Pages

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.


Our Daughter's Return

February 22, 2016

Healing

It couldn't be this simple. Story after story of children lost in this illness after years of treatments, it couldn't be this simple for us. Kids spiraling out of control, downward in to a hell made of their own minds. Painful IVIG treatments providing brief glimpses of healing only to have symptoms return and snatch children away again and again. Test after tests that uncovered nothing or everything. Parents forced to quit their jobs because their children could not be left alone, could not function at school, and had no one to help them. Families isolated from the lives they once knew because children were too sick or too afraid to leave their homes, as terrifying anxiety and OCD gripped their young minds. Children, having had every treatment available, being admitted to psychiatric hospitals because they can no longer be cared for at home. And yet, here we were just weeks in to treatment, seeing almost a complete turnaround. Three supplements. Could three supplements really relieve almost all of our sensory symptoms? Tame the agitation? Restore calm? Bring the gift of peace to this child's mind, body, and home?

Dr. O was complete in her assessment, reviewing every medical detail of my pregnancy and the birth of our daughter. Explaining that the antibiotics I took during my pregnancy would have affected the flora in my daughter's gut, as would the antibiotics given to me during delivery, and all the courses she had as an infant for the many infections caught at daycare. "She will have a strong immune system." people consoled when every six weeks a new cold turned in to yet another raging sinus or ear infection. Oh how I wish that could have been, but in reality the opposite was true. For whatever reason, perhaps a predisposition from the beginning, our baby was not bolstered by all the illness but weakened by it. The antibiotics only served to complicate existing gut and immunity vulnerabilities.

Perhaps a flu shot at a time when our preschooler was sick and her immune system compromised, could have been the weight that tipped the scale. Maybe there was just one infection too many or a badly timed virus. That high fever she had at age three or four, followed by a rash and eventually peeling hands and feet could have been a case of undiagnosed strep. We will likely never know, but somewhere along the line things went wrong, the immune system was damaged, and illness set in, slowly building toxins in her system and causing inflammation in the brain.

Dr O ordered more blood work than I could have imagined. She drew the blood herself, softly reassuring my daughter (and me) that it would be over soon. As I held a pleading, scared child on my lap I wanted nothing more than to take the pain and fear away. It hurt. It took a long time and even longer when the first vein collapsed and the other arm had to be had. Two hours after we had arrived we departed with more information, some good theories of what was going on, and a very traumatized little girl.

I want her to remember the beautiful dogs that played with her, licking her face until she giggled out loud. I want her to remember the artwork she was asked to create to hang on the wall of fame. I want my daughter to remember the amazingly smart and kind doctor who understood exactly what we were going through because she had walked her son through the darkness of this illness when he was stricken years earlier. I want to erase the blood from her memory but I can only keep the other  memories alive by remembering with her, the day we found someone who could help.

Our parting gifts looked simple enough; a therapeutic grade detoxification probiotic, yeast supplement called Saccharomyces Boulardii, and a bottle of Lysine which can be found in any pharmacy. Continue with her regular vitamins, the magnesium drink, and the Epson salt baths we had been doing for months. We packed up our bag, scooped up our daughter, and drove the 2-hour ride home with an exhausted little one in her car seat, wrapped in a blanket, clutching the bandaged places on her arms where she hurt. A light dinner, a few new supplements, and our babe was tucked snuggly in to bed.

Relief and Return

That evening, around 11:00 PM I heard the whisper alarm, "SHE'S UP!". My husband and I had perfected this quiet alarm over the last two years because it gave us our only shot at getting our child back to sleep within a reasonable time, which for her was still 30-40 minutes. This alarm said that Amelia was not just stirring but up and on the move. One wrong sound or the slightest stimulation meant she could be awake for HOURS. My body knows this whisper alarm and I snapped in to action before I was even consciously aware. I turned off the lights closest to me while my husband hit the kitchen switches and the moved quickly to our daughter's side because he was closest. But then something completely unexpected happened.

Instead of running to her bedside to quiet her before she started yelling for me and waking her sister, my husband met her at the bedroom door as she walked sleepily past him. He froze and with her eyes half closed she made her way to the bathroom, did what needed to be done, and walked back to her bed where she got in bed, pulled up the covers and went immediately back to sleep. That hadn't happened in years. The day's exhaustion is probably what enabled her to sleep so well but nothing could explain what happened the next morning.

