Blink of an Eye

Thanksgiving 2018, began as a normal holiday in my home. Amazing food, company, and the promise of Xmas shopping plans. My in-laws came in to enjoy the fun with us. Reine had been acting slightly off. I thought it was just all the excitement of the holiday, my in-laws, and Xmas shopping.

On Black Friday, things went from fun to very serious in a “blink of an eye”. Literally.

4:00 pm
I walked in the door from shopping and noticed Reine was doing an odd heavy blinking movement. She was slightly out of it as well. This continued straight for 30 minutes.

4:30 pm
I began calling her specialists at Kennedy Krieger (KKI) and our insurance company to see if/where she needed to be seen. We were very new to all of this still. I did not want to make a big deal out of nothing or vice versa. It was deemed that we needed to be seen immediately in our local ER.

5:00 pm12 am
Reine was in the Pediatric Emergency Room (ER) of our local hospital. We began taking videos both at home and in the hospital. The ER was not knowledgeable or equipped to care for Reine. They immediately called KKI and John Hopkins (JH) neurologists for a treatment plan.

Videos were sent to KKI and JH’s neurologists. It was deemed that Reine was in fact having absence seizures with awareness. The ER began anti seizure medications while they, KKI, JH, and our insurance company decided where and how best to treat Reine.

Reine was given medications by the ER to try and stop the seizures. Understand that she already had her normal dose of anti seizure medication that morning as well.

The hard blinking and disorientation continued despite the medications. Then Reine began having hallucinations that would end up lasting for several hours. Unknown to the doctors on call in the ER, one of the medications causes those that are on the spectrum to have graphic, vivid, violent, absolutely horrifying hallucinations. My mother in law was with me during this time. We spent several hours calming Reine down. She was screaming because the walls were opening and closing, things were dropping out of the ceiling at her, we were distorted “monsters”, things were coming out of the walls, things were melting, and we were trying to kill her. Basically, it was like she was on a very bad acid trip.

At midnight, the decision was finally made to transfer Reine to JH because she was still seizing and her KKI specialists were affiliated with them. So any testing that needed to be done would be able to be seen immediately by her specialists and she could be better treated and monitored.

Between 12 am – 4 am
We began to notice a few dots in a line on her abdomen and armpit area. It was brought to the attention of the ER nurses and doctors but they completely blew us off. My oldest daughter, Tristen, switched with my mother in law when we knew for sure that Reine was being transferred by ambulance. Tristen would ride in the ambulance while I followed behind in my truck. This also allowed my mother in law to sleep for awhile. I was the only one that was going to be a constant in the hospital. My husband would serve as a taxi service for shuttling them back and forth as they came home to rest and shower.

4 am
Reine was transferred to John Hopkins Children’s ER via ambulance. Tristen rode in the ambulance with her while I followed behind in my truck. It was one of the most heart-wrenching/helpless things I have had to do as a parent.

5 am
They arrived at JH. Reine panicked when I was not there when she was taken out of the ambulance. Thankfully Tristen was able to calm her down after a few minutes.

5:30 am
Reine was given a 3rd dosing of the anti-seizure medication. The same one that created her hallucinations while in our local ER plus an entire days worth of her regular medication. The hallucinations began once again. The dots on her abdomen and armpits began to get larger and more circular.

6 am
Reine was admitted to JH.

6:30 am – 9 am
Neurologists came into our room to do intake. Reine had a blinking seizure while they were there. She was unable to answer basic questions like “What am I holding up?” (cell phone). “What is your name?” (Reine). “Who is this person” (Me). She was completely disoriented for quite a while after.

12 pm – 6 pm
Tristen and my mother in law switched out a 1 pm so that Nikk could go to work. Reine finally slept mid afternoon through most of the day. First time she had fallen asleep since the day before. Reine was given an EEG (which she slept through). Results showed a “normal” epileptic brain with blips here and there.

An MRI was ordered. They were able to do the MRI without sedation. This was incredible for us as they were trying to figure out if she would need to be sedated and whether or not she could even be sedated. The prelim results showed that she had experienced very recent minor seizure activity with reversible brain damage.

6:30 pm
Reine is given another double dose of her regular seizure medication.

Evening Rounds
It was decided that Reine would need a second EEG within 12 hrs of the first EEG.

Going on less than 2 hrs of sleep within 48 hours, I finally slept while my mother in law watched over Reine.

