kleek3

You are sooooo not alone! I constantly stalk the net, watch for any change in DS5, nit-pick every detail of this poor child's life. There aren't many moments in the day that PANDAS doesn't consume me. I shelter him from other children, I get angry when friends children are ill and the parents don't have them in a bubble - how dare you send your kid to school sick! I feel like this is a huge lesson in surrender for me. I'm certainly not there yet. I feel like I need to surrender to the dx. I cant change PANDAS. I don't have a cure for PANDAS. I need to do as some of the other members say and remember the good, remember what he is like when not in a flare. Prayer helps me, and I don't do that as well as before either. I feel your pain. You are not a Debbie downer...I hope only for the very best for you and yours! KK

I'm so sorry for the return of symptoms. You remind me to stay vigilant - even when you think things are calming down. I believe that if you had success once, you WILL get there again. Best of luck getting your hands on ABX that will help your son. All my very best to you and yours. KK

Thank you all for your posts. I will sleep with one eye open until my son is healed! I will dig into IgG levels and post this weekend for you flmom. We changed to the higher dose of Amox on Saturday. I'm excited to see if he wakes dry. This will be the 3rd night in a row if so. We have never had a consistent dry bed in 2 years. In hindsight, one of the first things we notice in a flare is the emptying of 3 bladders on a nightly basis when things are about to get real challenging. I will never doubt that Mom-sight ever again. He has been a bit exacerbated for days 1-4 with the med change, however last night seemed to a bit slower paced. Herx? Coincidence? I make notes and pray. Could this be a positive change? All my very best to this group! Thoughts and prayers for healthy babies for ALL of us. KK

Thank you so much for your posts. Question for you all...does anyone have a history on Dr. B? I'm wondering how long he has been treating PANDAS and how or why he chose this crazy journey? Simply curious. KK

Just wanted to share our experience when it comes to tics. We were told that the tics don't hurt our son and he doesn't know he is doing it, so don't focus on them. As a Mother, that was and still is a challenge for me. Tics were one of our first big symptoms. I watch ds5 daily and try not to put my attention where he doesn't need to be. Its more productive for me to point out positive behaviors vs. something he can't control. Welcome to the forum mpatti. All the best, kk

Evening fellow warriors, I will start by saying we have been battling for two years in April. We have certainly had our ups and downs with this journey. Our ds5 was dx by Dr. T in September of 12. This was after a semi battle with a ped that said tics were normal & a referral to a local Neurologist that said you are doing the right thing seeking out a PANDAS specialist. After a botched visit to Yale seeing Dr. L that I felt was more of an interrogation on my prenatal care and ds5 NICU treatment. With 12 other Doctors/students studying me instead of our son. A Tourettes Dx was given. After consulting the forum on my fears of "doctor shopping" I followed the lead of other people on this forum and sought a 3rd opinion in Dr. T. Since September 12 we have been on an unimaginable amount of abx to include - Augmentin, Cefdinir, Zithromax, a 30 day Steroid burst, Clendomyicin/Rifampin combo, Biaxin and I'm sure I'm missing something... The only med change that brought a somewhat positive change was Cefdinir/5 day steroid burst with the onset of an ear infection/croup. We noticed a subtle change, and there was a glimpse of hope. Then a viral shows up or strep is in the air and back to square one. With that being said, I in no way am bashing Dr. T or discounting the endless chats he tolerated with me as I was sobbing in Wegmans parking lot or him contacting me at 4am EST while I was in Scotland. This man believed in my gut feelings, and he believed in a hope that we would find a good place that my family would be able to function in. As the year passed on, I found it more challenging to contact Dr. T as well as getting a response as to what we were to do next. I will tell you we did 40K dollars worth of genetic testing, we have followed his lead from day one. I have poked and prodded my boy with needles and exams. I have fed him countless supplements for 7 months now. July - November 2013 we saw a change. We had our son back for a brief moment in time. Life was good. No one was being hurt physically on a daily basis, guards were somewhat let down. Then....virals kicked up at school, strep was floating around in our small private school. Daddy was ill and before we knew it we were in a full blown flare again. The choice to see Dr. B was an easy one. I needed yet another opinion as ds5 wasnt getting better and I couldn't get an answer from Dr. T. I will do my best to share what we learned this past Friday in hopes that someone somewhere can learn from our experience.... 1) IVIG is necessary. Ds5 has consistent low IgG levels to the point that Dr. B said this kid has no immune system. 2) A patient history from our drug store was one of the most shocking documents I have looked at. The amount of med changes ds5 has had is shocking. With NO significant changes. Lesson - pull your kids prescription history and trust your gut! 3) Labs - mycoplasma has ALWAYS been an issue for us. As it turns out, my husband has very high mycop levels since the first labs Dr. T ordered. A Z pack was called in for everyone in the house. Dr. B's opinion was that no z pack would ever kill off those numbers in my husband. He has had this since 10/12. Could he be reinfecting Ds5 without us even being aware of it? 4) Lyme - testing is in the works. Ds5 had a bulls eye that I thought was ring worm. Is it possible that Lyme & co infections are a part of our story? Lesson - in the beginning of our journey, a mom on this forum asked had we explored Lyme? Ah...yes... almost 2 years later. 5) When you know better you do better. We know more this week than last week. There is a plan to make a plan on March 6th when we return. I loved that Dr. B told Ds6 that he thinks we can help Ds5 and make life better for the family. So, we are on Amox/Clav 600/5ml 2xs daily - a much heavier dose than we have ever tried. I'm noticing a kick up in his PANDAS symptoms that I'm wondering tonight could this be a herex? I will continue to have faith, I will continue to stalk posts on a regular basis. I know PANDAS isn't going away tomorrow, tonight at least I have hope! KK

