Fixer

Roughly 892 miles as the crow (and airplane) flies, that’s the distance we recently traveled for a second opinion for J-man’s epilepsy. Judging by the reaction to this news by many folks, this may seem extreme, but Cincinnati Children’s Hospital and Medical Center is one of the top-ranked hospitals for pediatric neurology and neurosurgery for serious neurological problems such as epilepsy, head trauma and brain tumors. They are the best of the best.

Last fall, after of eighteen months of easy-breezing, seizure-free “maintenance,” J-man’s nocturnal seizures returned in full force. After months of unsuccessful tinkering with medication dosages, I felt it was time to seek a second opinion. Hence our travel to Ohio.

At the conclusion of J-man’s initial examination/evaluation and consultation with a pediatric neurologist at CCHMC, the doctor recommended an MRI under sedation and an in-patient EEG that would take place over the course of three-full days and nights. I had a team of prayer warriors praying the EEG would capture a seizure. As fate would have it, J-man did not experience a seizure during his stay in the hospital. Only the erratic brain activity with pre-seizure spikes we know to be continually present was captured.  I liken this to taking your car to a mechanic because of a noise you’re hearing, only for the noise to be inconveniently absent during the mechanic’s inspection. That’s an obvious oversimplification, of course, but you get what I’m saying. (Of course, he had a seizure the night he was discharged from the hospital.)

Our stay wasn’t all for naught, however. We did learn some things about J-man and some of the things that go on inside his busy brain. We learned terms such as slight asymmetry, temporal horns, single punctate focus, frontal white matter, susceptibility artifact, right corona radiate, microhemorrhage, dystrophic calcification, and T2 FLAIR, just to name a few. I was a Google fanatic each morning when a new report appeared in J-man’s online chart. The term that sticks with me most is “prior insult,” as it relates to microhemorrhage and dystrophic calcification. As an adoptive mother, I’ve always wondered about the ramifications of a most likely absence of pre-natal care for J-man’s birth mother, as well as what the first few months of his life were like.

With respect to the EEG, the findings pretty much mirrored previous test results. Abnormal EEG. Focal epileptiform discharges. Focal interictal epileptiform abnormalities that have a high correlation with seizures that are partial in onset. The one bit of news that was news to me is that the discharges occur in the right centeroparietal head region. As odd as this may sound, I always wondered what part of his brain was affected.

Additionally, while in the hospital, we were fortunate to meet with Dr. Donald Gilbert, professor of neurology and pediatrics at University of Cincinnati and Cincinnati Children’s Division of Pediatric Neurology. Both J-man and I wanted to consult with someone regarding the tics he struggles so greatly to manage. What a blessing it was to sit with this man as he explained so thoughtfully and thoroughly what is happening in my son’s brain and how best to help him manage the uncontrollable movements and sounds that afflict him. We now understand that J-man’s involuntary movements are actually  Tourette Syndrome. We also know people with Autism Spectrum Disorder oftentimes have some degree of Tourette Syndrome, too. Dr. Gilbert provided information to J-man’s school as well as valuable information to be included in his IEP. Again, what a blessing it was to consult with him while at CCHMC.

None of this is earth shattering. And, God willing, this is not life threatening. It’s just a change of tack. J-man began a new medication and medication regimen that have absolutely changed his life for the better. He is a different person. The medication he has been on for the past two-plus years was a nightmare. It rendered him listless, fatigued, and unable to process and retain information–horrible by-products for someone who has significant learning challenges to begin with. I am so happy to say, as of this past Friday, J-man has been seizure-free for three-plus weeks. Praise God!

 

 

 

 

 

The last thing I need to mention, is that upon awaking our final morning in Ohio I had an epiphany moment. God spoke to me clear as day. To paraphrase, he said, “You are a fixer, but you can’t fix this. And that’s okay. Your son is perfectly made. You just need to let this be. Love him as he is. There are no surprises where I am concerned. Your son will be just fine.” This divine revelation lifted such an enormous weight off my shoulders. It was freeing. To me, these words confirmed that I’ve done everything humanly possible to get J-man the care he needs with respect to his diagnosis of epilepsy, and there is nothing for me to “fix.” Although I “knew” all of this, what a much-needed reminder that although I’m in charge, I’m not in control.

I thank each and every single one of you for your concern, prayers, positive thoughts and vibes, and support. You have no idea how grateful I am to have you in our corner.  x

B~

 

 

 

4 thoughts on “Fixer

  1. Jennifer Pugsley

    Thank you for sharing this. My son has Benign Rolandic epilepsy. He is on some medication but he has still had some seizures while on the medication. Just last week, he had a seizure three days in a row. We took him to the dr, and they did nothing accept give us a prescription for a suppository just in case his seizure lasts longer than five minutes. This has my husband and I wanting a second opinion from another dr. What made you choose Ohio?

    Reply
    1. Bobbie DuBose Post author

      Good morning, Jennifer. That sounds like what we experienced here in Florida. We’ve been treating with Pediatric Neurologists of the Palm Beaches since our son was diagnosed with epilepsy two and a half years ago. As I said in my blog, he went 18 months without having a seizure and then started having them nightly. Our son was on Topamax and the doctor just kept increasing the dosage which completely derailed my son. I backed him off the medication myself because the seizures continued nightly—he was having them every single night. My final breaking point was when the neurologist here suggested we see a urologist because of the associated bedwetting. I just knew in my mother‘s heart that the bedwetting was from either the seizures, and/or the GREATLY increased dose of Topomax.(Urinary incontinence is a rare, little talked about, but definite side effect of high doses of Topomax—even in adults.) I googled “best pediatric epileptologist” and the top search result was a list by US News and World report that said the number one hospital for treating kids with epilepsy is in Boston and the second-best is in Cincinnati. I have family in Cincinnati so that was a logical choice. We could stay with them while we were there for appointments. I don’t regret the inconvenience and financial burden this caused. (The hospital and doctor are actually in our insurance network.) The change in medication alone was worth every penny spent on travel. As I said in the post we haven’t had a seizure in 3 1/2 weeks. It was just a fresh set of eyes. I will continue to treat here in Florida but I will consult at least annually with the neurologist in Cincinnati. So, that’s the story of how we ended up there. I’m happy to talk if you ever need someone to listen or want to speak further about this. My telephone number is 561-307-8030.

      Reply

Leave a Reply to tempalgrace Cancel reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s