tu4four Posted March 22, 2013 Report Share Posted March 22, 2013 Just wanted to let you know what was happening with my girl who has been raging every day almost constantly. Right now.....SHE'S NOT!!!!! I am sure that this will change as we've only just begun treatment, but any day around my house where my girl is actually SWEET again???? That day is a happy, dancing day!!! This is what happened. We came back from seeing the doc in North Texas a week ago. Raging was at a fever pitch. Doc switched her to omnicef from azithromycin...saw an almost immediate flare of OCD---raging continued. Every day. OCD flare only lasted that first day, and I tried to be consistent in giving her activated charcoal. Raging continued. Three days after we got back, I took all kids to the pedi to check for strep. One vomited a couple of times (the little one that we can't seem to clear), but other than that, symptoms were either mild or non-existent. All four were positive and received bicillin shots. By that afternoon/evening, she was not raging. Not yet sweet, but not raging. The next day, no raging, sweet. The next day, no raging, sweet. The next day no raging and sweet early on, but irritable by late afternoon and then raging again. I did one of those no-nos. I thought maybe the bicillin was diminishing from her system, and I gave her a 500 mg amoxicillan with her omnicef during the raging. 30 minutes later, sweet girl was back. Raging over. Reading books (like she hasn't done in ages) and laughing. And smiling. I haven't seen a smile from her in AGES. Like I said, I know this is not the end-all, be-all, but I am so happy because I haven't seen her at all in weeks. If you have any thoughts, I'd love to hear them... As for now, I'm dancing into the shower. And I'm smiling, too! Link to comment Share on other sites More sharing options...
filinha1 Posted March 22, 2013 Report Share Posted March 22, 2013 Just wanted to let you know what was happening with my girl who has been raging every day almost constantly. Right now.....SHE'S NOT!!!!! I am sure that this will change as we've only just begun treatment, but any day around my house where my girl is actually SWEET again???? That day is a happy, dancing day!!! This is what happened. We came back from seeing the doc in North Texas a week ago. Raging was at a fever pitch. Doc switched her to omnicef from azithromycin...saw an almost immediate flare of OCD---raging continued. Every day. OCD flare only lasted that first day, and I tried to be consistent in giving her activated charcoal. Raging continued. Three days after we got back, I took all kids to the pedi to check for strep. One vomited a couple of times (the little one that we can't seem to clear), but other than that, symptoms were either mild or non-existent. All four were positive and received bicillin shots. By that afternoon/evening, she was not raging. Not yet sweet, but not raging. The next day, no raging, sweet. The next day, no raging, sweet. The next day no raging and sweet early on, but irritable by late afternoon and then raging again. I did one of those no-nos. I thought maybe the bicillin was diminishing from her system, and I gave her a 500 mg amoxicillan with her omnicef during the raging. 30 minutes later, sweet girl was back. Raging over. Reading books (like she hasn't done in ages) and laughing. And smiling. I haven't seen a smile from her in AGES. Like I said, I know this is not the end-all, be-all, but I am so happy because I haven't seen her at all in weeks. If you have any thoughts, I'd love to hear them... As for now, I'm dancing into the shower. And I'm smiling, too! Your post made ME smile..I love me some good news. Congratulations to you and your daughter! Link to comment Share on other sites More sharing options...
EAMom Posted March 22, 2013 Report Share Posted March 22, 2013 Just wanted to let you know what was happening with my girl who has been raging every day almost constantly. Right now.....SHE'S NOT!!!!! I am sure that this will change as we've only just begun treatment, but any day around my house where my girl is actually SWEET again???? That day is a happy, dancing day!!! This is what happened. We came back from seeing the doc in North Texas a week ago. Raging was at a fever pitch. Doc switched her to omnicef from azithromycin...saw an almost immediate flare of OCD---raging continued. Every day. OCD flare only lasted that first day, and I tried to be consistent in giving her activated charcoal. Raging continued. Three days after we got back, I took all kids to the pedi to check for strep. One vomited a couple of times (the little one that we can't seem to clear), but other than that, symptoms were either mild or non-existent. All four were positive and received bicillin shots. By that afternoon/evening, she was not raging. Not yet sweet, but not raging. The next day, no raging, sweet. The next day, no raging, sweet. The next day no raging and sweet early on, but irritable by late afternoon and then raging again. I did one of those no-nos. I thought maybe the bicillin was diminishing from her system, and I gave her a 500 mg amoxicillan with her omnicef during the raging. 30 minutes later, sweet girl was back. Raging over. Reading books (like she hasn't done in ages) and laughing. And smiling. I haven't seen a smile from her in AGES. Like I said, I know this is not the end-all, be-all, but I am so happy because I haven't seen her at all in weeks. If you have any thoughts, I'd love to hear them... As for now, I'm dancing into the shower. And I'm smiling, too! Yeah!! Make sure the siblings clear their strep and STAY clear. Link to comment Share on other sites More sharing options...