The suzie, I so needed to hear just exactly that statement this morning! Thank you for that information. Would you mind if I PM you to get dx codes and if I have any other questions? We are exactly there...desperation. I will tie a knot and hang on! Thank you again! KK

I will add that we are in the same boat. I'm not knocking what he has done for us, I'm simply agreeing with ophellia22. I'm in the process of making a change. Just not sure which way to turn at the moment. Good luck to you! Thoughts and prayers to you.

Good Morning, After 2+ weeks now the med change to Biaxin is not cutting it. I reached out to T again to see where we stand with the IVIG. His office says we are in the works. They are very busy and basically be patient. In the meantime, my DS5 has injured my girlfriends daughter, point blank making a very bad choice with absolutely NO sense of consequence to his behavior. His aggression towards others is a challenge to say the least. This boy is in a flare that I cant seem to help with the med change. Our last hope is the IVIG. With that being said, I asked our Ped to refer us to an infectious disease dr to do more testing for Lyme - just to be sure we have turned over EVERY stone. This Dr called her back and with some explaining to this new doc, his response was that he knew exactly who the specialist was in NJ and that he would not see our child. That he suggests referring him to another Neurologist at Strong in NY. I'm not sure if this doc was outright saying PANDAS isn't "real", but that was the impression I got from our Ped. I know that more information is better. However, how many Doctors do I need to bring this child to before we get some help for this boy? I know that many of you have seen numerous doctors. I guess I just feel frustrated with the treatment we are getting now. We have a scheduled appt. with Dr. B in April. In the meantime, do we wait and continue with a med that isn't working at all? I feel so frustrated and that his care is beyond my control this minute. I may just be venting, I know others have been thru the same and then some. I guess I just looking for some guidance. I need more communication, I need to have response to questions. I need open lines of communication and guidance. I am not a doctor. I love Dr. T. I'm not taking away from what and where he has gotten us. It's just not enough at this point and I'm feeling alone. What do we do? What next? Any suggestions from you other warriors would be greatly appreciated! KK

We live in NY State and I guess another question would be am I to contact BCBS to see about coverage or is the Ped? Also on t_annas thought - I don't believe we have ever completely cleared infections.

Good Morning! Update - After going over the labs DS5 still has high levels of Myco Plasma in his blood. We had a follow up with T and decided to switch him to Biaxin for 10 days to see if it calmed the flare. It has not. We also decided to move forward with the IVIG. Question for you all...We will have our GP administer the IVIG locally so that we can stay home while he is getting treatment. Our GP (Ped) will use our hospitals infusion center. Dr. T said that he will do the work up and that DS5's Ped will reach out to BCBS about covering the procedure on insurance vs. paying for it outright. Have any of you gone this route? I'm hoping to hear some of your experience and hope. There is a small part of me that says travel to NJ and have T do the procedure, the other side of me says put it in Ped hands bc it will happen in a much more timely manner. Thoughts please? KK

