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10 weeks post PEX- Cam kinase II 173


Alex

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We had our appointment with Dr. Latimer on Wednesday. She gave my son a neurological exam and said that he no longer has any Chorea, as compared to pre Plasmapheresis. She felt this is a good sign despite the high Cam Kinase. My son was just finishing up a two week course of prednisone, 30mg/day the first week and 15 the second. The last few days before the appointment we started to see a little progress, but not much. The progress consisted solely of making it through a couple of days in a row without a major rage. We'll take it at this point but certainly not what we were hoping for going into the PEX.

 

Because of the high Cam Knase and how awful things have been with our son, I went in to the appointment hoping Dr. Latimer would recommend IVIG. We are so desperate to get our son and our lives back that I probably would have had him do it that day if she gave us the go. She feels, however, that the abscence of Chorea is positive and recommended continuing with prednisone for another month. She also would like to switch him to augmentin but that is a no go until we can find someone up here in Maine willing to do an oral challenge for penecillin allergy, which he has supposedly had since age 2 but now tested negative for on an allergy test. Until then she wanted to keep him on 250mg of azith every other day. I mentioned that I was aware of a good number of kids who were on 250mg every day and she called an infectious disease MD friend who said that 250/day was fine long term so we got the prescription. She wants to see where things are in a month and then revisit the idea of IVIG if my son is still having signifcant issues. I am skeptical that more prednisone is going to do the trick considering that since he relapsed post pex due to the tooth infection he has now done a one week and a two week course of prednisone. I feel pretty strongly that the PEX worked but that we lost the benefits due to the tooth infection and aren't going to get them back. She, I believe, feels that is not necessarily the case. I hope she is right but think it is possible that she is too attached to the idea that PEX is an absolute cure. I think it is a cure too, so long as something doesn't happen to mess it up, and preventing that something from happening isn't so easy.

 

I read the study on intracellular strep that Buster provided the link to. In the study they found erythromycin and azithromycin much more effective then penecillin at killing intracellular strep in epithelial cells. Augmentin was not tested. Epithelial cells have a short lifespan of a few days. I wonder if maybe strep can go intracellular in other types of cells that do not have such a short lifespan. What if these cells also can not be penetrated by any antibioitic. As these cells die/burst, they would constanly be giving the immune system a reason to be producing strep antiboides. In 'Saving Sammy', Sammy was on augmentin for 4 years with a reduction in dosage causing a return of symptoms. Maybe 4 years was the amount of time it took for all of the cells in his body that contained intracellular strep to die. Without the constant dose of augmentin there to aid in quickly killing any stray strep bacteria, the immune response would be constantly resulting in an elevated antibody level, with, in turn, elevated PANDAS symptoms. I know in my son's case, his strep went undiagnosed and was not treated with antibiotics. Eventually the immune system suppressed the infection but there was certainly an extended opportunity for strep to get as intracellular as it can possibly get. Buster, I'd be curious to get your opinion on this if you get a chance. Thanks

 

Alex

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His strep went undiagnosed and was not treated with antibiotics. Eventually the immune system suppressed the infection but there was certainly an extended opportunity for strep to get as intracellular as it can possibly get. Buster, I'd be curious to get your opinion on this if you get a chance.

 

Alex, I think your explanation is very plausible. It is what we think was going on with our daughter. Augmentin did seem to help initially, but our prophylactic dose of amoxicillin was insufficient to prevent re-infection from her sister. Azithromycin was very effective but in our case it took 10 days of treatment before we saw benefit. At the worst, our dd9's CaM Kinase was 253. This was in the middle of an exacerbation.

 

In our case, we did try prednisone in combination with azithromycin and this was effective. However, the effect we saw was at 2 weeks post burst. I mention this because others on the forum seemed to have immediate benefit. That was not the case for us. Similarly once we did IVIG it took 2 weeks before that took effect.

 

Bottom line is that you read the papers the same way I did and I'd be happy to followup in an IM if there's anything we can answer for you.

 

Best regards,

 

Buster

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I pulled up a quote from Diana's meeting with Cunningham in Sept

 

http://www.latitudes.org/forums/index.php?...ic=5349&hl=

 

 

Sept 18

"Madeleine said that the clinical picture is the most important thing because this bloodwork is new. She said not to be afraid if your child re-tests for Cam Kinase in a few months after treatment and the numbers are still high. She said rather look at your child. If a little OCD remains or mild tics – it is up to the parent and child and the disruption to family to decide if further treatment is warranted. "

 

I realize you said tics are still present, anger, and mild OCD. Is he any better than he was prior to PEX?As for the actual numbers, hopefully, that quote from the meeting helps.

 

 

I was guessing he was going to have a CaM Kinase score on the lower end of the PANDAS scale.

