Advice about neurologist appointment

[Plum99]

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Edited September 23, 2016 by SSoda

[Gpookie]

The best advice I can give is what I think tends to work in most situations for doctor? I hope you can take the advice in the spirit it is given, which is to make sure your kids can get the most attention and best possible care! Prepare a half or one page summary for the doc., make sure it includes ONE specific request or question for him/her. And then put everything else in a file and be prepared to answer questions.

 

I would say first, figure out (realistically) what you want out of the appointment: do you want simply the doctors commitment to seriously turn every stone to figure out what was going on? Do simply want a neurologists input of some of the neurological things you have been seeing? Are you going in determined to get a PANDAS diagnosis? Do you want to convince the doc of something or do you want him/her to be curious about your situation, ask questions and figure out what is going on? In our case, we had a specific (but open-minded and realistic) goal for each doctors appointment. We were also willing to accept that there was something else going on than what we suspected.

 

In my experience, it's best to get rid of as much emotion about the situation as possible before going in. Drs cannot really do anything with the parents emotion and it might cloud the picture you are trying to build (I recognize that for PANDAS parents, this is a phenomenal task!!!). I always try to look at it from the Dr.s perspective What does he need to know to evaluate my child for whats going on rather than tyring to give every detail of what we experience at home and how it imlacts us.

 

Present as many facts as possible and try to focus on the clear indisputable facts. Try not to press a diagnosis in a certain direction, but present clear, solid facts that paint a picture of what is going on. Even the best doctors seem to get skeptical if the parents walk in with a diagnosis. Instead, try to link any causal relationships in a factual way if there are any. Example: I would recommend not going in looking for a PANDAS diagnosis or other, but you CAN say (if true): I notice that if my child or someone in our house gets sick, XYZ happens. This has happened in January, April and August and each time, the episode lasted ABC. 123 made it worse and 456 made it better. We also notice (in our family), every time my child failed a math test or got sent to the principals office for behaviors, 2 or 3 kids called in sick the next day. Things like that. I find that many doctors treat PANDAS but shut down with the use of such terminology (i.e. Johns Hopkins)

 

Try not to dump a zillion details on the doctor, but group symptoms and give them a name. With my son, we said things like: He began to restrict his eating, could not sleep at night and found it very difficult to stop moving, even in his sleep. We did not go into: he tapped his foot 10 times in an hour, he tossed 23 times in bed and rolled his eyes and ate his bread but not his eggs and he would cry when the door open and he couldnt sit in the car without crying. We would say: he lost his fine motor skills overnight, rather than give a laundry list of things (unless the doctor asked). Make the doctor curious and let them ask questions.

 

Doctors have it rough, too, and need to weigh the information you give them, so make sure that you dont lose them in detail or put them in a binary situation (i.e. you think its PANDAS, he doesnt, there is an argument and your child never gets evaluated). Think of the doctors as a potential partner, though not all will be in the end. the trick is knowing when to end the conversation an walk away. Having a sick child is so difficult, we figured that our energy would NOT be well spent on convincing doctors, but on getting help. Now that are kids are well, we have energy to spend on the convincing...But be firm and convincing!!!

 

I know its tough, and I hope some of it helps. Good luck and I hope that your children get the help, attention and care they need.

 

 

Edited September 14, 2016 by Gpookie

[Plum99]

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Edited September 23, 2016 by SSoda

[Wombat140]

Off the top of my head, I'd start with the actual symptoms - things like Gpookie mentioned, e.g. what the actual problems are, the fact that they seem to coincide with infections (if they do - can't remember what the details are with yours), things like that. And then only get on to the more "controversial" sort of tests after that, if she's still asking questions. Give her a chance to have a think about the symptoms for herself with an open mind before possibly provoking a reflex reaction by mentioning PANS!