Preparing for doctor's visits

[mama2alex]

There seem to be a lot of new "faces" on the forum, and I know one of the most challenging aspects of this ordeal can be convincing the doctors, so I wanted to start a new thread where we can share ideas for convincing doctors that a) PANDAS exists, our child has it, c) how to test for it, d) best treatments (long-term antibiotics, IVIG, PEX).

 

One thing I've started doing is writing a letter to the doctor we're meeting with and either dropping it off the day before our appointment or giving it to the nurse so he can read it before he comes in. It saves a lot of discussion in front of my son, and gives them something they can refer to later for all the complicated details. It also gives me a chance to state up front what I'm looking for from them (antibiotics, IVIG, etc) and why.

 

With the letter I include a list of PANDAS symtoms my son has experienced. It's long and ugly, so it really helps drive home the point that he is suffering and needs help.

 

I also include our Cunningham test results and one or two supporting research papers.

 

I think this has made a huge difference with the last two doctors we've visited.

 

If you have ideas to share, please do!

[peglem]

I get my very supportive pediatrician, who I have gifted with all pertinent research to call the specialists, and include research in his referrals to him. Then I pray, pray,pray...

[smartyjones]

not to give to a dr but to help me be organized. . .

• a while ago on this forum someone mentioned paperwork going in the binder - ah yes - a binder! previously, i had folders that i'd try to shuffle through for my own info or at a dr's office. i now have labs, notes, studies, info from this forum, etc in a binder with sections so i can easily access what i need to.
  
• and i think it's important to have a copy of results from every lab that is run.
  
• for our last mtg with a new psych, i had an outline of the things i wanted to discuss written out. i gave her a copy, she read it over and then discussed from her perspective - kind of in the order she thought was important. i thought it was helpful - usually i have a paper with my notes, but inevitably i forget something.
  

[dcmom]

I don't mean this to sound unhelpful- but the best things we have done have been seeking out doctors who are strong believers of pandas. We didn't want to waste time educating or fighting with docs. Going to Dr L and Dr T were the best decisions we have made. Now that we are actively treating and learning about pandas, I am educating her pediatrician group, and whatever doctor we see. It is sometimes easier to educate them when you have already seen beneficial results.

 

Just a thought...

 

I wanted to let parents know that if they have the ability to get to one of these docs- that should be your starting place, then when treating your child, go back to your local docs to see if you can pull them along....

[tantrums]

One thing I started doing right away was writing the lists of my sons symptoms and giving them to the nurse to give to the doctor before she comes in. As most of his appointments have been late afternoon and my DH hasn't been able to go with me, he is in the room with me and I feel it would be awful to go over it all in front of him. I think it also drives home the point that this child is in a very bad place and discussing these things is very difficult as it will only feed into some of the issues themselves. So far, it's been very helpful. In fact, I was just working on one for our allergist appointment tomorrow.

 

I may be new to PANDAS, but I sure learned after suffering Chiari for so many years - get your own copies of all test results (or your childs of course), make multiple copies so you have them on hand to share and have them organized and ready to go with you to appointments. Unfortunately or fortunately, depending on how you look at it, I've fought the Chiari fight for lots of years. It's very similar to PANDAS in that many doctors either don't know about it, don't believe in it or think one has to be completely incapacitated for it to count at all. I am glad that I have learned to prepare and advocate myself so that I can do so more efficiently now for my son.

[Suzan]

At this point, here's what I do...

 

I have all my former test results, questions and PANDAS research or info ready with a copy to hand over..... But before that, I am clear with myself about why I am seeing this new doctor. Sometimes it's related to PANDAS and sometimes it's related to other things (like immue testing) where I would want the doc to know why I'm there, but also that it doesn't matter whether they believe in PANDAS or not, (well, not really but suspend your disbelief for a minute )....but I'm very clear on what I want them to do. At the very least, I have some good test results that I can then take with me on my quest for a good doctor.

 

Additionally, finding local PANDAS parents through this board who you can bond together with to find good doc's in your area who are willing to work with you and form groups to help share information, etc. with so we all continue to learn and move forward.

 

Susan