Additional Tests for PANS when initial results negative?

[Albymom]

Hello

 

Our 9 yr old was diagnosed with ADHD in January, and then Tourette's, Generalized Anxiety Disorder, and OCD in March. The ADHD was not a big surprise, but the others were a complete shock. We have no family history of these conditions (other than "mild" anxiety); they all came out of nowhere. In addition to the behavioral changes that come with GAD and OCD and the tics, she also became uncharacteristically moody, which everyone chalked up to hormones but it still didn't seem right to me. Other than a couple of days, she was able to hold it together to attend school, but usually at night she was exhausted and highly emotional. I would not call the symptoms as severe as some of what I've been seeing on this board, though they are at times frightening.

 

I discovered the existence of PANS/PANDAS last week after randomly searching on "piano playing hands in children". Our daughter developed this movement as one of two omnipresent movements (the other is a slight but constant jaw movement). I thought it was strange that a tic could be omnipresent, even sometimes when she sleeps. When I read the symptoms of PANS, especially the chorea movements, the hairs on my arms stood up. I could hardly sleep. We had her tested the next day.

 

The pediatrician ran a strep test (swab and blood), a full CBC with Differential, an AntiStrep 0 Titer, and a complete metabolic panel. Per the Dr, all results were normal (and I reviewed them myself). We're still waiting for some sort of antibody test result, but I don't have confidence it will be abnormal since it's been several months since the symptom onset. She last had strep in 2011 but no known infections since. I really doubt she could have Lyme disease; she's never had a tick bite. There was no marked illness before she was diagnosed, however she had countless ear infections each winter from age 0 - age 6. She also had a UTI when she was 4. I have a history of auto-immune illness.

 

I'm thinking of requesting a Cunningham Panel, but in the meantime was wondering what you think, and what other suggestions you might have. I am confident we have solid doctors and a solid Child Psychiatrist on the case (both of whom are open to exploring PANS), but I'm worried these results will discourage them from investigating any further. I want to be sure I advocate for every possible test before we abandon this idea.

 

Thank you

 

 

 

[jan251]

I would look around for a PANS/PANDAS specialist. The concern with going through regular doctors is that even when they're open to ideas, they don't have the expertise needed to go about this in an efficient manner. It's hard enough even with an experienced PANDAS doc to get to the bottom of things.

 

With chorea-type movements and sudden-onset OCD, it would seem prudent to continue exploring PANS and, sorry to say, you are a long way off from exhausting possible things to test. Somewhere there is a list of things to test, try here for example.

 

As for lyme, I can't recall the percent, but many people do not have a known tick bite and still test positive for lyme (my own child included; not that lyme treatment has been the silver bullet we were hoping for, at least not yet). When a person's immune system is wacky, lots of different infections can show up. It can get complicated.

 

If you haven't tried already, I'd probably also ask for a trial on an antibiotic.

Edited June 15, 2015 by jan251

[dasu]

PANDAS is a clinical diagnosis at this point. The cunningham panel may or may not be used to re-enforce that diagnosis. Our own kids have had ASO within range yet have severe PANDAS symptoms.

 

I agree with jan, you may try an antibiotic but you should see a PANDAS specialist. If it is PANDAS each flare may get worse.

[Albymom]

Thank you both very much for your responses. I will not give up hope. I will continue to push! I am in contact with the Stanford PANS clinic, as well. The other bit of evidence I have is that our daughter reacted extremely poorly to SSRI treatment, which, I'm told, is rare unless the child has either PANS/PANDAS or a mood disorder.

 

I'm concerned about being perceived as "pushy" or at worst - crazy! I wish doctors would partner with parents on this exploration as if this were their child.

[kmacdonald34]

I was the pushy/ crazy parent. My pedi was open to PANDAS until my daughter had a negative strep test and then did not want to pursue it. She thought a negative test meant not PANDAS. I had to fight/ push for a referral to a PANDAS specialist. My daughter sees a team of PANDAS dr and they all agree she has PANDAS. She went on antibiotics and her symptoms went away. A lot of them were similar to your child. I would start with a PANDAS specialist and be that pushy parent. Trust your gut. I hope you get some answers!

