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.

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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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.

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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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.