Tag Archives: Magnetic resonance imaging

The Four Friends

Greta had her one year follow up regarding her ADEM. It seems we learn more about this disease each time we see her specialists – actually we learn more about how it is affecting Greta. Her MRI looked great, no new lesions and shrinkage of most of the original ones. There is one spot on her brain that isn’t going away. The doctors said that since it is one year out now, most likely she will have that spot for the rest of her life. This will make things interesting for her. If she ever has an MRI of the brain in the future for any reason besides the ADEM, she’ll have to let them know ahead of time that she has a spot on her brain, from a childhood illness.

We learned that there are four friends that hang out together after brain injury/trauma/lesions. They are perseveration, decreased math skills, memory oddities and being very literal. And yes, Greta is textbook with these issues. She latches on to things and won’t let go, like a honey badger. She’s been taken down a grade level in math and we never know when her memory is going to take a brief hiatus. What about being literal? Don’t even think about using a figure of speech unless you are prepared to spend 10 minutes explaining it to Greta.

The literal issue is probably one of the biggest. Most everyone has run across someone who has no concept of boundaries or sharing/taking turns. So the latching on to things of perseveration won’t hinder her throughout life. Many people hate math. Greta will have many sympathizers. Who knows what is memory and what is not? Half of our lives are spent connected to some sort of electronic device to prompt us of important things anyway. But being very literal – it could lead to all kinds of trouble.

I remember saying something like, “It’s got your name written all over it Greta.” She did indeed look for her name and then got very angry that I had lied to her because obviously her name wasn’t on it. She had no concept of the figure of speech. This is one of many incidents she has gone through. So I will start praying now that there will always be at least one person in the group (Greta loves being with friends) that will help her get past this literal hurdle. For now, it is her family. I pray she finds friends to help her overcome these setbacks in college and eventually the workplace.

Perhaps this is why the Bible tells us to confess our faults to one another. It doesn’t say sins. It says faults. If we open up and share with each other our struggles, the hope is that your friends will pick up the slack where you need it most. But this requires vulnerability. This requires risk. What if I share my struggle with someone and they just laugh at me? What if they use it against me and keep me from getting that promotion I was set for? We can start by being a good example. You probably already know an issue that one of your friends struggles with. Go out of your way to be a true friend and pick up some slack. Be intentional about helping your friends and family. It matters.

Suppose Gr

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Acceptance

Greta's ADEM

Greta’s ADEM

One of the hardest hurdles to cross on our journey through Greta’s ADEM experience is acceptance. I’ve learned how to say and spell Acute Disseminated Encephalomyelits, but learning to accept all it has done to our sweet girl is another matter.

Standardized test scores this year show an average of a 20 point drop from her scores the year before. I thought the doctors were originally a bit crazy or paranoid for wanting to monitor Greta for 5 years after the initial diagnosis. Now I understand why. The brain lesions are shrinking, each MRI is confirming that. No more are forming, for which we are ever grateful! But the fact of the matter is that damage was done.

So now we find ourselves moving past the urgent of getting back Greta’s eyesight in her left eye, to helping her cope with new realities. It isn’t easy. She is fairly resilient. I’m afraid it is her parents that are struggling with how to accept that things will never be exactly as they were before. It is going to require dedication and purpose on our parts to go through this with her, keep track of crazy things and report them to the doctors and keep up on forums with other parents and see how we can encourage each other.

Denying that there hasn’t been any change in Greta’s academics would be wrong. But giving up on her and not pushing her to make an effort would be equally wrong. Acceptance doesn’t mean settling for mediocre. Acceptance means finding the outstanding and excellence where you are!

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A State of Thanksgiving

The support was amazing and almost as overwhelming as the journey we were going through. Karl and I cried and each took turns pretending we were strong enough to tell our little girl that she had a mass on her brain. In the end, the diagnosis was Acute Disseminated Encephalomyelitis or ADEM. It took two MRI’s a spinal tap, many blood draws and physical examinations to get to the diagnosis, but once there, effective treatment began.

When it was all said and done, there were many things we learned. Did you know that ADEM is rare in children and that it quickly becomes life threatening as it is often misdiagnosed in smaller, untrained hospitals? The time to get effective treatment is critical and a misdiagnosis can leave behind a child with many long term recovery issues because the treatment was delayed. Greta’s first major symptom of vision loss in one eye was immediately met by her physician with a CT scan. Quick action for which we are thankful.

When the scan showed the mass on her brain, our little Greta was sent straight to Dallas Children’s Medical Center. In the end, we learned that this facility is one of two hospitals in the country with active programs treating and studying the rare demyelinating diseases. We are thankful.

I joined the Transverse Myelitis Association (TMA), a group that serves as support, awareness and education for patients and families of the lesser known demyelinating diseases: ADEM, Transverse Myelitis (TM), Neuromyelitis Optica (NMO) and Optical Neuritis. By staying connected to this organization, I became aware of other families in their struggles with these life changing diseases, especially ADEM. Many of the children were misdiagnosed. Many were victims of delayed treatment. Most of them are in a great struggle to regain a sense of normalcy in their lives due to the devastation of the disease. And Greta? She rides her bike, goes to school and loves a grand adventure of trying something new with friends. We are thankful.

A glimpse of a show from the current season of Master Chef shows a blind competitor. She wasn’t always blind. As a young person, she got NMO and is now unable to see. Yet despite this great impediment, she pushes on to do what she loves, cooking. I look at Greta and she has regained her vision and carries on normally as a super reader. We are thankful.

In my latest communication with the TMA, I got connected to a forum of people dealing with ADEM, some of the patients children. I read their stories and realized once again how many miracles took place in Greta’s life and in her experience, still ongoing, with ADEM. She is still being monitored and she is still undergoing evaluation to see the extent of any possible brain damage due to the lesion in her brain, but she functions normally.

I have been thankful for Greta’s treatment and recovery. But the more I stay connected to others dealing with the demyelinating diseases, the more thankful I am. I find it very easy to be in a state of thanksgiving when I look at my active and full of life daughter.

When I was a kid and I read Bible verses about always being thankful, I couldn’t imagine. I just couldn’t seem to wrap my mind around why anyone would want to be thankful more than once for good things that happened. I was a kid who just wanted to say thank you and run off to my next adventure. Going through this journey with Greta, I see things differently now.

Perhaps, just maybe, the reason we aren’t thankful, is we aren’t aware of how band things really were or how bad they could have been. Did your house burn down and you lost all of your earthly belongings? Perhaps by connecting with others who experienced this loss, you may realize that you were blessed. They lost their belongings and members of the family. Did your spouse lose their job and the unemployment sent you into a financial tailspin? By reaching out to others in this situation, you may find that they lost hope and their family split up.

If you have been through a trial and have come out on the other side, by reaching out to others you can lend support and help. You can also learn to be in a state of thanksgiving.

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