Second EEG was administered. The results were “normal” with “blurps”. No “active” seizures. This came as no surprise to any of us in the room. Because of the last EEG they could not put on the discharge papers that Reine had anything other than eye blinking ticks.

Reine had been pumped so full of anti seizure medication that her pupils were not dilating properly and she was not able to walk more than 3 steps without help.

Fastest Discharge In History
During our stay at JH, Reine’s spots “finished” developing. She was diagnosed with bed bug bites. The bites did in fact fit the timeline for our local ER according to John Hopkins. We were discharged within 20 minutes of this last diagnosis. Thankfully none of the little assholes thought us worthy enough to hitch a ride on. Everything from coats to bags where placed in our deep freezer for 3 weeks. All clothing was put on a sanitize cycle in my washer and dryer 2 times.

The total amount of medication that Reine received in a 24 hr time frame was as follows…
1 normal dose of Trileptal (home)
2 doses of Ativan (Local ER)
1 dose of Keppra (Local ER)
1 dose of Ativan (JH Children’s ER)
—–All within 10 hours on Friday—-
2 doses of Trileptal (JH Children’s ER)
2 doses of Trileptal (JH )
—–Saturday morning and early afternoon—-

I am not sure who felt more upset with the final diagnosis from the hospital…Us or the neurologists. Everyone agreed that the tests had been administered after the medication finally kicked in and stopped her seizures instead of before they took effect.

Reine’s Seizure Journal…September 19, 2018, to Present.

September 19, 2018, is a day that our world changed. Reine had a tonic-clonic seizure in my arms in the middle of the night. She was diagnosed on October 18, 2018. She was placed on medication as soon as she was diagnosed with epilepsy to help try and control them.

I had a lot of information thrown at me over the weeks that followed her first seizure (that I witnessed). There were phone calls, family history taken, tests ordered, appointments all over the place. I was researching things and had so many questions. For every question I had, I was asked 3 more by Reine’s specialists and doctors. I was clueless about the questions I was being asked. I felt stupid and helpless. Neither one I am comfortable being.

Common tells in neurotypicals

  • Odd feelings, often indescribable
  • Unusual smells, tastes, or feelings
  • Unusual experiences – “out-of-body” sensations; feeling detached; body looks or feels different; situations or people look unexpectedly familiar or strange
  • Feeling spacey, fuzzy, or confused
  • Periods of forgetfulness or memory lapses
  • Daydreaming episodes
  • Jerking movements of an arm, leg, or body
  • Falling
  • Tingling, numbness, or feelings of electricity in part of the body
  • Headaches
  • Unexplained confusion, sleepiness, weakness
  • Losing control of urine or stool unexpectedly

When I asked about seizure tells for those on the spectrum with Reine’s types of seizures I was told she wouldn’t have any. Once again I felt helpless. How was I supposed to help her and I navigate this??

We were missing medication doses even though I had alarms set. If we were out of the house or someone shut off the alarms before the meds were taken she missed doses. I  was forgetting questions I needed answers to because there was only so much my brain could retain at once. I was also supposed to be monitoring her side effects from the meds. Everything was scattered in various notebooks and misc pages. Enough was enough.

I created what I call Reine’s Seizure Journal. My husband rolled his eyes when he first saw it. However, it proved to be invaluable for myself and for Reine’s specialists and doctors.

Her journal consists of a yearly glance with her seizure activity, monthly calendars, daily medication trackers that also have her current doses as well as when she began taking that dose. The dates of the progression of meds and any side effects from the meds. It also has a daily journal , trackers, and a notes section for questions/answers/information.

In the beginning, I was using monthly inserts with just enough weeks in them for that month. It became apparent that this was not going to work long term pretty quick. Reine was hospitalized in November of 2018 for several days. Pulling out 3 different inserts to answer their questions was getting the job done but not efficiently as I wanted. When you are in a hospital setting, their time is short in your room. They want the answers or your questions quickly so they can move on to the next patient.

I started using a Japanese planner called Hobonichi Weeks Mega for my own personal everything planner in February of 2018. I love everything about this planner. From the size, the layout of the planner in general, the ability to change things up in the weekly portion, the notes section (that gave me the ability to section off into other things), and that it was a full year in one book. Took me a hot minute to realize that this would also be absolutely perfect for Reine’s Seizure Journal as well but I did not need the over 250 pages of notes in the back. I decided to use a regular Weeks because it only has 69 pages of notes in it. I have spent the past 2 weeks slowly transferring everything from the monthly inserts and the bullet journal system I have been using since December of 2018.

