I need help. Don't know what to do next.

[Hmrz]

My ds is 9 and was dx with pans recently. His symptoms started in December 2012 and it has been up and down since then. We finally explored pandas about 5 months ago and started abx (aug/clav) after 2 months did 5 day steriod burst with good results. Although behaviors improved dramatically we have never gotten back to baseline. Our ped sent us to childrens hospital neurology dept and they did ext bloodwork. That is where his dx came from. The neurologist prescribed ivig which was denied by insurance. We then were referred e to rhuemotologist that said we needed further testing but saw nothing remarkable. We just saw a pediatric infectious disease specialist at cedars Sinai pediatrics and she told us with the amount of antibiotics our ds has been on all symptoms would have cleared by now and the symptoms are prob psychiatric and the improvement coincidentally happened at the same time as treatment. That because he's still not able to go to school it is not medically related and if it were her child she would take him off strong abx. I guess I feel a little beaten down and I'm not sure what to do. If anyone has any imput or help I could really use it. I'm starting to doubt my instincts.

[MomWithOCDSon]

Unfortunately, even those medical professionals "informed" of PANDAS/PANS don't understand all the ins and outs of it, and the research . . . particularly with respect to treatment protocols . . . is ongoing. Last time I heard, even those PANDAS specialists actively engaged every day in diagnosing and treating PANDAS/PANS patients do not agree on treatment protocols.

 

Meanwhile, those of us in the trenches here have witnessed the individuality of our kids' responses to various treatment regimens, and are also first-hand observers of what can be a lengthy recovery period; my DS, for instance, took Augmentin for 2 years before we were successfully able to wean him from it without severe and dramatic behavioral back-sliding.

 

Will the neurologist who ordered IVIG help you in an insurance appeal process? Have you seen and/or would you consider seeing one of the other prominent "PANDAS docs" who have more experience with respect to treatment and dealing with the insurance companies?

 

I think you should follow your gut/instincts and find a doctor who will help you. Even the leading doctors and researchers in the PANDAS field (Dr. L., Dr. M., Dr. Swedo), in a panel discussion on the topic of treatment protocols, were not against long-term antibiotics on the basis of potentially encouraging antibiotic resistance; they were against it on the basis of c-diff, which can be difficult to get rid of and can cause severe problems of its own. But, at least anecdotally, it appears that most people can be protected from developing c-diff by proper use of probiotics.

 

So, since you've seen improvement via PANDAS protocols (even if not back to "baseline"), I would continue to push for treatment while remaining vigilant and keeping a journal of your child's progress, lack of progress, behaviors, etc. Sometimes, we think our kids have ceased improving because the monumental gains they experienced at the beginning of treatment can fade over time, and the healing trajectory slows down, becomes more subtle. That's one reason why journaling can be very helpful; it can help you see, over time, what gains are still coming, as well as documenting it for caregivers.

 

Hang in there!

[pr40]

If you had a dr who ordered IVIG, I agree with Nancy, would pursue that possibility. I do think, however, that this is your best bet at this moment. Say, you get to a PANDAS specialist, what's the most he/she can do for you? order IVIG, right? which is what you already got.

If you have this dr in your corner, you have a chance of fighting the insurance. one diagnosis that they should not be able to deny is encephalitis

Edited February 12, 2014 by pr40

[Hmrz]

Thank you so much for responding. We appealed immediately after the denial and were again denied. They did not dispute ivig was the proper treatment they just said any treatment for pandas is experimental and therefore not covered. I know our doc wants to do further testing including a spinal tap. I'm not sure if that would help with a encephalitis dx. We are debating paying out of pocket for ivig.

My ds was put on abilify and zoloft when this all started and I have weaned him down to the lowest possible dose. ( by the way those meds were a breeze to get!) he also had his tonsils removed about a month ago but we did not get the positive result we had hoped for. Sorry I know this is coming from all directions and scattered, I just feel a little less alone after your responses!

[Dedee]

What types of testing have you had done? Have they only tested strep titers? You should be testing for other infectious triggers as well. Has he been tested for Mycoplasma? If he isn't getting back to 100% it may be because he has another underlying infection that is not treated by your current antibiotic. Many PANS kids also have Mycoplasma infection and are not aware of it. I would encourage more testing for viruses and at a minimum Mycoplasma.

 

Dedee

[Hmrz]

We had pretty extensive blood work done and I think that you are absolutely correct. Low neut% high lymph% high mono%high aso and high Ana low WBC, Lyme neg. It seems from my research that viral is definitely part of the picture. I have been reading about valtrax and positive effects, any thoughts? Also does anyone have advice about going forward with the lumbar punch? As always thank you for taking the time and energy to help.

[mama2alex]

Hi hmrz, I'm sorry you and your family are going through this. Many families discover their PANS/PANDAS child has Lyme, but it is very difficult to test for. What test did your doctor run and what lab did they use? Did they test for co-infections such as Babesia, Bartonella, and Erlichia? Did you get a copy of the test results?

 

My son was also 8 (almost 9) when he had a sudden onset of PANDAS symptoms. It took15 months to figure out he had Lyme and co-infections and start the treatment that finally started to bring him back to us. This is not the path for everyone, but it should be explored sooner than later, since it is so common in PANDAS/PANS kids.

 

If you want to understand more about Lyme, I'd highly recommend the book "Cure Unknown" by Pamela Weintraub. It doesn't talk about PANDAS, but will give you a good understanding of how to truly figure out whether your son has Lyme and why it is so difficult to diagnose.

[Hmrz]

Lyme disease AB blood is the test listed. I will def check out the book. Childrens hospital lab did the less exotic labs and the ones that took more time were through quest labs.