Fixit Posted April 6, 2010 Report Share Posted April 6, 2010 It was 1 year ago today that Ds woke up ticcing!!!! And the tears wont stop!!!! He's still asleep...very unusual...i keep telling him he's turning into a teenager (10) I thought when we found Myco p we had it....clarith did mininal at best....we were on that for about 30 days But when we added the aug w/i 24 hours, things seemed better and w/i a week it was like heaven...and then a day or 2 later the hives and muscle pain started we tried a 5 day z pack after 3 days of being of aug........eh.... we are taking him off all abx...... let his system rest...... with the aug it was right there at our finger tips.... i feel so cheated!!!!!!!!!! Link to comment Share on other sites More sharing options...
bubbasmom Posted April 6, 2010 Report Share Posted April 6, 2010 Prayer might be the only thing that gets any of these kids through this! My pharamcist told me about a book, after I'm there every week for 8 months, called I thnk "Against Medical Advisement". It's about a young man who, after 12 years of taking all of these medicines including some my son is on, like Risperidal, was basically acting 'crazy'. When he got old enough he refused ALL medicines, and he actually was fine from then on. So I think the taking a break is good for them, if they can tolerate it. Risperidal has been our wonder drug. But it is very harsh. Caused my son to gain 40 pounds in 90 days. As soon as he goes off, he drops 15-20 pounds without even trying! Praying for your son!! Link to comment Share on other sites More sharing options...
thereishope Posted April 6, 2010 Report Share Posted April 6, 2010 Fixit, stay strong! Remind me, are you working with one of the PANDAS experts? The book is "Against Medical Advice" by James Patterson. Link to comment Share on other sites More sharing options...
MMC Posted April 6, 2010 Report Share Posted April 6, 2010 It was about a year ago for our son as well. End of last March...started ticcing after strep throat 2 weeks prior. We knew what it was and were devastated. Just said a prayer for your son, that our Lord Jesus would provide healing to your child as only He can do. And provide guidance for the best treatment options and comfort for you in this difficult time of life. Link to comment Share on other sites More sharing options...
Joan Pandas Mom Posted April 6, 2010 Report Share Posted April 6, 2010 He will persevere. Please believe that. Back in October, things were really, really bad for us. My son couldn't get off the couch. He is doing much better, back to school, playing the sports he loves. We will be praying for you and your family. Please remember and hold onto daily that your son will get better. God Bless. Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted April 6, 2010 Report Share Posted April 6, 2010 It was about a year ago for our son as well. End of last March...started ticcing after strep throat 2 weeks prior. We knew what it was and were devastated. Just said a prayer for your son, that our Lord Jesus would provide healing to your child as only He can do. And provide guidance for the best treatment options and comfort for you in this difficult time of life. Is it just eerie coincidence that so many of our kids became "struck" about one year ago this time?!?! Our DS13 too! Was there some "hidden pandemic" that hit all of them?!?! Hang on, Fixit! There's an answer out there for everybody, I truly believe, but some are tougher to find than others. Keep reaching out, describing what you're going through, and SOMEBODY here is going to have had a similar experience and a workable suggestion, I just know it! ***BIG HUG!!**** Link to comment Share on other sites More sharing options...
thereishope Posted April 6, 2010 Report Share Posted April 6, 2010 This is the prayer I said every night when my son was sick.... The Memorare Remember, O most gracious Virgin Mary, that never was it known that anyone who fled to thy protection, implored thy help, or sought thine intercession was left unaided. Inspired by this confidence, I fly unto thee, O Virgin of virgins, my mother; to thee do I come, before thee I stand, sinful and sorrowful. O Mother of the Word Incarnate, despise not my petitions, but in thy mercy hear and answer me. Amen. I continue to pray for my family's health and happiness every night. Link to comment Share on other sites More sharing options...
Alex Posted April 6, 2010 Report Share Posted April 6, 2010 It was 1 year ago today that Ds woke up ticcing!!!!And the tears wont stop!!!! He's still asleep...very unusual...i keep telling him he's turning into a teenager (10) I thought when we found Myco p we had it....clarith did mininal at best....we were on that for about 30 days But when we added the aug w/i 24 hours, things seemed better and w/i a week it was like heaven...and then a day or 2 later the hives and muscle pain started we tried a 5 day z pack after 3 days of being of aug........eh.... we are taking him off all abx...... let his system rest...... with the aug it was right there at our finger tips.... i feel so cheated!!!!!!!!!! So sorry for what your daughter is going through. What are your thoughts at this point on IVIG? Have you corresponded with Dr. K? Alex Link to comment Share on other sites More sharing options...