Real treatment would begin once test results were in, but in the meantime we knew we might see some changes as we started to boost her system the few supplements I mentioned above. It felt good to be able to do something, finally. We woke up that morning and got what we never expected, not in a million years. So much of a change that I was convinced it couldn't be from the supplements we had given her only 12 hours prior. As suddenly as symptoms had come and gone for years, these supplements worked in taking almost all of them away. THE. VERY. NEXT. DAY. AFTER. our appointment and her first supplements my daughter returned to me.

It has been a month since then and except for a few days when symptoms returned for reasons we now understand, there has been no clothing sensory, no signs of that fleeting OCD, and the agitation and emotional lability is all but gone. The remaining symptoms are mild. Still waking a few times a week our daughter can usually fall back to sleep and sleep until morning. A small degree of sensitivity about certain pieces of clothing remain but they are managed independently and not a problem anymore.

It has been a month and we sailed past another milestone today. We ended a ten-day break from school, winter vacation, with a beautiful return to our typical morning routine. For the last year and a half, return to school days were guaranteed to bring epic meltdowns from Monday straight through to Friday, even more intense than the usual. This  morning was different. My daughter had a nice breakfast, chatted with me, got dressed, played nicely with her sister, and happily skipped out to the bus. I am stunned but starting to believe.

We are, at least at this point in time, one of the lucky ones. I am incredibly grateful that we didn't have to spiral down as far as so many suffering children have, and just as grateful that the first little treatment we tried has worked so miraculously. We meet with Dr. O tomorrow to review all those tests she ran and I am curious to see what they show and what other therapies or treatments she will recommend.  We may have a long road ahead of us but what we have now is hope and direction and that is enough for now.  And so we hold breath in anticipation of what is to come.

Just in Time Diagnosis

January 12, 2016

DIAGNOSIS

Question. Denial. Doubt. I watched every video of every physician I could get my hands on. I joined three online support groups. In my gut I knew this was it but my head couldn't let my heart get too far ahead. After all, we had no consistent OCD, no tics, and no cognitive dysfunction.  The children I was reading about were far more severe, unable to function at school, some unable to leave their bedrooms or houses, raging, Tourette-like tics, repetitive movements, some even being hospitalized. We weren't "that bad". Our daughter went to school every day, listened and learned well, and had positive and healthy relationships with peers. I couldn't remember any strep infection but then again, PANS is the version that doesn't require strep so that didn't rule us out. I finally posted my doubts on a PANDAS/PANS support group and one mom responded.  This mother of an adolescent daughter who hadn't been diagnosed for years after onset told me her little girl started off very much like my child. Mostly sensory at age 4 and 5 but full-blown onset of tics and crippling OCD by age 9. "Don't wait!" she cautioned. "Catch it now." she said. "Maybe your child doesn't have to suffer like mine did because we didn't know."  Whatever doubt I had been holding was replaced by an urgency that shook me to my bones. What if we do nothing and one day she sounds like these other children? There would be no turning back. No second chances. Only one chance to get it right and do it now. That was enough for me.

More than twenty pages of intake paperwork later we sent in a deposit with a full copy of our pediatric file, to be put on the waitlist of one of the specialists I'd watched over and over again on those YouTube videos. Six months. It would take almost six months to get in. These physicians are overrun with patients because there are so few like them who understand.

"Just in Time" 

The phrase "just in time" has a whole new meaning for me compared to what it did in the other world of my corporate career. Things continued to go up and down with our child but in December 2015, just three weeks before her visit with the specialist, we saw our first clear symptoms of OCD. Threads. Threads on clothing and bedding had to be cut. Snip. snip. snip. Every morning and every night. With it came "just right OCD" when the image on her new quilt wasn't centered on the bed. Sobbing meltdowns and fists balled in frustration, my daughter was not herself. Tortured. That first night left my husband and me frightened. Frightened and grateful that our appointment had been scheduled and was only three weeks away.

