Buster Posted October 25, 2008 Report Share Posted October 25, 2008 Two weeks ago, our dd started exhibiting odd behavior once again. She's been on propholactic antibiotics since she got out of the hospital in March (7 months ago). We're seeing some of her measurement rituals return, some of her odd motion tremors and some restriction in her eating (similar to how she was in early February). This is by no means of the same magnitude as her symptoms in February, but it is also not the absence of symptoms that we've been blessed with for the past 4 months. Low and behold we received strep notifications from her school and ended up taking her sister to the doctor to check for strep. Sure enough her sister cultured positive -- way positive. So we're treating her sister to eradicate her strep and are hoping our dd's symptoms subside. We sort of knew this might happen -- i.e., that despite propholaxis our dd could have exacerbations due to exposure to strep. Even in the case of penicillin (which is bacteriacidal) it only supresses rapid growth and still relies on the body's immune system to get the bulk of the infection. Azithromycin stops the production of a protein, but similarly relies on the body's immune system to get the infection. So in the face of some strep, out come the antibodies and if the Swedo/Kirvan reports are correct, we'll have some cross-reaction/inflammation before the strep is wiped out. So we're seeing a low-level version of symptoms. We're worried it'll get worse and hope it disappears again when her sister is cleared, but we'll have to see. Sigh.... Buster Link to comment Share on other sites More sharing options...
michele Posted October 25, 2008 Report Share Posted October 25, 2008 Just wondering if you had heard or researched Actos? Our DAN! seems to think this is the med for the future to correct immune issues in spectrum kids. Is your daughter on anxiety meds now? We are taking meds to control the symptoms. My son is starting Zoloft 12 mg a day to stop the obsessive thoughts and repetitive movements. I was interested to know your opinion on these drugs? My son also takes Abilify for the moods, and tics and ADHD. I really don't think you can expect an antibiotic to take away all the symptoms. My son also takes a daily antibiotic Omnicef 300 mg a day to keep the strep at bay. He has ben exposed to alot of strep and crud this fall and has had some set backs. I notice it used to work better in the beginning. I am not sure what is next in regards to the antibiotics. What would be the next stronger antibiotic after Omnicef? I hate to jump to azith because if it looses its effectiveness what is left? Michele Two weeks ago, our dd started exhibiting odd behavior once again. She's been on propholactic antibiotics since she got out of the hospital in March (7 months ago). We're seeing some of her measurement rituals return, some of her odd motion tremors and some restriction in her eating (similar to how she was in early February). This is by no means of the same magnitude as her symptoms in February, but it is also not the absence of symptoms that we've been blessed with for the past 4 months. Low and behold we received strep notifications from her school and ended up taking her sister to the doctor to check for strep. Sure enough her sister cultured positive -- way positive. So we're treating her sister to eradicate her strep and are hoping our dd's symptoms subside. We sort of knew this might happen -- i.e., that despite propholaxis our dd could have exacerbations due to exposure to strep. Even in the case of penicillin (which is bacteriacidal) it only supresses rapid growth and still relies on the body's immune system to get the bulk of the infection. Azithromycin stops the production of a protein, but similarly relies on the body's immune system to get the infection. So in the face of some strep, out come the antibodies and if the Swedo/Kirvan reports are correct, we'll have some cross-reaction/inflammation before the strep is wiped out. So we're seeing a low-level version of symptoms. We're worried it'll get worse and hope it disappears again when her sister is cleared, but we'll have to see. Sigh.... Buster Link to comment Share on other sites More sharing options...
