Purgatory.....

[MissionMama]

Hello all,

 

I have posted a couple of times, and the help I have received has been fabulous. Amazing, really. Our journey has been relatively short....with a severe exacerbation one month ago, right after my DS 11th birthday. Debilitating onset of OCD that then evolved into mood swings, intrusive/running thoughts, and depression...he has missed 4 full weeks of school.

 

Negative for all strep - including ASO titer, Anti-DNAse and Streptozyme. Of course this isn't a surprise for us this is likely not our son's first exacerbation. Earlier episodes were explained away by age, etc. Though we had never seen any signs of the OCD prior to this exacerbation. Anyway, we saw one of the top pediatric immunologists here in our area (Seattle Children's Hospital) and he ran labs in addition to the tests mentioned above: CBC, Paraneoplastic autoantibody eval, Anti Neuronal Antibodies. Of course I called yesterday to see if results were in as we were nearing the 2 week mark. The labs were in, but had not been seen by the doc for interpretation. I asked for the results to be faxed to me, and the assistant begrudgingly agreed. So, here I am with raw data and have to wait until Monday for the interpretation. That said, we had our phone consult with Dr. Kovacevic this past Monday and so I sent him the labs....his response was "Althoiugh Strept antibodies were normal antineuronal antibodies are elevated what would support Dg. of PANDAS. Let's see what happens with antibiotics and/or steroids." (DS is on day 15/21 of abx, with some relief of symptoms on day 5 or so....but then stalled and of course who knows if it is just time or abx that has any effect at all....).

 

My questions.... Besides his blood count being what looks to be all screwed up (low white blood cell count - with high eosinophils and lymphocytes), low hematocrit.... all values were negative for the brain auto antibodies, expect for the "Anti-Neuronal Antibody" that had a value of 31. Apparently this is within "normal" ranges according to the lab (mayo clinic), but is is actually abnormal based on all the other values were zero/negative? And coupled with what Dr. K described as elevated?

 

We are so confused....helpless....and as each and everyone of you knows...how terrible to watch our son be tortured by this.

 

Any input for me???

 

Thanks so kindly.

 

Kristi (on a) MissionMama

 

 

[nicklemama]

Were you looking for some definitive answer that says yes or no to PANDAS? Perhaps if you listed what was out of range someone here might be familiar. Without specifics, it's hard to say. Back to the definitive answer. You may not ever find one thing to point to. Statistics from Dr Swedo say 45% of PANS kids have strep as their identifiable trigger. The rest have mycoplasma, Lyme, HHV 6, H1N1, etc.... PANS is a clinical diagnosis. It takes a combination of symptoms that determines whether a child has PANS or not. Dr K says it appears your son has PANDAS. Your description of onset and subsequent behaviors points to that as well. Dr K has been diagnosing and treating kids with PANDAS for a very long time.

 

Are you concerned you have not seen more improvement with the antibiotic given? What antibiotic is it? Perhaps it's not the right one to address what has triggered this exacerbation of PANS. Fifteen days of abx is barely scratching the beginning of this disorder. If this is not the first exacerbation and your son has gone quite some time with PANS it is likely going to take quite some time to see significant improvement. That's hard to think about.

 

My advice is to give the abx 30 days. See the doctor in Seattle and get his/her expert opinion on what the elevated antineuronal means. Consider trying Dr K's steroid burst.

 

This disease is not a sprint, it's a marathon. My sons first exacerbation was four years ago. It's taken a lot of turns and doctors and tests and treatments to get him where he is today. My sons lab work was mostly normal during all that time. The Cunningham test showed high CamKII and two high antineuronals. In Mar of this year we finally found something abnormal that had not been tested previously, ehrlichia and anaplasma, two tick borne infections. Eight months of treatment for these has resulted in a tremendous amount of improvement in my son, nearly 10 now. We've done yeast free diet, treatment for MTHFR mutations, IVIG twice, long term abx prophylactically. Nothing has helped as much as what we've been doing the past 8 months.

[mama2alex]

My son developed PANS 4 1/2 years ago during his 5th bout with pneumonia. He never showed strep titers, except a very slightly elevated Anti D-Nase B. He too had had an earlier exacerbation at age 5 1/2, during a hospitalization for pneumonia, but at the time we didn't recognize what it was (we'd never heard of such a thing!). We thought it was a reaction to all the meds he was on in the hospital, and it went away in 6 weeks. This is a very common occurrence with PANS/PANDAS.

