Fixit Posted December 22, 2010 Report Share Posted December 22, 2010 3-4 weeks ago ds8 not the the one i write about...had strep 3-4 weeks ago...ds flared...started back azith and have actually raised it...he is doing well....we are doing other thing in combo.... however...ds8 got sick last friday moring threw up just a little..ever since he has been congested...a bit run down... tuesday night he just wanted to go to bed evn though friends around....last night i think i notice a tic!!!!!!!! its the pursing lips...kissy face thing.....well it is here today stronger... i just got back from docs...he is pandas friendly but not advanced...qucik swab neg...glads swollen.everything else slightly congested....he did give me abx for amox...asked me not to fill it...said it could be congestion...but i am sitting here watching him....even if its not strep..now..it could be from the other infection and now if he has a virus it just pushed him over ...right!!!!! i should go get it filled right!!!!!....i just called to see if he would switch it to aug or azith..... but get it filled regardless right....it might help right!!!!! this was the one that i thought was ok......please keep me in your thoughts please!!! Link to comment Share on other sites More sharing options...
tpotter Posted December 22, 2010 Report Share Posted December 22, 2010 Personally, I would fill it for 2 reasons: DS1 and DS2. In other words, to protect your DS with known PANDAS, and to arrest any possible PANDAS symptoms for DS #2. Link to comment Share on other sites More sharing options...
Fixit Posted December 22, 2010 Author Report Share Posted December 22, 2010 (edited) Do you think amox is good enough....in past ds1 has responded well to it and would go into remission...maybe if it is mild amox will be enough and we are catching it early?!?!?! thanks for responding.... i feel like getting in my car with all 3 boys and waiting outside of doc l or b or swedo's or who ever will treat a 3 pack ps thanks for the reply Edited December 22, 2010 by Fixit Link to comment Share on other sites More sharing options...
thereishope Posted December 22, 2010 Report Share Posted December 22, 2010 I'd fill it, no question. And, yes, amox works for some kids. But keep in mind that you may not see a miracle happen overnight. I started to see signs of improvement between day 3-5. It was still a slow process of healing. Link to comment Share on other sites More sharing options...
Fixit Posted December 22, 2010 Author Report Share Posted December 22, 2010 I'd fill it, no question. And, yes, amox works for some kids. But keep in mind that you may not see a miracle happen overnight. I started to see signs of improvement between day 3-5. It was still a slow process of healing. i know..i hate that part....i hope he follows his brothers prior responses.... talked to nurse...doc did not want to change abx...just got back from dropping it off..... i need to get this doc to talk to doc l or b ...this doc is open minded but also veeerrryyyy cautious...but i am lucky to have him at this piont...compared to the other eye rolling docs i've had to deal with thanks for the quick replies....i;m very upset...but tryng to be strong we have so much more info and AMO compared to the prior years of struggling...I PRAY I DO BETTER!!!! Link to comment Share on other sites More sharing options...
trggirl Posted December 23, 2010 Report Share Posted December 23, 2010 I'm so sorry. We are going through a possible strep episode ourselves. I will pray for you and your kids. Link to comment Share on other sites More sharing options...
Joan Pandas Mom Posted December 23, 2010 Report Share Posted December 23, 2010 We are thinking and praying for you here too. I would fill it. Amox helped with my son with his 1st exacerbation in 2004. I hope this passes fast for you. Link to comment Share on other sites More sharing options...
3boysmom Posted December 23, 2010 Report Share Posted December 23, 2010 3-4 weeks ago ds8 not the the one i write about...had strep 3-4 weeks ago...ds flared...started back azith and have actually raised it...he is doing well....we are doing other thing in combo.... however...ds8 got sick last friday moring threw up just a little..ever since he has been congested...a bit run down... tuesday night he just wanted to go to bed evn though friends around....last night i think i notice a tic!!!!!!!! its the pursing lips...kissy face thing.....well it is here today stronger... i just got back from docs...he is pandas friendly but not advanced...qucik swab neg...glads swollen.everything else slightly congested....he did give me abx for amox...asked me not to fill it...said it could be congestion...but i am sitting here watching him....even if its not strep..now..it could be from the other infection and now if he has a virus it just pushed him over ...right!!!!! i should go get it filled right!!!!!....i just called to see if he would switch it to aug or azith..... but get it filled regardless right....it might help right!!!!! this was the one that i thought was ok......please keep me in your thoughts please!!! Link to comment Share on other sites More sharing options...