Finding Our Way

January 8, 2016

The Wrong Paths

Over the years we got a lot of well-meaning, really bad advice. In the beginning, one organization told me it wasn't Sensory Processing Disorder if her shoes "warmed up" as I said they did after ten minutes or so; true SPD would last all day long they claimed. Our pediatrician said the UTI symptoms might be due to constipation even though she was perfectly regular. They didn't know what to do so when the symptoms subsided after a few weeks each time we simply moved on. Try melatonin to get her to sleep they said but it only made her feel sick and too hot at bedtime and never helped at all with the multiple middle of the night wakings. Our pediatrician finally suggested counseling for anxiety and the psychologist who couldn't get her to look at him never mind talk, instructed me to tell her that these outbursts were SIMPLY NOT ALLOWED. He told us to take away something of importance every time she didn't comply.  "She will learn" he said, and me, desperate to bring her some relief, actually tried it for a bit. Desperate times. The mama guilt from a few of those nights is still raw in my heart.

This child didn't need to "learn" these things; she had already learned all of it. She had hit every one of her developmental milestones on time or early, but had somehow lost these abilities that had once come so easily and naturally to her. This child, tortured from the inside, could not simply "comply". She was sick and no one knew. I had always parented with a gentle guiding hand, setting boundaries and letting natural consequences assist our children in making better choices.  Now I found myself trying tough love, rewards, strong consequences, and even attempted to use some ABA therapy techniques. Nothing helped. The only obvious medical issues we could see were acid reflux which we treated, and an eye condition which caused one eye to turn in, eventually requiring surgery. The rest of this behavioral stuff was thought to be psychological but it just didn't sit right with me. How could this have happened? And why? There had been nothing to warrant such a change; no trauma, no changes, no upsets. She had been fine. I could remember her being a sensitive but pretty typical child in the not so distant past and now I was parenting a full-blown special needs child. What could have gone wrong?

Trusting My Instincts

One of the most perplexing things about all of this was the way the symptoms would come and go. Months of relative calm, periods of moderate challenges including clothing sensory, maybe one other symptom thrown in to keep us on our toes, and then crisis, when everything hit hard and knocked us off our feet. The first time that I remember thinking something was really wrong was during the winter of 2012 when our daughter was beside herself for three weeks. All those symptoms raging. We were about to call out for help and then POOF!  Gone. We were thankful and moved on. That summer it came again, harder this time and we wondered why. After a month or so, POOF!  Gone. We crossed our fingers, held our breath, and began watching our daughter for any sign of a return. In the coming year these flares came and went, lasting one to three weeks, and as quickly as symptoms hit they were gone.  Until.

August 2014, at age 5 years and 4 months, our daughter plummeted and did not rebound. It was then that we got an OT evaluation and were told our daughter had Sensory Processing Disorder. We were told how to help her and I began my research but the OT sessions did nothing and something about SPD didn't quite fit. I didn't know what it was but I desperately felt that whatever was wrong was something that could be fixed. My fairly typical, albeit sensitive child had become a full-blown special needs person unable to function as she once had.

In desperation, night after night, I reached out to my Sensory Processing Disorder support groups:
  • I sometimes feel devastated about the turn [my daughter] has taken over the last four months. I keep waiting for her to snap out of it like she has every other time but she isn't. 
  • Things are worse than they have ever been and I don't know how or why...  I feel like I have been thrust in to a nightmare.
  • Has anyone found themselves SUDDENLY thrown in to this diagnosis because symptoms got serious very quickly? Probably over the period of 3 months. I keep thinking, where has my child gone?
  • My god I never saw this coming. I don't understand what happened.
  • Do any of your kids seem to go in to "remission" out of nowhere?  This Saturday, she gets up, gets dressed, BY HERSELF, no spinning required, no help from me, and I didn't even have to be in the room. She put on TIGHTS and a dress! Unheard of!
  • She is in another almost total remission. I feel so HAPPY. 



  • Sitting with [her]for an hour now at 2AM. Sigh. Her symptoms were all gone for weeks but have crept back in. 
  • Sitting by her bed since 2am. Now 4:30. Guess I have to start lying down with her so I can get some sleep next time. Poor sweet pea. 
  • This PANDAS PANS syndrome is mind blowing. I wish I had called a specialist two months ago when I learned abut it. 




