New to Pandas

[Austin Mom]

A very nice woman on another list serve pointed me to this one and I'm so glad she did. After 2 months of regression, suddenly weird behaviors, extreme physical aggression in my Asperger's son (7yrs old), I was finally able to get a strep screen done (negative) and then a strep antibody test. The pediatrician called yesterday morning and said the blood test for strep was 296 (normal is 0-200 per this lab). She has started him on Amoxicillin but as I read through the posts I'm wondering if maybe we need to be on Augmentin XR - that seems to be more commonly prescribed. My pediatrician has one other kiddo she just diagnosed with PANDAS and put on Amoxicillin so she didn't know what to expect at this point. When I first approached the psychiatrist about all the regression, sudden high levels of anxiety, etc and handed her an article on PANDAS she said she didn't know anything about that but that we just needed to put him back on Seroquel for the behavior. While I didn't agree and told her so, I said I would give it a try. I thought we should be increasing his Lexapro because his anxiety had gone through the roof. After doubling the initial dose of Seroquel and then doubling it again this past Thursday we were still sprialing downhill out of control. Now that I know it's PANDAS I'm wondering if I should contact his neurologist or let the pediatrician handle this. It's obvious to me I won't get anywhere with the psychiatrist.

 

Of those that have done the IVIG, was this after weeks/months of antibiotics or in addition to antibiotics? Is that something done in the physician's office or did it require hospitalization?

 

Thanks for the posts here. Glad to know now that I'm not going crazy and that there really was something medically causing my son's symptoms.

[Joan Pandas Mom]

Sorry to hear you are going through this. It is so hard. I'm glad you found out about the strep. My 15 yr old son had his tonsills and adenoids out 3 1/2 weeks ago. That really helped with the antibiotics. I'm still jumping around trying to find the right one. Sammy in "Saving Sammy" was on 2000 XR Augmentin daily. Good luck and you will find lots of helpful info here.

 

A very nice woman on another list serve pointed me to this one and I'm so glad she did. After 2 months of regression, suddenly weird behaviors, extreme physical aggression in my Asperger's son (7yrs old), I was finally able to get a strep screen done (negative) and then a strep antibody test. The pediatrician called yesterday morning and said the blood test for strep was 296 (normal is 0-200 per this lab). She has started him on Amoxicillin but as I read through the posts I'm wondering if maybe we need to be on Augmentin XR - that seems to be more commonly prescribed. My pediatrician has one other kiddo she just diagnosed with PANDAS and put on Amoxicillin so she didn't know what to expect at this point. When I first approached the psychiatrist about all the regression, sudden high levels of anxiety, etc and handed her an article on PANDAS she said she didn't know anything about that but that we just needed to put him back on Seroquel for the behavior. While I didn't agree and told her so, I said I would give it a try. I thought we should be increasing his Lexapro because his anxiety had gone through the roof. After doubling the initial dose of Seroquel and then doubling it again this past Thursday we were still sprialing downhill out of control. Now that I know it's PANDAS I'm wondering if I should contact his neurologist or let the pediatrician handle this. It's obvious to me I won't get anywhere with the psychiatrist.

 

Of those that have done the IVIG, was this after weeks/months of antibiotics or in addition to antibiotics? Is that something done in the physician's office or did it require hospitalization?

 

Thanks for the posts here. Glad to know now that I'm not going crazy and that there really was something medically causing my son's symptoms.

[Suzan]

Hello and welcome. We have not tried IVIG at this point but are having great results on a high enough dose of zithromax. My girls are 8 yrs/72lbs on 500mg zith daily and 7 yrs/45 lbs on 250 mg daily. It seems like they need these doses to keep their symptoms under control. I hope to be able to try IVIG some day but for now we are happy with this and just hanging in there to see what happens.

 

I hope you see some improvement. I think going with the high doses of abx (zithromax or augmentin) are found to be more helpful than the psych drugs. Where do you live? Are you accessible to any of the specialists out there?

 

Susan

[thereishope]

Welcome.

 

It seems like it is actually not often for a PANDAS child improves on amoxicillan (let me add some do but not often). Here is an article that is posted a lot about the failure rate of amox in erradicating strep. And a lot of kids need at least a month of the abs before they see good improvement.

 

http://www.entrepreneur.com/tradejournals/.../169459644.html

 

Some PANDAS kids do not react well to psych meds but I don't suggest just pulling him off everything. But eventually, adjusting his dosing and lowering it may be something to consider.

