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Ann280

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  1. My daughter has had the same combo for most of her two years of bloodwork..we have done every test possible...and they all come up negative. They say her immune system is compromised especially after being treated for pandas and being on so many antibiotics . One blood doctor told us that he is absolutely sure she has some type of fungus in system being that the neutrophils were low and the lymps were high...classic sign. We did stool testing and it came back with crazy amounts of bacteria much much more than a stool would have.. This confirmed his theory. she was put on a non sugar diet and anti fungal MEds along with strong probiotics. He said she had so much that he couldn't say how long it would take to get the levels at a more normal level...then he meantioned the symptoms of the die off from fungus....urghh very frusterating. this didn't help her symptoms..maybe we didnt do it long enough but the symptoms were getting so bad we couldnt not do anything else...OCD, manic behavior..separation anxiety. quote name='landamom' timestamp='1350314077' post='148148'] Hello, My DD just had some more lab work done, including another CBC. Her neutrophils level was low and lymphs were high. It seems like maybe this can be related to autoimmune disease according to google, but before I start freaking out thinking it's something else (ok, too late I'm already freaking out) I just wanted to see if anyone else's child has had these numbers be out of whack. Thank you!!!
  2. We started our daughter on buspar about 6weeks ago 5mg once a day for a week then slowly to 10mg. We started to notice some changes in her behavior within two weeks..she definately seemed more at ease no worrying as much not over reactings etc.. Then she has a pandas episode I felt like the buspar helped control the depression that usually comes along with her episodes in the evening but the manic "highs" we're still there. We treated her with a pulse steroid for three days and also with her usuall zith HS e seemed to take much longer for her symptoms to go away this episode...not sure if it had to to do with the buspar. I had her conference and Her teachers have been noticing a different attitude in school more of a distraction non caring attitude..not focused etc..they said when she is having a pandas episode it is very obvious this is more a subtle ongoing problem.. She does have learning differences but she has always had a very strong determination and drive to do the best she can...sometimes to much. She has lost that. She has been more irritated and doesn't seem to care about her behavior...we switched her back to 5 mg of buspar a week ago but have not noticed any changes..possibly she is starting with another episode? I didn't want to give her the buspar to begin with but I have been at a loss ...when my daughter is crying to me that she doesn't want to feel like this anymore I had to do something..at this point her attitude stinks. I don't know what to do .
  3. Curious was your child on any meds for the previous diagnosis of bipolar or aspergers?
  4. We've not figured it out either. It took me a couple of years to accept the fact that he was not in control -hmmm, same years that our doctors insisted there was nothing wrong. Until then, we tried everything. Time outs are great if your child will follow direction. I still remember night after night holding him in his room for his time outs. On the positive side, I was getting exercise too. He seems to be over the worst of it so we've not had the severe discipline problems in a while. We did make it very clear to him that if he hurt someone in the family we would take him to a hospital. That scared him, especially after we took him there once - me holding him down the whole trip there. So one bit of advice, you have to follow through when it's serious. I do feel that it helped to discuss his behavior with him when he was in control. That also allowed us to gauge how he was doing. If he was remorseful, great. When he wasn't, those were scary times. Knowing that he wasn't really in control we've moderated our stance somewhat and pick our battles. (Our daughter reminds us that we allow him to get away with things that we would not allow her to but then again she's 17 and life isn't fair.) As he continues to heal, discipline becomes easier as well as less often. So - I don't think that easing up on the discipline while they are sick is necessarily detrimental in the long term. If your kid is essentially a good kid and it's the PANDAS making her behave inappropriately, I think they self correct as they get better as long as you are there to keep moving the bar in the right direction. All of this is of course - IMHO. Thank you..I hope this gets easier as time progresses..my daughter is only 11 . Pandas puts such a huge strain on our marriage and our family. I always feel like I am waiting for the next episode to explode and worry all the time for my daughter. I guess this is just our family dynamic at this point..I try to look at the fact that it could be worse when I'm feeling down about it all. bill
  5. I'm sure this is late and hopefully you got the answers you needed but pulse dose of prednisone has ace a huge difference in my daughter when her episode was bad. It did however makes things worse before it got better,but I didn't care. I figure what other choice do I have and if it helps for three days I can deal with it and so can her body. My daughter is 62 lbs and she took 3 pills of 10 mg each once a day for three days. Not sure what others dosages are ,but that is what my daughter took which helped. Good luck I feel for you.. This pandas sucks..