The Setup
Yearly Glance Pages
I use the yearly important dates pages as a way to see Reine’s seizure activity quickly and all in one place.

Monthly Pages
I use the monthly calendars for 3 things
1. Seizures
2. Medication tracking (along with medication and dosage information)
3. Upcoming neurology appointments

Weekly Pages
Weeklies are for a quick daily journal and tracking information. Because of the daily journaling, we (doctors and I) saw that Reine does have tells for her seizures and we learned that she has 5 different kinds of seizures. I use the left side of the weeklies for a quick daily recap of her day. The right side of the weeklies have a tracker that I use for her tells with ample space for me to write any notes about the day that I think is very important. I also write when someone is sick in the house. Reine’s white blood count is lowered with the medication she is on. Any illness/seasonal allergies can lead to increased seizure activity). The journal allows me to see when she needs something more from me (like extra patience, extra snuggles, help with communicating her needs, ramping up for her tonic-clonic seizures).

Note Pages
This section will be used for any questions I have along with their answers, any research I have done or need to do, and anything pertaining to any testing or hospitalizations that Reine has to have.

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With everything laid out like this, I am able to see patterns, answer any questions, ask my questions and write my answers down and have everything in one easy to grab “book”. Reine’s doctors and specialists have even taken my inserts and books to quickly show other doctors and even parents them in hopes that others will do something like this in the future.

When Regression Means More Than You Realize

Something changed in Reine in August of 2018. It seemed to come out of nowhere. She just woke up one morning and became a completely different person.

Reine started to pee her bed at night and herself during the day. She became disoriented and “zoned out” a lot. Her ODD tendencies flared without provocation and she reverted back to where she was before behavioral therapy. She was unable to concentrate on anything homeschool related. Reine actually lost knowledge. Everything we had learned in the past year was just “gone”. She could no longer remember things like her letters, their sounds, simple addition like 1+1= 2. She was doing 4 digit addition and subtracting prior to August. Her address and phone number no longer were memorized. Her stuttering that had completely disappeared was now suddenly back with a vengeance, frustrating her even more. She began falling, running into things, and tripping over literally thin air.

Most days were spent soothing the “beast” that had seemingly possessed my Mermaid. I spent countless hours rocking out so.much.laundry. My nights were often spent with me in tears because of the long days. I was just in awe and completely thrown that this was all happening. There was no way to research what was happening to us. I know it was just as frustrating for Reine.

Then on Sept 19, 2018, Reine had had a particularly rough day. She could not sleep soundly no matter what we tried that night. I decided the best thing I could do was to just sleep with her. I told her I would stay in her bed with her until she kicked me out of her bed (she is known for literally kicking others out of her bed in her sleep). I told her that if I was not her room when she woke up that I would be in my bed. In the middle of the night, I woke up as she pushed me out of her bed. I went to the bathroom and was going to go crawl into my bed when something stopped me dead in my tracks. Call it intuition, mother’s sense, whatever you want to, but something told me to go back into your room immediately. I listened and went and laid back in her bed. Within seconds, she had a Clonic-Tonic seizure in my arms. I knew exactly what was happening because my biological mother is epileptic. I knew exactly what to do with/for Reine. I never panicked or anything like that.

I contacted our family doctor at the time, along with Reine’s ASD specialists and we began the process of having her neurologically tested. Because of an insurance switch, things were not as easy as we had hoped they would be to get the diagnosis and for treatment afterward.

Thankfully her developmental pediatrician  at Kennedy Krieger was also a neurologist and Kennedy Krieger required Reine to also see Christine (her behavioralist) immediately. We were able to get one session with Christine before the new insurance company told us that Reine’s behavioral through KKI would no longer be covered.

On October 10-11th, Reine and I were guests for an overnight EEG study through Kennedy Krieger. The testing almost did not happen because of the switching of insurance coverage. I had to get Reine fast-tracked through everything. We had to leave our family doctor of 13 years for a new doctor that had to request that Reine get the testing through KKI and continue with her developmental pediatrician for follow up. We were granted a 3-month window for this. With this granted, we were allowed to proceed with the EEG study. It was a long 2 days for us as Reine had to be sleep-deprived for 24 hours prior to the testing. That meant I was also sleep deprived.  Reine had several seizures during the testing, including with strobe lighting.