 

I think right now your main goal is to get the ped to change the antibiotic. Some good links here for more info on PANDAS are...

 

Fact sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

 

And FAQ

http://www.latitudes.org/forums/index.php?showtopic=6266

[Buster]

Hi Austin Mom, wecome to the forum. Lexapro led to activation in our daughter. Apparently Lexapro is actually offlabel for children (i.e., not well tested) and due to its very short half life it seems to have very significant problems especially if you miss a dose. Increasing lexapro made our child worse. While it was difficult to separate Lexapro from PANDAS, her behavior sure matched Akathesia.

 

Lexapro does have some rather nasty withdrawl symptoms and it happens very quickly. Within 24 hours of stopping Lexapro, our daughter definitely got the classic flu-like symptoms and the zapping feeling. There's a nice study by [Murphy2006]Murphy TK, Storch EA, Strawser MS, "Selective serotonin reuptake inhibitor-induce behavioral activation in the PANDAS subtype", Primary Psychiatry, 2006;13(8):87-89, http://mbldownloads.com/0806PP_Murphy.pdf

 

In terms of long-term treatment with antibiotics, we did this for 72 weeks (i.e., about 1.5 years). Without a doubt the antibiotics helped a lot, but our daughter never really "reset" back to full remission. After each episode, she got better, but not back to the same behavior pre exacerbation. She had 6 exacerbations over the 72 weeks -- each exacerbation lasting 4-5 weeks (i.e., 27 weeks were in exacerbations). By the end of this she was up 20 points in symptoms. This baseline change and the re-emergence of restrictive eating (she had symptoms of anorexia nervosa in a 7 year old) made us consider IVIG. Our belief is that if there was more spacing between activations/exacerbations, she would have done fine on the prophylactic antibiotics.

 

Best regards,

 

Buster

 

A very nice woman on another list serve pointed me to this one and I'm so glad she did. After 2 months of regression, suddenly weird behaviors, extreme physical aggression in my Asperger's son (7yrs old), I was finally able to get a strep screen done (negative) and then a strep antibody test. The pediatrician called yesterday morning and said the blood test for strep was 296 (normal is 0-200 per this lab). She has started him on Amoxicillin but as I read through the posts I'm wondering if maybe we need to be on Augmentin XR - that seems to be more commonly prescribed. My pediatrician has one other kiddo she just diagnosed with PANDAS and put on Amoxicillin so she didn't know what to expect at this point. When I first approached the psychiatrist about all the regression, sudden high levels of anxiety, etc and handed her an article on PANDAS she said she didn't know anything about that but that we just needed to put him back on Seroquel for the behavior. While I didn't agree and told her so, I said I would give it a try. I thought we should be increasing his Lexapro because his anxiety had gone through the roof. After doubling the initial dose of Seroquel and then doubling it again this past Thursday we were still sprialing downhill out of control. Now that I know it's PANDAS I'm wondering if I should contact his neurologist or let the pediatrician handle this. It's obvious to me I won't get anywhere with the psychiatrist.

 

Of those that have done the IVIG, was this after weeks/months of antibiotics or in addition to antibiotics? Is that something done in the physician's office or did it require hospitalization?

 

Thanks for the posts here. Glad to know now that I'm not going crazy and that there really was something medically causing my son's symptoms.

[matis_mom]

A very nice woman on another list serve pointed me to this one and I'm so glad she did. After 2 months of regression, suddenly weird behaviors, extreme physical aggression in my Asperger's son (7yrs old), I was finally able to get a strep screen done (negative) and then a strep antibody test. The pediatrician called yesterday morning and said the blood test for strep was 296 (normal is 0-200 per this lab). She has started him on Amoxicillin but as I read through the posts I'm wondering if maybe we need to be on Augmentin XR - that seems to be more commonly prescribed. My pediatrician has one other kiddo she just diagnosed with PANDAS and put on Amoxicillin so she didn't know what to expect at this point. When I first approached the psychiatrist about all the regression, sudden high levels of anxiety, etc and handed her an article on PANDAS she said she didn't know anything about that but that we just needed to put him back on Seroquel for the behavior. While I didn't agree and told her so, I said I would give it a try. I thought we should be increasing his Lexapro because his anxiety had gone through the roof. After doubling the initial dose of Seroquel and then doubling it again this past Thursday we were still sprialing downhill out of control. Now that I know it's PANDAS I'm wondering if I should contact his neurologist or let the pediatrician handle this. It's obvious to me I won't get anywhere with the psychiatrist.

