C's Journey

This is a difficult post to write. Partially because I am amazed at how often parents of young children share things from Facebook or social media with their kids about their kids’ friends that really should be kept private. Partially because it is the world’s longest story. Partially because I am not a science gal and don’t understand it fully myself. Partially because I was in denial for a very long time. And....mostly because of pride and I would like to think I could have done something...anything to prevent it.

After we first started going through this in the early fall of 2015, it has been so emotional. It has caused us to have a lopsided focus in our family—where one child is getting 70% of our attention and time and the other two are splitting the remaining 30%. It has caused our oldest to have to grow up quicker than she should and our tiniest to be plugged in front of the TV far more often than we believe to be healthy. It has caused myself and hubby to lose our cool more often than we would case to admit. It has brought out the ugly in me so many times. It has brought me to tears daily. And it has left little time for a healthy marriage because there is no time we have without children.

Why did I decide to share now? I felt the Lord pushing me. Prodding me. Reminding me that the truth sets one free. Knowing that there is no reason to “hide” behind it and that there was nothing we could have ever done to control it, prevent it or even fix it on our own. Knowing that our precious girl has been through so much that is not her fault and not something she can stop or control. And...knowing that because of ONE Facebook friend’s post over a year ago, it led us to find the answers we so desperately needed. I cannot even remember which Facebook friend it was as it was just someone sharing a link to an article, not someone who was going through this personally. I believe it was this article. There could be another family just like us out there and by my sharing, it could help others. It could also help others to better understand C.

Our Journey

Normal, Happy Kiddo

Until the end of Kindergarten, C was a pretty easy kiddo. She made friends easily and did well in school. She was pretty easy in terms of discipline. She was also strong willed and knew how to test our limits. Toe head blond Rapunzel hair and the most beautiful green eyes...and every teacher she had couldn’t help but love this happy, well-adjusted little bundle of creativity and happiness. She came home from school happy and excited to share with us what she had learned each day. For all intents and purposes....she had her share of quarks and ways that she was more challenging to parent, but she was a pretty “normal” kiddo and most days were good days.

Something Isn’t Right
Fast forward to right after school starts in first grade (age 6.5). We had met her teacher, thought she was fantastic, and honestly a wonderful fit for C. But it was like someone had flipped the switch on a light switch. No warning. No reason. No gradually getting worse. Early on in the school year she was nearly unrecognizable as the kiddo that we had known and raised for 6.5 years. From the moment I picked her up from school in the afternoon, she would cry hysterically and for no reason. She couldn’t tell me why she was upset or what I could do to help her. She would just sob uncontrollably. I remember video taping these fits after a while and sending to some friends I had confided in and them telling me, as kindly as they could, that this was not normal and we should get her some help. During the fits she’d scream about things like how bright the sun was and how hot her body felt and that she hated car rides and she was hungry. It was like every sensory issue raining down on her all at once. We lived 2 minutes from her school at the most. The fits went on throughout the evening. There was never or rarely ever a reason behind the fits. Or it was some arbitrary one she made up to make me quit asking, “what is wrong.”

We figured that maybe these issues were stemming from just the school work being more challenging, and going from summer break to long days at school. She was likely exhausted. Change has always been hard for her. We asked her teacher weekly for a while “Are you noticing anything about C? Does she seem okay?” Her teacher, a seasoned, amazing teacher who had taught 1^st grade for over 20 years, was just floored at our questions. “You are not describing the kid I’m seeing. She is the quintessential 1^st grader for me...academically high, loves to learn, respectful to others, a kind friend, helpful.” Which in a way, made me so happy that she still was thriving in the school setting and in another way, made me even more upset because this HAD to mean that we were doing something wrong as parents that she’d act this way at home.

Nighttime was THE worst. She had anxiety on overdrive mixed with what seemed like OCD. She was always SOOOO hot at night. We oftentimes thought all of these were made up excuses but come to find out they were not. She felt hot, and she couldn’t turn her brain off. Most adults have experienced insomnia at some point and it is awful. At one point she told me she couldn’t go to sleep because she needed to keep starring at her smoke detector in her bedroom to see if the light would ever change from green (batteries working) to red (batteries not working). These nighttime shenanigans would go on for HOURS. Literally hours. And hubby and I would be at each other’s throats just angry at the whole situation and both of us wanting to finish the damn bedtime so we could WORK. Not to mention that C shared a room with N until recently so we were trying to make sure she didn’t wake her up.

