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tu4four

I cannot keep a primary care doc--I am just venting

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I think I have ruined another doc relationship today. I came in to see her for a pain in my side, and I really did plan to be very tight-lipped and not mention lyme (I am positive, too) or PANDAS.

But apparently a couple of years ago i mentioned Lyme and my irregular, wacky heartbeat to her partner so it was right there on the record and she asked me about it.

 

She asked me if I was treating it, like she believed me, and I just couldn't help myself. I told her about my kids and PANDAS (which she said she had heard of) and I ended up telling her all about our shameful (although I didn't use judgmental words) pediatric system all over this city.

 

I could see after I had said all of this that she was distancing herself--instead of now believing, she was re-evaluating my sanity, so to speak, especially after she asked me about the flu shot, and I explained (like talking to a friend) why we don't get it.

 

I know my kids are sick. And at the worst of it all--in my daughter's most intense raging times, my husband and I have talked about the fact that when things are not that bad, we constantly ask ourselves and each other...is it really that bad? Maybe it 's just behavior. We have both said, " if I ever wonder if it was really that bad, remind me--yes it was (is)"

 

But here we are again, back on a low dose of abilify, my son is not as out of control(but he's certainly not himself again. And my husband is not really sure that they Are as sick As I think are. Let me change that. He knows that my daughter is not well...4 years of psych meds and her current condition tell him that. But he doesn't necessarily agree that it is because of lyme/infection/PANDAS

 

I feel crazy. My mom talked to my husband last time she was here telling him I look tired, discussing what was going on...he told her that I definitely believed that it was lyme, but that he didn't necessarily agree with that 100%. She asked him why he didn't tell me that (which he had).

 

I'm just tired of fighting. But what is my alternative? And I'm the one who is there the most dealing with the fighting, the raging, the not listening and disrespect....this is not the family environment that I was planning.....

 

Sorry...I know I'm just complaining....

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Sorry you are having issue both at home and outside of home :(.

 

I have trouble with getting/keeping a primary for kiddo even before she was dxd with PANDAS. When I take her in, even for a sore throat, the pedis usually tell me to take her to an ER since they do not want to treat her because she is medically complicated. ERs do not usually want to treat sore throats since it is not a medical emergency so they say go to your pedi.

Edited by mayzoo

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I know that can be so frustrating. You do have pandas docs, don't you? If you do maybe you could compartmentalize the pandas. I'm not saying don't ever mention it, but let your PCP take care of all your family's primary care needs, but when its a pandas related issue take it to your specialists. Your PCP can't argue with that if you are notweeks asking her to step outside of her comfort zone as far as prescribing treatments for things she does not understand. Then see if your specialists will write her a letter or send office notes and that will reinforce your concerns and clarify the diagnosis while taking the pressure off of both of you. It sounds like you really want her to understand and be supportive. Perhaps she will be if you build upon it slowly and give her supporting documentation from other docs.

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Your post grabbed at my heart...

 

I recently realized that my stomach drops to my feet when I learn we have to meet a new doc/specialist. The treatment we have received has caused PTSD type symptoms in both dh and myself - to the point that we are managing physical symptoms at home that 99.9% of the parent population would take their kids in for.

 

We have lengthy conversations on when to go in - her medical history is so complicated that a part of me wants to hide the history so they can just see her with new eyes, and the other part of me wants to hand the whole sordid story over in the hopes that the new person just may have a new piece of information that I need, or an advocate to lead to something else.

 

There are some days that I wish for symptoms/diagnosis that fit into a nice clean checklist....

 

I hear your vent, and you are not alone!

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