Pediatrician Won't Do Lab Work

[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.

[MaryAW]

It sounds like you need to go to an experienced PANS/PANDAS doctor. You can try posting with the subject: PANS/PANDAS doctors in Colorado or you can try the PANDAS Network directory:

 

http://pandasnetwork.org/researchandresources/find-help/usproviders/

 

Here is a link to a thread that was pinned in the Helpful threads section:

 

http://latitudes.org/forums/index.php?showtopic=5023

 

If you want to try to educate your pediatrician, here is a link to a website set up by the best PANS docs in the country:

 

https://www.pandasppn.org/

 

It is worth traveling if you have to and spending the extra money now to see a great doctor, rather than have your child (and your family) suffer needlessly.

[Mayzoo]

Blood work does not make or break a PANDAS dx. I absolutely agree as my kiddo has NEVER had high ASO or anti-Dnase. Hers have always been low, even in the middle of a 60 day bout with strep.

 

However, it can help you ferret out any other infections/viruses you may be dealing with that also need to be resolved. Read a few siggies around here and you will see the most common issues our kids face. There can be sadly a lot more to being diagnosed with an autoimmune disorder than just strep and lyme.

Edited April 17, 2015 by mayzoo

[BeeRae22]

It's hard to imagine a doc that's willing to diagnose Pandas/Pans won't do any bloodwork! I would try to find someone more experienced. While it's a clinical diagnosis, at a minimum they should still be running some labs!

 

Penn isn't really standard treatment either, especially a prophylactic dose. You might want to consider trying Motrin around the clock in the meantime-- see if that helps.

 

Good luck....

[4Nikki]

We brought DD o her primary care doctor, asked her to prescribe antibiotics for strep she refused said she was ok, insisted she check her titters which came back positive, decided to find a new PCP.

[Mom23boys]

I am new to the board with two diagnosed boys two weeks ago but not new to the disease (all three of my sister's children had it and her oldest was very severe). Her youngest child had 7 documented cases of strep in one year and never raised an ASO or Anti Dnase titer.

 

Unfortunately, titers are not the answer. IVIG can be a godsend but is expensive! To get it covered you need to demonstrate a failed immune system (insurance companies differ). The PANDAS kids I know personally (my sisters and a few others) have all failed the immune titers tests and have all had IVIG covered. It has worked tremendously well for them.

 

The high strep titers will do nothing to justify the IVIG, at least under our policy. I would suggest you read your coverage and see what you need. . .

[Mom23boys]

Oh and it is interesting to read that penicillin is not standard treatment is that is what Dr. Latimer prescribed my two boys 2 weeks ago (via the Bicillin shot). It is something she uses a lot, and has seen a lot of success with. Crossing fingers!

[kmacdonald34]

My pedi was reluctant to run tests too. I pushed for tests and she did them and nothing came back as flagged and she said PANDAS was not a possibility. But after doing some research, I found you don't need positive strep or titers for PANDAS so I went found PANDAS dr. All 3 diagnosed my daughter with PANDAS and there was no blood work to back it up so I would try and find a more expert PANDAS dr. My daughter has been on amoxicillan for 2 months and it has worked great. Good luck.

[Mom23boys]

The previous poster brings up a good point. If you run titers and they are negative, does that hurt you? My sister spoke to a doctor at the NIH after her youngest had negative titers and positive strep x7 and he said the titers are "interesting" but not diagnostic.

 

Could it be the immune reaction to the cold making him flare? Rather than a strep infection?

[kmacdonald34]

One of the dr my daughter said that even though it is not confirmed strep that triggered PANDAS he believes it is. He also said other infections could still trigger PANDAS flares. So yes, the cold could be making him flare even though that might not be the initial trigger.

[nicklemama]

If you have been pushing for a year with this doctor, you need to move on. If I had waited for my pediatrician to test my son 5.5 years ago, I'd still be here waiting. Find a doctor that understands and treats PANS. You don't have to jump to IVIG without testing. Test for lyme too.

[EAMom]

Be sure to get throat swabs on everyone in the house too. My PANDAS dd never had elevated titers, but both her and her sister (no symptoms) were positive on throat swabs. Do the 72 hour swab if the rapid is neg.

 

Also, PANDAS dd had vaginal strep, and non-pandas dd had periananal strep.

[EAMom]

this might also be useful http://iocdf.org/pandas/

[JoyBop]

I agree that bloodwork can be helpful at times but it's not an end all answer. It was helpful in our case because we had documentation of all the changes in behavior which coincided with a strep infection. At the time no one made the association. It was 6 months later hat a local psychiatrist suggested the disorder as being the culprit. We tested him again along with bloodwork and it confirmed strep. However we also learned that our son doesn't make any anti d nase so unless we catch an active elevated ASO it's of no help.

 

At MGH they tell us not to chase the Titres as its not all that helpful. They don't test the blood any more than every six months unless there's a severe flare.

 

To the original OP I want to say that two weeks of abx is not a long enough time to see dramatic effects. It took a minimum of 6 weeks for our two children to see any dramatic improvement. My advice is to be patient, keep taking those abx and in the meantime find yourself a good doc that does treat pandas seriously. Good luck!!