Your opinion please, is it PANDAS and reoccurrence rate

[JsMom2014]

Hi Everyone,

 

New to this forum and so glad I found it. I was really hoping you give me your "in the trenches" opinion of whether we are dealing with PANDAS/PANS and what a reoccurrence might look like.

 

DD5 has always been a bit of a challenge in terms of characteristics she displayed (inflexibility, ridged, OCD tendencies, sensory issues, etc) but we always assumed it was just her personality. Last May we hit our breaking point in terms of being able to cope with her behaviours and routines and we sought the help of a child psychologist. Within the first session she said it sounds like she has a lot of OCD tendencies to which my husband and I were shocked and didn't really buy it. We just figured all this time she was just a very particular kid. Her routines at the time were around always needing to perform 5 perfect cartwheels in a row, playing a game when we would walk through the door where all had to pretend she was a little girl named Sarah and she was visiting our family etc. We also had a lot of sensory issues around only wearing seamless socks and a couple of shirts she would accept. She got very bad nightmares and started sleeping in our bed every night as she was truly terrified to be alone. At the height of these behaviours, she had also just recently had Strep, Hand Foot Mouth Disease, and developed an autoimmune disease called Pityriasis Lichenoides which basically looked like she had chicken pox for 4 months. The behaviours weaned off, we dismissed the OCD and life from Oct to Dec were good.

 

December she got strep again. First week of January we started with terrible rages that occurred every single day after school. She was very aggressive and abusive towards our family, but mainly me (mom). A few times, our little girl was so scary and out of control I almost called the police on her. Other OCD behaviours started up again as well (she had a circle drawer in her room where only circle things could go), had major separation anxiety. She did have a tic but it only lasted about 2 weeks and was very mild. She started rubbing and pulling at her fingers and tucking her hair whenever she was nervous. By the end of March, the rages weaned off (went from daily to 2 x a week) but the anxiety picked up big time. She was fearful of losing control of herself and hitting me again, she didn't want us to have people over at our home, didn't want to go out to familiar places, had a panic attack at the dentist (never a problem in the past) and has a lot of fears like dogs, needles, vomiting, germs, etc. To date, the anxiety remains and some days are worse than others...but the rages are gone, thankfully.

 

We have been to countless doctors and everyone keeps saying there appears to be a PANDAS link. She is on the waitlist at the hospital for Sick Kids in Toronto to see Dr. Arnold. I think we are looking at November before we get in. She was recently assessed by a local psychologist who diagnosed her with Generalized Anxiety Disorder, Separation Anxiety, Social Anxiety, and has symptoms of Panic Disorder and OCD. Despite the residual anxiety, she seems to be coping okay and our days are much better than they were from January to April... but it is sad to see this anxious little girl we are left with. She even dropped out of her favorite sports because of the "people and performing".

 

Here are my questions:

1. Does this sound like PANDAS to you from our most recent episode (Jan to current) and if so, is it likely that last May was also a PANDAS episode? She has not experienced many tics, nor was the OCD our major symptom - it was the very out of character rages and the depression that followed every aggressive rage where she would beg us to move to another home or tell us her life felt like it was dead.

 

2. My older daughter had strep throat 10 days again. I have been panicking that our dd would also get it and we would be back to the rages... so far, despite her saying her throat felt a little funny yesterday, we have no fever and no signs of infection. Her throat could have also been anxiety related as she gets a stomach ache and feeling like she wants to throw up every night at bedtime. If dd was going to get a strep infection from our oldest daughter I assume it would have happened by now..but let's just say she does...how long after the strep infection is diagnosed would the symptoms start back up again? If it is PANDAS is it a guarantee that a strep infection will bring us out of remission and symptoms start back up? Is there a chance she could get a strep infection and not react again

 

*Note, dd has a history of testing positive for strep but never complains about a sore throat. Several times we have taken her to the doctor because she stopped eating or her voice changes and strep test always comes back positive. She also seems to get yeast infections quite frequently

 

I'm so sorry this was so long. I think I needed the outlet...... Any help or advice is truly appreciated.

 

 

[Chemar]

Hi and welcome

bumnping up your post so others can reply

[chubbermommy]

When she had strep in December, was she put on antibiotics? and for how long? Did you notice that the rages started after the antibiotics were finished, or during?

Edited July 22, 2014 by chubbermommy

[LNN]

Yes, this sounds very much like Pandas (or Pans if the trigger is an infection is something other than strep). You're also very lucky to have clinicians willing to support a Pandas diagnosis. But if they feel this is Pandas, then hopefully they're also willing to do a 3-4 week trial of antibiotics to see if her symptoms improve (they should - tho they may not go away completely - sometimes a few weeks isn't enough).

