simplyshine

Some ramblings here...Just curious if I'm the only one that has had a doctor completely opposed to testing strep titers and for lyme. I have asked for these tests for over a year and she simply balks at it every time. What are my rights as a parent? My ds was diagnosed with PANDAS by another doctor (we got referred to outside our insurance) about two months ago. He prescribed a prophylactic penn dosage, but never did any blood work either. My ds has been flaring terribly for two weeks now and the diagnosing doc does not want to change the abx. My son has no other signs of strep, but has had a bad cold. I'm just not sure what to do or if I'm crazy to ask for blood work. I'm aware that blood work does not make or break a diagnosis and sometimes won't show anything unusual, but does it not make sense to cover all our bases before just jumping into IVIG - paying out of pocket? Wouldn't it make sense to try a stronger abx and/or test for lyme and check titers and levels of vitamins, minerals...BEFORE just jumping into the big stuff? Am I crazy to think this is weird? I don't know a fraction about PANDAS like most of you know, so excuse the layman's explanations and questioning...I'm trying to learn but my brain seems too tired with the day-to-day crud around here.

Just read your post about the doctor recommended in Denver...would you be willing to share it? We are seeing a doctor presently who is very helpful but hasn't done any blood work or allergy testing, which surprised us since he did give our ds a PANDAS diagnosis based on our symptoms list. Thank you!

Thank you for all your helpful response. We are really struggling with behavior issues and now feel we have to move forward on something, just not sure how since our dr won't prescribe abx. Also, how do you get your doctor to test for Lyme?

I've struggled to understand how this all works with PANDAS...does it stay around until it's treated, does it go away on its own? Do the symptoms hang around even if the infection is gone? If so, how do you deal with the behaviors that don't go away? I clearly don't understand how this all works. If my child has had moderate to severe PANDAS symptoms in the past - sudden onset coinciding with strep -for about two years with symptoms reoccurring on and off at different severities but now has just mild symptoms with the exception of intense emotional outbursts and defiant behavior as well as attention issues -- do we pursue treatment and if so, what type of treatment? Psychological/behavioral treatment? Or should I follow through with a refer to a PANDAS friendly doctor? I don't know where to turn for the behavioral issues if they are just a left-over from the damage done awhile back...or are these behaviors a sign that my ds is still in the heat of PANDAS? I don't want to waste the PANDAS doctor's time with just an angry, defiant child who can't control himself. Any suggestions would be greatly appreciated.

Having spent 18 months with out getting any significant help for my 10-yr-old son who continues to display severe to mild Pandas symptoms, I am completely frustrated and "done" with our Kaiser doctor. She brought up the possibility of Pandas at our first visit, however, just as quickly ran as fast away from it as she could. We've tried to deal with the symptoms to some degree, like trying stimulant meds and talking to a therapist. I have to admit that I haven't been willing to go through all the steps she's suggested, such as seeing a psychiatrist and sensory therapist, checking blood for things like high copper. It all just seems ridiculous to me to jump through all these hoops, but perhaps that's why she isn't willing to diagnose Pandas, since we haven't ruled all her other ideas out. Nevertheless, I don't believe she will help us move forward and my son's severe episodes are getting worse and harder to live with. Our family is suffering. We aren't getting much sleep, and my four kids no longer like each other much -- all because of our one child who is sick, very sick. So my question is this, if you have a doctor who won't help with a pandas diagnosis, then what are the steps to take next? I don't know where to start. We are in Denver, so I'm hoping someone out there knows of a doctor who has experience with Pandas instead of looking at me like an over-emotional, internet-diagnosing crazed mom. If so, does Kaiser ever refer outside their docs? Do I ask for that? Can I? Also, what can our family expect to spend if we have to go outside of our insurance? Should we expect that this will be a real financial strain? We are willing to do whatever it takes...I just wondered how to break it to my husband:) I've reached that point I'm sure some of you can relate to...when the disbelieving doctors no longer have a hold on me. I'm done, finished, and moving on.

