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madisonjar

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  1. sorry I miss wrote that, it is 2% probability of relapse I have since edited it, 73% is the percentage of non relapsing patients.
  2. I am curious I have been researching chances of relapse and this page seems to indicate that if given treatment for a year (did I read that right?) or is it the stats were taken a year after treatment...that there is a very small chance these children will have relapses if the original strep or whatever bug is taken care of..I believe she said 25% had a very minor pickup in symptoms with only 2% of the 200 have a complete relapse...so how accurate is this? does anyone have facts and percentages of what the chance of a relapse is? I am doing everything I can for my boy and just am looking at the future....hoping. He has come back around to pretty much 100% normal, we have completed one month of Augmentin with at least 3 more to go...This has worn me down and made me depressed...I pray for all your childern and hope we can put an end to this and let these kids get back to their lives without ocd and tics.
  3. I am spreading the word as much as I can right now and trying to do it smartly. We dont know where we are at on this path, its just frustrating that doctors will fight over this all because their textbook in 1959 didnt say anything about pans/pandas and so it couldnt possibly be true. Well Guess what Autism was controversial too, open your eyes people and lets help out the sick, you know the job you signed on to do . also the bands he tested positive for is IGG 23,41,58,66 and IGM 41. I asked the doctor about co infections and he said not to worry if augmentin helps brayden get better he is not worried about co infections. In the mean time We have decided to go the essential oils route we are currently using thieves and frankincese and rolling it on him 3-4 times a day, weird part is the first night we rolled it on him (we did it right before bed) he threw up that night for no reason.....could that be a herx? He had been on antibiotics for two and half to three weeks before that....this week I am going to add a little oregano oil to the mix as well and put it on him everyday, I hear that is great to cure co infections of lyme. I have also added a Omega 3 and DHA gummy for him, but I am looking into getting stronger stuff.....We will also continue with his probiotic as well. The whole point of this thread was to say how crazy it is that this disease has been around and getting noticed yet it seems like its still stuck in first gear as far as testing and studies on it...and very little information, and the stuff that is out there is contradicting itself....if it wasnt for this forum, I would be really stuck lol.
  4. Oh and other thoughts I have read That if caught early and treated if they do have flare ups they will be less severe then I read that each flare up will be more severe no matter if they were treated or not!!!! ahhhh the circles I am going in, I am driving myself looney.
  5. I understand that this is a new disease and that they are still learning about it, its just frustrating to me that they arent doing more...how about stop spending money testing if eggs are good to eat in the morning and test on this stuff, our kids are suffering and the family is as well!!! My son is 7 years old, before christmas he got sick (puking, fever, squirts and everything) two days later he started a confession of sins and then the thoughts came on board, he told me all about how he likes girls (pretty much everyone he could think of and didnt want to leave the house due to seeing girls and thinking they were "sexy" (His word, which we told him to have proper thoughts about girls, they are Gods creation and we are to respect them) after two weeks things started getting better but I just knew something was wrong...got an appointment with who i hope i a pandas specialist (he has been great so far dr k in beechwood ohio) anyways he took blood and said to continue with ibprofuen (we had done it for two to three days and it seemed to help...about 7 days later he called and said ds had elevated lyme wanted us to see him in 4 days...he then said ds was pans/pandas probable and that lyme and pans treatment is the same...so we are about day 24 into the treatment of augmentin...so far so great (except with me i feel like i am waiting for the other shoe to drop and reading a ton)....anyways people that went through this with us i have shared ds diagnosses and they have said the same thing, "i have tried to read on it but there is so much info that contradicts out there"...and i agree. As a parent i am so confused and even the dr does not give straight answers. Again i know this is new... I just feel helpless and want my son to have a good life. dr said augmentin for three months and we will talk about lower dose. Questions should i push for ivig? I have read that kids who get this caught early and get IVIG have been healed majority of the time/then i read that both abx and ivig are whats needed when caught early. Do kids need Abx till they are like 21 or can a year or two put a kid who is back to baseline where he needs to be and he would have no flares again...or will heneed ABX for his life? I thought sammy from saving sammy was off all medication but then i heard him say he gets ABX when he feels symptoms return. with elevated lyme if we get rid of it (he had 5 of 6 lines neccesary for lyme) do we get rid of pandas (no bed wetting, no dialated eyes, no real big detoration in handwriting but he is in first grade whos to say for sure)just anxiety and crazy thoughts for two weeks. why are people not looking into this, why do Kids have to suffer?! I will say I did talk to our regular ped as another kid has the stomach flu and we had a newborn (oh boy first dealings with pandas and a newborn) and she said that she was taught about Pans/Pandas in Med School and knows about it, so thats a good sign. Anyways, SO FRUSTRATING...heck the page they tell you to go to says to treat a pandas kid as with any other OCD child with PYSCH drugs and that is all....I read about kids they have gone into remission for good and then I read on here that that does not happen....But then other places say it does and one website said 63-68% of kids that took ABX went into remission for good....so confusing!!!!