[pr40]

don't forget that there are two diagnosis, PANDAS and PANS. Pandas is giving way to PANS since there are many triggers of this psychiatric condition. Besides strep and lyme, you need to check, well, all possible bacterial infections including mycoplasma, others escape me at the moment.

mold can be your trigger as well as can be alergies.

that you have autoimminune conditions is an indication that your dd might, too.

Stanford will help you, apparently, if your child has standard presentation and your dd seems to have that. just insist that it was sudden which is the key word for them.

[rowingmom]

Our daughter's PANS symptoms were caused by a bartonella infection. Bartonella is described as being one of the lyme coinfections, but can be a stand-alone as well. It is also known as cat-scratch fever.

 

The ticks that transmit lyme/co may be as small as the period at the end of this sentence. A significant number of people do not produce an EM rash upon infection. You can not assume she isn't infected just because you haven't seen a rash.

 

Even if you assume your daughter has never had a tick bite, please realize that many of these bacteria (bartonella, babesia, mycoplasma, ehrlichia, anaplasma, rickettsia), can be transmitted by arthropods other than ticks (deer flies, horse flies, bed bugs, fleas, lice, perhaps mosquitoes) as well as congenitally.

[mommybee]

First, what you are describing absolutely sounds like PANDAS/PANS rather than Lyme or Bartonella, which does not typically include chloroform movements. Second, you are smart to contact the PANDAS clinic at Stanford. They are among the leaders in the field. If you can get an appointment with Dr. Jenny Frankovich (https://med.stanford.edu/profiles/jennifer-frankovich), you'll be golden. The doctors there may run the Cunningham panel, although many physicians don't use it because it's expensive and the information it yields doesn't really provide much information about treatment. Lastly, and certainly least importantly because your daughter really sounds like she may have PANDAS/PANS, my understanding is that a diathesis on SSRI medication, while uncommon, is not at all PANS specific.

 

Good luck and let us know how it goes at Stanford.

Edited June 30, 2015 by mommybee

[mama2alex]

I agree you should check for tick-born infections. Our son has had mild chorea movements at times and he has Lyme, Bartonella and Babesia. A child does not necessarily have one infection or another - the immune system is the problem so it's common to have a number of infections going on, including bacterial, viral, fungal and parasitic.

 

Please find a Lyme-literate doctor. They are well versed in PANDAS/PANS now, and can test for all infections that might be impacting her.

 

Also, the fact that you have chronic health issues, and that she had immune system problems from birth (chronic ear infections) indicates the possibility that you have undiagnosed Lyme and passed it to her in utero. This turned out to be the case for us, and my son didn't have the severe onset of psychiatric symptoms until age 9.

[mommybee]

Given the classic PANDAS symptoms you describe and their abrupt onset, I wouldn't jump to the Lyme conclusion. If you don't feel sick, it's a stretch that you have it and passed it on to your daughter. Also, ear infections are common for little children and don't indicate immune dysfunction. More likely, your daughter just had small eustachian tubes and/or enviromental allergies.

 

Regarding testing, I'm assuming that the strep antibody test you are waiting on is anti DNase B (ADB) because in combination with ASO, it is thought to catch most recent strep infections. If not, you should probably ask the doctor to do it because it will provide a more complete picture of what's going on in that regard. Remember it's not the strep infection that causes symptoms, it's the antibodies the body makes to fight the infection that cause the problems. This is the reason why doctors are interested in trends and aren't inclined to make a diagnosis based on a single test result, even when positive. Another common and inexpensive test that your doctor may have omitted is anti nuclear antibody (ANA) which can provide some insight into immune function.

 

If it were me, I'd be on the phone to Stanford every day, asking if there had been any cancellations. The sooner you get her in there, the sooner you will know what's what.

[Albymom]

Thank you for your suggestions, everyone. I have truly appreciated your perspectives. They have helped inform my questions for the Drs.

 

Here's an update.

 

The first appointment was spent reviewing her full health history and giving her a thorough physical. Based on her history, they're running multiple additional blood tests including histone levels, Celiac, another strep, Immune-complex panel, TSH, an HLA marker, and a few others I can't remember. They mentioned noting from her original blood work that she has elevated monocytes and eosinophils levels, which they said they often see in these PANS/PANDAS cases but they were also clear and careful to say they don't yet know what, if anything, this might mean. The test results will guide the next steps. In the short term, she'll take a daily non-steroid anti-inflammatory.