Reine was officially diagnosed with unprovoked focal epilepsy with photosensitivity seizures on October 18, 2019. An MRI was ordered along with more behavioral therapy to help us navigate everything. Medications were decided upon. Then the new insurance company stepped in and everything medical came to a screeching halt.

Bittersweet Goodbyes

I have read, heard, and cried at the many many many stories about ABAs, Behavioral Therapy, and the abuse that occurs within the autism world. I have had friends that left Behavioral Therapy because of the treatment of their children by the therapists. At no point was punishment a part of Reine’s therapy. I was never asked to sit in a different room while she was in her sessions. There was never a hand laid on her by myself or the therapist at ANY time nor was it suggested. Nothing was withheld from Reine as a form of discipline or punishment.

Before you blast me with hate emails, negative comments, etc I hope you take the time and read about OUR experience. I have no doubt that we were “lucky” with our therapist. Not all Behavioral Therapists are the same. Ours happened to be extraordinary! I was given permission to post the pics of our incredible therapist with Reine.

The hardest part about therapy is when it ends. You are left on your own, hopefully, with all the tools, you need to be able to navigate the world around you better than when you went in. It is scary when you leave the therapist’s office for the last time.

In January of 2017, Reine began Behavioral Therapy for Oppositional Defiance Disorder (ODD) tendencies.  She was not officially diagnosed with ODD because I stopped almost all contact with the outside world not allowing her to hurt non-family members. I was too afraid of having the police/Child Protective Services called on us or being sued if Reine hurt another child.

Behind closed doors, we were living in a nightmare that seemed to be endless. We were unable to open windows because of the constant screams of anger that erupted out of nowhere or the intense meltdowns that sounded like I was physically hurting Reine to anyone passing by our home. There are holes in many of the doors and walls, door jams splintered, paint scraped off down to the drywall, and so many smashed toys. What seemed like endless bottles and tubes of shampoos, conditioners, dish soap, hand soap, lotions, deodorants, body washes, toilet paper, wipes, and spices to name a few, were being replaced weekly because Reine would hide and empty the contents. Bedroom doors had to be locked at all times. Dinner was started at around 7-8 pm because I could not keep an eye on Reine and cook food at the same time. I refused to accept that this was our lives but in reality, it was.

The Developmental Pediatrician and I went head to head twice in the battle of Momma vs Doc (who sees my child once a year for roughly 10 minutes) when I refused to put Reine on medications, instead, begging for a behavioral therapy referral. The Doc thought that meds were the answer instead. Needless to say, I won this round. We were placed on a 9+ month waitlist twice thanks to issues beyond our control.  I knew in my soul that medications would not solve Reine’s issues, they would only mask it. I wanted to know what the disconnect was that was happening between her and us that was causing the behavior. I wanted the tools and strategies that we needed to correct it.

The day I got a phone call telling me we finally were given an appointment to see someone in behavioral for an evaluation, I cried. I had so many expectations riding on this one appointment and this one therapist. During the evaluation, I laid everything out on the table for the therapist. I do mean everything. If this woman was going to help me, I felt she needed to know it all. I had no one left to turn to for help with the nightmare we living in at that moment, except for her.

After I told her everything, I heard the words that completely and utterly changed my life… “We can do this.” I left that evaluation in tears. I had no idea what to expect beyond this meeting but again, my gut and soul were telling me that this was one of the many missing pieces between Reine’s world and ours. I knew I would give it everything both Reine and I had and then some to help both of us escape the hell that was our lives.

For 10 1/2 months, I drove an hour (sometimes more depending on traffic) one way, almost weekly, for Reine and me to meet with Christine. This petite, beautiful soul of a woman. As I write this, I am in tears. I know that Christine has no idea of the full impact that she has had on my family. I don’t even know how to repay her for everything.

We began with the small stuff that we could easily navigate through first and make solid, quick changes that would be easier to piggyback other more difficult behavioral changes onto. Every session meant homework for us. I took every single thing Christine gave us and implemented it in our daily lives immediately. Some of the things, I am not going to lie, I thought they would never work. But I still did it. I customized what I needed to for Reine to adjust and adapt to make it easier (always with Christine’s knowledge and OK) making it a part of our daily lives. Each day got a little bit easier. Each week got a little bit easier.

