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kleek3

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About kleek3

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    New York
  1. 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
  2. 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
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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.
  9. 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
  10. 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.
  11. 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
  12. 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
  13. 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
  14. 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
  15. 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
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