Betty04 Posted October 25, 2008 Report Share Posted October 25, 2008 Two weeks ago, our dd started exhibiting odd behavior once again. She's been on propholactic antibiotics since she got out of the hospital in March (7 months ago). We're seeing some of her measurement rituals return, some of her odd motion tremors and some restriction in her eating (similar to how she was in early February). This is by no means of the same magnitude as her symptoms in February, but it is also not the absence of symptoms that we've been blessed with for the past 4 months. Low and behold we received strep notifications from her school and ended up taking her sister to the doctor to check for strep. Sure enough her sister cultured positive -- way positive. So we're treating her sister to eradicate her strep and are hoping our dd's symptoms subside. We sort of knew this might happen -- i.e., that despite propholaxis our dd could have exacerbations due to exposure to strep. Even in the case of penicillin (which is bacteriacidal) it only supresses rapid growth and still relies on the body's immune system to get the bulk of the infection. Azithromycin stops the production of a protein, but similarly relies on the body's immune system to get the infection. So in the face of some strep, out come the antibodies and if the Swedo/Kirvan reports are correct, we'll have some cross-reaction/inflammation before the strep is wiped out. So we're seeing a low-level version of symptoms. We're worried it'll get worse and hope it disappears again when her sister is cleared, but we'll have to see. Sigh.... Buster I am sorry you are seeing some of the old symptoms return. It is a horrible feeling to think you've found the "answer" only to learn that its not the whole answer! Is there a chance that if your daughter was on weekly Azithromycin that increasing it to a daily dose will help or has she been on the daily dose? You have my thoughts and prayers and I hope the symptoms disappear soon. Link to comment Share on other sites More sharing options...
P_Mom Posted October 25, 2008 Report Share Posted October 25, 2008 Buster and EAMom, Sorry to hear about the return of mild symptoms with your daughter....I know how it feels. Unfortunately, this is the course of PANDAS. Even on prophylactic antibiotics, the symptoms always return with any illness or any exposure to illness...and not just strep...... (although usually milder with the antibiotics) This has been the course over here for the last year and a half....complete resolution after first episode, and then recurrance of mild symptoms with ANY immune challenge...although milder like you said. Last school year, my younger son never had a 100% complete remission of symptoms (although VERY close) the whole year because of the nearly constant exposure to illness at school. He did do GREAT over the summer! So, you can help keep symptoms controlled with antibiotics, and help keep the big strep wammie away, but, it will not cure/prevent flairs. I think IVIG is the only hope for that....... By the way...In a way, I was releived that both my sons are on prophylactic antibiotics...it will help keep them both strep free...so to keep one from coming home with strep and affecting the whole house. Since your younger daughter seems to be so prone to strep and the carrier state....I wonder what the implications would be to put her on prophylactic antibiotics...maybe a mild one, like Pen VK? I know it is a big step and something to seriously consider........and I know a lot of people on here would think that is crazy, but, just a thought..... Kelly Link to comment Share on other sites More sharing options...
myrose Posted October 25, 2008 Report Share Posted October 25, 2008 Michele, not sure if the abilify or zoloft falls into this category but if you suspect Pandas then I would ask "WORRIED DAD" about his post and experiences on the psych drugs. Here is part of the post: I'm afraid my son's progress on zithromax was completely obscured by psych meds (ativan and zyprexa) prescribed by our local psychiatrist that put our son over the edge. By the time we were warned by others on this forum and by Dr. K that these meds were bad news for most PANDAS kids. Again I have no idea what kinds of drugs fall under that category, but just wanted to give you a heads up if you suspect Pandas. I hope things improve for you soon. quote name='michele' date='Oct 25 2008, 09:25 AM' post='27385'] Just wondering if you had heard or researched Actos? Our DAN! seems to think this is the med for the future to correct immune issues in spectrum kids. Is your daughter on anxiety meds now? We are taking meds to control the symptoms. My son is starting Zoloft 12 mg a day to stop the obsessive thoughts and repetitive movements. I was interested to know your opinion on these drugs? My son also takes Abilify for the moods, and tics and ADHD. I really don't think you can expect an antibiotic to take away all the symptoms. My son also takes a daily antibiotic Omnicef 300 mg a day to keep the strep at bay. He has ben exposed to alot of strep and crud this fall and has had some set backs. I notice it used to work better in the beginning. I am not sure what is next in regards to the antibiotics. What would be the next stronger antibiotic after Omnicef? I hate to jump to azith because if it looses its effectiveness what is left? Michele Two weeks ago, our dd started exhibiting odd behavior once again. She's been on propholactic antibiotics since she got out of the hospital in March (7 months ago). We're seeing some of her measurement rituals return, some of her odd motion tremors and some restriction in her eating (similar to how she was in early February). This is by no means of the same magnitude as her symptoms in February, but it is also not the absence of symptoms that we've been blessed with for the past 4 months. Low and behold we received strep notifications from her school and ended up taking her sister to the doctor to check for strep. Sure enough her sister cultured positive -- way positive. So we're treating her sister to eradicate her strep and are hoping our dd's symptoms subside. We sort of knew this might happen -- i.e., that despite propholaxis our dd could have exacerbations due to exposure to strep. Even in the case of penicillin (which is bacteriacidal) it only supresses rapid growth and still relies on the body's immune system to get the bulk of the infection. Azithromycin stops the production of a protein, but similarly relies on the body's immune system to get the infection. So in the face of some strep, out come the antibodies and if the Swedo/Kirvan reports are correct, we'll have some cross-reaction/inflammation before the strep is wiped out. So we're seeing a low-level version of symptoms. We're worried it'll get worse and hope it disappears again when her sister is cleared, but we'll have to see. Sigh.... Buster Link to comment Share on other sites More sharing options...