  6. My 11 yr daughter sees Scott..we haven't done any dietary changes other than add vitamins to her diet.. Magnesium ,taurine, DHA, vit D. What dairy changes?
  7. I am struggling with figuring out how to punish my daughter for some behavior that is not acceptable. I feel like my husband and I are constantly allowing my daughter to get away with behavior that we would never let our other two non panda kids get away with. We still need to teach our daughter what is or what is not acceptable behavior at times. I'm not talking about when she is having a major episode and she is definately not all together sad, silly, argumentative, defiant etc... I'm talking when she is days into her treatment and she is acting okay most of the time ,but has her moments that are just not acceptable. My therapist says I need to be somewhat consistent and set my rules and stick to them which I agree. I just feel a bit guilty as I'm not always 100% sure she can always control this behavior...I know at times she can really try hard and hold herself together fine, but then there is other times I'm confused. How do others handle this with their kids? Any advice would be great
  8. Hi may I ask why? I know the office staff is not all together at times ,but I'm wondering more about your comment and are you referring to his associate as well Scott smith? Thanks
  9. Hi we see Scott smith as well for our daughter...I was looking to connect with some other moms using him for support. I have an 11 year old with pandas diagnosed a year ago. We live near basking ridge.
  10. Thanks for the information.. I will read it.. We came home early from the shore (due to Hurricane on the way)and I am going to call Ped tomorrow and see if he can get tested for strep again and explain the issues.. He has been healthy other than the strep. Everyone in the family is pretty good. DH has MS and I just got over a bout of vertigo but other than that.. everyone is good. No fevers, no colds.. Nothing.. I love my ped and I hope he is on board with all this. He knows My son well and should be able to see the tics and differences himself. What I need to know is ... Is this recoverable? Is there something that will stop this and reverse it? Or is this something he will deal with forever? My pandas doctor says this usually goes away after puberty ,but who knows. I've been dealing with this with my daughter for over 1 yr and she most likely had it for years before. btw my daughter is 11. The unknown time frame of this pandas is very scary to me. I personally have a hard time wondering is she bipolar even after over 5 abx treatments that changed her after 3 days. It's hardvo accept as it doesn't just go away. Unfortunately my daughters titers when I had them done twice were normal, so it's harder for me as I don't have concrete answers,but as I have learned there is nothing totally concrete with pandas that's why it's so hard to accept it sometimes. Regardless, it's tearing up family..as my two other children are non pandas. Its very hard to deal with one child and have her brother and sister so confused and frusterated. I have told them about it pandas, but her behavior at times is so hard on them i feel its not fare to them growing up. Also my ped doesn't help either she is not supportive. That's why I had to trust my gut and go to a pandas specialist. So frustrating and depressing thank god everyone on this forum actually understands what each and every one of us goes through .
  11. I totally feel for you. I agree maybe trying a different antibiotic. Have you tried a motrin protocol?or any natural supplements? Its so hard to send kids to school when these episodes happen I have struggled with that many times. Your not alone,hang in there !
  12. This was great info! I sent it out to many people I know. I also sent it to our OT that works in our school for my daughter....great to get the word out. This Pandas needs to be understood and we need to get the word out...so that others can understand what our families have to go through.
  13. Possibly see if he would allow you to tape your session. It's so hard to remember it all even with having another set of ears.
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