We Have paddles!

February 27, 2016

We may still be up the creek but at least we have paddles!

Summary of report from our test results meeting on Tuesday:  "The test results show immune dysregulation (both inflammation and lack of mounting an appropriate immunity), INFLAMMATION (high WBC, CRP, ANA, high centromere, high brain antibodies) and evidence of PANDAS/PANS.  In addition, ... metabolic problems including MTHFR defect and folate antibodies indicating a need for FOLINIC ACID (LEUCOVORIN). We need to treat each of these... continue to prevent further infections and boost her immune system."

The human mind continues to baffle me, particularly the way mine insists on trying to make everything okay. It's a gift to be programed to see the positive side of things, to feel mostly optimistic, the mind instinctively seeks to find solutions in the face of problems. It's a quality that sustains you through rough times, gifting you with the ability to live life to the fullest with joy and deep gratitude. Then again, "a strength overplayed"; this insistent need for everything to be "okay" and make it so when things are very clearly not at all okay. I am slow on the uptake.

Conversations with Myself

Me:  So she probably shouldn't be around anyone who has or has recently had an infection. How the heck will that work with school? 

Me: Well, the  prophylactic antibiotics will provide some defense.

Me: Okay. What about colds and viruses? Anything that triggers an immune response causes really tough behavioral symptoms. 

Me: The Lysine is an anti-viral and if we see symptoms and there haven't been known infectious triggers we treat with an additional antiviral.

Me: So, infectious trigger = increase antibiotic for five days.  Viral trigger = provide additional antiviral. Got it. The doctor also said we can also increase the yeast probiotic when we see symptoms flare. 

Me: Yes. And remember, we are treating the underlying conditions as we go, hoping to repair damage and boost the immune system. It is a slow process, with lots of ups and downs, trial and error, and hopefully more steps forward than backward.

Me: Okay. We got this.

Reality

My daughter has an autoimmune disorder. Something in her body doesn't work the way it should to keep her safe and healthy.  It sinks it to varying degrees in fits and starts. A new normal. How do we compensate for what her body can not do for her? My immune system reacts to these invisible triggers and I am unaware; it does what it needs to do.  My daughter's immune system reacts and we see behavioral symptoms like sensory issues (clothing feels so horrible that getting dressed is a traumatic experience for all), heightened agitation (sudden angry reactions to seemingly benign stimulus), emotional lability (extreme emotional reactions to just about everything, all day long, day after day), insomnia (waking up multiple times a night, unable to fall back to sleep for any length of time), OCD (although fleeting and mild we began to see obsessive thoughts and behaviors just before we started treatment). There is more but those are the big ones.

One Size Does NOT Fit All

The descriptions on the PANDAS Network website explains why we delayed seeking a diagnosis for so many months and why some children suffer for years longer than necessary. Delayed treatment can result in permanent neurological damage and additional medical complications, making treatment and recovery far more complex.  "Some children's onsets are clearly debilitating and they become near catatonic and homebound. Other children can function at school and then fall apart at home for hours on end." 

Always able to hold it together outside of the home we incorrectly concluded that our daughter was "capable" of controlling herself and her emotions but for some reason was choosing to act out at home. We've also learned that not all children have overnight sudden onset like so much of the literature describes.

"PANDAS symptoms may have flared in a lesser manner for weeks or years prior to the acute onset but often readily disappeared or lessened over time. If untreated with antibiotics generally we have seen a myriad of other symptoms will intensify in the weeks and months post-acute onset." 

This was our pattern. We saw temporary yet intense increases in sensory issues, agitation, and emotional lability for a year or more before the acute onset of debilitating symptoms in the summer of 2014. 

I am not sure. Seeking to accept and devour each piece of information, to view this illness from every possible perspective, twisting the mind to find a sense of security in a new "normal" that is unpredictable, can all be utterly exhausting. Feeling confident about handling something we don't fully understand, learning to manage variables that are not within our control, honing skills to recognize seemingly random and invisible symptoms: this is the new normal. The balance between keeping your child safe and protected while giving them a full life, rich in experience is something we begin to practice.

Navigating the ups and downs

We returned home from our consult with Dr. O on Tuesday to find a child flaring. That's the insider term: flares are known as the sudden onset of intense symptoms that come out of nowhere because the immune system sees things before we do. A day later her sister is coughing and dripping with a serious cold (at least we hope it is viral and not the return of her strep infection). After a full month and one week of beautiful calm we watched our daughter dissolve in to that dark place, screaming in frustration and anger, sobbing with overwhelming disappointment and sadness, manically bouncing around, loudly keeping her body active during the in-between times when emotions are not running high. Sleep is disturbed and mornings are more intense once again. It is not as bad as it was but still a stark contrast to what the last month has been.

We may be up the creek but at least we now have paddles! To look on the positive side, because that is what my mind must do, we are thankful to have a game plan this time. For the first time, we know. We immediately increased supplements that target symptoms, added medications that address infection and inflammation, and are doing our best to keep her calm. By yesterday afternoon she was better. The symptoms are still there but far more manageable than they would have been a month ago when we didn't know how to help. I am not feeling so utterly helpless now...at least not all the time.

I still want to make this go away. To think it in to some reasonable and manageable thing. But this is where we are. Learning, watching, protecting, supporting. Parenting, in just a bit of a different way.