Alex

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Alex, your post scares me to no end. But it is because of your post and MomMD that I have one thought for you. Prior to doing PEX, we did 2 rounds of IVIG and got literally instantaneous results. We had 31 days of bliss each time. Then on day 32 life returned to hel!. It was after the second one that we decided to do PEX. The week before we were scheduled was when your post and MomMD post showed up and I was terrified and devastated. Like you, I think that Dr. Latimer thinks that a one time PEX is the all out cure. However, 2009 has been such a hooror film for us that I simply coudn't leave the hospital without any other information on what to do if we found ourselves in a situation like what I have seen posted here. We live in Seattle and getting to see Latimer is not a simple task.

 

During one of the pharesis sessions I asked Daisy some questions. I told her that getting results has never been our problem but that keeping them is the challenge. I asked her if she sees that IN GENERAL with all auto immune diseases - not just PANDAS. She said that sometimes they do. I asked what happens in that situation. She said she had no knowledge with PANDAS, but with other autoimmune diseases they do PEX then use the appropriate drug to get the patient back to baseline. Then if the patient spirals out of control, they will do another PEX. Some patients require only one more treatment, some every six months some even monthly. But she had no knowledge of PANDAS specifically. I felt much better getting the worst case scenario. I feel Dr. Latimer thinks one PEX and your done and I am terrified that is not the case.

 

I'm wondering if in the PANDAS case, the drug to get the children back to baseline is IVIG. I would love to hear others' thoughts on this. I breifly mentioned this to our ped and she thought it made sense. But we are only 7 days out and are still waiting to see effects from the PEX. But now that we have the flu I am scared, scared, scared!!!

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Alex, I will be very interested in hearing about how your son does with the increased dose of Zithromax. Our situations have some similarities. At 6 weeks post PEX, I am seeing only small improvements with my son, who is 13 and has had PANDAS for almost three years. I wish we could try Augmentin, but I am sure my son is allergic to Amoxicillin because of an outbreak of hives that occurred all over his body while he was on it for a strep five years ago. If he were to test negative for the allergy now, I would still be reluctant to try it. Also, before PEX he was only on 250 mg. of Zithromax twice a week because in the past his stomach has not been able to tolerate higher doses. This does not leave us with many options for antibiotics. Because of all the people on the forum who are suggesting higher doses of antibiotics post PEX, I decided to try to gradually increase the Zithro while increasing his probiotics at the same time to help with the stomach issues. About a week post PEX I asked Dr. Latimer about increasing the Zithro to three days a week at 250 mg. and she thought that was fine. Then, we saw some improvements with my son's zoning out problems, so after a couple more weeks, I persuaded our immunologist to increase it to 250 mg every other day. I am not sure if this is helping yet, but he is having a little stomach trouble and if I increase more, I have to go slowly and figure out what to do about his stomach issues. We are considering monthly IVIG with the immunologist (he does have a lot of immune deficiencies), but I want to wait and see how how much he improves first from the PEX and the increases in the Zithro. Our immunologist agrees with the idea of waiting. Please keep us posted on how your son does with his new daily dose.

 

Ellen

 

 

We had our appointment with Dr. Latimer on Wednesday. She gave my son a neurological exam and said that he no longer has any Chorea, as compared to pre Plasmapheresis. She felt this is a good sign despite the high Cam Kinase. My son was just finishing up a two week course of prednisone, 30mg/day the first week and 15 the second. The last few days before the appointment we started to see a little progress, but not much. The progress consisted solely of making it through a couple of days in a row without a major rage. We'll take it at this point but certainly not what we were hoping for going into the PEX.

 

Because of the high Cam Knase and how awful things have been with our son, I went in to the appointment hoping Dr. Latimer would recommend IVIG. We are so desperate to get our son and our lives back that I probably would have had him do it that day if she gave us the go. She feels, however, that the abscence of Chorea is positive and recommended continuing with prednisone for another month. She also would like to switch him to augmentin but that is a no go until we can find someone up here in Maine willing to do an oral challenge for penecillin allergy, which he has supposedly had since age 2 but now tested negative for on an allergy test. Until then she wanted to keep him on 250mg of azith every other day. I mentioned that I was aware of a good number of kids who were on 250mg every day and she called an infectious disease MD friend who said that 250/day was fine long term so we got the prescription. She wants to see where things are in a month and then revisit the idea of IVIG if my son is still having signifcant issues. I am skeptical that more prednisone is going to do the trick considering that since he relapsed post pex due to the tooth infection he has now done a one week and a two week course of prednisone. I feel pretty strongly that the PEX worked but that we lost the benefits due to the tooth infection and aren't going to get them back. She, I believe, feels that is not necessarily the case. I hope she is right but think it is possible that she is too attached to the idea that PEX is an absolute cure. I think it is a cure too, so long as something doesn't happen to mess it up, and preventing that something from happening isn't so easy.

