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.




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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Doctor’s Appointments

Reine has a very large and hefty fear of doctor’s appointments. If she has to have blood work or a vaccine, it is almost crippling. Anxiety will set in, to the point that she experiences panic attacks and causes herself to vomit, have loose stools, and even shake uncontrollably. This is something we have been working through together for almost 2 years now. It has been a slow process. But we have it down to a science now.

I start about 2 weeks before any appointment and begin to talk to her about what they will be doing and what she can expect from this appointment. We decide who else will be coming with her to the appointment besides myself (sometimes her oldest sister has to be there for extra moral support).

We spend the week before the appointment going over everything several times a day until the day of the appointment. By everything, I mean everything. From who will be with her that day, to how we will be checking in, to who she see that appointment. If she is seeing a nurse first, then she is prepped for the intake and everything the nurse will do. If the doctor is seeing her as well, she is prepped for what the doctor will be doing. If she needs blood work or a vaccine, BUZZY is with us and she knows exactly what is going to happen step by step.

  • What time we will get up that day.
  • What outfit she will wear.
  • Who will be with her that day other than Mommy?
  • What time we will be leaving for the appointment.
  • Where the doctor’s office is located.
  • What this particular appointment is for.
  • How we will be checking into the office.who she see that appointment. I
  • Who she see at that appointment, doctor, nurse, both.
  • If she is seeing a nurse only, then she is prepped for the intake and everything the nurse will do. Taking her height measurements, weighing her, checking her body temp, checking her blood pressure and pulse ox. Asking her and I questions.
  • If she is seeing the nurse for intake and the doctor after, she is prepped for what the doctor will be doing. Asking her questions, pushing on her tummy, listening to her heart, listening to her lungs, shining the light into her eyes, nose, and ears.
  • If she needs blood work or a vaccine, BUZZY is with us and she knows exactly what is going to happen step by step before we get there.

Letting her know what is going to happen is crucial for Reine. She needs to have her million and one questions answered and her fears validated and calmed before we even enter the doctor’s offices. It is how she is learning that these appointments are needed to help keep her healthy and that together, we can conquer her fears together.

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Buzzy

When I tell you that Reine is terrified of “bloodshots” AKA needles, I am not exaggerating at all. Her older sis is the same way. Where they got this from is completely beyond me. While her father, oldest sister, and myself do not exactly love the thought of getting stabbed with a tiny metal tube, we do not fear it either. It is more like “Can we please just get this over with so that I can move on with my day?”. They, on the other hand, freak the hell out. It takes 5 plus people to hold them down for any blood work that they need. Vaccines included. Reine would be so terrified that she would make herself physically sick (vomiting, loose stools, and shaking uncontrollably) when she found out about anything she needed relating to a needle. So, I knew needed to find something to help them get through the sheer panic of just hearing the words blood work or vaccine. Lavander essential oil was just not enough to calm their nerves.

I stumbled across Buzzy in my quest to find something to help them and decided to give this little gadget a try. For those of you not familiar with this device, it is a small “insect” shaped device that uses a patented Cool-Pulse™ technology. In their own words “Buzzy® uses natural “gate control” pain relief by confusing the body’s own nerves, thereby dulling or eliminating sharp pain. In the same way that rubbing a bumped elbow helps stop the hurt, or cool running water soothes a burn, Buzzy® controls sharp pain.” 

You can purchase a Buzzy either on their site or via Amazon.com. They come in 2 sizes, mini or XL. They also have a couple of accessories you can purchase separately or you can just buy a kit that contains their distraction cards, bravery stickers, and a kazoo for all ages. The kits start at about $50. It may seem steep, but for us, it has been worth every freaking penny of it. I am not sure if the kazoo is still a part of their kit or not, but it came with ours and is a favorite distraction tool. If you are a professional looking into Buzzy, for your office, they got you covered there too. Seriously, I am in love with the neoprene cooler bag. Ours did not come with it. We got our kit in a small clear tote.

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Our Experience:
Buzzy works to help relieve most (if not all) of the pain from vaccines and “bloodshots”. It also calms both of my kids down by more than 60%. There is no longer a need for 5 people to hold them still. It is usually just myself. I am not saying that they still do not cry or have a couple of minutes of panic, but it is not such a fight anymore. They will not have anything done with needles without Buzzy with us.

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Disclaimer:

I am not affiliated with Buzzy in any way. I did not receive any compensation or product for a discounted rate or free for this post. I just wanted to share something that has worked incredibly well for Reine and her sister. All Buzzy pics in this post are from the Buzzy website. Seriously, you should check them out!

Here is their link if you missed it in the post.

“Wait” Cards

Reine was recently diagnosed with ODD tendencies in January of 2017. We began going to Behavioral therapy immediately. Reine’s Behavioral therapist is well worth the hour long trip (one way) each week to see her. The therapist has given us a light at the end of what has been a dark tunnel. We dove in headfirst and have been implementing everything since.

“Wait” Cards and Timer:
The first thing the Behavioralist had us do was use “Wait” cards and a timer with Reine. The reason for the cards was that Reine would get livid if she asked us to do something or to get her something and her needs were not met in that instant. She could not make the connection between waiting for a few seconds and her needs being met. The “Wait” cards and timer have done just that.

I created mermaid themed “Wait” cards for Reine and laminated them. The cards are placed in a container (with a magnet) on my fridge along with 2 different timers. We focus on using the timer for 10-15 second sessions with the max time of 2 minutes (only when I need to do something like wash my hands).

Reine: Mommy, I am thirsty.
Me: Ok, give me a sec to get you a drink.

Reine picks out a “Wait” card and brings me a timer.I set the timer for 10 seconds. She uses the “Wait” card as a place holder. It tells her that her needs will be met she just has to wait. The timer is set for 10 seconds and handed to her. She presses start and watches the time go down. Once it beeps, she hands it back to me along with the card and I get her a drink immediately.

Me: Thank you, Reine, for waiting as patiently as you could while the timer counted down.
Reine: No problem.

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