3boysmom Posted December 23, 2010 Report Share Posted December 23, 2010 Dear Fixit, I know just how you feel. I am not a newbie at this either, but find myself in the same shoes. I have been posting the list of things that Dr.L asked us to take care of after our visit a few months ago. She informed us of the high sibling rate (I had never thought that the tics that the brother had and the strange night terrors that the other brother had were in any way connected to this), to test/treat the dog, titers on the 5 of us, Cunninghams test on the 3 boys, steroids on the PANDAS son, and T & A surgery for the 2 brothers, and culture the tonsils. Slowly we have been doing these things one at a time...always negative rapid and 72 hour strep tests: tonsils on the non PANDAS sons cultured positive for strep, titers on the 2 non PANDAS sons: 500s and almost 800, Cunningham test just came in very high on the the 2 non PANDAS sons and consistent for PANDAS and SC for the diagnosed son. Our first son had overnight PANDAS on Dec. 11th and we were in Dallas at my husband's company Christmas party. This year's party fell on the same weekend and on the same date, Dec. 11th. I did not want to go as I was already suspecting that I was suffering from Post Traumatic Stress with the anniversary of this illness. On the way to the Christmas party, on Dec. 11th, is when we got the other 2 boys results in (via email on iphone). Felt like "Groundhog's Day" That night I woke up throughout the night with this hyperventilating type breathing, I began pacing and shaking and then threw up. Tried to get a call back from Dr. L and then called Dr. B. I could not talk when the sweet lady answered the phone. I blabbered out that I think that all three of our sons have this &$%!@ illness and she could barley catch what I was saying. A few hours later and Dr. B. actually called me (I think he could have been on his car phone)...and we were not even his patients! He said to convince our pediatrician to put the other 2 brothers on Augmentin ASAP and to get an appointment with him as soon as we could. He said that they were probably PANDAS also! And, the PANDAS son may need the IVIG, which is also what Dr. L said. We have an appointment to see him in 4 weeks, our pediatrician agreed to put them on augmentin, (but our pharmacy only does generic (Amox) when in liquid form) until we fly to CT. All this to say...I would fill the prescription. I will keep your family in my prayers and let you know what the game plan is that Dr. B. will propose for the 2 brothers that are probably PANDAS. THAT WAS HARD TO TYPE for the first time! Please pray for us as well. The boys are 8, 9, and 10. Thanks, Linda Needless to say, I went to the doctor and he said that what I had that night was a panic attack! He gave me a prescription for Lexapro and Zanax. I have not filled them yet, not sure what the Lexapro will do for me, as I want to be clear headed for any decisions that need to be made. Link to comment Share on other sites More sharing options...
Ozimum Posted December 23, 2010 Report Share Posted December 23, 2010 (edited) Fixit, I'm a relative newbie to this forum but I wanted to say how much I feel for you. Stay strong, you can get through this. Take care of you too. 3boysmum, Oh gosh... I've had those panic attacks when I felt completely overwhelmed and things seemed just so wildly out of control. I was given a script for antidepressants but decided to go a more natural path through a GP who is a homeopath - just felt that was a better option for me. I figured I was stressed out of my tiny brain and I wouldn't have been but for all the traumatic stuff with my son. (Someone suggested I had Post Traumatic Stress Disorder...just without the Post!) And I feel much better, especially now I have someone I have confidence in helping my son. You know you are on the right path. Edited December 23, 2010 by Ozimum Link to comment Share on other sites More sharing options...
JAG10 Posted December 23, 2010 Report Share Posted December 23, 2010 Linda, Are you flying all 4 of you to CT from Dallas? That is going to be some hefty traveling bills. Here is praying your other two boys can be managed through abx and hopefully, only the one needs IVIG. The whole sibling thing can be very confusing and just take your breath away! We have a definite PANDAS dd11 who is progressing well and preparing for a 2nd IVIG and a younger dd7 who has the high titers and much milder, but still there, symptoms. Our younger one has some urinary issues, anxiety, and a lip-licking tic when she gets sick...and some immaturity at times too. Of course, I am so much more aware and treat her with abx, so she is way ahead of where her sister was at the same age...and honestly an innately milder case. As much as we PA folks gripe about CHOP, we are fortunate to be on the east coast and have a few options in driving distance. We did the travel thing to Chicago last May for IVIG and while I LOVE Dr. K and honestly believe he is a genuine hero in the history of these kids, the treatment center where he performs IVIG is shady on the billing end (I actually paid in full up front and after 7 months of trying to get reimbursed the $$ my insurance company paid to them with NO success, called our insurer and told them to rescind the payment!!!) So we are now traveling to CT as well, but it is only a 3 hour drive and I'm crossing my fingers for Christmas Dr. B's billing office calls and says they obtained pre-cert from our insurer, that's really all I want, but I don't think Santa's elves can make Gamunex! You and Fixit and all you moms are in my prayers. Stay strong and keep up the good fight! JAG Link to comment Share on other sites More sharing options...