 

I read the study on intracellular strep that Buster provided the link to. In the study they found erythromycin and azithromycin much more effective then penecillin at killing intracellular strep in epithelial cells. Augmentin was not tested. Epithelial cells have a short lifespan of a few days. I wonder if maybe strep can go intracellular in other types of cells that do not have such a short lifespan. What if these cells also can not be penetrated by any antibioitic. As these cells die/burst, they would constanly be giving the immune system a reason to be producing strep antiboides. In 'Saving Sammy', Sammy was on augmentin for 4 years with a reduction in dosage causing a return of symptoms. Maybe 4 years was the amount of time it took for all of the cells in his body that contained intracellular strep to die. Without the constant dose of augmentin there to aid in quickly killing any stray strep bacteria, the immune response would be constantly resulting in an elevated antibody level, with, in turn, elevated PANDAS symptoms. I know in my son's case, his strep went undiagnosed and was not treated with antibiotics. Eventually the immune system suppressed the infection but there was certainly an extended opportunity for strep to get as intracellular as it can possibly get. Buster, I'd be curious to get your opinion on this if you get a chance. Thanks

 

Alex

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Taken from the couple of studies I posted.... the S. pyogenes (Group A) was detected in the buffy coats of peripheral blood from patients, ASO and Anti-DNAse-B do not rise in Kawasaki's, Kawasaki's share 93 symptoms with RF. Its my perspective you have to continue to rid the child of underlying infection. The M 18 (S. pyogenes) is a difficult strains to eradicate.... stay determined, I suspect it takes a good year to see full recovery, you have to stay ahead of the bacteria and cross reactive antibodies. Why I believe the higher dose of antibiotic is working in conjunction with IVIG and PEX.

 

In summary, emerging evidence strongly suggests an involvement of streptococcal superantigens in the pathogenesis of RF and Kawasaki disease. Changes in HLA class II alleles appear to affect superantigen functions, dramatically leading to the proliferation of specific T cell clones, which appear to target cardiac and vascular tissues. The pressing need at this time is to examine the role of superantigens from M18 strain (known to cause RF) in SC and PANDAS. We speculate that subsets of other psychiatric disorders such as anorexia nervosa, body dysmorphic disorder, and ADHD may also share pathophysiology similar to that of RF. Findings from these studies, if affirmative, would have a profound impact for the practicing physicians in psychiatry and pediatrics.

 

http://neuro.psychiatryonline.org/cgi/content/full/16/3/252

 

 

Kawasaki disease recovering from the acute, febrile phase of the illness exhibited an exaggerated cell-mediated reactivity, as measured by the macrophage migration inhibition test, to group A -haemolytic streptococci, their pyrogenic exotoxin and streptolysin 0 as well as to several mammalian muscle cell extracts which are allegedly related antigenically to the cell wall and/or cytoplasmic membrane ofS. pyogenes. Protoplast-like spherical bodies varying in diameter from 0.5 to 1.5 m, and devoid of cell walls, were detected in the buffy coats of peripheral blood from patients with this disease

 

http://www.springerlink.com/content/l34qj830548q4q46/

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Ellen, we will certainly keep you posted. I said it somewhere else, but in hindsight I wish we had given my son daily antibiotics after the PEX right from the start. EAMom, SFMom, Diana Pohlman( all angels in my opinion) and others whose kids are doing well in recovery, stress the daily antibiotics. It sounds obviously that you are in a difficult situation, but with the probiotics hopefully you can try the azith every day, something that I believe Dr. Latimer will be willing to do from now on. Also, my son got hives while on penecillin when he was a toddler. He now tests negative for the allergy and we are waiting for an oral challenge. The allergist says that he either never had an allergy but got hives due to a virus while coincidently taking penecillin, or just grew out of it. Might be worth a try. Alex

 

Alex, I will be very interested in hearing about how your son does with the increased dose of Zithromax. Our situations have some similarities. At 6 weeks post PEX, I am seeing only small improvements with my son, who is 13 and has had PANDAS for almost three years. I wish we could try Augmentin, but I am sure my son is allergic to Amoxicillin because of an outbreak of hives that occurred all over his body while he was on it for a strep five years ago. If he were to test negative for the allergy now, I would still be reluctant to try it. Also, before PEX he was only on 250 mg. of Zithromax twice a week because in the past his stomach has not been able to tolerate higher doses. This does not leave us with many options for antibiotics. Because of all the people on the forum who are suggesting higher doses of antibiotics post PEX, I decided to try to gradually increase the Zithro while increasing his probiotics at the same time to help with the stomach issues. About a week post PEX I asked Dr. Latimer about increasing the Zithro to three days a week at 250 mg. and she thought that was fine. Then, we saw some improvements with my son's zoning out problems, so after a couple more weeks, I persuaded our immunologist to increase it to 250 mg every other day. I am not sure if this is helping yet, but he is having a little stomach trouble and if I increase more, I have to go slowly and figure out what to do about his stomach issues. We are considering monthly IVIG with the immunologist (he does have a lot of immune deficiencies), but I want to wait and see how how much he improves first from the PEX and the increases in the Zithro. Our immunologist agrees with the idea of waiting. Please keep us posted on how your son does with his new daily dose.