Fixit Posted April 6, 2010 Author Report Share Posted April 6, 2010 Thanks everyone...i need the boost of you guys.... i'm trying to hold on... Vickie i keep that prayer lamenated, in my back pocket ,,,not kidding and a rosary in the front...i've stopped praying...i'm so tired...i just keep them on my body and sometimes hold them.. A lovely friend of the family gave it to me...she was like a direct line to heaven...she and my parents are up there now....i just wish i could talk to them.. anyway... the zpack was 500mg day 1 and 250 the next four I started looking into ivig more seriously last night..that's how i found the link i posted last night if he were as mild as he was those couple of days on aug i wouln't bother...but it is constant and pretty severe i've done the gamet of things prior to now ,gfcf, exercies, tmj,..as i could get a doc to give me abx.. doc k wanted to go right to ivig...but he went mia once i got my labs and doc t stepped up so we did the clarith, burst,....added aug....stopped aug....waited, did zpack.... i going to get igenex test...he said easten blot(version?)....LYMEMOM...what do you think.... we did western via quest(neg)....but maybe i need a better test and then restart some abx i see bubbbasmom is having a bad time?????? i emailed doc t last night and mentioned i am becoming more interested in ivig...... of course doc k is ready...and he has the most experience what about doc B in Ct..he is also an immulnoligist??/ anyone have thoughts on next abx? if i go ivig..doc k or doc b... does doc k let you do it in your own area or do you have to go there???.. i guess i could make a trip out of it. i want to do it in june so he has the summer to recoop... Link to comment Share on other sites More sharing options...
thereishope Posted April 6, 2010 Report Share Posted April 6, 2010 Fixit...you can always talk to them. They are watching over you and your son. I had times when my son was bad up and I'd just sit on the edge of my bed rocking back and forth crying like a baby. I had many coversations with my parents (who are up in heaven with yours) while I sat there crying and hyperventilating. There were times I would get this moment of calm and just sense a presence there. Vickie i keep that prayer lamenated, in my back pocket ,,,not kidding and a rosary in the front...i've stopped praying...i'm so tired...i just keep them on my body and sometimes hold them..A lovely friend of the family gave it to me...she was like a direct line to heaven...she and my parents are up there now....i just wish i could talk to them.. Link to comment Share on other sites More sharing options...
jayjay Posted April 6, 2010 Report Share Posted April 6, 2010 It was 1 year ago today that Ds woke up ticcing!!!!And the tears wont stop!!!! He's still asleep...very unusual...i keep telling him he's turning into a teenager (10) I thought when we found Myco p we had it....clarith did mininal at best....we were on that for about 30 days But when we added the aug w/i 24 hours, things seemed better and w/i a week it was like heaven...and then a day or 2 later the hives and muscle pain started we tried a 5 day z pack after 3 days of being of aug........eh.... we are taking him off all abx...... let his system rest...... with the aug it was right there at our finger tips.... i feel so cheated!!!!!!!!!! I will pray for your son as I pray for mine and all the other children that suffer from this horrible disorder. It was a year ago that my ds9 was admitted into the psych ward. It has been a roller coaster ride since then. He started another exacerbation two weeks ago. He was unable to go to school. He is now on azith., aug. zoloft and another 21 day steroid burst. Last week I was asking myself "how much medicine can one little boy take? Maybe we should just stop everything" To top things off, I came down with shingles just to proove how stressful the last two weeks have been. He woke up this morning the "real" boy I know. Happy, eager to finish his homework and get to school. So glad I didn't stop the meds! We are waiting for insurance approval for IVIG. I just want you to know that there is the right combo of medication and the right doctor out there for your son. We have all felt how you are feeling. You are not alone. Hang in there. Link to comment Share on other sites More sharing options...
7upMom Posted April 6, 2010 Report Share Posted April 6, 2010 does doc k let you do it in your own area or do you have to go there???..i guess i could make a trip out of it. i want to do it in june so he has the summer to recoop... We will pray for your family and son also. That is the one thing that has kept us sane is prayer and faith in God. Dr K was more than willing to work with our local doc on ivig protocol he uses. Our doctor here was willing, but just knew nothing about PANDAS and we have found that Dr K has helped us in more areas than just IVIG so far ( i.e. school , antibiotic, when we put our son in the hospital - he helped us through all of this) there is only so much we could ask for his help on and he is not getting paid for it before we feel like we are taking advantage of him so we decided to go with him in case we were still having problems afterward we were with an expert ( although I am sure he would still help - he cares very deeply about kids) I know he is booking IVIG through May right now- he seems very busy- I think the word is really getting out so much that these docs are getting really busy now. What a hard decision it is for us as parents though always trying to do the best by our children. I second guessed myself so much that too much time went by, but we know now that we are on a good track I will pray for that for your family also !! Link to comment Share on other sites More sharing options...
trggirl Posted April 6, 2010 Report Share Posted April 6, 2010 He will be in my prayers. Link to comment Share on other sites More sharing options...
CandKRich Posted April 6, 2010 Report Share Posted April 6, 2010 (edited) . Edited August 12, 2013 by CandKRich Link to comment Share on other sites More sharing options...
kcdc3 Posted April 6, 2010 Report Share Posted April 6, 2010 CandKRich - great song......my daughter's "theme song" is Voice of Truth by Casting Crowns. If you've ever heard the words to that, they fit perfectly for the struggles that she is going through. Google/YouTube that one if you've never heard it!!! Link to comment Share on other sites More sharing options...
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