 

It sounds like you might want to read up on all the ways OCD can manifest itself - it can be especially hard to recognize in a child because they can't always express themselves in adult terms and because young children have magical thinking that can cloud the picture even further. This link might help: http://latitudes.org/forums/index.php?showtopic=6153 - it was compiled by our resident OCD expert. Rages can often occur when OCD rituals aren't followed because the child becomes terrified something bad will happen when the ritual isn't completed.

 

I highly recommend you get a few books about OCD for your child - she may be struggling with how to explain things and knowing that others have the same challenges can really help. Some of the best books for kids are "What to Do When Your Brain Gets Stuck" (specifically for OCD) and "What to Do When You Worry Too Much" by Dawn Heubner and "Up and Down the Worry Hill".

 

If you're seeing frequent strep and yeast infections, a good, daily probiotic would be really helpful for both girls. Give them at least 2 hrs away from antibiotics and preferably on an empty stomach (we take at bedtime) because lower stomach acid can help more of the probiotic make it into the GI tract where it's needed. We use CP-1. Theralac and Truflora are also good products. You want to use something with a good blend of both bifido and acidophilis strains.

 

ACN sells a booklet that's an intro to Pandas - you can find the link at the top of the forum. And browsing through the Helpful Threads for Pandas pinned at the top of the forum is also a good place to start. Pandas is rarely a "one time" event. If a child is prone to an autoimmune response to a strep infection (or other trigger), then things generally return to baseline or something close to normal once the infection is gone but will come back if/when the trigger comes back - such as a new infection or exposure. In general, the faster you can treat the infection and more aggressively you can bring down the associated inflammation and immune response, the fewer "bad habits" the immune system will learn. But even kids who've had Pandas for a long time can recover - it just takes longer. My best advice is to actively advocate for a trial of antibiotics and educate yourself as much as you can to give your daughter tools. Cognitive behavior therapy can be a great help for the whole family as a coping tool.

[JsMom2014]

Hi,

 

Thanks so much for the detailed response LLM. I have been on a research kick all day and I cannot believe how many things are lining up. I went to the drugstore and got print outs for all the antibiotics she has had. She has either had a chest infection or strep 11 times since Nov 2011. That's a lot of antibiotics! I also find an interesting link. In early April she developed a minor facial tic. It only lasted about 2 weeks but it was pretty evident when it was happening. I have videos of it. Long story short..the video I took was April 3rd. I linked it back to her antibiotics list and she was put on antibiotics April 12th. The tic disappeared shortly after. Coincidence? I never tied the two together before.

 

Her anxiety is super heightened right now....and as I mentioned I kept waiting for my dd to get strep or see an increase in symptoms as her sister had strep on July 11th. Went back in my journal and found an entry where I made a big deal that dd actually let her older sister take a sip from her water bottle...this is a huge deal because of the germ phobia. That was July 6th. I think rather than me waiting for dd to get strep from her big sister, I may have just figured out that dd gave it to her big sister in the first place. Shared the water bottle on Sunday, strep occurred on the Thursday.... dd's anxiety is so high right now..probably because she has a current strep infection. I took her to the clinic today to get swabbed. So curious if I am right now.

 

OCD is very hard to figure out....but I am starting to see it. The rages may have been the ritual. It was daily at 4pm. Without fail. As long as we were at home. If we were out she would be very agitated and it just delayed the inevitable rage.

 

The rages started happening about a week and a half after the Dec antibiotics were finished...that is the only date I cannot the trace back to the antibiotics - must have filled at an alternate pharmacy.

[airial95]

LLM's response was pretty comprehensive, the only thing I will add is to keep a detailed log/journal daily of your child's symptoms, any treatments, even what they ate that day if you start to suspect food issues. It seems like you're already trying to go back and connect the dots, but if you keep detailed records going forward, it will probably help you A LOT for your upcoming appointments.

 

We used an excel spreadsheet and scoring system that another parent here suggested (0-3 = typical age appropriate, 4-6 = difficult/challenging, 7-9 = WTF just happened to my kid???) We listed on the spreadsheet each of the symptoms (specific to each child - we have 2 with PANDAS) and scored them each day. We found using a numerical scale kept us objective vs. just taking notes (we found depending on how emotionally drained, tired, stressed we were impacted how we verbally described the days events - but quantifying it helped keep the emotion out of it - but we also did keep general notes like "didn't nap today, missed morning vitamin, 2 kids out from class sick" so we could also see if other things were affecting symptoms.

