cara615 Posted March 9, 2014 Report Share Posted March 9, 2014 So now this is the 2nd time since January that my non-pandas son has brought home strep. It went like this PANDAs ds had elevated tics for one day. The next morning his twin complained of a sore throat. When he got home from school his throat was still sore and it looked red so I took him in for a culture. Rapid strep was pos! We also did a 48hr culture on PANDAS ds and so far no call. I would be amazed if he got strep while in 150mgs of azithro. But I guess you never know. Anyway, ds's tics are elevated right now. Lots of ugh ugh grunting. Some spitting and I thought I saw an eye roll in there too. They put his brother on amoxicillan for 10 days. i wanted a stronger abx but they did not want to give it to me. So anyway we now have to battle through another flare. When will it end? So my question is: will PANDAS ds recover more quickly this time since its his brother that has the infection and not him? I remember him recovering pretty quickly in January after his brother was on abx for a couple of days. Back in Nov when HE was infected it took a month and a half to see real resolution of the tics. I sware to you these FREAKING tics!!!! I hate them with every single morsel of my soul. They are killing me. A slow and very painful death. Link to comment Share on other sites More sharing options...
qannie47 Posted March 9, 2014 Report Share Posted March 9, 2014 I would like to think that only exposure would result in a lesser/shorter flare....unfortunately, I have experienced big reactions from just exposure....I have found that treating my pandas ds immediately with full abx if he looks pandaish for more then 12 hours has helped a lot. His doctor would rather I wait a couple of days to see if it is a true flare, but I just don't take chances anymore. My thought is, the longer I wait to treat, the more inflammation sets in, the bigger/longer the flare... I am sorry you are where you are at with all this....believe me, I know how you feel..... Have you considered IVIG? I really suggest that, although this is not news to you...but wanted to throw that out there again. Link to comment Share on other sites More sharing options...
cara615 Posted March 10, 2014 Author Report Share Posted March 10, 2014 I pm'd you qannie. Thank you for reaching out. I will consider it for sure but when you read my pm you will understand the the things I need to do first and some of the obstacles we face. We just can't catch a break and his behavior is a little off too. Not much eye contact and was not interacting with his classmates at a birthday party today. He was more content playing by himself. Link to comment Share on other sites More sharing options...
Hopeny Posted March 10, 2014 Report Share Posted March 10, 2014 You may be better off running the titers. My peds told me very unlikely to swab + on abx, they recommended running titers . My dd's DNase went super high while on zith it took augmentin to get it normal. She also got a sinus infection and pneumonia on daily zith, different bugs respond to different abx. Link to comment Share on other sites More sharing options...
cara615 Posted March 10, 2014 Author Report Share Posted March 10, 2014 Don't you all think I should run more tests to see if he has any co-infections first before IVIG? What happens if we just aren't treating the infections properly? Maybe the azithro is not the right abx for him? I had him back to baseline practically on the 150mgs of azithro before his brother brought strep home. i do think he is responding to the abx but he just keeps getting assaulted by the darn strep! I will also test his immune system to see if he would benefit from IVIG. i will not rule anything out. I am just so scared right now. I gave him 150mgs of ibuprofen this morning to help at school. He has mainly one tic that he does often and its the "ugh" sound. Its almost like a throat clearing but not quite. He can still function in school so its not a crisis right now but I feel like I am going to die. Link to comment Share on other sites More sharing options...
Teri Posted March 10, 2014 Report Share Posted March 10, 2014 Hello friend, As I read your post I can't help but think that your son's dose is kind of low. How old is he ? My dd at 5 and 40lbs was on 250 mg daily for a while. I would definitely advise you to have labs run. My dd has never cultured positive but we had high ASO that took 2 years of combo abx to bring it down to normal. The other thing to keep in mind is once the immune system is triggered just about anything can trigger a flare. Since this journey began (2.5 years ago) we have had flares caused by new infections - strep, mycoplasma, Lyme, Co-infections, stomach bugs, losing teeth, allergies, and exposure to others who are sick. The fact that he is flaring because his brother has strep is pretty typical. Have you also checked other family members to see if they are strep carriers? I have had to be repeatedly treated as a strep carrier (4 mos. of abx + 2 mos. of combo abx). And yes he could get strep while on abx - I would ask for a stronger dose or a stronger abx! PANDAS stinks and you have to take one day at a time! Dd 7after 2.5 years is still battling. She is functional and does well in school. We are currently in a 4 month long flare - have not been able to identify why we cannot get the immune system to calm. She is on 3 daily Abxs and we are dosing Motrin round the clock. We still see tics, OCD, and behaviors but Motrin helps. Dr. Is focusing on reigning in allergies as a possible source to a continuing auto- immune response. Hang in there .... It's a long journey. Can you contact your son's Dr.? Do you see a specialist? You are not alone! Teri Link to comment Share on other sites More sharing options...