FINDING OUR WAY


********************************************************************************

PANDAS:  Pediatric Autoimmune Neuropsychiatric Disorder Associate with Streptococcal Bacteria


PANS: Pediatric Acute Neuropsychiatric Syndrome



"New and evolving research has begun to substantiate that this syndrome involves a misdirected autoimmune process that affects or weakens the blood brain barrier. The region of the brain primarily affected is the basal ganglia. These group of structures that act as "switching stations" in the deepest inner region of the brain. Some of the brain function area managed by the basal ganglia include: movement, cognitive perception, habit, executive "logic based" thinking, emotions and the endocrine system."


SYMPTOMS



Anxiety



Emotional lability and/or depression


Irritability, aggression and / or severely oppositional behaviors

Behavioral (and/or developmental) regression

Deterioration in school performance

Sensory or motor abnormalities

Somatic signs including sleep disturbances


Exacerbations relapse and remit. They tend to increase in duration and intensity with each episode. Untreated PANS (PANDAS) can cause permanent debilitation and in some cases can become encephalitic in nature. Subsequent episodes can be caused by other environmental and infections triggers different form the original infection. Treated in a timely fashion - PANS (PANDAS) can remit entirely.

*****************************************************************************

Breath. Soak it all in. Could this be it? The big moment came by the glow of my laptop in the wee hours of the morning in January 2015. Exhausted, worried and needing to understand more I was watching yet another YouTube video of leading physicians presenting at a conference of the "Northeast PANDAS/PANS Parents Association". Describing a good deal of my daughter's medical history, they explained the waxing and waning of symptoms along with one symptom I had not ever heard anyone else mention.

I am paraphrasing here but the physician said something like this, "The full review of each child's pediatric medical record is our first step of assessment. Somewhere around the ages 3 or 4 we see an entry for a visit to the pediatrician for UTI symptoms. The child has a sense of urgency, frequency, feelings of wetness and obsessive wiping. A urinalysis is ordered but the results are negative for a UTI. No one knows what to think and after a few weeks the symptoms just go away so everyone moves on.  One doctor even wrote something like "Frequent Urination Syndrome" which isn't even a real thing. If you see this in the medical file you can bet it is PANDAS or PANS." 

My heart skipped a beat, my breath caught in my chest, and I replayed the video. Tears. Stinging tears that tore at my heartstrings and left me with a feeling of disbelief. Finally an answer. Someone who understood. We were not alone.

Strength. Hope. Love. 


Not Just Senssory Processing

January 5, 2016

It has been a long time. I thought I was done with blogging years ago. I didn't have much to write about that hadn't already been written but today I write. Something has happened. My daughter got sick. Really sick. And we didn't know. It wasn't anything that was life threatening but it changed her, affected her quality of life, and turned our family upside down. After two years of turmoil we are on the road to healing and grateful for every single day that she doesn't have to struggle. I write in the hope that another child might be brought back from that terrible dark place that had begun to take our daughter away from herself, away from me, and away from our family. This is our story.

Not Just Sensory Processing Disorder

Always a sensitive little one we noticed our daughter had become even more sensitive somewhere between her 3rd and 4th birthdays. Her big emotions suddenly got bigger. The epic tantrums grew to fill the house. The clothing sensitivity became insurmountable. Every time things got intense enough for real concern everything would just as quickly return to normal. Each time, my husband and I breathed sighs of relief and agreed that she must have been working through a big developmental milestone like the ones that caused cranky moods and sleep regressions for a baby. These phases were tough to get through but all for good reason, we cautiously believed. 

The trouble was that the phases kept coming in bigger and bigger waves, eventually bringing new symptoms, growing in duration and intensity. In the thick of it I remember thinking something was very wrong, this was not my child, things shouldn't be so hard for her. In our darkest moments, I feared she might not return to us.

The "Behavioral" Symptoms

Clothing sensitivity suddenly became debilitating when every morning before school was a traumatic event. Spending an average of forty-five minutes getting dressed, begging me to help her so she wouldn't miss the bus, my child cycled through tears of despair and angry outbursts that looked close to rage. Crouching on the headboard of her bed in a fit of despair, wanting to escape but nowhere to run, this child wanted so much to just get on the bus with her new friends and go to Kindergarten. At school these things didn't taunt her. She could play, learn and do what the other kids do, but getting there was torture. No one else saw what was happening inside our home but I watched.

