Discussions By Condition: I cannot get a diagnosis.

Elevated ASO Titers (PANDAS)

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: cciosek
  • August 13, 2008
  • 02:44 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 fit 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.


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  • Hi Cheryl,Although I am not sure I can help you with your question as I am not sure of the answer I do have some info I can share with you.I am going through something similar with my 11 year old daughter. She has had two elevated ASO blood tests. She also has some strange movements (she has a stomach tic, she puts her two fingers to her nose sometimes, she used to kind of stretch her back and a clearing of the throat sometimes). She has stomach pain and weight loss (they have cleared her of gastro problems). Like you, I have done some research and found the PANDAS too. However, I didn't know about the PANDAS until after the neuro appt. The neuros that we went to never mentioned the connection between high ASO and tics or anything like PANDAS. One team of neuro docs pretty much told me they didn't know what was wrong. One neuro doc told me she had a tic and it hopefully will go away on its own. Another doc blew off the PANDAS idea like yours did. We are scheduled to go to the Infectous Disease Specialist tomorrow. I can let you know if I find anything out. I assuming they will probably take more blood. I did find a pretty good site, another forum, you may want to try to post your question there if you don't already know about it. The address is www. latitudes.org. Click on the ACN online, it is a blue box on the left side of the homepage. You will have to log on like you do for this site. Then there are different sections...There is a whole section for tics, pandas, etc. There are other sections too for ADD, OCD, etc. Keep me posted about your son. Good luck to you and I know how frustrating it is because I am right there with you! Sorry this is so long...i hope it helped a little:)
    1koolteacher 14 Replies
    • August 19, 2008
    • 01:50 PM
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  • Hi,My daughter, 6 yrs old has also had elevated ASO levels. My pediatrician treated her with high dose antibiotics to try and bring the levels down. Did either of you treat your kids with antibiotics??? She tests negative for strep from the throat cultures, but has high aso titers from the blood work. Her complaints are leg pain & headaches. So we've seen neurologists, orthopedists, and rheumatologists to rule things out. (all came back negative).A note about pandas- my pediatrician says that facial tics (which my 8yr old has) & stomach pains could be a sign of strep (and could be from pandas) so that whenever those tics flare up, i always test her for strep and check her aso levels.hth, good luck.RK
    Ranon123 1 Replies
    • August 20, 2008
    • 07:00 PM
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  • All of the symptoms you are describing fit with PANDAS. If the titers are rising and you see these symptoms in your children, it does not matter what the throat culture shows. A lot of children with PANDAS will have a negative throat culutre so they are not treated with antibiotics and they continue to worsen b/c they DO have strep in their bodies that just does not show up on a throat culutre. Their symptoms not only worsen, but some start to show symptoms of post streptoccal diseases, such as rheumatic fever and glomerulonephritis. My best advice would be to put your child on the right antibiotic (NOT Amoxicillin or Penicillin, but either a cephalosporin like Keflex or a macrolide like Zithromax) and see if they start to respond to the antibiotic. FYI- there are countless physicians who have not heard of PANDAS or don't believe in it, thereby MISDIAGNOSING the child's untreated strep. This is our experience and have dealt with it for 7 years. Good luck.Colleen
    colleenrn 1 Replies
    • October 22, 2008
    • 02:50 PM
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  • Colleen, my daughter was just diagnosed with Pandas, are u saying that you just treat with antibiotic and the tics will go away?Renae
    Anonymous 42789 Replies
    • September 3, 2010
    • 08:19 PM
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  • My 13 year old daughter has elevated ASO titers and they have treated her with an IV infusion of antibodies. She is better now and we are waiting to see what happens with her bloodwork. Has anyone else done this type of treatment?
    Anonymous 42789 Replies Flag this Response
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