Pandasphilly Posted March 22, 2013 Report Share Posted March 22, 2013 Amazing news. Gives me hope also. Does your ped have a plan to administer Bicillin shots regularly? Or just one round? Link to comment Share on other sites More sharing options...
tu4four Posted March 22, 2013 Author Report Share Posted March 22, 2013 @eamom---absolutely to clearing this siblings! The dr didn't really want to recheck them, but we have to. Link to comment Share on other sites More sharing options...
tu4four Posted March 22, 2013 Author Report Share Posted March 22, 2013 @Pandasphilly--no, we don't have plans to continue the shots. Not really sure where we'll go from here, but we have an appt with a Lyme doc in early April. Link to comment Share on other sites More sharing options...
Mayzoo Posted March 22, 2013 Report Share Posted March 22, 2013 Awesome, glad to hear you are getting a well needed break. I hope this last for a very long time. Link to comment Share on other sites More sharing options...
tpotter Posted March 22, 2013 Report Share Posted March 22, 2013 @eamom---absolutely to clearing this siblings! The dr didn't really want to recheck them, but we have to. I would absolutely ask about doing those bicillin injections again if things get ragey again. Also, check for mycoplasma pneumonia. That, as well as bartonella, and babesia can cause the rages you're describing. Glad to hear you're also going to see an LLMD. Good luck. Link to comment Share on other sites More sharing options...
rowingmom Posted March 22, 2013 Report Share Posted March 22, 2013 I think your outcome with abx is a true indicator that you are dealing with infection-based psychiatric difficulties, the possibility of which will be denied by most mainstream doctors/psychologists. It's so good to get a glimpse of your real child, isn't it? It's what keeps most of us going. Symptoms will be up and down during her treatment as your doctor gets a handle on which infections you are dealing with, and which abx/supplements will best help her - so don't lose the faith/hope you have at this moment. You are on the road to making your daughter the very best she can be! Link to comment Share on other sites More sharing options...
Dedee Posted March 22, 2013 Report Share Posted March 22, 2013 I am so happy for you! Don't worry about the no-nos, we all do plenty of those while searching for that magic answer. Desperate times call for desperate measures. Most Mothers would cringe at some of the things I have done. You are definitely on the right track. Zithromax never helped my daughter much, but Biaxin and Augmentin did. If you are not planning on continuing with the injections you may want to think about switching the antibiotics. Since she reacted well to the bicillin, she would probally do well with Augmentin. Many PANDAS kids do. Unless you really are dealing with lyme or myco p in which case you will need to add in another antibiotic. So glad you are seeing an llmd. That will get you where you need to be with the infection. Great to hear your update. Thanks for sharing your good news. Have a great weekend with your sweet daughter. Dedee Link to comment Share on other sites More sharing options...
Hopeny Posted March 22, 2013 Report Share Posted March 22, 2013 Great news! Glad you are looking into Lyme/Bart too - bicillin shots are also used for Lyme Link to comment Share on other sites More sharing options...
tu4four Posted March 22, 2013 Author Report Share Posted March 22, 2013 Great news! Glad you are looking into Lyme/Bart too - bicillin shots are also used for Lyme I didn't know that! A happy accident! Link to comment Share on other sites More sharing options...
ptcgirl Posted March 22, 2013 Report Share Posted March 22, 2013 Great news! Love to hear something positive like that!!! Link to comment Share on other sites More sharing options...
sosudden Posted March 22, 2013 Report Share Posted March 22, 2013 Oh yay!!! Those glimpses are wonderful and what we are fighting for!!! Yay!!! Link to comment Share on other sites More sharing options...
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