Dedee, Thank you for the response. I got his labs today and have finally reached Dr. T for an appt Wednesday. I have to be honest, I'm not a doctor - sometimes I get so overwhelmed with the amount of info it takes to attempt to solve this puzzle. I will ask him about the myco p and the igg igm piece still isn't clear either. I took a 5 month break because we were doing so well and I feel lost all over again. I have been reading about the Mycop being a co infection of Lyme. AIn the beginning of this journey we tested once and not again. I know this for sure. He is in a flare, my entire family is trying so hard to cope with the craziness Pandas has brought to our home. I have faith and believe we will find a better place not only for my son, for all of our children I will reply once I hear from T. KK

Hi All! Apologies in advance for neglecting the boards. It seems as if things were going well and I forgot where we started with this PANDAS dx. These boards got me through a year and here I am again with a similar screen name as before. (I can't seem to get Admin to reset my kleek3 username;). DS5 now has been in a 3 week flare now. We have doctored with T since Sept12. I love him! He is an amazing man, but I can seem to get a response to emails. I know how busy he is and I'm taking matters into my own hands this week. I reprinted his lab slip and had our local Ped re-order the sleu of regular labs Dr. T has written for us. My problem is that I'm not sure our Ped knows how to read them or what to do once we see her. I feel lost, I feel like I'm playing the doctor again - something that I'm certainly not. The MycoP has been something that we have never cleared on a lab slip. I have heard some of you ask in the past about Lyme. How do you know when to presue Lyme? DS5 had labs I believe Western Blot and it was negative a year ago. We did the genetic testing with Dr. T and have been giving heavy doses of LCarnitine, B-12, Iron and a multi vitimin (along with prophylactic abx). We have done very well until about a month ago when the tics, bed wetting and emotional liability has reared it's ugly head again. If we still have the MycoP, what is the next step? Any thoughts would be greatly appreciated. Kristin

Hi there, We just returned yesterday from Dr. T. We also had the Genetic testing done and the 4 hour drive seemed to be well worth it $300. This treatment is very pricy sometimes and I get that. We found the information from Courtagen confusing and hopefully once we begin the vitamin regimen that Dr. T is encouraging us to do, we will see change. We are optimistic. We will be giving our sons adult doses of Iron, B-12, Multivitamin and Carnitine. For whatever reason, on a cellular level, the boys are not getting what they need from a healthy diet. They need an extra boost and hopefully this is it. We have finally cleared Myco P and are switched to a MTX dose of ABX now. I will keep you posted on our journey. KK

Ladies, I thank you so much for your input. I too agree that becausr he has NEVER cleared a Myco P lab test there IS something else. Dr. T doesn't deny that there is something. We just can't figure out what that something is. It has been 12 days since the Clendo/ Rifampin combo and we notice little or no change at all. Its so discouraging. We did the genetic testing thru Dr. T checking the mitochondria. I believe this is to see if there is a genitic factor to the PANDAS. We tested both children. I think I need to push for a Lyme pannel. We are getting a new a/c, whole house air purifier and checking for mold. The ducts will be cleand AFTER so that the new air purifier can catch anything the duct cleaners don't get. We have been Doctoring with T since October. At this point, I believe he will move toward IVIg. I am tired. I'm sick of searching and don't want to watch him suffer in the same breath. I feel like a crazed mom in search for an answer and when each attempt results with the same issues and behaviors....it is frustrating to say the least. The throat clearing had disappeared for weeks. The last week he has been on a constant clear. It has to be exhausting for him. Bed time or nap time is a NIGHTMARE. He winds up like a top and then it's as if a tranquilizer dart hits him and he is out cold. I'm concerned our sitter is going to dump us because of his behaviors. She can handle most anything except the aggression/violence. Then I think about school restarting. We COMPLETELY notice the Viral side of this PANDAS. He is like a magnet for anything and everything. Thanks for the vent and I will keep you posted where we go from here. KK

