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About kleek3

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  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 memb
  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
  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
  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 t
  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
  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
  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 t
  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 hopeful
  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
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