  6. Okay another update...I originally said AMOX but I was wrong its augmentin he is on week 3 of it and is doing awesome, he has had one intrusive thought ( we brought the new baby home and he had one bad flare up but he was also going to the doctor and said when he goes there now he thinks about all the things that he was thinking before) other then that he seems to be doing great...A little hyper at times and a bit agressive at times, but we are also having the worst winter we have had and I think Cabin Fever is realllllly setting in. Anyways Doc is keeping him on 1000 augmentin (1 pill twice daily) for 3 more months and then we will talk about backing him down or seeing what we need to do. SO here is my thing...I want to attck this as much as I can. I have gotten essential oils and want to start working with those to hopefully build up his immunity system and we are also still doing the probiotic...He takes a multi Vitamin in the morning, anything else that would help you think? I asked the doctor about relapse and he said it is a good chance, but he also said that kids that catch it early and get treatment seem to do the best....EVerything sound about right there? any suggestions on our next plan of attack on all of this? Now that he seems to be doing very well, I want him to stay that way! thanks all!!!!
  7. okay got the blood work back friday as I got in early because really well my wife could go any time and I also wanted to start treatment asap!... The bands that reacted according to the test were IGG 23,41,58,66 and IGM 41 The Doc we are seeing said he wants to treat with a heavy dose of AMOX for one month and then lower it for 2 months after that...I am reallllllyyyyy hoping we are going in the right direction here. We started treatement friday night and sat. night he had a very little 5 minute flair up of thoughts and then that was it....other then that he has been back to himself...so again I ask your thoughts on all of this? are we doing this right?
  8. another update. We had our appointment on the 21st of this month and the doctor was interested that B's Symptoms were going away so fast...he did blood work and called me yesterday and said that it showed elevated lyme in his blood. So I am assuming this is the lyme that has done this to him? The doctor said at the appoinment that we should do Ibprofuen for 2-3 times a day for two weeks just to see how he does and go from there, but when he called us back with blood work he wants to see him on Tuesday and said something about antibiotics....I am going to call him back as my wife is 9 months preg. and could go anytime, just curious if we can start treatment now and then go back up and see him. So I am hoping to treat the elevated Lyme and get my buddy back to where he should be. Thanks everyone. By the way he is still in school and back to himself...from what I have read that is characteristic of lyme disease and why it goes untreated for so long as it usually changes symptoms. is that correct?
  9. Just a little update. After a pretty decent night last night (he was in a really good mood, and returning to himself...a little hyper at night which is normal for him what kid wants to go to bed, and the cowboys won so he was excited) we were nervous of how this morning would go as he is back in school for the first time since this all started. He woke up and came in our room still upset saying he was thinking about it (his obtrusive thought is girls and other stuff) which means he is having bad thoughts...I prayed with him and he asked to watch tv which is the FIRST time in two weeks he has not went and put headphones on and listened to adventures in odyssey or just laid in bed crying because of this thoughts. I then told him he needed to take a shower which he fought me on which is good as the last two weeks kid was wanting to take showers every day on his own. He was laughing and joking and cracking jokes. He still had some thinking about it moments but it was good it seemed he looked through his football cards that he got for Christmas even picked out some for his friends and eat breakfast and got on the bus just as he has. So we thak God for that!~ it seems as though at least for now he is having a good day today.. I called the Pans/Panda specalist here in ohio and thankfully he does take our insurance and I set an appoinment, sad thing for us is its not till the 21st. I am hoping this kid is getting somewhat back to a normal routine till we can get him to the doctors, I am encouraged by those who have said they have had smaller flare ups and I pray that he does not get exposed to something at school that causes this to flare up again. Also hopeinhim, we pray ALOT, so thank you for your encouragement....My wife read this in her bible study today...What seems like an unmovable mountain to us is but a stepping stone in his eyes.
  10. Yikes I don't know if I came across as just hoping this stops so I don't have to treat as I will be treating I am just looking for Rays of hope as pandas resource website makes it seem like you can treat infection (like for a while) and things can and will get better. I have a Drs name from Bedford ohio I think that is a pandas specialist I am just hoping for some relief for my child...he has had a okay day today aside from not wanting to go to church afraid there were girls there (that's one of his thoughts is he is in love with every girl) and of course the confessing of "sins" he has done...but he has ib profuen in him so it keeps his mood up.
  11. I should say could he not will he sorry
  12. Will he get better on his own right now? Just curious about that as I have heard people say it went away after x weeks..it has been two weeks for us now...I will pursue diagnosis no matter what just curious what to expect from here...he has no physical tics just obtrusive thoughts ocd
  13. Also giving him ib profuen is okay to help him get as close to his old self as possible for right now Is okay correct?
  14. So let me ask this, he seems to be more mild and I have been giving him in profuen the last two days and it is helping...if we can get in asap and get treatments going (if it is pandas of course) do most kids return to their old self and control it with antibiotics to a certain age? Sorry for so many questions I just love to get info and thank everyone for their time.
  15. I have found someone named Michele Snyder who does a support group for kids with pandas ocd here in akron..I am trying to get in touch with her now..how much do you guys think you have put into doctors cost per visit? Just curious..thanks everyone...I have read that with treatments and maturity of immune system people can grow out of this disease is that true?
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