Upon initial lab tests, we (all four of us) did have Myco P in our systems. Dr. T treated all of us with a round of Zith. Strep was our initial onset, however Myco P continues to be the monster we haven't been able to clear. Dx October 2012 - Now, we have never been completely clear of Myco P on DS5 lab work. After a series of med changes, a 30 day Steroid burts and now a Clendomyicin/Rifampin combo. We shall see what comes to us. Next we will explore the IVIG. Dr. T seems to think this is the avenue we need to go and has been exhausting every other option prior to. We have been in exaserbation for quite some time. Clearing the Myco is a challenge. Stay positive! Best of luck to you. KK I apologize, I saw the second post and replied to that. We have not tried the Bioxin as of yet:)

rowingmom, If bartonella is the Lyme lab test, we have done that twice and both times negative. We are on day 3 of Clendo/Rifampin combo and now major change as of yet. I would say he may be a little bit less "buggy" if you will. Maybe it was just the course of events yesterday. We shall see what today brings. Thanks for you words and thoughts. KK

So its been quite some time since I have last posted. We have continued the struggle with trying to find a remission if you will. Brief history, ds 5 was dx in October 2012 with PANDAS. We continue to see Dr. T. DS 4 has been on Zithromaz since October 2012. We have tried adding Cefdinir, we have tried a 30 day steroid burst. We have taken away yogurt and monitored our Gluten intake. We have never seen a "doing well for anything longer than 2 weeks in Feburary this year. Strep was the initial onset of the whole journey although Myco P is what the battle seems to be right now. After returning from seeing Dr T on the 01JUN13. We got home to DS6 having a 103.4 fever and a respiratory virus that he then passed to DS 5 (PANDAS). We added a Cefdinir again just to give the 10 days a shot bc it worked in Feburary. After that failed and I reached out to Dr. T saying whats next. Dr. T wrote him for the Clendomyicin/Rifampin combo. We spent the day with a close girlfriend of mine who 2 days later was dx Strep Positive on a rapid. DS5 was in a complete flare. Ah ha! I have directly seen it with my own two eyes now. I certainly know what "reacting" to a Strep is now. We started the Clendomyicin and today is day 7. After a COMPLETE meltdown yesterday and a crying phone call to Dr. T we started the Rifampin with the Clendo yesterday. I was going to ask him for an extension of the Clendomyicin bc after the initial exposure, DS5 was then exposed a second time WHILE on the CLendo to her second daughter and STILL continued to react. I wasn't sure do we extend Clendo for a total of 30 days or just start the Rifampin. We made the decison with the Doctor to begin the combo. Today will be day 2 of Clendo/Rifampin and my questions are these: 1) When, if on day 7 of this journey have you all seen a change with this combo or med? 2) Does anybody have a positive experience with this combo? 3) How do I give Probiotic with this combo? DS5 is STRUGGLING! He has become increasingly violent. When I returned from work last night I learned he cracked the neighbors kid, in the head, with a hockey stick. His tics are all still there. The emotional liability and impulse control seem to be the hardest to deal with. I find myself crying and sometimes unable to be around him because he is so challenging. That statement - right there breaks my heart. Please share if you have thoughts about our situation. Might I add, he has NEVER cleared the Myco P. Hiss Igg Igm continue to drop, the last appt with Dr. T, he said we dont need to panic...but we need to figure out the Myco P before he ends up in a bubble. With all that being said. Thoughts please... KK

The short lived phenomenal week....is now of the past:((( We noticed Wednesday some throat clearing as well as some behavioral issues. Thursday, it was back to square one. I went from floating to sulking. Now I'm wondering if it was the Steroids and NOT the Cefdinir? We have a follow up with Dr. T on Monday am. A couple of things that I'm thinking about now...he had sugar as well as some dyes in treats at school. I wonder if this could have added to the extreme swing from doing so well to where we are at now? The good news is that we have now seen an marked improvement. From what? We don't have that answer. But...it is possible. We know there is hope. Back to the drawing board. Have a good day all! KK

Update...Spoke to Dr. T's office today and scheduled a formal lab consult for the 18th. He suggested that since the Cefdinir is continuing to work. Refill the script at same strength we are on now. I'm thinking he will do 30 days and then move to a mtx dosage. We are into a full week of positive results with the med change. We are experiencing some PANDAS symptoms when DS4 is sleepy. The nap is still imperative to his continued health. Something to think about with the previous T&A and sinous chat. I had MY T&A at 26 due to chronic issues. After reading posts from all of you. I remembered my Doctor saying the pockets in my tonsils were like caverns. No wonder I had such an issue. Fast forward....now I'm really thinking that there is a possibility that DS4 could be experiencing the same. Maybe the Strep is lurking in the Tonsils? I will address this with Dr. T next week!