P_Mom Posted October 25, 2008 Report Share Posted October 25, 2008 Buster, Since your daughter is on antibiotics, the chances of the symptoms becoming even worse is slim...she will likely begin to wane again over time...although it could take a while. A bad episode has not occurred here for either of my boys since being on antibiotics. My older son will get very slight flairs with illness...which goes away quite rapidly...in a day or two. My younger son will also flair with illness..a bit more than older son..and his takes a while longer to wane...sometimes a month, but, his PANDAS presentation was much worse than older sons. Just hoping to give you reassurance that things will LIKELY not get worse. Kelly Link to comment Share on other sites More sharing options...
EAMom Posted October 25, 2008 Report Share Posted October 25, 2008 Hi Everyone, Our 8 year old dd is still on Azith. 250mg/day. I can imagine things would be much worse if she was on a lower dose. She's also on 10mg prozac daily (this is a low dose). We kept her on the prozac b/c helped with her pre-existing social anxiety and it seemed to agree with her (I think she was a bit serotonin deficient to begin with). It appears the prozac is helping things as her mood is very good...much better than last spring. She's also on a multi-vit and probiotic. I'm hoping things turn around once her sister is clear of strep. My only concern is that our younger dd seems to pick up strep (with no symptoms) from her classmates very easily...this could be a viscious cycle of our younger dd bringing strep home to our older dd all school year long. P.Mom...your suggestion of putting our younger dd on pen prophylaxis had actually crossed my mind! (However, if we get to that point, it might be time for IVIG?) I also don't know if we could get our ped to go with that plan. Plus, our younger dd hates taking meds (she's 5, doesn't know how to swallow pills yet). She also hates throat cultures...sigh. All in all, things are much much better than last spring. I do think the Azith. and prozac are helping. Plus, dd's weight is still very good. For the most part she's still doing great. I'm just getting discouraged thinking we have 10 (or more) years of this vicious cycle...younger dd bringing home strep, causing symptoms in the our older dd, always being on the alert for symptoms, always having to make sure dd eats....and maybe it would just make sense to cut to the chase and do IVIG. My dd has enough to deal with growing up, the typical kid/teen stresses plus dysgraphia and possible dyslexia without worrying about strep and PANDAS. Michele...I'd be too worried to try actos after reading about it (black box warning, not appoved for pediatric use, off label use)...I actually doubt our ped would rx it anyway. Myrose....I completely agree that psych. drugs need to be used with caution. We had problems with lexapro (the 1st ssri dd was on)...serotonin syndrome, akathesia. Playing around with pscyh. meds can also be confusing in the middle of a PANDAS episode b/c it becomes hard to sort out what symptoms are form PANDAS and what symptoms are from the psych. meds (as worried dad found out). On the other hand, the ssri (lexapro and then prozac) did help the ocd and help dd's eating when the anorexia nervosa was bad. IMO SSRi's (and other pscyh drugs) can be useful but need to be used with lots of caution, esp. when multiple drugs are used. Plus, I did read that PANDAS kids may be more sensitive to ssri's so you should keep the doses low. This was definitely our experience. I think this year will be a waiting game...what happens with more strep exposure and also other illnesses. Maybe that will help us make the IVIG decsion... Link to comment Share on other sites More sharing options...
P_Mom Posted October 25, 2008 Report Share Posted October 25, 2008 EA Mom, That is how I feel A LOT lately..."just cut to the chase and do the IVIG." To know it has the potential to take care of this for good, and being my son is just turnung 6 (this Tues.)........well, I just can't stop thinking that, well, the antibiotics help, but, not totally...this poor little guy still has to deal with this stuff...the anxiety is the one that kills me..he is only 6 for crying out loud...he shouldn't have to deal with anxiety!! And then I think that..well, if all I need to do is IVIG, which really is not that big of a deal...then, would it be, well, almost cruel of me to make him deal with this for all these years for nothing?? Dr. K says the anxiety stays...even after puberty... I just don't know.....I just can't shake the gut feeling to do it........... Kelly Link to comment Share on other sites More sharing options...
