Do we have to do EVERYTHING?

[kos_mom]

Dr. L ordered LP for DD in Septemeber. She had it September 18. First visit after (first week of October or so) she said it showed nothing. I asked a couple of weeks ago for the results to be faxed because we were going to another doctor. I received only the first page of the report from the hospital that did the LP saying, essentially, the LP was done. Last Friday when I was at Dr. L's office, I asked for the complete report and it turns out they had no lab results. Apparently they were never sent. Today I went in person to the hospital to get the results and found results from more than half of the tests are missing, and they include the most critical ones. Finally I got someone by phone at the hospital who acknowledged that the "system" appeared to have cancelled out the tests. She is investigating further.

 

Again, do we have to do EVERYTHING? Apparently so.

[JAG10]

RIDICULOUS!!!!!!!!!

 

And underscores why parents should not/cannot accept these ...."we'll call you with lab results IF there's a problem" policies.

[dcmom]

In NJ, our labs/ hospitals only do a FULL lyme panel if the initial WB screen comes up positive. That is their policy, and it is next to possible to get them to do anything different.

[kos_mom]

So the very nice lady at the hospital got back to me and said tests were cancelled because there wasn't sufficient fluid. But they didn't refer to anyone to prioritize which tests were most critical. And they didn't inform anyone some of the tests were cancelled, not to mention they didn't send the results. The lady was very apologetic and even called up some of the specialty labs where the fluid had been sent to to see if they had some fluid still stored to run the most critical test. (Since it was so long after the fact, all the vials had been thrown out.)

 

The main reason for the LP was to rule out MS, which requires a test for ollicogonal bands, because DD has spasticity in her legs for which she is taking baclofen, a drug mostly prescribed to MS patients with exactly this issue. That test got cancelled--but they did run an HIV test (apparently pretty standard everytime they run an LP), which was completely beside the point.

 

Can't imagine getting another LP at this point--DD got aseptic meningitis in November and had to have an LP in the ER for that. Had I known they failed to run the crucial MS test earlier, I could have asked for it to be tacked on.

[nicklemama]

The short answer to your question is yes. This has happened to me twice where the lab did not run all the requested tests. One time, they did not do the ASO and antiDNAse B which is the main two I went to have checked. Two different labs, too.

[kos_mom]

Nicklemama,

 

Have had that too. Got a followup to Myco P IGG and IGm and they failed to do the IGG that was ordered. The IGm was up (but not over 700, the cutoff for normal) but without knowing whether the IGG was up hard to tell whether the infection was on the upswing or the downswing. I am not having another lab done without checking what they write down against the prescription. I will unapologetically call every doctor's office afterwards to have them fax me the lab results. And I will call the doctor up to question every abnormal result--we've had ESRs of 85 and CRPs of 22 ignored. Have also had an ER fail to report to the doctor or me a positive 48 hour strep culture.

 

Why bother with the labs if they don't send them to the doctors and the doctors don't look at them?

 

Ko's Mom