Update - Pediatrician Appointment

[HaylesJohnson]

I have been keeping in close contact with one particular member of the forum, however I wanted to add my update here also, for those of you who have kindly taken the time to offer us resources and advice so far.

 

Master 10 had a visit with a Pediatrician this past week - he was able to fit us in at short notice given the GPs request for him to be seen urgently for possible PANDAS. The Ped was good, and was able to pick up on some movement issues and inability to follow simple instructions and complete simple tasks etc without my having to mention it.

 

He disagrees that this is PANDAS, given that he disagrees that we could have had a negative (and descending) ASO titer, he feels Master 10 never had Scarlet Fever, despite the obvious clinical presentation - but rather, he had some other kind of infection/virus.

 

He DOES however feel that SOME of the symptoms are post infection Neuro symptoms. But he also feels he has Tourettes. Given that my son only has very rare episodes of tics, I was surprised by this - to me, the more we look at this, the more it seems like it is definitely the autoimmune assault on the brain but that perhaps this is not the first time, this might in fact be the third time, it was just more obvious, severe and I was able to make the connection given the recent infection. I am assuming the doctor is thinking a PANS type diagnosis? If he is however, would he not be familiar with the relevant tics?

 

Master 10 will be having an MRI in 2 weeks, and the Ped also ordered an extension of tests to be done on the existing blood samples. For now, the Ped will have all of the results sent back to the Psychiatrist who we will be seeing in a few weeks, and he will work with her on diagnosis of anything else involved.

 

In some small way, I feel relief to know that I do have the doctors support in my suspicion that this is post infection related - I expected to hit a brick wall there. But, the wheels are in motion

[kimballot]

Thank you for posting this update. It sounds like you are being told many different things that really seem to be covering many bases - Your son did not really have scarlet fever, and his ASO titer is descending but was never completely elevated, he has tourette (though he really does not seem to meet the criteria for tourette), and some of what you are seeing is pos-infectious, but it is not PANDAS and he you do not know what the infection was... Do I have that correct?

 

I've not been on the forum much of late, so I've not followed your story in detail. I apologize if what I am posting below is repetitious for you.

 

You must be very confused, and I feel for you having to navigate this path yourself.

 

I think the PANS article found here http://www.ocfoundation.org/uploadedfiles/MainContent/About_OCD/PANDAS%20to%20PANS%20-%20Final%20form%20for%20Pediatrics%20%20Therapeutics%202012.pdf would be helpful for your psychiatrist if she has not read it yet. It really emphasizes that PANS is not due solely to strep.

 

Also, the IOCDF website, in general, is great if you've not been on there yet http://www.ocfoundation.org/PANDAS/

 

Regarding your son's titers - you mention that he had all the clinical symptoms for scarlet fever, but now they are telling you that his ASO was never elevated "enough" to be strep, but the numbers are descending. I am not sure what that means. First, I would get the actual numbers to keep in your file as they may present a pattern in the long run that another doctor could interpret. Second, if the numbers are descending then they must have been reacting to SOMETHING. It is not uncommon for children who are immune deficient to NOT produce enough antibodies to make the titers reach what would be considered "elevated" for other children. However, if they are elevated for YOUR child, then there is an infection. Also, you should be measuring Dnase B in addition to ASO -as DNASE B tends to rise and fall a bit later than ASO and can add to your pattern.

 

You mention that you son is "always" sick. Have you had him seen by an immunologist and had him fully tested for immune deficiencies. Again - if he is immune deficient then the ASO titers may not be accurate.

 

Best wishes to you as you blaze your trail!

[HaylesJohnson]

Thank you for posting this update. It sounds like you are being told many different things that really seem to be covering many bases - Your son did not really have scarlet fever, and his ASO titer is descending but was never completely elevated, he has tourette (though he really does not seem to meet the criteria for tourette), and some of what you are seeing is pos-infectious, but it is not PANDAS and he you do not know what the infection was... Do I have that correct?

 

I've not been on the forum much of late, so I've not followed your story in detail. I apologize if what I am posting below is repetitious for you.

 

You must be very confused, and I feel for you having to navigate this path yourself.

 

I think the PANS article found here http://www.ocfoundation.org/uploadedfiles/MainContent/About_OCD/PANDAS%20to%20PANS%20-%20Final%20form%20for%20Pediatrics%20%20Therapeutics%202012.pdf would be helpful for your psychiatrist if she has not read it yet. It really emphasizes that PANS is not due solely to strep.