We went from these awful fits, to self-loathing at age 6.5. She truly hated herself. I remember walking into the bathroom one day and she didn’t see me coming and she was looking at herself in the mirror and saying repeatedly “C you are a naughty, bad girl and I hate you.” It broke me...no one wants to see their child going through this. And we knew....that is when we knew...we needed help. We took C to therapy and it didn’t touch anything. The therapist thought that C was maybe depressed but it was just expressing differently since she was a child. She did stress to us that “just because she can hold it together at school, don’t doubt for a minute that she is still really struggling inside...she is smart and knows she has to hold it together at school.” The therapist let us know that that this was even more of a reason that the fits were so awful at home was because it was HARD WORK to keep it together at school all day every day.

June--Phoenix for answers (age 7)

We muddled through first grade and continued therapy. We weren’t really getting anywhere, and things actually seemed to keep getting worse. It was a conglomeration of what “seemed” like Sensory Processing Disorder, anxiety and OCD (which is a form of anxiety). During this stretch, I was freelancing full time as a marketing consultant and had a trip scheduled to travel to Phoenix. The colleague I consulted with, who had become a friend since I started working for her in 2002, must have been able to tell from the sound of my voice one day when we had a work meeting (via phone). Even though she was a friend of mine, I always kept my demeanor professional when we were discussing work. She said right away “something is not right...what is going on?” She had caught me in a moment I had gotten very little sleep and C had melted down all morning before school. I then shared that we were really struggling and I wasn’t sure what else to do. Nothing seemed to be working for us. She was not herself and wasn’t improving. She has kiddos around the exact same age and could see I was just desperate.

She told me about a renowned center there in Phoenix that has helped several of her friends’ kids who have had issues that they just couldn’t seem to find answers for until they went there. “Kristine you need to try and get her in.” I told her it was pointless because it was all the way in Phoenix and there was no way they’d get me in the exact dates I was there for work. “I want you to hang up the phone right now and call the center. You don’t know until you try. I am going to start praying.”

I called the Center and told them the dates I would be there in a few weeks and they responded, “Yeah sorry but we are usually scheduled at least 3 months to 6 months out.” I thanked them and was asking if they could put us on a wait list when they asked if I could hold on for a minute. When they came back on the line they said “You will never believe this but we just had a cancellation for the week you are here. This never happens.” I was shocked. We made appointments with the behavioral pediatrician (a 90 minute apt—this was the one that was the hardest to get into), then one with the occupational therapist and two with the psychologist. I hung up the phone and got C’s flight booked to join me. The appointments all had to be scheduled in the evening since I had to work during the day, and my boss even was able to get her enrolled in a dance camp with her daughter during the day while I worked. There is no way to describe how all of this fell into place aside from God’s hand being in the whole thing. My dear friend also had us out to her horse ranch twice and gave C equestrian therapy.

C was really good during the trip. I had hoped for some miracle answer. Or at least to eliminate other diagnoses. The overarching diagnoses was just “anxiety” though and giving her some meditation to follow. Oh, and also the psychologist totally didn’t feel the therapist back home was helping and urged me to find an actual child psychologist here. We didn’t really get a miracle answer but...I still felt like there was a purpose behind the trip. If nothing else, C knew we would go to the ends of the earth for her and we weren’t giving up on helping her get better. And she felt SO SPECIAL at my friend’s ranch. She loved those animals so much and had such a connection with them. I will never forget that last day at the ranch, when she rode bareback with the ranch lights on as it was dark. At the end of the night, we really needed to get back to our hotel and I told her it was time to start saying goodbye. She was cheek to cheek with the horse, Sissy, that she bonded so well with...with huge tears streaming down. No adults were that close...just C and that horse. She’s always had an amazing connection with animals.

Returning Home—June, age 7

We returned from our trip and did as the Phoenix psychologist suggested and looked for a child psychologist. Let me tell you....it took down right begging to find someone to take her! Everyone was “full” around town it seemed. I finally found one who would take her, though we had to wait a while to get her in. She seemed to be a great fit for C. However, we were still struggling with the same issues most of the time as before.

2^nd Grade (age 7.5)

We learned that C had gotten into the local laboratory school affiliated with the state university in town for 2^nd grade (we had known since April of first grade). So we had known for a while she was making the switch to the new school, and she was very excited about meeting her new teacher and making new friends. We were still struggling at home with similar things, though with some tools in her toolbox from the therapist, she could sometimes use those to prevent the fits from getting as bad as they would before. When we met with her teacher in November, she again said C had caught on so quickly to the academics there and she was excelling and making friends quite easily. She just had all positives to say really.