 

I'm sure this has already been mentioned, but if you find yourself in this terrible boat, I highly recommend marrying your worry to whatever thread of sanity you've got left and creating a brief, succinct, and crystal-clear timeline of your child's health history since birth, inclusive of specific-day dates whenever possible. The more time you invest up front in this timeline, the better prepared the Drs will be when you arrive, and the more time you can all spend focusing on next steps. The clinic requests this timeline ahead of the first appointment, but even if you're not going to a clinic it is well-worth creating if only to avoid repeating your story to numerous doctors.

 

It took me countless hours over several days to compile a clear history. I mined information from her baby book, my digital calendar, emails to friends/family, photos, emails sent from the school documenting strep exposure, and her actual medical records when possible. I thought I may have gone a bit overboard, but the Drs actually requested more information in some sections, specifically regarding exactly when a certain symptom started. And of course, all of it must be as verifiable as possible, since the clinic will do upfront work to marry the official records with your timeline. As my husband said, "They're practicing science." We are extremely grateful for this data-focused approach.

 

If your child has seen more than one doctor (for ex., if you've moved, or if you need records from an Urgent care visited when you were on vacation), be forewarned that the time-consuming, and costly processes of requesting medical records seems specifically designed to prevent you from easily or quickly accessing your own child's history. I absolutely understand the need to balance patient privacy with easy access, however, the current processes are not only bespoke for each institution, but also often archaic (non-digital). It's awful enough witness this change, let alone having to navigate red tape and find time to create a detailed health history timeline.

 

I will continue to keep you updated.

[Albymom]

As promised, here is our latest update.

 

We've had several clinic visits since I last posted. Our experience there has been nothing short of phenomenal, starting from the moment we arrived. I felt truly heard and fully understood by a team of open-minded, caring, and thoughtful professionals who go to great lengths to review medical and behavioral history data for clues and markers, and who completely understood my descriptions of her behaviors, as well as my frequent breakdowns while explaining the experience. They were also very familiar with children who are frightened to death of throat swabs (like our daughter). It is invaluable to have multiple specialty doctors reviewing your case, sometimes all of them in the same room together discussing hypothesis and next steps. Lastly, I never once felt rushed.

 

I am acutely aware of how lucky we are in this respect. In fact, the main reason I have not posted an update to this forum is that I know the struggles of other families trying to find receptive doctors to help heal these poor children. This condition is devastating, and having to dealing with red tape, frustration and short-sighted professionals just adds so much insult to injury.

 

By the time we got into the clinic, our daughter had begun doing much better. Whether or not this was related to the fact that we significantly lowered the dose of liquid Guanfacine (Intuniv) she had been taking remains debatable. In any case, all additional blood work taken via the clinic has been normal, other than a few slight elevations. However, as the wise PANS/PANDAS veterans on this forum have pointed out, the clinic professionals are well aware that there could be many reasons for normal results at a specific point in time (especially after a"flare"), so while we're not sure whether it's PANS, they are actively tracking her progress and bloodwork every few weeks. There's also a theory that the Guanfacine (Tenex / Intuniv) exacerbated an underlying inflammation. She occasionally gets petechial rashes, but we're not sure yet whether the cause is as simple as a common Motrin reaction, or a some underlying infection. In any case, she has been placed on a daily prophylactic dose of Amoxicillin which she will continue into the near future. In the meantime I continue to track dates, doses, behaviors and illnesses very closely. As I mentioned in an earlier post, I cannot overstate the value of maintaining detailed records of dates, symptoms, med doses (including tylenol, Motrin, and any vitamins or supplements!), reported pains, trouble sleeping - anything and everything. A doctor's language is data - especially at a clinic where they're doing research. Having solid data to share with them makes more efficient use of your time during visits, and therefore helps your child faster.

 

I'm aware that our journey could potentially be a long road filled with flares and relapses, but for today we are indescribably grateful that she seems to have returned to "normal", and are soaking up every glorious second. It's hard not to cry even now when I think about the dark place we found ourselves just a few short months ago. I pray that the cause of the PANDAS/PANS symptoms turns out to be a "one-time" adverse reaction to being on too high a dose of medication, but of course, only time will tell. DM me anytime if you'd like to talk.