 

Of those that have done the IVIG, was this after weeks/months of antibiotics or in addition to antibiotics? Is that something done in the physician's office or did it require hospitalization?

 

Thanks for the posts here. Glad to know now that I'm not going crazy and that there really was something medically causing my son's symptoms.

Welcome to the forum. I would recommend you try antibiotics for a few months before you do anything else. I would try to get him off all the psychiatric drugs and see a neurologist. Maybe your pediatrician can handle this, but it would be good to consult someone who has experience in dealing with PANDAS. About amoxicillin, it might work, but you probably need something stronger. Augmentin does not work for everyone, it's a bit of trial an error until you find the antibiotic that works for your child.

 

Isabel

[Austin Mom]

Welcome.

 

It seems like it is actually not often for a PANDAS child improves on amoxicillan (let me add some do but not often). Here is an article that is posted a lot about the failure rate of amox in erradicating strep. And a lot of kids need at least a month of the abs before they see good improvement.

 

http://www.entrepreneur.com/tradejournals/.../169459644.html

 

Some PANDAS kids do not react well to psych meds but I don't suggest just pulling him off everything. But eventually, adjusting his dosing and lowering it may be something to consider.

 

I think right now your main goal is to get the ped to change the antibiotic. Some good links here for more info on PANDAS are...

 

Fact sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

 

And FAQ

http://www.latitudes.org/forums/index.php?showtopic=6266

 

 

Thanks for all the information. We didn't see any real dramatic improvement until after a 10 day course of Amoxicilling but we're still seeing violent meltdowns over transitions - just not as often and not lasting as long. The 'tic' comes and goes - the bed wetting is infrequent now and the self-injury type behaviors rarely happen. I'm not convinced he's "over" this but he's definitely better than he was. Our neurologist had heard of PANDAS and said he doesn't treat it but rather refers to the infectious disease docs. I will continue to research this and try to get the most appropriate treatment. I appreciate all the feedback. We were able to change psychiatrists to one who is familiar with the PANDAS and more willing to listen to me about his symptoms not just being his "autism on a bad day".

[Austin Mom]

Buster,

I found your response very interesting. The psychiatrist increased the Lexapro right after Christmas and it did seem to aggravate the sypmtoms but I didn't connect the dots on that one because the symptoms had been steadily increasing anyway. Now that we have a new psychiatrist I will definitely mention this to her and get her thougts. I have said for awhile now that the meds are either not working at all or are wearing off way too soon. Thanks for your input!

 

 

 

 

Hi Austin Mom, wecome to the forum. Lexapro led to activation in our daughter. Apparently Lexapro is actually offlabel for children (i.e., not well tested) and due to its very short half life it seems to have very significant problems especially if you miss a dose. Increasing lexapro made our child worse. While it was difficult to separate Lexapro from PANDAS, her behavior sure matched Akathesia.

 

Lexapro does have some rather nasty withdrawl symptoms and it happens very quickly. Within 24 hours of stopping Lexapro, our daughter definitely got the classic flu-like symptoms and the zapping feeling. There's a nice study by [Murphy2006]Murphy TK, Storch EA, Strawser MS, "Selective serotonin reuptake inhibitor-induce behavioral activation in the PANDAS subtype", Primary Psychiatry, 2006;13(8):87-89, http://mbldownloads.com/0806PP_Murphy.pdf

 

In terms of long-term treatment with antibiotics, we did this for 72 weeks (i.e., about 1.5 years). Without a doubt the antibiotics helped a lot, but our daughter never really "reset" back to full remission. After each episode, she got better, but not back to the same behavior pre exacerbation. She had 6 exacerbations over the 72 weeks -- each exacerbation lasting 4-5 weeks (i.e., 27 weeks were in exacerbations). By the end of this she was up 20 points in symptoms. This baseline change and the re-emergence of restrictive eating (she had symptoms of anorexia nervosa in a 7 year old) made us consider IVIG. Our belief is that if there was more spacing between activations/exacerbations, she would have done fine on the prophylactic antibiotics.