2^nd Grade year—May (age 8)

It was sometime around December of C’s second grade year that someone made a Facebook post sharing this article. It stopped me in my tracks. I read it, and then I reread it. Then I reread it again. Then I had hubby read it. This sounded like C. The part that really grabbed me was how sudden the onset was. About a month later, I made a Facebook post asking if anyone knew of anyone with a kid with PANS/PANDAS or knew of any doctors specializing in it. I had several friends message me, knowing of friends who have kids with this. One friend messaged me saying a good friend of hers has several kids with this condition. I got in touch with that friend, who has been a HUGE support in this, and she gave me the name of their specialist. Despite the specialist being 3.5 hours away (near Wisconsin), we scheduled the first appointment they had. From the appointment, C had a number of blood tests done, and he put her on an antibiotic, with the assumption that this IS PANS/PANDAS (it is not “easy” to diagnose with absolute certainty as a number of things can cause it).

Like a light switch

Within DAYS.....I kid you not....DAYS....she was back to her “normal before age 6.5” self. It was insane. Crazy. HOW IN THE HECK. I was shocked. How was this the answer all along?!?!?!??! Azithromycin? Are you kidding me? No anxiety meds. No depression meds. An antibiotic.

While I would love to say that’s all it takes....she’s on an antibiotic for life...it isn’t that easy. And neither is this condition. You can’t be on a regular strength antibiotic indefinitely...it taxes out the liver. C has blood work done regularly to test her liver levels. She goes on and off the antibiotic based on her liver levels.

She is also such a virus detector. Here is what I mean....G and I got sick with bad colds a few weeks ago. Right after we got sick....C started back to her same anxiety/sensory issue/OCD symptoms (she had been doing well off the antibiotic for a few months). C sometimes is the carrier for the virus but how she ends up getting “sick” is instead all these anxiety symptoms. She was put back on an antibiotic and within two days was completely “normal” again.    

What is PANS/PANDAS

Well, gosh, I am honestly still learning myself because the whole thing is downright confusing to me. It stands for Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS).  I’m so glad they have easy abbreviations because those are both mouthfuls!

In a nutshell, it is an autoimmune neurological condition where the antibodies from infection cross the blood/brain barrier and attack the basil ganglia causing a host of psychological symptoms. This video really helped me to better understand it.

Still a long road ahead

Are we totally in the clear now that we have diagnoses? No. We are still determining the cause of the PANs for C. She’s been through a LOT of blood work, the bulk of which can only be done in the doctor’s office, which is 7 hours of riding in a car for her in a day, and long car rides are one of her triggers when she’s going through her PANs symptoms. Many of the tests are out of pocket and don’t go through insurance, although, Illinois recently passed law that requires insurance to cover treatments of PANS/PANDAs.

Like I said, she can’t be on the antibiotics all the time because it taxes out her liver and when she “flares up” she has no choice but to get on the antibiotics.  She cannot help any of this...she is embarrassed by it though. She truly doesn’t want anyone to know but at the same time, I think it is important to share what we have been through in case it helps anyone else. It has been lonely and isolating because it is rare enough that it is hard to find others who know anything about it. It is inconvenient because we have to drive so FAR to see her doctor because no one in the area knows anything about this. It is frustrating because relatives and others very close to us who have seen her fits feel it is something that she can control or we could parent differently (and I can understand why it would seem that way). It is exhausting because oftentimes she can’t just go to sleep even though she wants to. It makes us feel helpless because we want her to feel better. Last week, one evening, she was so hot that she had her window open (in the winter), no blankets on, ceiling fan on, little fan we bought for her dresser on, sleeps in nothing but her undies, and had 4 ice packs on her body and was still “just so hot.” It is hard to parent all three kids differently because the others can control their behaviors so get real consequences and hers we have to handle on a situation-by-situation bases. It is hard to have date nights with hubby (which we need since we are “all hands on deck” just about all the time) because I don’t know many high school sitters who could handle her when she’s “flared up.” We often feel like we have made a step forward and then two steps back with finding the solution. At this point, she feels like a totally normal kid when she isn’t flared...but then with the flare-ups, it is just so hard for her. She always seems normal at school and activities, but at home struggles to hold it together. It has really done a number on her confidence.

And yet, with how much of an uphill climb it has been, I have seen God’s hand in it all. In finding the article on Facebook. In finding the doctor. In her being blessed with such amazing and caring teachers. In needing to make time, even in the “busy” to tell her I’m here for her, always, and that when she falls, I will catch her. She’s a beautiful soul. PANS/PANDAS doesn’t define her. She doesn’t let a whole lot into her world. I feel lucky to be her mom and know that despite all the “ugly” of this disease—there is a reason for everything and we will come out stronger.

-->