Doug

Do you really think she needs to go back to Chicago to get IVIG # 2? from everyone in our family.. Ya... I just love to going broke, getting ready to loose our house,living off credit cards, working our butt's off and not getting anywhere, can't go anywhere, because of the fear of her getting sick from someone else kid who has strep or a cold but there parents dont care,because there child is feeling better.. and just waiting for Saturday to get here so we can tell her that we need to go back.. just watch the fear in her face just for the fun of it!!!oh and I love to watch her going to the bathroom 30 times a day,and oh hey let's stop eating for a week because she feel's like she will choke. Yes, we do think she needs to go back to Chicago for IVIG #2 WHY?? because God gave her to us to take care of. because the insurance company can go you know where,and so can everyone else... And I will live in the homeless shelter if we need to,but she will overcome this and grow up to be strong and healthy and the most beautiful woman inside and out !! so there take that everyone! YES she needs IVIG # 2 Tracie

Yes,she has been on zith for a year. and everything thing that you can think of to help with her immune system but nothing of that sort works.

We are going back to see Dr.k in Feb our dd did so awesome with the first IVIG about the same time last year and then she caught something in September and has not been back to 100% at all I pray that this will be the last time we will need to do this But she did so great with the first one that our hope is that she just needs this final push to put her back on top for good. Tracie

Thank You All So Much I know we will be doing IVIG again this year because it is just not going away again but it is ok.. We are a strong family (thank goodness) Keep all of your chins up and a smile on our face because that is what our kids need us to do OK I am off to keep my child busy again,her friend just went home. Tracie

She has been on azith for almost a year.

Hi everyone I have not posted anything for a while but here we go.. My dd had IVIG last Feb,we are going on our one year mark it have been a very long year.. the first 8 months were SUPER she caught "something" in September and has not been back to 100% since we had her tested for strep but it was neg..it always has been anyway my question is Her brain NEEDS to be going and going and going all day long she does great in school but after that it is always "what is next" if the tv is not on it needs to be the computer if the computer is off it needs to be a craft.. ect ect and at night when it is time to start to settle down she has a hard time about a hour before bedtime because we are all just trying to mellow out from the day. And she has a hard time on just being happy, she is fine when she is playing with her friends but then when they go home and we ask her if she had fun it is always "it was ok" or she is very upset that her friends need to go home she has a answer for everything and it is always negitive,, so I know this is still PANDAS but can some of it just her age of 6 and being a only child? we do everything to make her happy, and most of the time she is but only if she has something to keep her mind busy. Thank's Tracie

Oh how I have been thinking the same thing....Thank goodness she is only in kindergarten My dd 6 had IVIG in Feb 2009 with Dr.k she was awesome for 8 months... Got sick in September and has not been back to 100% so she has been at home with me again. She is not that bad she is about 90% most day's but we were just going to get her feeling better but on Friday she woke up with a 102 fever, sore throat,no strep,no flu, but now it has turned into a cold and now we wait for the fun.. I am sure in a week she will start to have a mental break down again.. BUT it is not as bad as before IVIG,, so I need to look at the positive.. anyway she will go back to school.. I just might need to find a hazmatt suit do you think the school would mind??? Tracie

My neice's son has it but,he also has other things wrong with him,BUT I think I will ask her to watch him when he is on abx's to see if she see's a change Tracie

So happy for you my dd only had 2 melt downs but they were quick.. I keep hoping this will go away again and we can have more than 7 months of 100%

I so agree on everything you just said.. Tracie

We went to Dr k we live in colorado He is in Chicago but worth the trip His name is Miroslav Kovacevic Google him.

Ya,we have a feeling that we are headed back for IVIG #2 with Dr.k I think he just waiting to make sure,if she is doing ok by Monday I will try school again and go from there,if not we will do the prednisone and see what happens. We are so tired of this ride! But she is more tired of it also. Tracie&Doug

Ok.. So dd6 was not good about 4 weeks ago upped her abx's for 14 day's,snapped out of it for about a week went back to school (3 hrs.)I was also there with her because I work in the class room on Monday's I was in and out of her class room not a problem with her at all came home she was watching sponge bob and he was going to tie up the crab with "poop on a rope"(bathroom stuff) and the rest of the day went right out the window.. she woulden't even go to girl scouts and she loves girl scouts she didn't want me to leave and even when I stayed it didn't help she just kept on crying so we just went home she thought when she was eating her lunch that she had a noodle stuck in her throat the "chokeing thing" so now she is not eating to much(again) I am told that this might happen between 9 and 12 or so months she was sick when all of it started again but not that sick she had a small sore throat and a slight fever but NOTHING like we have seen before so has anyone elce have had this happen? in this time frame and then it just goes away? I am hopeing It just goes away again... I just dont get it Tracie