 

Also, the IOCDF website, in general, is great if you've not been on there yet http://www.ocfoundation.org/PANDAS/

 

Regarding your son's titers - you mention that he had all the clinical symptoms for scarlet fever, but now they are telling you that his ASO was never elevated "enough" to be strep, but the numbers are descending. I am not sure what that means. First, I would get the actual numbers to keep in your file as they may present a pattern in the long run that another doctor could interpret. Second, if the numbers are descending then they must have been reacting to SOMETHING. It is not uncommon for children who are immune deficient to NOT produce enough antibodies to make the titers reach what would be considered "elevated" for other children. However, if they are elevated for YOUR child, then there is an infection. Also, you should be measuring Dnase B in addition to ASO -as DNASE B tends to rise and fall a bit later than ASO and can add to your pattern.

 

You mention that you son is "always" sick. Have you had him seen by an immunologist and had him fully tested for immune deficiencies. Again - if he is immune deficient then the ASO titers may not be accurate.

 

Best wishes to you as you blaze your trail!

 

THANK YOU so very much for your response - I truly appreciate the time you have taken. And yes, You are correct in what you assumed from my post - that IS everything the Pediatrician is thinking!! And yes, I am quite confused now!

I completely agree with you on the ASO titers, I have raised the issue of their descent numerous times now with both the GP and the Pediatrician, but noone will elaborate or take it on board, they just dismiss my question.

 

And yet, to me, it's more than obvious, and simple - if they are descending, they MUST have been elevated for HIM! I am going to request that they are done again and see if they are still descending. It just makes no sense to me - I am not a doctor, but to me, it just seems as though SOMETHING must be causing this descent (or have caused the elevation more precisely)

You have explained to me exactly what I have wondered myself - if his immune system is weak, it would make sense that his antibodies are low and therefore his titers won't be accurate according to the test criteria - it just makes complete sense that this is the case.

 

I have the results here actually:

 

2nd day of "possible" Scarlet Fever rash) - Antistreptolysin-O: <80 IU/mL

- Anti-Streptoccal DNase: <100 IUmL

 

6 weeks after diagnosis of Scarlet Fever - Antistreptolysin-O: <59 IU/mL

- Anti-Streptoccal DNase: <80 IUmL

 

I don't know if this helps at all? I am just worried - I want to ensure that we know exactly what is going on with my son in order to get him well as soon as possible. Some days are much worse than others, and those days are so heartbreaking.

But I will call the GP now and ask for another set of tests to be done to see if it is still descending.

 

Thank you again for your help.

Edited October 15, 2012 by HaylesJohnson

[HaylesJohnson]

I have successfully managed to request yet another blood sample, and will take my son to do this after school today! Fingers crossed it might help us in putting the pieces of this puzzle together

[Missmom]

I have successfully managed to request yet another blood sample, and will take my son to do this after school today! Fingers crossed it might help us in putting the pieces of this puzzle together

You said the doctor thinks this is POST infection related. So does that mean he is unwilling to treat the symptoms because the infection is gone? What has he given you in regards to any medications. Is your son on any type of prophylactic abx. to prevent future infections? It just does not sound like he is willing to do much in the way of treatments so he is trying to fall back on the Tourette's dx. I hope you can piece together some more of the puzzle but without a willing doctor on board to treat this it is going to be a real battle. Sorry you are having to go through this.

[AmySLP]

I believe at the top one of the basic PANDAS threads discussed why strep antibodies are not needed for pandas diagnosis....after 6 months of strep and at least 3 tests for these, my daughter never rose a titer. In fact, poor vaccine response as well. I'd worry about doctors who are placing too much value on titers.

[HaylesJohnson]

I have successfully managed to request yet another blood sample, and will take my son to do this after school today! Fingers crossed it might help us in putting the pieces of this puzzle together

You said the doctor thinks this is POST infection related. So does that mean he is unwilling to treat the symptoms because the infection is gone? What has he given you in regards to any medications. Is your son on any type of prophylactic abx. to prevent future infections? It just does not sound like he is willing to do much in the way of treatments so he is trying to fall back on the Tourette's dx. I hope you can piece together some more of the puzzle but without a willing doctor on board to treat this it is going to be a real battle. Sorry you are having to go through this.

