NEG TESTS...HELP IS THIS PANDAS OR BIPOLAR?

[momcap]

My DS7 is diagnosed with mood disorder-NOS, Generalized Anxiety Disorder and Sensory Processing Disorder. He goes to a mood disorder clinic for children with bipolar disorder. When I read your description I could have wrote it about my DS: difficult child, colicy baby, major separation anxiety @ 2, temper flares, sleep disturbance, night terrors, OCD, germaphobia, mania, depression, etc. Their histories are remarkably similar, except that DS does not have any motor tics, only verbal tics.

 

When we first tested him for strep it was completely negative - throat culture negative and ASO 27 (negative), and our doctor dismissed PANDAS without even mentioning it to me. Meanwhile DS was in the worst exacerbation he's ever had, and we almost had to hospitilize him. A week later both of his brothers had scarlet fever. An unbelievably brutal month later and he had strep throat. Fast forward 6 months to another bad exacerbation. This time I knew about PANDAS and I asked to repeat the blood work - this time ASO in the 500s, and 3 months later it was even higher (he was not ill during these months). Last month he had "scarletina" rashes coming and going in different places on his body a week before both brothers got strep throat again. So we have major strep issues in our house, despite those initial tests being negative. One negative strep test doesn't necessarily mean anything.

 

Based on your DDs response to abx I think it is reasonable to say something infectious is going on. The best 2 pieces of advice I got on this forum were to find a PANDAS doctor and to rule out other infections - especially myco p. & lyme. The PANDAS doc knew what bloodwork to order and prescribed more aggressive treatment than our pedi was willing to try. After a month each on high dose augmentin and then biaxin my poor DS had so many more physical symptoms - rashes, pains, swollen joints, rages, numb feet, feeling like he was dreaming, etc. His blood work came back negative for lyme, but with these additional symptoms and the fact that he was difficult and colicy from birth, I was told to test my blood. Sure enough my blood is positive for lyme, which I may have passed to him in utero. So we're seeing a lyme specialist this week. I'm not saying your DD has lyme...many different "bugs" can cause neuropsych symptoms (PITAND). I learned the hard way that ASOs can be negative even with a strep infection (maybe it was done too soon, or maybe ASO just didn't rise), and lyme tests are terrible for false negatives and can also give false positives. These tests can be good tools for diagnosing, but they are not infallible. That's why so many of these illnesses (like PANDAS and lyme) remain a clinical diagnosis. Which is another good reason to find a PANDAS doctor and get an expert opinion. BTW- I'm pretty sure my DS only goes manic when he's exposed to strep. I started journalling and charting and was amazed at the "coincidences".

 

I was also diagnosed bipolar after sudden onset of symptoms around age 14. But by my early twenties it just went away. I've never heard of bipolar disorder just going away. But I have heard of many children who outgrow PANDAS.

 

Good luck and keep us posted!

 

 

Oops, forgot to add that DS also had an amazing and dramatic positive response to pencillin - everything went away completely after 4 days on it. When the 10 day script ended he went immediately back to being miserable. So we tried again and same thing, amazing dramatic turn-around. After that we got aggressive with abx and things went bad. Also, his CamK was 176 with anti-dopamine 1 at 4x above the mean. So I'm certain his "bipolar" is infection-triggered. I hope your DD's symptoms are infection triggered too, because there are more options and more hope for healing, rather than a lifetime of psych meds.

[Stephanie2]

I don't want to put words in his mouth, but Scott is a little more conservative about long-term high-dose abx b/c he has seen up close and personal the damage that this approach causes. As far as bipolar vs. pandas, your child sounds classic pandas. Either way, whether the bipolar is caused by pandas or some other cause, Scott should be able to help you.

[nicklemama]

I cannot see your original post nor the entire first page for some strange reason. I want you to know I was told my son was Aspergers and bipolar. He also had a sensory processing disorder diagnosed, as well as Intermittent Explosive Disorder. He was diagnosed PANDAS this past fall. After 60 days on antibiotics, most of the symptoms of his diagoses went away. He's been up and down the past couple of months, but the only thing he has is PANDAS and its the only thing he's being treated for. Get your child to a PANDAS expert.

 

I would add, my DS had no issues as a baby. This came on suddenly after the FluMist in Oct 2009.

[Ann280]

My DS7 is diagnosed with mood disorder-NOS, Generalized Anxiety Disorder and Sensory Processing Disorder. He goes to a mood disorder clinic for children with bipolar disorder. When I read your description I could have wrote it about my DS: difficult child, colicy baby, major separation anxiety @ 2, temper flares, sleep disturbance, night terrors, OCD, germaphobia, mania, depression, etc. Their histories are remarkably similar, except that DS does not have any motor tics, only verbal tics.