Hello everyone, Last week I posted that our dd6 was going through a relaps post 8 months IVIG and I am so very very happy to say that she has come out of it we did two weeks of abx's and we were getting ready to start her back on a steriod burst and it was gone She kept telling me that she was going to have a good day and she was not going to cry so much and she was right it just left little by little. So we have waited a week and she is going back to school on Monday so we will see how long it takes her to get sick again but she LOVES school so she needs to go. Thank's everyone I pray for all of our kids Doug&Tracie

PhillyPA that is very smart of you, you must be getting some sleep these days to have such a good head left on your shoulders?? Thanks for voice of sanity. OK,she call me back... It was just so unlike her to wait so long I didn't talk to her but she left a message for me ect ect... Thank's I was just freeking.

Well I think our dd Doc has jumped ship I have emailed her 3 times about what has been going on with our dd and not 1 email back. She has been very good at least keeping in touch with us when we do give her updates but.. I think she is NOT happy about us not giving her a flu shot this year I thought she understood but guess not. Oh well... I guess I need to start searching for a different doc for her we live in such a small town that most of the doc's all work in the same place.. I have her home # but I don't want to call her if she can't email me back then she sure don't want me to call her at home. Tracie

Thank You How is you dd doing?

Thank you to everyone!!! I don't know how we all do it day in and day out dd is doing better today.. we took her to the the doc last night because she kept telling me for the last couple of day's that her heart hurt's so I asked her do you want us to take you to the doc so they can tell you that you are ok? she said yes,so we went and she is fine and she has not said one word about her heart hurting today I know it was just anxiety but she needed to hear it from a doc she did the same thing when we got back from Chicago,and we did the same thing and she was fine. so I think slowly she will snap out of it( I pray) and she keeps saying how she don't want to see dr.k again but she will if we need to our kids are so brave. So we will wait until Friday and then see about the prednisone I dont want to give it to her if she dosen't need it all of the abx's are bad enough on them and then to add prednisone also. I will keep you all posted Tracie&Doug

I don't know but it seems like it all starts within these months.I just don't get it.

we will start it on Friday because we have already been on abx's for 11 day's but I can't get it from him until Friday at 14 day's..

Well it has been 33 weeks of pure heaven for our 6 year old dd but it is back,she had a sore throat,small fever, for a couple of day's nothing to bad diden't take her to get looked at because her strep tests always come back - and she HATES the doctors suprise suprise.. and then it turned into a cold just like always but then last week we have started to see little changes in her now it is starting to get bigger,her bad thoughts are back a little the seperation anxiety,the depression ect ect.. It's not back all of the way but it is creping slowly back in her mind. We have talked to Dr.k we are doing 14 days of her abx's (wich we had already had started) 2x's a day and if that dont work then we will try prednisone for 3-5 day's and then??? if we need to go back for more ivig then we will. I think if our Dog had not been hit by a car last sunday and died she would had been fine and the abx's would had worked like they have done before, but I know in my heart that the stress of that just put it in overdrive. She has been doing so good in school,but now if we do need to get IVIG again, I think I am going to homeschool her for a year or so just to see if it stay's gone,and with the flu starting.. I am not sure how much more we can take And the money??? I would love for that just to fall out of the sky so we would not need to keep paying everyone back!! oh well what do you do? Doug&Tracie

A healthy immune system can clear strep w/o abx. I read somewhere that abx only shortens recovery time by a few days. YES...so if you have doctors saying "you need to have a,b,c symptoms X number of days before coming in or before they will treat you, that falls in line with what you just wrote, Peg. Which I guess would be fine if we weren't worried about exposing our kids..... IDK, dr. K just told me to focus on behavioral symptoms in my girl, not physical illness ones if there is no change in behavior. I've never been much of a germaphobe before and I'm having a hard time adjusting Oh we are so much the germaphobe family my dd has told me several times to stop watching her (for her behavior changes)