 

Ellen

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I pulled up a quote from Diana's meeting with Cunningham in Sept

 

http://www.latitudes.org/forums/index.php?...ic=5349&hl=

 

 

Sept 18

"Madeleine said that the clinical picture is the most important thing because this bloodwork is new. She said not to be afraid if your child re-tests for Cam Kinase in a few months after treatment and the numbers are still high. She said rather look at your child. If a little OCD remains or mild tics – it is up to the parent and child and the disruption to family to decide if further treatment is warranted. "

 

I realize you said tics are still present, anger, and mild OCD. Is he any better than he was prior to PEX?As for the actual numbers, hopefully, that quote from the meeting helps.

 

 

Vickie, thanks for the info. My son was much, much better at about 3 weeks post PEX but then started regressing. I would say that as of about a week ago he was no better then pre pex. We have seen some progess the last few days but I attribute to daily antibioitcs and prednisone. I could be wrong but think the we lost the pex benefits due to tooth infection or possibly intracellular/hidden strep. Come heck or high water we will be going off daily antibioitcs over my dead body at this point. Alex

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Ellen- have you seen an allergist regarding the antibiotic allergy. We did with my non pandas daughter, because she had rash reactions to several antibiotics. The allergist took a detailed history. He felt most likely she did not have a life threatening allergy, we are waiting on an allergy test. Many rashes can be side affects to the meds, or part of the virus.... You may have looked into it- but if not, it is worth a try....

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DC Mom, I have not had my PANDAS son officially tested for an Amoxicillin allergy, but I think for him it is the antibiotic that he reacted to because my husband and my non-PANDAS son have also had hives or rashes while on this drug. It is still possible that it might have been the strep itself and not the antibiotic that caused his hives, so I should probably look into it with an allergist at some point. Maybe I'll do this if we don't get good enough results from increasing the Zithro. If he does turn out to test negative for Amoxicillin, maybe I would consider starting it in very small doses to see how he reacts. This is an excellent suggestion. Thanks.

 

Ellen

 

Ellen- have you seen an allergist regarding the antibiotic allergy. We did with my non pandas daughter, because she had rash reactions to several antibiotics. The allergist took a detailed history. He felt most likely she did not have a life threatening allergy, we are waiting on an allergy test. Many rashes can be side affects to the meds, or part of the virus.... You may have looked into it- but if not, it is worth a try....
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sorry to jump in and interject something, but while you're on the subject of amoxy and rash, I've had my son on Augmentin 1000 mg. per day total (10 yrs. old and 52 lbs.), and while its not out of control, he has been telling me he is itchy.....once it was his butt cheek, last couple nights it was his foot, and last night he was saying he's itchy on his head/back and heel and kept scracthing while he was trying to fall asleep.

 

I'm wondering if it is the Augmentin or the Ibuprofen, because I was experimenting to see how he did if I gave him two advil within a couple hours of each other in the early evening so I could gauge if it helped with his tics. can't attest that it did tho, but I wanted to see, since someone asked about it on the board yesterday, and I was giving it once or twice a day, but didn't really pay close attention. (he does seem quieter right now, however, but I didn't give him any today, just the two last night).

 

so if he's itchy because of the augmentin, is it a big deal? he's not going crazy, there seems to be no rash, but he seems to have a bout of itchiness, so wondering if this is okay. I know momtocole reported that a few weeks ago with her son when she upped it to sammy dose. Is anyone else here having itchy kids on Augmentin?

 

Faith

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Our dd also had an amox rash that was very hive like. It only stopped when she stopped the amox. She did the allergy test followed by the oral challenge but was found not to be allergic. She has since taken penvk daily for prophylaxis for maybe a month or so until we changed her to azith for its immune mod effects.

 

I believe the non allergic amox rash is thought to occur when you have a virus at the same time such as mono and the body reacts to both.. gets confused is how our allergist put it, the body then reacts as though it has a rash like illness.

 

From wikipedia, if you trust it...

 

Somewhere between 3% to 10% of children taking amoxicillin (or ampicillin) show a late-developing (>72 hours after beginning medication and having never taken penicillin-like medication previously) possibly itchy rash, which is sometimes referred to as the "amoxicillin rash." The rash can also occur in adults.

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