and more blood work was done to see his levels. Well, his RBC & WBC were just below normal & his ASO titer wase now at 1178. I don't know what to do next. I truly believe my son fits the diagnois for PANDAS and I want to make sure the meds that he is taking are OK for that diagnois. I go to bed at night wondering if I'm doing the right thing with the medicines. I'm hoping that someone has experienced anything like this and has some advise for me. I don't want the doctors to think I'm looking for this to be PANDAS but that is how they make me feel. Need your advise. If you have any input please advise. CherylHave you read the book Saving Sammy by Beth Alison Maloney? (www.savingsammy.net) It is about her son who was diagnosed with OCD, turned out he had PANDAS and she ran, as I am running into the same problem that you are. I am not sure why drs have such ad adverse reaction to thei theory. My daughter was diagnosed with OCD over two years ago, afger reading Saving Sammy I asked my dr to run a titer test .. just to see; well wouldn't you know that it came back high. I wish you luck, i hope that we get answers.Elke
    Anonymous 42789 Replies
    • November 9, 2009
    • 01:30 AM
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