EAMom Posted October 25, 2008 Report Share Posted October 25, 2008 Hi Kelly, my other thought about IVIG is that supposedly it's better to do it when they are younger (under 10? I think is what webpediatrics.com said)...so I don't want to make the mistake of waiting and then have to do IVIG when dd's 12 (perhaps b/c we hit an Azithromycin resistant strain of strep) and maybe the IVIG won't work as well b/c dd is too old...and then we've also put her through several years of needless PANDAS episodes when we could have just cut to the chase and done it early. It's probably not covered by insurance but when you look at it over the next 10 or so years...saving a lot of time and grief in the long run the price doesn't seem bad at all. Link to comment Share on other sites More sharing options...
bmom Posted October 25, 2008 Report Share Posted October 25, 2008 EAMmom and Pmom, You are all thinking the same as I have over the last couple of months. We had a phone consult with Dr. K regarding IVIG and he said' "Look at your son now and decide if nothing in his symptoms changes, would he be ok at 20?" That helped us to make the decision to move forward with IVIG. His tics are not horrible and would probably be ok if nothing were to change. But when he watches tv they are bad and so he has not watched tv for several months as they last for a week. so, we are moving forward. I also thought about the age thing as he is turning 10 next week and want to be in the youngest age range. My last thought is what if we dont do it and he is ok now, but has a bad episode at say 13? Then what? He is past the effective age. So, who knows. We are praying it is our answer. 3 weeks to go...... Link to comment Share on other sites More sharing options...
P_Mom Posted October 25, 2008 Report Share Posted October 25, 2008 Oh man.... I got chills reading the last couple posts, EAmom and Bmom. Thinking if my younger son would be okay at 20 if nothing were to change...well...I can't say with confidence he would. Wow, that really puts it in to perspective...now, I could say if my older son stays this way....he would be fine......there is just an element to my younger son that just doesn't sit right with me, even though his symptoms are currently not visible..I wonder what he feels internally? Perhaps those goose bumps were "God Bumps" (have you guys ever heard them referred to that way?) and I am trying to be told something?? Also, I agree with the age..he is 6.......he should respond great right now!! BMom.....I am hoping and praying this works for you guys..PLEASE keep us posted!!!! Kelly Link to comment Share on other sites More sharing options...
Indigo Posted October 26, 2008 Report Share Posted October 26, 2008 So even if most PANDAS symptoms cease after 18-20, since adults can't have it, the anxiety stays for life? Link to comment Share on other sites More sharing options...
P_Mom Posted October 26, 2008 Report Share Posted October 26, 2008 That is what I have been told by dr.K...also, the Mom I speak with who had a daughter in the NIMH study confirmed it (atleast in her case)...she said her daughters OCD went away, etc., but the symptom she still has quite a bit of is anxiety. I am also not so sure that adults can't get/have PANDAS........or atleast a variant of it. Link to comment Share on other sites More sharing options...
ad_ccl Posted October 26, 2008 Report Share Posted October 26, 2008 our son is on azith every 5 days - when we see breakthrough symptoms with exposure to strep (or other illness) we give a round of antibiotics - a 5 day course will usually settle things down. Link to comment Share on other sites More sharing options...
Indigo Posted October 26, 2008 Report Share Posted October 26, 2008 My dd still has symptoms on Clarithromycin...there doesn't seem to be a rhyme or reason, but she'll get really edgy and then her throat tic starts again and she screams at us...I'm at the point where I'm not sure the anti is doing anything at all. She has been doing quite well on Singulair now that she gets 20mg a day. I also give Boswellia and diflucan. We're considering the subcutaneous IVIG that we can do in our doctor's office, but I'm hesitant. We just had a blood test Sat. to check strep titers, thyroid, and IGA allergy and I guess to check to see if she has IVG issues or something so it will be easier with insurance. After the prednisone was so successful our doctor is pretty convinced it is autoimmune. Link to comment Share on other sites More sharing options...
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