There comes a time when raising a child with mental health struggles, that nothing seems to be working.
You desperately want to help your child but can't.
All are suffering.
More than anything you want fact based answers to so many questions.
Why are behaviors what they are?
Why aren't medications working?
We were at that point when Sunshine entered a residential treatment center in March of 2020. The longer she was in treatment, the more certain we were that we needed to try a new approach because nothing was working.
Amen Clinic Brain Scans were the answer.
With a lot of prep and as social story to help along the way, we were able to receive the help that we wanted for Sunshine in August of 2020.
Today we share our experience.
Amen Clinic Brain Scans with FREE Social Story
Sunshine's Reactions to the Appointment
Sunshine was absolutely petrified about having someone take pictures of her brain. She did not understand how the process would work AT ALL.
When she found out she had to have an IV placed in her hand or arm, she FREAKED out!
The final straw was the necessity of having to stay still for 20-30 minutes while a machine took pictures of her brain.
I believe her words were,
"I'm NOT going to the brain doctor!"
She literally had nightmares about the appointment leading up to the dates.
Unfortunate for her, I was ALL in. There was no way we were going to miss these appointments.
We NEEDED the information from the brain scans to help Sunshine.
And even if it was all bad news, at least we knew the reality of what was going on. With that reality, we could make decisions based on facts.
The Social Story
The most complicating factor about the appointment was that Sunshine was in a residential treatment center at the time. I had very limited time to prepare her.
I couldn't transport her.
I couldn't help her get ready (with the exception of doing her hair in the public bathroom at the appointment).
I couldn't provide the comfort she needed ahead of time, except for visitations that lasted a couple hours.
So, I did as much as I could, which in this case included making a social story about our appointments at Amen Clinic for Sunshine to read with me during visitations and therapy.
We read the social story for a week straight before the appointment.
This social story is a Subscriber Only Freebie. To access your copy, follow the directions at the bottom of this post.
The social story helped SO much, but it wasn't enough on it's own.
The Practice Run
Sunshine was literally crawling the walls with anxiety about the first appointment. This was with all of her medications still intact too.
(Amen Clinic asks that patients stop taking some medications before the appointment, but in Sunshine's case it was too dangerous. They gave permission to have her continue on them while the scans took place.)
And so the day before the first Amen Clinic appointment, we practiced the visit in real time, using the social story I had created for her.
We practiced waiting in the waiting room before it was her turn.
We practiced the nurse putting numbing cream on Sunshine in preparation for the IV.
We practiced waiting some more while the numbing cream took effect.
Then, we pretended to do the IV with a medicine syringe. She gave me an IV line and I gave her one.
Once we finished that, Sunshine practiced following directions, playing on the computer, the way it was explained she'd need to do during the appointment to stimulate her brain.
Sunshine rocked at all of this and LOVED the practice. It really helped her anxiety.
Lastly, we practiced laying still, as if she was having the brain scans done.
Sunshine could only stay still for five out of thirty minutes.
Though discouraged, I had faith that during the actual appointment she could pull it off.
She had to!
We needed answers!
The Appointment
Sunshine was a ball of energy when she arrived at the appointment, so excited to see me. Waiting in the waiting room was by far the hardest part of the appointment.
What had helped Sunshine the day before seemed to only keep her interest for a few minutes before she needed to GO.
Luckily the staff put numbing cream on Sunshine's arm sooner than later. Unfortunately the bandages they used to cover the numbing cream agitated Sunshine.
We decided it best that we go for a walk in the hall until it was Sunshine's turn to go back for her IV.
When the nurse did call her, it was realized quickly that there was no way blood was going to be taken from Sunshine's arms. The nurse could not find a vein. (This is pretty much always the case with Sunshine.)
Since the arms wouldn't work, the nurse needed to use a vein in one of Sunshine's hands. We knew that Sunshine would not wait again for the numbing cream.
The nurse tried the spray that is super cold. She told Sunshine it was Elsa's spray, which Sunshine totally went for.
The nurse tried the hand that she had sprayed, but had absolutely no luck.
Sunshine's veins are awful.
At this point we knew Sunshine didn't like the numbing cream or Elsa's spray, so the nurse tried the second hand without anything.
Wouldn't you know this was the only time Sunshine was completely fine with the needle and completely calm. Lol.
To my surprise Sunshine didn't mess with the IV at all. The nurse came in to push through what was necessary for the scans, and Sunshine was fine.
Once the IV situation was under control, Sunshine was asked to complete tasks at a computer by pushing a button every time she saw something on the screen.
The minute I understood what was asked of Sunshine I knew the task was going to be a complete flop, and it was. It was too hard for her.
Thankfully the AMAZING nurse, that we had all the way through this experience, was prepared.
Instead of using the computer, she asked Sunshine to play a matching game.
This was something Sunshine could do and ended up being quite successful at it.
The whole point to the computer tasks and card game was to make sure Sunshine's brain activated into a state of concentration.
The Brain Scans
Once the brain was ready and the IV fluids were doing their thing, Sunshine was taken to another room where the brain scans were going to occur. I was able to go with her.
We were told to bring anything that would help Sunshine remain still, calm and quiet during the scans.
For Sunshine that meant warm fuzzy socks, a favorite blanket, and her favorite stuffed animal to hold.