 

Once it hit right before his 9th birthday, we tried treating with a single antibiotic for months, and we really didn't see any improvement. We tried IVIG twice - one from Stanford and one from Dr. K, 7 months apart - but the improvements we saw didn't last. After 14 months, we went to a Lyme doctor who put him on multiple antibiotics for various infections (Lyme, Bartonella, Babesia, viruses), and rotated them every few months or so. This is when we started to get our son back.

 

We saw something like 13 doctors/psychologists/psychiatrists before we got to our Lyme doctor. The doctors who helped us the least were our pediatrician and the doctors affiliated with large hospitals. They are too constrained by the "evidence-based medicine" paradigm to deal with something this complicated, controversial and new.

 

So don't be discouraged if the single antibiotic isn't helping him. Its much more complicated than that, but you will figure it out. Hopefully, the immunologist had some information for you, but if he did not have definitive answers, don't be discouraged by that either. As nicklemama said, this is not a sprint, it's a marathon. You will get there.

[mdmom]

I highly encourage you to rule out Lyme & co-infections. Many of us here have sought help from a Lyme literate medical doctor (LLMD). These types of docs tend to be very skilled at finding hidden infections and diagnosing on clinical presentation rather than relying solely on lab results.

 

High eosinophils and low WBC is suggestive of a parasitic infection. My son has been battling Babesia duncani (called WA-1 on lab reports) and his lab results always show elevated EOS, low WBC.

[tpotter]

I was going to say the same as mdmom. The low WBC that you mentioned may indicate babesia, as it affects the blood, and both babesia and bartonella can cause the mood changes that you are mentioning. Does he have any stretch marks (typically deep reddish/purple) or indications that there might have been some. They can be, literally anywhere on the body? What about foot pain? Both of the latter or clinical indicators of bartonella.

[MissionMama]

Thanks to all of you.....and helpful to remember (although I'd like to forget!) that this is a marathon, not a sprint. Ugh.

 

Apparently "they" aren't concerned about the elevated eosinophils...but the labs that came back from Mayo show reactive lymphocytes...and this is apparently "abnormal" and indicative of the body fighting an infection as I understand it. We were supposed to start on prednisone yesterday, but since the immuno doc wants to send for the Cunningham panel, I am glad we hadn't started them - literally hours from the first dose! We will get a blood draw on Monday and they will freeze the serum until the actual kit arrives. Hopefully we will see some improvement with the steroids....what should we expect there? I'd be interested in some input there!

 

Did any of have the reactive lymphocytes?? Or know what else that could be indicative of??

 

Thanks so much.

 

Kristi (on a) MissionMama

[anonymous0121]

My son developed PANS 4 1/2 years ago during his 5th bout with pneumonia. He never showed strep titers, except a very slightly elevated Anti D-Nase B. He too had had an earlier exacerbation at age 5 1/2, during a hospitalization for pneumonia, but at the time we didn't recognize what it was (we'd never heard of such a thing!). We thought it was a reaction to all the meds he was on in the hospital, and it went away in 6 weeks. This is a very common occurrence with PANS/PANDAS.

 

Once it hit right before his 9th birthday, we tried treating with a single antibiotic for months, and we really didn't see any improvement. We tried IVIG twice - one from Stanford and one from Dr. K, 7 months apart - but the improvements we saw didn't last. After 14 months, we went to a Lyme doctor who put him on multiple antibiotics for various infections (Lyme, Bartonella, Babesia, viruses), and rotated them every few months or so. This is when we started to get our son back.

 

We saw something like 13 doctors/psychologists/psychiatrists before we got to our Lyme doctor. The doctors who helped us the least were our pediatrician and the doctors affiliated with large hospitals. They are too constrained by the "evidence-based medicine" paradigm to deal with something this complicated, controversial and new.

 

So don't be discouraged if the single antibiotic isn't helping him. Its much more complicated than that, but you will figure it out. Hopefully, the immunologist had some information for you, but if he did not have definitive answers, don't be discouraged by that either. As nicklemama said, this is not a sprint, it's a marathon. You will get there.

do you mind sharing privately with me who your LLMD is? we quit ours last year and have been looking for a new one desperately. thank you