 

Yes, unfortunately at this point, the Ped is unwilling to treat anything at all! We walked out of that office with SO many possibilities in our hands, and still no form of treatment. I am hoping the extension on the blood work or the MRI will show SOMETHING that will help us get a step closer to actual treatment!

[HaylesJohnson]

I believe at the top one of the basic PANDAS threads discussed why strep antibodies are not needed for pandas diagnosis....after 6 months of strep and at least 3 tests for these, my daughter never rose a titer. In fact, poor vaccine response as well. I'd worry about doctors who are placing too much value on titers.

 

Thank You - I actually did print some of this information and an email I had received from Dr. K both stating that the absence of ASO titer is not a diagnostic criteria - the GP accepted this, however the Pediatrician did not. He outright said, "Well, it sounds as though it did present like Scarlet Fever, however the test says negative, so that is that, it is impossible that is what he had".

 

I am just thinking that perhaps, if we re-test again over the coming weeks, if we find more of a descent, perhaps we should continue testing to see if my son has a very low baseline, and that IN FACT, the first test may have been elevated for him.

 

I am more than willing to accept that perhaps the scarlet fever was an incorrect diagnosis leading us to PANS as opposed to PANDAS - however as you all well know, without some idea of exacly WHICH virus we are dealing with, treatment is impossible!

[Missmom]

I have successfully managed to request yet another blood sample, and will take my son to do this after school today! Fingers crossed it might help us in putting the pieces of this puzzle together

You said the doctor thinks this is POST infection related. So does that mean he is unwilling to treat the symptoms because the infection is gone? What has he given you in regards to any medications. Is your son on any type of prophylactic abx. to prevent future infections? It just does not sound like he is willing to do much in the way of treatments so he is trying to fall back on the Tourette's dx. I hope you can piece together some more of the puzzle but without a willing doctor on board to treat this it is going to be a real battle. Sorry you are having to go through this.

 

Yes, unfortunately at this point, the Ped is unwilling to treat anything at all! We walked out of that office with SO many possibilities in our hands, and still no form of treatment. I am hoping the extension on the blood work or the MRI will show SOMETHING that will help us get a step closer to actual treatment!

I am so sorry you are not getting any treatment for any of this. For us, augmentin has been the thing that we have found to help the most. Still not at 100% yet but it seems right now that my son will be taking this for the long haul. We just had our follow up apt. Yesterday and I was surprised that our doctor was not even interested in doing any bloodwork at all. She basically wants to just treat the symptoms. I am not sure that my sons bloodwork would have shown anything out of the ordinary anyway. We are just glad to have a treatment plan and are hopeful that these next few months will bring him back to baseline. For you, I hope that you get some answers. Would they not even be willing to try a month of abx. to see how he responds? Especially given the scarlet fever connection.

[HaylesJohnson]

I have successfully managed to request yet another blood sample, and will take my son to do this after school today! Fingers crossed it might help us in putting the pieces of this puzzle together

You said the doctor thinks this is POST infection related. So does that mean he is unwilling to treat the symptoms because the infection is gone? What has he given you in regards to any medications. Is your son on any type of prophylactic abx. to prevent future infections? It just does not sound like he is willing to do much in the way of treatments so he is trying to fall back on the Tourette's dx. I hope you can piece together some more of the puzzle but without a willing doctor on board to treat this it is going to be a real battle. Sorry you are having to go through this.

 

Yes, unfortunately at this point, the Ped is unwilling to treat anything at all! We walked out of that office with SO many possibilities in our hands, and still no form of treatment. I am hoping the extension on the blood work or the MRI will show SOMETHING that will help us get a step closer to actual treatment!

 

I am so sorry you are not getting any treatment for any of this. For us, augmentin has been the thing that we have found to help the most. Still not at 100% yet but it seems right now that my son will be taking this for the long haul. We just had our follow up apt. Yesterday and I was surprised that our doctor was not even interested in doing any bloodwork at all. She basically wants to just treat the symptoms. I am not sure that my sons bloodwork would have shown anything out of the ordinary anyway. We are just glad to have a treatment plan and are hopeful that these next few months will bring him back to baseline. For you, I hope that you get some answers. Would they not even be willing to try a month of abx. to see how he responds? Especially given the scarlet fever connection.

 

 

Thank you for your reply - My son has actually since developed a Patechea rash, and was sent for full blood count this morning, we should have results this afternoon. I am under the impression they are suspecting ITP, I don't know much about this however the doctor is feeling it is all definitely connected. Fingers crossed we will soon have some answers