3boysmom Posted December 23, 2010 Report Share Posted December 23, 2010 Linda, Are you flying all 4 of you to CT from Dallas? That is going to be some hefty traveling bills. Here is praying your other two boys can be managed through abx and hopefully, only the one needs IVIG. The whole sibling thing can be very confusing and just take your breath away! We have a definite PANDAS dd11 who is progressing well and preparing for a 2nd IVIG and a younger dd7 who has the high titers and much milder, but still there, symptoms. Our younger one has some urinary issues, anxiety, and a lip-licking tic when she gets sick...and some immaturity at times too. Of course, I am so much more aware and treat her with abx, so she is way ahead of where her sister was at the same age...and honestly an innately milder case. As much as we PA folks gripe about CHOP, we are fortunate to be on the east coast and have a few options in driving distance. We did the travel thing to Chicago last May for IVIG and while I LOVE Dr. K and honestly believe he is a genuine hero in the history of these kids, the treatment center where he performs IVIG is shady on the billing end (I actually paid in full up front and after 7 months of trying to get reimbursed the $$ my insurance company paid to them with NO success, called our insurer and told them to rescind the payment!!!) So we are now traveling to CT as well, but it is only a 3 hour drive and I'm crossing my fingers for Christmas Dr. B's billing office calls and says they obtained pre-cert from our insurer, that's really all I want, but I don't think Santa's elves can make Gamunex! You and Fixit and all you moms are in my prayers. Stay strong and keep up the good fight! JAG Thank you for the prayers. We are actually flying the 5 of us from Houston. We live in the Houston area. (Dallas is where we went for the Christmas party.) Yes, it is expensive! Link to comment Share on other sites More sharing options...
Fixit Posted December 23, 2010 Author Report Share Posted December 23, 2010 Thanks to all for the positive prayers and thoughts.... ds8 is already doing better...first dose last night and one this morning...i hope he will be even be more resiliant than his older brother and not have to repeat this.... i too am making calls today to take all 3 to doc b and probably one of the dans we use .....it will have to be a flight...as my energy is gone and 3boys....i am in the same boat...and when you said I will keep your family in my prayers and let you know what the game plan is that Dr. B. will propose for the 2 brothers that are probably PANDAS. THAT WAS HARD TO TYPE for the first time! Yes it is..i am having a hard time with it...though i know it...if i don't say it out loud, they will not have this!!! i will definitely keep you in my prayers...i try to do special individual prayers when people ask...but i also do a general.."for all panda kids and parents prayer"... ps i am open to positive energy..good thoughts...spinning in a circle three times...or what ever else you can send my way....thanks all!!!!! Link to comment Share on other sites More sharing options...
Stephanie2 Posted December 23, 2010 Report Share Posted December 23, 2010 Oh fixit I'm so sorry. Please be aggressive with him b/c you have not experienced the full-blown OCD/exorcist of pandas and I hope that you never do, especially if you have 3 boys. You have a chance now for it to never get to that point in your 8 year old. I say, drop a bomb, but take cover (diflucan, etc.)... Keep me updated... Link to comment Share on other sites More sharing options...
Stephanie2 Posted December 23, 2010 Report Share Posted December 23, 2010 If it makes you feel any better, here is a positive about having multiple pandas kids. One can be the canary in the coal mine for the other. In other words, one gets a mild tic or has some sudden onset OCD and you can get on top of both kids before the other exacerbates. The only thing is it takes time to get to that level of swift expertise! As long as I have been at this, I have yet to intercede in time to catch the second boy in time, but I am getting there. Next strep infection I'm gonna do it!! Link to comment Share on other sites More sharing options...
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