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MaggiesMoons

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About MaggiesMoons

  • Rank
    Advanced Member

Profile Information

  • Gender
    Female
  • Location
    Florida
  • Interests
    PANS/PANDAS/PITANDS

Contact Methods

  • Yahoo
    maggiep3@ymail.com
  1. We also have United Healthcare.... Just got approved for IVIG, 3 rounds of it actually, to be given at 4 week intervals. Not sure if we will need to or should or will do all 3 rounds yet. We will decide that after we see how the 1st one goes. Just pulled up the Policy updates on PANDAS and IVIG with UHC and it they will be ending coverage effective 11/1/12 for PANDAS and IVIG. Since they have already approved us for 3 IVIG's at 4 week intervals I wonder what will happen after 11/1/12!? To do all 3 if we choose to will take us into the END of November. We will get the first one the last
  2. Just wanted to share an update.... Going forward with trying ti get the IVIG.....so far so good and sounds like United Healthcare will cover it so keeping my fingers crossed and praying! Hoping to be able to get it done in our State, but if we can't then I have a back up lining up to roll in and take over and get things done! Seeing immunologist to push it forward locally, AND met an amazing pediatric allergist who after hearing our ds9 history of PANS(since 7 1/2) pulled me aside and told me he knows people and would make sure he got the IVIG he needed if we keep hitting rod blocks l
  3. Will make a long story short and to the point: Ds now 9-- 2012 Pandas started at age 7 1/2 --Jan 2011 Diagnosed PANS October 2011 ABX started Dec 2011 and still ongoing at full strength of 500 mg daily Azithro. So ABX full strength for 8 months Can only seem to sustain 4- months no exacerbation if no exposures. Reacts to: Strep, strep in others, mono, and most recently noticed seasonal Allergies. Could be more, but this is the battle field thus far. While reaction to the illnesses has been minor PANDAS flares of 4-5 days or less then back down, this is due to him being on AB
  4. I have not read the article, but am going to! I have a question: What or why did you get the heart checked? Was it because of the RF or something else? Was it just the PANS DX? I am just wondering if it is warranted for all kiddos with PANS....? The only thing we have tested for in the heart arena was through bloodwork Dr M ordered on our initial visit and round of labs. Don't want to miss the boat, but don't want to do what is not necessary either. I am praying for you and your child, wish I had more to offer on this. Hang in there~
  5. Thank you for sharing that! I downloaded the articles.... after thinking we had this beat, it slowly came back. Only mild right now, but that tells me the ABX is not going to be the fix it all it once was.
  6. Dr T was the FIRST Dr we got to run ANY tests! And he was a GODSEND for us!!! I couldn't agree with you more on his thoroughness, curiosity to look deeper, and he genuinely cares about the child and the parents too! He is a very dedicated doctor! LOVE him! When your son started with this at 8 were his symptoms severe? Curious as to why he still has to battle this at 17....keep hearing that they can outgrow it around puberty. Also you have seem to have done all the treatments I read about on here. We are 1 yr into this, only 5 months into ABX treatment, so very interested in others journeys
  7. Where are you now in terms of how well your ds is doing? How are the symptoms? What did you see prior to testing that made you go further and look into Lyme? I am interested in your story of how and why you got to this point and discovered lyme! We are early on in treatment with ABX and I do not want to do IVIG etc if it is not going to hold or make a long term difference. You can answer here or pm me if you feel more comfortable, but I am very interested!
  8. My ds8 gets these "bumps" on his thigh area ONLY! PRE PANDAS It was dx as impetigo 2 yrs ago by our Ped, The bumos appeared after a strep infection that was treated with ABX, so the Ped gave us another round of ABX to clear the bumps. About 3 months later they came back again, another round of ABX. And again and again....tested positive for strep 3x with no symptoms present other than these bumps that are always in the same exact place. Again impetigo we are told and given an abx cream to use. This only temporarily cleared the bumps. And they continue to come back. Fast forward 2 yea
  9. Did the doctor order the test or did you have to ask them to order it? ds8 always seems to have a huge appetite all the time, maintaining current weight. Not sure if this is just growing or something else. Where he puts the food is beyond me! Wonder if there is a home test? I will do more research...
  10. I did read the post on OCD curing her! That is an awesome and hopeful story! That is what brought it to mind again about the TS. My ds8 does not swab positive (at least the past 6 months) and his tonsils are not swollen either. He did not have elevated titers 7 months ago when tested. And has been DX sero negative PANS. He does n ot make antibodies to strep! So nothing is going to show up in way of titers. If that is a requirement for the ts then we may be screwed. I will speak more to Dr M about this and see where we go. My ds has not been back to his regular Ped since we began with Dr T
  11. I am interested in knowing the outcome after a tonsillectomy. I have randomly read some pros and some cons, so I am trying to get a poll of all people here as to their first hand experience! I have three questions to ask of anyone who has had this done what happened post op-cure or no cure? 1. Did it help decrease or eliminate the PANDAS/PANS? 2. How severe were the symptoms prior to surgery? 3. Who recommended it be considered or done?
  12. Interesting, makes sense that at night it would be worse as they are active (parasites). How did they diagnose parasites? Other than itching what were the symptoms you noticed?
  13. Eileen, You said " If it was infection that triggered a downfall, maybe they need something to shut down the autoimmunity." My question is how? I am with you on the issue of ABX et all clearing things, only until the next infection triggered response. I personally feel that the autoimmune issue/response is where the real problem may be at. Now that is has been triggered, by whatever cause: strep, myco, etc., it seems to be in hyper drive in response to other viral or bacterial triggers. For me, this would be the million dollar answer if someone could figure our how to shut down th
  14. My ds 8 also has some itching and it seems to be more prevalent during and episode. His is mild, but I do notice it. He is PANS also, but no lyme and tested negative for that. So I think it may be an issue of histamine for us. Alot of these kids seems to have ups and downs with histamine levels. We had been high and low at different pints. High seemingly to be during an episode. Again his is mild, itching and episodes, but I think there is a definite link to episodes.
  15. I too would be interested in any information out there on how to heal the BBB and close it back to what it should be. That seems to be the key in some way to stop the reaction from happening in the first place! I have seen first hand how the Ibuprofen (we use Advil) makes a huge difference, and according to what I have read, the reason it does is because it decrease the BBB inflammation. I am also wondering about the IVIG and how it works long term down the road. My ds8 is now 1 year into it, 50 days ABX and going strong, starting a tapering off next week very slowly to see where we are
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