 

When we first tested him for strep it was completely negative - throat culture negative and ASO 27 (negative), and our doctor dismissed PANDAS without even mentioning it to me. Meanwhile DS was in the worst exacerbation he's ever had, and we almost had to hospitilize him. A week later both of his brothers had scarlet fever. An unbelievably brutal month later and he had strep throat. Fast forward 6 months to another bad exacerbation. This time I knew about PANDAS and I asked to repeat the blood work - this time ASO in the 500s, and 3 months later it was even higher (he was not ill during these months). Last month he had "scarletina" rashes coming and going in different places on his body a week before both brothers got strep throat again. So we have major strep issues in our house, despite those initial tests being negative. One negative strep test doesn't necessarily mean anything.

 

Based on your DDs response to abx I think it is reasonable to say something infectious is going on. The best 2 pieces of advice I got on this forum were to find a PANDAS doctor and to rule out other infections - especially myco p. & lyme. The PANDAS doc knew what bloodwork to order and prescribed more aggressive treatment than our pedi was willing to try. After a month each on high dose augmentin and then biaxin my poor DS had so many more physical symptoms - rashes, pains, swollen joints, rages, numb feet, feeling like he was dreaming, etc. His blood work came back negative for lyme, but with these additional symptoms and the fact that he was difficult and colicy from birth, I was told to test my blood. Sure enough my blood is positive for lyme, which I may have passed to him in utero. So we're seeing a lyme specialist this week. I'm not saying your DD has lyme...many different "bugs" can cause neuropsych symptoms (PITAND). I learned the hard way that ASOs can be negative even with a strep infection (maybe it was done too soon, or maybe ASO just didn't rise), and lyme tests are terrible for false negatives and can also give false positives. These tests can be good tools for diagnosing, but they are not infallible. That's why so many of these illnesses (like PANDAS and lyme) remain a clinical diagnosis. Which is another good reason to find a PANDAS doctor and get an expert opinion. BTW- I'm pretty sure my DS only goes manic when he's exposed to strep. I started journalling and charting and was amazed at the "coincidences".

 

I was also diagnosed bipolar after sudden onset of symptoms around age 14. But by my early twenties it just went away. I've never heard of bipolar disorder just going away. But I have heard of many children who outgrow PANDAS.

 

Good luck and keep us posted!

Thanks so much for sharing your response. Update as of today.... We tried the Motrin protocol starting last Friday, Saturday and Sunday with no response..we had the worst weekend with my daughter yet. She had incredible mood swings, bouts of depression, ocd (talking about the same things day after day) making videos of herself on her computer like 50 of them. so talkative I could not stop her. then the sleep problems..I do have her on melatonin and with all these pills it's getting harder and harder to have her take them so I missed the "right time"for the melatonin.she couldn't fall asleep started to bring up stuff about school that made her cry, then complain about her sister and why she is okay and she doesn't have learning problems etc.. then she went into that she was terrified to sleep in her room for fear of ghosts. (she watched a show with her sister a week ago called ghosts in Conn.) I didn't even know she did and she kept on bringing that up over and over so she slept in our bedroom. She hasn't done that in years..she is 10. I had a hard time waking her up for school as she was very defiant..sent her to school which was probably a mistake as I received a call telling me Ava was very upset and they had a hard time calming her down. Thank god there is a psychologist at her school which helped and she was able to finish the day.. On Monday I had a phone conference with Scott and he put ava on zithromycin 200mg 1/5 tsp once a day. And also predinsone on the 4, 5, 6 th day all the while continuing the 10 day dose of antibiotic. I gave her a antibiotic dose Monday at 6 am and gave her another dose at 7 am Tuesday instructed by Scott.

 