 

Best regards,

 

Buster

 

A very nice woman on another list serve pointed me to this one and I'm so glad she did. After 2 months of regression, suddenly weird behaviors, extreme physical aggression in my Asperger's son (7yrs old), I was finally able to get a strep screen done (negative) and then a strep antibody test. The pediatrician called yesterday morning and said the blood test for strep was 296 (normal is 0-200 per this lab). She has started him on Amoxicillin but as I read through the posts I'm wondering if maybe we need to be on Augmentin XR - that seems to be more commonly prescribed. My pediatrician has one other kiddo she just diagnosed with PANDAS and put on Amoxicillin so she didn't know what to expect at this point. When I first approached the psychiatrist about all the regression, sudden high levels of anxiety, etc and handed her an article on PANDAS she said she didn't know anything about that but that we just needed to put him back on Seroquel for the behavior. While I didn't agree and told her so, I said I would give it a try. I thought we should be increasing his Lexapro because his anxiety had gone through the roof. After doubling the initial dose of Seroquel and then doubling it again this past Thursday we were still sprialing downhill out of control. Now that I know it's PANDAS I'm wondering if I should contact his neurologist or let the pediatrician handle this. It's obvious to me I won't get anywhere with the psychiatrist.

 

Of those that have done the IVIG, was this after weeks/months of antibiotics or in addition to antibiotics? Is that something done in the physician's office or did it require hospitalization?

 

Thanks for the posts here. Glad to know now that I'm not going crazy and that there really was something medically causing my son's symptoms.

[lboll]

Hi Austin Mom, wecome to the forum. Lexapro led to activation in our daughter. Apparently Lexapro is actually offlabel for children (i.e., not well tested) and due to its very short half life it seems to have very significant problems especially if you miss a dose. Increasing lexapro made our child worse. While it was difficult to separate Lexapro from PANDAS, her behavior sure matched Akathesia.

 

Lexapro does have some rather nasty withdrawl symptoms and it happens very quickly. Within 24 hours of stopping Lexapro, our daughter definitely got the classic flu-like symptoms and the zapping feeling. There's a nice study by [Murphy2006]Murphy TK, Storch EA, Strawser MS, "Selective serotonin reuptake inhibitor-induce behavioral activation in the PANDAS subtype", Primary Psychiatry, 2006;13(8):87-89, http://mbldownloads.com/0806PP_Murphy.pdf

 

In terms of long-term treatment with antibiotics, we did this for 72 weeks (i.e., about 1.5 years). Without a doubt the antibiotics helped a lot, but our daughter never really "reset" back to full remission. After each episode, she got better, but not back to the same behavior pre exacerbation. She had 6 exacerbations over the 72 weeks -- each exacerbation lasting 4-5 weeks (i.e., 27 weeks were in exacerbations). By the end of this she was up 20 points in symptoms. This baseline change and the re-emergence of restrictive eating (she had symptoms of anorexia nervosa in a 7 year old) made us consider IVIG. Our belief is that if there was more spacing between activations/exacerbations, she would have done fine on the prophylactic antibiotics.

 

Best regards,

 

Buster

 

Butster,

I didn't realize that restrictive eating is a symptom. My son will go weeks with only eating one or two things (if anything at all). Then, all of a sudden he'll crave chicken or something and eat well for about a week. Then, the restrictive eating starts again. Is this similar to what you've gone through with your daughter?

 

 

 

A very nice woman on another list serve pointed me to this one and I'm so glad she did. After 2 months of regression, suddenly weird behaviors, extreme physical aggression in my Asperger's son (7yrs old), I was finally able to get a strep screen done (negative) and then a strep antibody test. The pediatrician called yesterday morning and said the blood test for strep was 296 (normal is 0-200 per this lab). She has started him on Amoxicillin but as I read through the posts I'm wondering if maybe we need to be on Augmentin XR - that seems to be more commonly prescribed. My pediatrician has one other kiddo she just diagnosed with PANDAS and put on Amoxicillin so she didn't know what to expect at this point. When I first approached the psychiatrist about all the regression, sudden high levels of anxiety, etc and handed her an article on PANDAS she said she didn't know anything about that but that we just needed to put him back on Seroquel for the behavior. While I didn't agree and told her so, I said I would give it a try. I thought we should be increasing his Lexapro because his anxiety had gone through the roof. After doubling the initial dose of Seroquel and then doubling it again this past Thursday we were still sprialing downhill out of control. Now that I know it's PANDAS I'm wondering if I should contact his neurologist or let the pediatrician handle this. It's obvious to me I won't get anywhere with the psychiatrist.

 

Of those that have done the IVIG, was this after weeks/months of antibiotics or in addition to antibiotics? Is that something done in the physician's office or did it require hospitalization?

 

Thanks for the posts here. Glad to know now that I'm not going crazy and that there really was something medically causing my son's symptoms.