I watched as my daughter dissolved in to primal emotional meltdowns every time she had to get dressed and it was heart wrenching. Feeling completely helpless after months of failed strategies it became too painful to watch but turning away is not a mother's option. So there I sat, morning after morning, on her bedroom floor, waiting for her to collapse in to my arms. Myself, sometimes cycling through tears of despair, frustration, and anger.  All I could do was watch it happen over and over again. My own hell to be utterly useless to help my child.

It wasn't just mornings. One winter day standing at the window she bellowed sobs into the cold glass watching her sister and father playing in the first snow. Her snow pants and boots could not be tolerated for the discomfort they brought. One spring morning, a special ladies' day we planned with grandma began with this little one sitting on my lap, tears silently streaming down her face because her socks might ruin everything. Tears marked my cheeks too as I whispered over her shoulder to my mother, "It shouldn't be this hard for a child to put on her socks."  I know; crying about socks doesn't sound so dramatic, but it wasn't about the socks. It was about her inability to accomplish routine daily tasks without feeling tortured. Every time we needed to get dressed, change, put shoes on, use the bathroom, go to sleep.  Every step of our day was a horrible battle to overcome and the fight for normalcy takes it's toll. Do you know how many times a child comes in and out of the house on any given day? Every. single. time. was torture to put on shoes until all she wore were a pair of crocks. You choose your battles. I was as lost as my daughter. Exhausted, achingly sad, and worried.

Emotional reactions became far more extreme; overreacting to typical situations, unable to settle herself down, and refusing my help or comfort until she wore herself out. Shyness that became so severe she was hiding from people with whom she should have been perfectly comfortable like friends and visiting family members. Fear that started to look like a "fight or flight" response every time we entered a new situation took strong hold. Looking forward to a school event this child excitedly approached the building only to recoil as we hit the doorway, eyes darting around the room, grabbing my hand and pulling me back so she could hide behind my legs. Increased separation anxiety that moved her to cling to me in our own home, requiring me to accompany her to each room because she was afraid to go alone.  She no longer went up to her room to play or went to the bathroom without me.

Suddenly new fears had her screaming that we not leave her at bedtime; gone was the happy, secure preschooler who used to blow us a kiss and snuggle in to the covers as we closed her door for the night. Debilitating insomnia that meant we were up multiple times a night, sitting with her until she fell asleep only to be awoken 40 minutes later. Eventually she stopped being able to fall back to sleep at all and would lie in bed until 5:00AM when she would either get up for school or finally catch a cat-nap. UTI infection symptoms including urgency, frequency, a few accidents here and there, and excessive wiping because she felt wet, crying that she needed to change clothes no matter how much I tried to show her everything was dry. UTI tests were all negative.

The Occupational Therapist explained that my daughter's behaviors were caused by sensory processing disorder. Her senses were wired differently but with occupational therapy and at-home exercises we could teach her how to operate more effectively in the world. I struggled to believe but I remained open to the idea that my child's sensory system had always processed things differently. A nagging question though; why had her processing not been this bad from day one? Why the sudden change? She was always a little sensitive but NOW. This was different. The therapist told me things had simply worsened with her age and that many kids with SPD are like this. I continued to read everything I could. I continued to implement "sensory diets" at home. I hoped my gut was wrong and that we could help her adjust to these new challenges.

The symptoms seemed to have no correlation with anything we did or didn't do. I was baffled. "Fake it 'til you make it" is a necessary strategy at times so I just kept doing my best. By day we exercised, made charts, reward systems, scheduled down-time, and devised play around maximizing sensory stimulation to balance out her system. But at night, when the kids were asleep and the house was quiet I sat here by the glow of my laptop, reading, searching, watching videos, and talking to other parents. There HAD to be an answer. There are no new problems in this world, only solutions to be uncovered. I could not accept that this is all there was to do. As they say, "a concerned parent does more research than the FBI" and I fit the bill.