Does anyone know if doing an MRI is a worthwhile pursuit in the diagnosing of Pandas? Our doc ordered one for my ds, however, I don't know if it makes any sense to put him through that process if it's not likely to be helpful. I'm really confused why a neurologist would even suggest an MRI in my ds's case, but that's the latest we've been told.

Thank you so much! Now I have some things to offer the dr.

I'm so grateful for the advice I've gotten so far from so many of you who are much more experienced than I with all the PANDAS info. My ds went to the pediatrician today. The dr asked me to send a link about the Cunningham Panel as well as any other recent Pandas medical research. Does anyone have some quick links that would be valuable to send to her?

We are still working on getting a diagnosis for our son. The entire month of April was a flare-fest for him, and we reluctantly are trying Concerta to see if his time in school is more productive (teacher says he's "out to lunch" all day). 18 mgs did nothing and his teacher told me today that he hasn't seen any changes with the 36 mgs either. Is this possible proof that it's not ADHD and that something else is going on? He's been on the meds for two weeks. Also, his doctor finally agreed to do some blood work for us. We aren't exactly sure what to have tested and since I'm not that medically-literate, I wondered if someone could just make me a list of things to ask for. I was thinking that testing the titers and some nutritional deficiencies would be good, but what specifically? Thank you so, so much! Also, we have an appointment at the Children's Hospital of Denver with a neurology doc. I also have a referral to the infection diseases department. If we need to pick one or the other (for financial reasons right now), which should we choose? I got the neurologist off of a PANDAS provider list, but I'm unsure of the extent of his knowledge on the subject.

The strep tests came back negative, and since our doctor wasn't available, we saw a brand new PA who had little if any knowledge of pandas. Needless to say, the appointment was less than helpful, however we have seen some good things lately. I don't think I mentioned that we had been trying Adderall. The day before his recent strep test, and since he didn't have school, I took him off the Adderall. It's been fairly amazing to see that the OCD and hostile behaviors have diminished significantly and continue to stay at a low level. My thoughts are that either it was the Adderall that was triggering and/or exacerbating the pandas symptoms or that being in school itself causes those things (Thanksgiving break was almost a week and the last time he took Adderall was on the school days). Not sure if I'm making any sense:) This week will be a good test if it was indeed the meds that caused the behaviors or if school triggers the symptoms (they'll come out with a vengeance after school and in the evening). If he remains "settled", then I'm thinking that the antibiotics did help and that the Adderall was the problem during this last few weeks. Thank you so much for all your support. I've never done a forum before (and it probably shows:).

Thank you for your helpful comments and suggestions. I feel like I'm floundering around in all this pandas information and trying to process as much as I can. Meanwhile my ds is walking around the house with crazed eyes, lots of broad body movements (is that a pandas thing?), and an absolutely inflexible and angry attitude about anything and everything. I'm concerned that if swabbed for strep, it will be negative...and then what? The problem behind the doc's reluctance to test and treat him is because at our first appointment we told her that our son was a bit unfocused since he was young, and I think the doc took that info and ran with the adhd diagnosis . When I told her that his symptoms lined up perfectly with pandas, she actually said, "I feel bad because I put an idea in your head." She keeps pushing us to try the Concerta and asked my son very leading questions that made it look like he loved being on Adderall & that it was working great...so frustrating as I sat there looking like a crazy mom. I'm taking him to get a swab today...but not hopeful...

I'm having a difficult finding the answer to one of my questions regarding PANDAS. Our pediatrician has not been willing to diagnose our 9-year-old son with PANDAS, however, she agrees that all of the symptoms which abruptly began after a bout with strep seem to point in the direction of PANDAS. After testing his titers, one test came back high, so the doctor decided to treat my son with a course of antibiotics, during which our "missing boy" seemed to re-emerge -- no more OCD behaviors, sensory issues or extreme agitation. My question is this: After the round of antibiotics, my son's PANDAS symptoms returned, however, some days they seem heightened and other days he seems back to his old self. What does this mean? Is there still strep present? Or is his brain still healing? What course of action should we take? The doctor refuses to do any more blood work until several months have passed. She wants him on Adderall and then for us to try Concerta to see if these help his symptoms. I'm not on board with that action at all...but don't know what to do.