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Everything posted by bgbarnes

  1. Hello everyone! I know it has been a long time since I have been on the board- things have been well and manageable at it's worst. My Pandas DS9 is doing well and has some residual touchy OCD but is so so so so so much better. The latest labs show his Anti DNase B is in NORMAL range, ASO elevated but lower than the last test however the mycoplasma is up to 600 which is a big increase from the last labs over a year ago so he is back on 500mg zith and I can see improvements in behavior, temperament etc.... I still struggle with whether I should keep him on antibiotics or not all the time.. The
  2. Hi everyone- Yes he is responding like a normal little boy with strep- NO PANDAS symptoms!!!! He was not on antibiotic when he got strep- I had taken him off of it a couple months ago. The alternatives we use are- my Dad purchased and uses a Wavemaker. http://www.greatlifetechnologies.com/wm.shtml and the other one is Theta healing with Marina Rose http://www.dnathetahealing.com/. After the last healing with Marina we stopped the antibiotics- she is AMAZING!!! He also takes Krill oil, Calmzyme(Transformation brand),Vitamin D and different things when my gut tells me to add something. So I
  3. I have to share some good news...my PANDAS son has strep....that sentence may sound strange to all of you because it has always put the fear of God into me...however here is the good news. He is acting NORMAL. I told the Dr his stomach ache was not from strep because I "KNOW" when he has it due to PANDAS. His symptoms were really the exorcist syndrome, cognitive inflexibility and OCD. So it was pretty obvious when he was ramping up. We were both shocked when it came back positive because he is acting NORMAL!!! It means everything we have done is WORKING!!! We did 11 months of a double dose of
  4. Thanks everyone! I do think about the board often and hope and pray that each and every child will have a full recovery. I know that it is here when I need it!! I also know one of the ways to beat PANDAS is to go live and not let it beat you down. I feel like every day we LIVE and breathe is a day we won. May each and everyone of us have a Victory today, tomorrow and always! Brandy
  5. I know I have not been around lately, it is because we have been living our lives. DS8 is doing REALLY REALLY well, I would guess about 90%. We found out about PANDAS MARCH 29,2010 when a Dr suggested we look into it and it started an accelerated research plan by my family. He has basically been on antibiotics ever since and has had 2 HD IVIG. The results are unbelievable, my parents keep commenting how nice it is to have my sweet son back. He is still ornery and picks on his sister but he is so loving, cuddly and rational. His main symptoms were the rages, cognitive inflexablilty, sleep d
  6. We just finished our second round of IVIG with Dr R yesterday and to my understnading the Prednisone and the IVIG have nothing to do with one another- so don't worry about interference. The IVIG is putting new antibodies in the the system for a long term result, the Prednisone is more about dealing with the right NOW and either shrinking inflammation or dealing with more immediate symptoms. We did the neurotransmitter test too- boy everything was out of whack for my son.....really helped put the full picture together for us. Is Dr. Infante doing the 1.5 over 2 days? IS he using Gammanex? Dr
  7. We found out about PANDAS March 29, 2010....RAGES were his biggest issues- He had had transient tics in his life but not at the time of this exacerbation. I did not think he had any OCD- I thought we ONLY had the rages....the more I learned the more I was wrong. I learned that the cognitive inflexibility, the repeating himself, the being stuck was all OCD. Then I noticed he had a "touchy" thing that he had to touch things evenly or in a pattern- my heart sunk- I had been very very very naive that we did not have any of these things. Through these boards I also learned about sensory process
  8. I have not been on the board in a while- life got in the way but I have to disagree with those that say don't do the test- unless it is a serious financial strain on you. From what I have seen if you can't get help locally eventually you WILL travel to an expert to get treatment. You don't want to have to wait for those test results once you have made the decision to do that- you will have wasted months. Part of our job as parents of these kids is to pave the way for the families that follow us, the original parents who had none of the resources that we do, have done that for us and it is
  9. I know I have been MIA with the new job, school starting etc... but I wanted to get back and update how ds8 is doing 8 weeks tomorrow post IVIG. FANTASTIC!!!! :D A couple of weeks a go we had an episode of Cognitive inflexibility- it was once we got through it- it was middle of the range not the worst but not the easiest. Yes his eyes were dilated, it was a Friday after the first week at school- at a new school (and I held him back because he missed SOOOOO much school last year- so stress was at at it's height.)The teacher had had issues with him that day at school- wanted suggestions fo
  10. My ds8 is 72 lbs and we are on 500 zith we started out on 250 and it was not doing the job- when we upped to 500 we saw a big difference. We have been on it for about 3 months now- going to the Dr on Wed to see what we do next -we are 8 weeks out from IVIG. Hope that helps! Brandy