Once Sunshine was lying on the board, with fuzzy socks on, the stuffed animal in hand, and covered with her blanket, the nurse began to strap her down in multiple places, including her head.
I just about had a heart attack.
Sunshine does NOT like to feel confined or constrained.
I kept thinking to myself that this was going to be the end of the appointment.
Surprisingly, Sunshine was okay with it all. Her stuffed animal was even strapped in underneath her arm and blanket.
I think the straps paired with her blanket provided the perfect amount of proprioceptive input to keep Sunshine calm.
And she really loved the nurse.
If she needed to wiggle anything, she was told her to wiggle her toes.
I was able to remain in the room the entire time the scan was taking place.
The nurse asked me to hold Sunshine's tablet up close to her face with a movie on she enjoyed, while the scans took place. Sunshine chose
Frozen 2 on Disney+.
So long as the tablet didn't touch the scanner and wasn't inside it, we could use it.
There were times during the twenty to thirty minutes when I had to help Sunshine stay still, but for the most part she ROCKED it!
The one time she moved too much, the nurse started the scan over again. The nurse had already planned for this and we just went for it.
Even when the scanners were circulating around Sunshine's head, she was completely fine.
The results were incredible and EXACTLY what we needed to know how to proceed with help and intervention for Sunshine.
The Results
Amen Clinic provides two different types of brain scans to patients. One is a 3D image of the brain and it's shape. The other is a 2D image of all that's going on inside the brain.
The different scans provide different information, all equally important.
I personally found the results absolutely fascinating and so eye opening.
The scans below are Sunshine's actual scans.
I share them in hopes that the results will encourage others to obtain these same scans.
We can't express enough how much information these scans gave us, especially as we reviewed them with the
Amen Clinic psychiatrist after Sunshine's appointments.
If you'd like to see how Sunshine's scans compare to those of a healthy brain be sure to check
Amen Clinic's website
HERE and
HERE.
The first set of scans were taken during Sunshine's initial appointment while her brain was in a state of concentration.
Brain in Active State of Concentration
Brain in Active State of Concentration
We chose to have
Amen Clinic do brain scans when Sunshine was in a state of concentration and a resting state because we wanted to understand how the brain looked different during each of these times.
This meant that we went to Amen Clinic two days in a row.
The second day Sunshine once again received an IV (this time without numbing cream and Elsa spray).
Instead of computer tasks and card games, the nurse shut off the light and let Sunshine cuddle up to me with a blanket and stuffed animal to rest before the scans.
Then, just like the day before, Sunshine had the scans done. The scans below are Sunshine's scans from the second day in a resting state.
Brain in Resting State
You'll notice really quickly that Sunshine's brain is much busier while resting than it is while concentrating. This explain so much in and of itself. Lol.
Brain in Resting State
The Meeting with the Psychiatrist
After the actual appointments that included having the scans done, we met with an Amen Clinic psychiatrist over ZOOM due to COVID-19. I believe the appointment was just one week after the scans.
We can't say enough about how much we enjoyed meeting with the psychiatrist.
The psychiatrist took time to review the scans with us explaining in detail what we were actually looking at.
He answered questions we had.
Then he provided recommendations for treatment.
What I loved most about the recommendations was Amen Clinic's whole body approach.
Medication increases were recommended.
But the psychiatrist also recommended supplements and dietary changes.
He spoke about exercise and a calming environment.
A second appointment with the psychiastrist followed a couple weeks later, which was fantastic because we had more questions.
From there Sunshine's case was transferred back to her local psychiatrist.
We followed every recommendation from Amen Clinic perfectly and sure enough Sunshine was the best she'd ever been.
That is until the stabilitiy she'd never known triggered her Reactive Attachment Disordered brain in ways it had never been triggered before.
Add precocious puberty to the mix and things became quite complicated.
We had to start working on new solutions to a whole new set of problems that required another admission to a different residential treatment center.
Even then though, the new RTC is following the recommendations given from Amen Clinic, including the diet, meds and supplements. because we know they work.
Our family can't say enough positive things about our experience at Amen Clinic. We wish all families could take advantage of this wonderful science.
Sadly, it does come at a price.
In our case our county was willing to pay for the appointment because it was so necessary.
Some might try fundraising.
Whatever it takes, I can assure you it's worth it.
If Sunshine were in an RTC in our home state, we would have her return one year from her initial appointment to have the scans done again.
We are excited to see if there are any improvements. With all that's going on with her now, we would be thrilled to receive new and updated recommendations.
Sadly, we will have to wait until Sunshine returns home, but even now, at least we know exactly what is going on in that brain of hers and have a baseline for treatment.
There's something so comforting about a psychiatrist recommending medications and other interventions based on brain scans, rather than guessing about what's going on, especially when you see results.
It's exciting to get to know your child's brain on such a personal level.
And if you think your child can't make it through the IV and scans, I assure you they can.
Even if you still think no, there is an option to go to the NY office and have the child sedated for the scans.
You have nothing to lose and so much to gain when you take the plunge and obtain brain scans at Amen Clinic.
If you are interested in the FREE Amen Clinic Brain Scans Social Story, follow the directions below.
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7. Find the printable pack you are looking for listed in alphabetical order, click on it, and voila!
We hope you enjoy your free printable.
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