 

We were then able to use the log to come up with daily "scores" and chart trends in symptoms, etc..

 

An example of things we learned specific to our son using the logs:

 

- At 6 yo he still needs to nap every day because we found naps had a HUGE impact on symptom severity when we cut them out.

- Wetting the bed = + throat culture EVERY TIME for our son and often precedes other symptoms by a day or two (both of my kids also are asymptomatic to strep, no sore throats, fever, etc...) Now when he wets the bed or has a potty accident, we don't wait for other symptoms to turn up before heading for a strep check.

- He will flare from just being exposed to someone with strep, but the symptoms will spike for about 3-5 days, and then subside quickly with no lingering issues after about 2 weeks.

 

 

I think that our logs were probably our most valuable weapon in fighting this craziness, and keeping our family functional.

[JsMom2014]

Airial95 - thanks so much for your advice. I think the number chart is a good idea. I have been journaling since February and you are right, my words don't always indicate severity. On top of that, the journal is at 22 pages already and is too cumbersome to expect doctors to read.

 

Is it common for PANS/PANDAS kids to be asymptomatic? DD has never complained once of a sore throat - despite her multiple times having strep. It makes it so hard. Her tonsils were enlarged but the dr at the clinic said that can be normal for her age. So despite taking a wild guess, it is going to be hard for me to figure this out all the time. Maybe the anxiety is so high right now (and very fidgety) because of her sister having strep. There seems to be a lot of mention about exposure to strep can heighten symptoms too...but does that mean they may not test positive themselves but someone else in the house having strep could be causing the flare up?

 

It feels like a big complicated web right now...and until we meet with the Hospital for Sick Kids I guess we won't know if it is PANS/PANDAS or just flares of her anxiety disorders, unrelated to illness or infections.

 

Our biggest challenge is the psychologist and our family doctor are recommending an SSRI for her before she starts grade 1 in September. We aren't there yet, mentally and part of me thinks that while her days are hard, she is learning to cope... Art therapy seemed to be helping, but she has recently decided she doesn't like talking about her feelings anymore and won't go. Hopefully some answers come sooner than later and we make the right decisions. This forum is so helpful (and very overwhelming). PANS/PANDAS or not, these are the cards we were dealt and we need to get educated quickly to help her the best we can.

 

Thank you to everyone who responded.

[WorriedDADNMOM]

jsmom...PM'ing you now....look in upper right hand corner.

[chubbermommy]

Airial95 - thanks so much for your advice. I think the number chart is a good idea. I have been journaling since February and you are right, my words don't always indicate severity. On top of that, the journal is at 22 pages already and is too cumbersome to expect doctors to read.

 

Is it common for PANS/PANDAS kids to be asymptomatic? DD has never complained once of a sore throat - despite her multiple times having strep. It makes it so hard. Her tonsils were enlarged but the dr at the clinic said that can be normal for her age. So despite taking a wild guess, it is going to be hard for me to figure this out all the time. Maybe the anxiety is so high right now (and very fidgety) because of her sister having strep. There seems to be a lot of mention about exposure to strep can heighten symptoms too...but does that mean they may not test positive themselves but someone else in the house having strep could be causing the flare up?

 

Yes. DS was asymptomatic for strep in the fall; just by chance and luck our doctor tested him and he was positive. He's also asymptomatic for Lyme - none of the usual Lyme symptoms - but he's positive by both Igenex and CDC criteria. But because he's asymptomatic, it's hard to convince doctors to test him when he has a flare up, and also that he actually has Lyme (despite having the test results in front of them). I've tried to come up with reasons why his symptoms flare up - b/c others in the house were sick? probably. B/c a new tooth was coming in? possibly. B/c kids at school were sick? possibly. B/c of a die-off reaction - probably. I think whatever affects his immune system will cause some kind of reaction.

 

Good luck. I hope Sick Kids gives you some help.

[BeeRae22]

I've been where you are and wish you, your DD and your family the best. I would just let you know that one of the most frustrating things about Pandas/Pans is that you will probably not get "the answer" you're looking for. What I mean by that, is that most of the time, there isn't anyone who's going to be able to give you a definitive answer as to what your daughter "has". Push on, do LOTS of research, read everything! Ask questions, question the answers you get, and try to stay positive. I have brought my daughter to countless professionals, and it wasn't until just recently, 7 months into treatment with a well respected Pans/Lyme doctor, that I feel like we're on the right path... You know your child best, keep an open mind, but also always remember that!

 

Best of luck-- this board is great! Full of knowledgable parents that have been through so much.