  11. I am shocked...thanks for updating! Looks like you can teach old dogs new tricks!
  12. My ds has a spot of vitiligo on his back and it is an autoimmune issue. It popped up a few years ago and don't have any idea how it corresponded with PANDAS. HOWEVER when talking to our Doctor we were able to identify that he already had an autoimmune marker- which seems to help the PANDAS discussion. My dad has it but both of my parents have 2 autoimmune diseases each...so he got the genetic lottery! LOL!
  13. We are definitely NOT getting any flu shots!!! Thanks for the heads up about the combined shots! Brandy
  14. I don't know any Doctors in Charlotte- but I do have a Sorority sister who is a Dr in Sparta that has treated PANDAS patients before(found out on Facebook when I was posting about the Pepsi contest). Let me know if you want her information. I don't know how involved she is but she is aware, believes and is a wonderful woman. good Luck- keep fighting and trust your Mommy Gut! Brandy
  15. We did not have a fever right after but during the first 2 weeks there have been a couple days when he was running slightly hot- 99.0 and he normally runs 97.0- it did not seem to really affect him but it went away quickly. Brandy
  16. Wonderful post! I am optimistic too!!!! Brandy
  17. Did you give him tylenol? Did you Dr give you steroids? just a couple to get though the headache? If so then move to the steroids- that is what they are for- keep the fluids going....Keep us posted! Brandy
  18. We had our IVIG 2 1/2 weeks ago- so really pretty recently!
  19. I think we all need to go knock on his door- what an A$$!!!!! I have seriously thought about calling him.... I have been so fortunate because ALL of the Doctors I have seen believe it exists!! I can't imagine dealing with Dr's that don't believe you on top of the horrible things we deal with with PANDAS....I think we should all drop our kids off at his house when they are in exacerbation and see what he thinks then! Give them a strep test and have them watch them get better on abx and steroids..... He should see the difference in my ds! AAAAUUUGGGGGHHHH! Brandy
  20. My son has been at camp for the past 2 weeks and normally I get calls all the time about his behavior...We had to talk to the Director this morning for my...DAUGHTER(who is my big rule follower so that was weird) but my hubby asked how ds was doing- we both were shocked when she said- he's doing great- I have only had to talk to him a couple of times and then he straightens up....OK that is not my ds normal mode- I did not think immediate response was in his genetic cod e....then tonight I asked him to go take a shower....he was playing his ds...and he went right into his room finished play
  21. I know when I was in the midst of a bad spell with my son it was the positive posts that gave me hope- he really is doing so much better- once again- NO touchy at ALL today- at least that I saw- he also seemed a lot calmer. oh another thing today he was looking at something and said what is 3x3x3 I said you can figure that out what is 3x3 the next thing you know he said Oh 27---the math is coming back!!
  22. I have been MIA lately- I started a new job the day before we did IVIG for my son and have been SUPER busy. So far so good! We have had some flare ups- you can tell it is from turning back the pages- but they did not last long. He seems able to pull himself out of it faster than before. He had an episode of cognitive inflexibility the other night and was able to tell me "if he did not play the video game by himself before midnight he would go crazy, he went crazy in the past if he did not do what he said he was going to do"...shedding so much light on past meltdowns before we realized the O
  23. My understanding is that Mycoplasma can cause a positive 41.
  24. We are 10 days post IVIG too and we have seen turning back of pages- not as bad as what you have seen- I was planning on posting our update tomorrow- I started a new job last week too so i have been really BUSY!! It has been in spurts seeing things we have not seen in a while- the repeating of things ....that had stopped once we got on the abx. It definitely does not even touch our worst times- it is just bringing stuff up from time to time not every day and the duration is not as long as it could be. We have seen some interesting progress in ability to communicate what is going on too.I will
  25. If I had a dollar for every time I had to tell my son to stop yelling I would be VERY VERY VERY wealthy . I think with him it is more than a "boy" thing b/c it varies and is definitely louder at different times. Brandy
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