cara615 Posted March 10, 2014 Author Report Share Posted March 10, 2014 Hi Teri. Thank you, that was like a cyber hug my son is 6 and 37lbs. We have not seen a "real" pandas dr. yet and that is why his dose is so low. He was originally put on 75mgs back in Nov and I had to beg to pedi to increase to 150mgs. We saw improvement on the 150mgs until the strep infection from his brother. On the 19th we will be seeing our first real pandas dr. He understands the immune system and is well versed in testing for co-infections and looking at IVIG a possibility. I believe we are just not seeing the whole picture and need to test more. Allergies could also be an issue. We are in GA and they are starting already. Ds has had a runny nose for the past three days.... Link to comment Share on other sites More sharing options...
Teri Posted March 10, 2014 Report Share Posted March 10, 2014 It's a positive that your Ped. Is willing to treat! Our Ped. Was also very open and suspected PANDAS early on. She initially prescribed Azithromycin for dd 250 mg for 5 days and then 5 off for 30 days. As soon as she was off abx symptoms would come back. We continued to beg for her to renew abx which she did at the above dosage. We knew we needed to seek a more aggressive course of treatment after 6-8 weeks of the onset. Ped. sent us to a Neurologist and Psychiatrist to rule things out & confirm diagnosis - which we did. We contacted Dr.B in Connecticut and waited 3 months for our first appt. We are in Central NJ and travel to see Dr.B every 4-6 weeks. None of this journey is easy but we hold out hope that we can find healing for our Dd. Praying you find the same for your DS as well. Dose Motrin several times a day if it helps ..... And stay strong!! Link to comment Share on other sites More sharing options...
ibcdbwc Posted March 10, 2014 Report Share Posted March 10, 2014 So many factors. Our pandas/pans doc doubled our azith and added augmentin until further notice. He was doing well and is still on this regimen. Will also start digging into allergy component as well and this doctor does believe that you should try to treat underlying infection and allergy prior to IVIG but they all have different opinions. My son came home from school today, "mom- I have a sore throat..." I hate this too! Link to comment Share on other sites More sharing options...
qannie47 Posted March 11, 2014 Report Share Posted March 11, 2014 I get wanting to run all the tests before jumping to IVIG. I agree that it is important to have as much information as possible to evaluate just what exactly is going on. Also, I believe that all Pandas doctors agree that you should always use ABX as long as it works. Dr. K uses the same approach. However, it is his belief that eventually ABX stops working. That is when he turns to IVIG. That was our journey/experience and what led us to IVIG. Unless current belief has changed, IVIG is also considered a Big picture treatment. While it does provide for some an instant remission, IVIG does take up to a year or more to do it's "thing" in the way of maturing and resetting the immune system. It has been about 9 months since we did it. We did experience instant remission that lasted for almost 4 months. My ds did have one big flare month 4, but since then, he only had one flare and it hardly registered on my radar and lasted only 24 hours. That is what Dr. K has said to expect if all goes accordingly with IVIG. I think the t/a also lended itself in helping my ds. Link to comment Share on other sites More sharing options...
cara615 Posted March 11, 2014 Author Report Share Posted March 11, 2014 Wow that is really interesting. I wasn't aware that the abx eventually stop working. Ugh and I'm just trying to find the right one to get him back to baseline so we can take a break from abx this summer or at least go on prophylactic. Link to comment Share on other sites More sharing options...
cara615 Posted March 11, 2014 Author Report Share Posted March 11, 2014 Right now I'm treating the flare ( which seems to be getting worse each day) with Motrin. It's all I've got left in my bag of tricks. You think I can make it through till next Wed? ThT is when we see new pandas dr. Link to comment Share on other sites More sharing options...
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