Some of the things we did with Reine…

Timeout Bench
This was a dedicated bench for Reine to use for timeouts only. When she did something that was not acceptable she was placed or told to go to her time out bench where a timer for 2 minutes was set. This was for her to take a breath as well as us. There was no berating, freaking out, lectures etc. We told her in one to two sentences that her behavior was not acceptable and why. When the timer went off, she came out of the timeout and it was not mentioned again.

My Way, Your Way Cards
These cards are used with a timer so that not only did Reine learn that there was more than one way to use something or do something, but to also take turns.

Wait Timer
This is a timer we use for her to see a visual countdown so she can wait patiently for someone’s immediate attention. We set it for no more than 3-5 minutes. When the timer goes off, we stop immediately and listen or do whatever Reine needs.

I created several charts for Reine to use that helped her to see things visually but also as a way for her to see the information she was asking me about over and over again.

    • How Long Until Chart and Calander
      This set is used to help Reine see a visual countdown until someone comes home, visits, we go on vacation, or for an event.
    • Ask Mom Chart
      This chart was amazing because it allowed me to set a number of times Reine was allowed to ask me the same question over and over and over again. It showed her visually how many times I would answer the question before I stopped answering it.
    • Expressing Wants and Needs Chart
      This is a reward chart. Each time she expresses her wants and needs to us in a positive way, a circle gets filled in. If she doesn’t then a circle gets unfilled in. When the chart is completely filled in, she gets a reward. The reward is something she really wants. She strives to fill it out and is so proud of the reward that SHE earned.
    • Following Directions
      Just like the Expressing Wants and Needs Chart, this chart uses rewards to help her understand the concept of following directions.
    • Reducing Anxiety
      This chart is another reward based chart. It is used to help her calm down, taking deep breathes, and telling me or others how she feels and to work through her anxiety. Unlike the other charts, she doesn’t lose circles if she can’t do something on the chart. We repeat the steps over and over until she can.
    • Who Is Home Today
      This chart is used to show Reine who is going to be home and who isn’t for the day.
    • Homeschooling Charts
      These charts allow Reine to see the progress of the day and how many more things we have to do before she is done with school that day.
    • Let’s Play Chart
      This chart allows Reine to pick things to play/do with us in particular. Many times Reine wants to go from one thing to another to another to another without cleaning up and gets frustrated when we do not know these wants.
    • Now, Next, Later Chart
      This chart allows Reine to see the big things we are doing in order.

How do you say “THANK YOU” to someone that helped you in ways you can’t begin to describe…You can’t. You can only continue to do the things she helped you to learn and to make her proud of the progress you have continued to make.

As part of Kennedy Krieger Institutes rules, Reine is not allowed to see Christine anymore. It has been a LONG and HARD transition for her. She adored Christine and was so confused by this process. She retaliated and backslid in hopes of seeing her again. She still asks about her and begs to see her on a regular basis. It breaks my heart every.single.time. I have to tell her she is not allowed.

Christine, if you ever come across this post and read it, know that you are so very much loved and missed. I can not begin to tell you what you mean to me personally. I owe more than you know and I can ever repay you for. You are damn good at what you do. Never forget that. Thank you so much!

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Raven and Reine

It has been a LONG process training our dog to become a Service Dog. I wish I could go back and redo a lot of it because there were so many mistakes made. But I can not go back and the hard truth is, Raven has a long way to go before she can be considered “service” worthy. We have not given up on her training.

For a while, it seemed as though it was not going to work at all between these two. Their bond did not come easily and was not second nature at all to either of them. I refused to “force” them to bond. I am not even sure if that would be possible. Somewhere over the last couple of months, these two have created their own bond. It is becoming a strong one.

If Reine is gearing up for a meltdown, Raven will do everything she can to lay on top of Reine to hep calm her. She will not leave her side until she knows she is calm again. If Reine gets sick or has a CVS flare up, Raven will NOT leave her side until she completely feeling better or over the flare up. Reine has started calling Raven to everywhere she is in the house. I often find them together Raven keeping a protective stance or eye on her.

Reine has begun to tell her she loves her and to hug and kiss her. This is completely new treatment towards Raven.

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