tnksmom

Thank you for that input, I am glad to hear that you had a good experience with Dr. K. It helps as we try to make a decision about what to do next. We still have not heard back from Dr. Murphy (and the assistant told us she would call back in a few days- it has been a week and a half, seems longer!).

Chemar- You are right about the "short term" eval; I have had some of the same concerns. I work two jobs (teacher/waitress) so it would be somewhat difficult to afford (timewise and financially) monthly trips, but thankfully if we need to go a few times I can work extra hours at my second job to finance if need be. I have no idea what the insurance company will do with this, so there may be a huge expense there. My hope is that if we make the connection with her that we will have a place for our own pediatrician to go for questions. We have tons that he cannot answer at this time and he is the type that will connect with another and use their expertise. We also will likely need referrals to other specialists that we can do locally, we just need to know who she recommends. We MAYBE could do this with a phone consult, but I truly believe that in order to not feel rushed and miss something, an in person visit would be worth the expense. Perhaps in my mind, as a mom, I will at least feel that I am doing all I can if I see Dr. Murphy herself, as one of the foremost experts, and if not her, I will try to see Dr. K (just refuse the IVIG until I know more about it). Thanks again for your support and suggestions! TnKS Mom

I appreciate all of the support and information. Chemar, I didn't overlook the Chicago doctor, but was a little nervous about some of the posts saying he pushes IVIG so hard- I am not ruling him out though, so thanks for the reminder Oddly enough, it would be cheaper and quicker to go to Florida because we have family there so a car and accomodations, also less travel time. Funny how that works out- but if Dr. K. ends up being the better choice, I will go that route of course. This continues to be so difficult because currently our son is doing fine. We see a few tics each hour, and can handle that. However, before the three courses of antibiotics, there were so many that we couldn't accurately count. The moodiness- that is actually harder to deal with, but even that is better than it was sans antibiotics. I know that our pediatrician will follow the advice of Dr. Murphy or Dr. K, because he admits he just doesn't have a course of action for this. Right now, I haven't had any communication with any physicians for at least a week (although I did leave another message with Dr. Murphy on Monday or Tuesday to see if she has recieved the records yet, haven't heard back). So we wait. . . These boards are so very helpful-- thanks everyone!! TnKS mom

Yes, he also told me I was throwing money out the window with Magnesium and Omega 3's. I will keep moving forward. He might not believe what he can't see (scientifically), but I have a greater stake here, and I believe what I have seen and continue to see!

I was reduced to tears today at the peds. neuro appointment. Just when I thought we were getting somewhere with our son's primary physicians understanding and believing what we were saying, we go to this new dr. (appt set up months ago when tics started by our ped). He said that if I would follow the work of Harvey Singer who is "the foremost expert on PANDAS" I would know that his studies prove that tics are not caused by strep. So, I researched Dr. Singer to find that he cannot PROVE the connection, although he continues to ask for further studies (to me that means he cannot disprove the theories). He admits that tics can be exacerbated by strep (although not caused by strep), stress, fatigue, etc. but does not approve of using prophylactic antibiotics (which we are not on, but I would not be against). His most recent findings were published on June 8th. (http://www.hopkinschildrens.org/newsDetail.aspx?id=4914) The peds neuro we went to is very well respected in this area. He went on to say that Azith is of no use as an immunomodulator and seemed to belittle me when I respectfully) questioned that. I also researched that when I got home and found a 2004 report that was released about the immunomodulator qualities of Azith. He did say that some children take Haldol and other drugs for tics, but that he didn't see the need for my son because he is perfectly normal. It didn't matter that he has had major tic outbreaks three times and all three times he responded well to antibiotics, in this doctor's mind there is no such thing as a relationship between strep and tics. I am hoping that this physician's viewpoint does not sway my primary physician, as I really need him on my team for this. We are fighting a huge uphill battle, and will continue, and next it will be with insurance coverage of this disorder that my son shows all the signs of but that really doesn't exist. . . Just needed to vent-- hopefully we will hear from Dr. Murphy this week, because I am ready to fly to Florida for someone who doesn't have to question logic left and right, but that will just help us navigate through this very complex maze!

Thank you so much CSP and Chemar! The lady at Shands who gave me the email address was so rude and unhelpful, I had to pry the email out of her and she told me that she had no other contact info. She offered an appointment with a Dr. Kim, but couldn't tell me if he has a special interest in PANDAS or not. Perhaps I just got the wrong person on the line. I am very grateful for your help and am interested in any other leads that anyone can provide. Although we are in Wisconsin, I will travel wherever I need to-- I do have friends (in the medical field, which should be helpful) in Tampa, so I am very familiar with the area at least. Thanks again- TnKS mom

We have been dealing with multi symptoms since about April of this year with our 11 y.o son. I have finally gotten our pediatrician to say that it is likely PANDAS due to the overnight onset, tics that get better with antibiotics (he just finished his 3rd course, which I asked for after reading these forums), separation anxiety (so unlike him) etc. Today our treating doctor called to say she must bow out, and defer to our primary pediatrician (whom I like quite well, but who isn't as agressive as the treating doc) for political reasons (office politics, which I understand). She has tried to email Dr. Murphy at Shands, but Dr. Murphy hasn't yet responded. Today I called Shands (our docs are trying to fax our records), only to find out that Dr. Murphy is no longer with them, but somewhere near Tampa. Prior to bowing out, our treating doc did say that a consult with an expert was warranted, and wrote that in a note to our primary, who agrees (thankfully). They both would like Dr. Murphy to see our son if possible, but we cannot find current contact information. I am desperate to help our son, a feeling I know many of you understand. I am willing to go wherever we need to in the U.S. to get help for him. Can anybody give me current info? I am to the point where I can't hold back the tears anymore. . . I am just scared. Thanks in advance TnKsmom