We have not done a T & A or Sinus MRI. We have a FANTASTIC PED that will write for whatever we ask. I will reach out to Dr. T in the am to see what the word is. This is the very first breakthrough since April of last year. We very much so believe that there is something lurking and we just haven't found it at this point. His Myco P was still up, I apologize I dont have labs in front of me. Dr. T suggested that the 4-5 week exacerbation was explainable with the labs. We will have a follow up soon and I am looking forward to hearing what he has to say. I sit here is amazement dealing with him right now. Even if it's only been a week. I haven't felt this happy in a year. I want to be with him, I want to see and hear what he has to say. Just for today....because ya never know what tomorrow brings. I am VERY aware what the new norm became and am praying that we can avoid going there any time soon. Chronic Croup, chronic stridor, tubes in ears, 8 wks pre mature, still wetting at night - we KNOW this is all medical. We know behaviors, tics the whole gamut is related. Slowly...we shall figure it out.

Thank you for your insight Beesknees! I'm wondering this am about the antibiotics that are chosen for each individual child. Does it make sense to say that when a child is in an exacerbation, the med that works at the time would be sensitive to a particular bacteria? Why is it that one med works or seems to work for a period, but a "remission" isn't accomplished? We have NEVER experienced an 80-90% recovery as of yet. Until this Cefdinir/Azith combo we have only experienced a band aid if you will to the situation. I will reach out to Dr. T this am to ask about dosing. Since we found something that works...how do we treat. Dr. T had suggested in his email that we may start to explore IVIG. If he is doing well, do we still consider IVIG? Always thinking...always more questions...Thanks again!

DS4 came down with Croup last Friday. Peids rx-ed steroids for 3 days. On Sunday with URI/Croup he spiked a fever. I knew it had gone into ears. Peids Sunday switched from Augmentin to Cefdinir. He has been on an Azith/Augmentin combo since October with NO change. We just went thru a month from ###### with sickness running thru our home. By Wednesday we had a different kid in our house. I would like to say that after almost a year....this is the first time that we have seen any significant change such as this. BELIEVE ME.....I am so aware of celebrating prematurely. However, the change has been so wanted, needed. endless prayers along with sleepless nights, today is a good day. My questions for all you warriors. Now that we have found something that works. Have any of your kids had success with this combo. Also, do I change his daily combo to Azith/Cefdinir? And at what dosage? He is on 1tsp daily 250mg/5ml. Any advice would be greatly appreciated. Thank you!!!

Ptcgirl, I had a topic locked once and the reason provided to me by Administration was this... when a topic is HOT, they choose to lock it because of the intensity of the posts. In order to provide us a safe place to vent, rant, ask questions, look for answers. It has to be done in a way that protects all names of Doctor as well as forum users. We are all looking for answers and very passionate about the safety and treatment of our children. Maybe, if you have a question in regard to a particular Doctor or Forum user, PM the user or start another thread asking people to PM you with responses. I hope that was hopeful. I was quite new when it happened to me and thought that I had bad forum etiquette:) Good luck and repost! This forum is a safe place for valuable information to be shared by people who have walked the walk. KK

Wow!!! Here I am searching the forum for Cefdinir and it's actually in my very own post. Hello friends! What a long January it has been for us. We have had Croup/Pneumonia, URI's and the Flu pass thru our house. The best part of this January was stumbling onto a Steroid Burst for 4 days as well as a med change from Augmentin to Cefdinir. We still continue to do the Azith 1xdaily. We have a new child in our home. The last five days I have sat and observed my old Mr. B. I can't tell you how grateful and how the tears well into my eyes when I speak of this. I am overjoyed and scared to death. First of all, we just had labs done 3 weeks ago and will be contacting Dr. T for the follow up with the results. He did say that DS4's labs explained the exacerbation and also said that we may want to really explore the IVIG for him. My brain hears the marathon...not the race. My brain hears change one thing at a time. My brain says try this med combo...see if we continue to have the positive results that we are experiencing in this house TODAY. I have heard about Clendomyicin and we are even willing to try that before the IVIG. What a change it is from my first posts almost a year ago with my DH thinking I was crazy, not supporting , and wort of all accusing me of Dr shopping for the answer I wanted. I Thank God regularly that we are on the same team now. That WE together see the change and know that this is a thing called PANDAS and it IS real. I don't know what I want or need to hear. Maybe it was just a vent. I thank you all for being here... KK