Ava carpools with a teacher and another student each day and she has been driving the other girl in the car crazy. When finding this out I called the mom to apologize and explain our situation. Later in the day I got a call from the mom who had went online to look up pandas and she proceeded to explain to me that her family has such a problem with strep that the average family that gets a cold and her family gets strep...over 10 times this year between her four kids herself and her husband. Her daughter whom drives with my daughter each day two times a day even had her tonsils out because the strep was so bad(since she was 3)... okay so at this point chills go to my body thinking omg I think this could be the reason all this time we have been having issues...my daughter has been exposed to this week after week, month after month. Ava's major episode started approx two weeks ago at this point and the mom told me that is when her other daughter had strep. Can this possibly be the cause?? At this point her daughter that drives with mine has had stomach issues for over a week and a half and her mom thought it was strep, but brought her to get tested and it was negative at the time, but because she has had so much experience with it she says she has no doubt especially after hearing Ava's episodes that her daughter has strep. She says she has had strep tested in the past neg went back a week later and tested positive. I told her to get the titer test? So now I have no choice, but to drive my daughter each day to avoid exposure. Yesterday on day 2 of the antibiotics she was hyper in the am, all over the map..in school she was talkative...on the ride home with her carpool she was very talkative and annoying to the other girl. I spoke with Ava explaining that she hurt the other girls feeling in the car and that it wasn't nice she asked me ON HER OWN to call her up and apologize. Later in the evening she was a bit better...i noticed she was able to concentrate a bit better with her homework her tone of her voice was lower. I would say about 50% of better. So last night after overhearing some stuff, I ended up telling Ava last that it's a possibility that she might have Pandas and I explained as best I could for a 10 yrs old what it is. She was upset, but somewhat relieved that there might be a reason for the way she can't control herself. I asked her if she knows sometimes that she is acting hyper and saying things that she normally would not and she said sometimes after she knows but she couldn't stop. She was upset wondering why everything happens to her and her "brain" learning disabilities etc.. I told her that we are going to try to take some meds to see if it might be able to help. She understands that she has been taking lots of meds, but not exactly the reason for it. NOW did i make a mistake by telling her about PANDAS? because this am she was up early but acting much better not 100% but I have to also understand she is a 10 yr old as well. In her car ride with the carpool (because the other girl didn't go to school...mom probably bringing her to doctor ) her teacher in the car said she was great,she explained to her teacher that she may have pandas and described it beautiful...she was calm , had normal conversations etc... COULD TELLING MY DAUGHTER SHE MIGHT HAVE THIS PANDAS HAVE A PLACEBO EFFECT ON HER TODAY????HELP THIS AM 7am was her 3rd dose of antibiotics..

[peglem]

Its possible that her knowing about PANDAS has reduced her anxiety. But its also possible the antibiotic is helping that quickly. Could be a combination of both. I think it helps, generally to talk to kids about PANDAS- so they know that it is an illness and they are not just "being bad." Either way, enjoy the improvement!

[momcap]

COULD TELLING MY DAUGHTER SHE MIGHT HAVE THIS PANDAS HAVE A PLACEBO EFFECT ON HER TODAY????HELP THIS AM 7am was her 3rd dose of antibiotics..

I think all you can do is wait and see. I doubt a placebo effect would last very long. And having a possible reason for feeling so out-of-control must be a huge relief to her. Let us know how the rest of the med trial goes. Thinking of you!

[Stephanie2]

My son used to respond that quickly to azith as well. He would be almost 100% within 24 hours. My younger son never responded that quickly to azith.

 

I can sympathize with the whole carpool situation. I have reason to believe that the little boy that we carpool with not only has a problem with strep, but with pandas as well. He has had OCD since Sept when both of my boys had strep, and he himself had an ear infection. He also has autism (in my and his teacher's opinion). I mentioned the strep/OCD connection in passing to his mom and of course she looked at me like I had 10 heads.

 

I worry all the time about the exposure, but at the same time, the boy sitting next to him could just as easily have it, ya know? BUT, since yours is a definite exposure, I guess it is best to play it safe until the child is better.

[butterflymom]

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Edited October 9, 2015 by tampicc

[Ann280]

The first time my son went on antibiotics for PANDAS (cefdinir) there was a dramatic decrease in symptoms on day 3. I hope her improvement holds.

Thank you everyone...this am she was 95% better. She still a bit off but I feel so much better. I however feel like im watching her every move...wondering if it's startingnall over. When does that feeling go away? all these kids out in her class sick makes me paranoid.

 

As i read all these other posts it almost brings tears to my eyes that there are so many other families going thru the same situations. It's so hard on the parents too.

[peglem]

The first time my son went on antibiotics for PANDAS (cefdinir) there was a dramatic decrease in symptoms on day 3. I hope her improvement holds.

Thank you everyone...this am she was 95% better. She still a bit off but I feel so much better. I however feel like im watching her every move...wondering if it's startingnall over. When does that feeling go away? all these kids out in her class sick makes me paranoid.

I'll let you know if that feeling ever goes away for me! Great to hear that you're seeing terrific improvement! See? NOT bipolar!

As i read all these other posts it almost brings tears to my eyes that there are so many other families going thru the same situations. It's so hard on the parents too.

And yet, I find that strangely comforting as well. Scary as this is, its good to know you're not all alone on this journey!

Edited April 8, 2011 by peglem