Posted on by A Laughing Matter

Next Steps

Yesterday I took Katie back to Vanderbilt for a follow-up. We had hoped her PET Scan/EEG would have given more comprehensive data but her condition and prior surgeries make the test difficult to pinpoint anything. We knew this may be the case but I was hoping we might get lucky. As suspected her right frontal lobe isn’t firing as it should. Her case was discussed at conference. Conclusion: More data needed. More testing

Next steps are for the pediatric neurosurgeon and the adult neurosurgeon need to connect after spring break but most likely we are looking at a stereo EEG. This is a more invasive EEG to better pinpoint where the seizures a generating from.

On a fantastic note, She has not had a seizure in 3 1/2 weeks. What a relief. We had gotten back to a place of 20-30 per day so this has been a nice break. A part of me wanted the neurologist to say, “Let’s just put things on hold for now.”But we know the big picture. We have seen time and time again over the past 15 years that she will have a honeymoon period after a procedure or med change. Sometimes they last a few months. Sometimes they last a few years. It is what it is. The RNS procedure is mostly likely going to be what changes her outlook longterm. We are pressing forward and hoping to get the next testing in another month or so.

Today is day three of Spring Break. The boys are working so it’s just me and my shadow. We always have a love/annoy relationship going but after a day long rode trip…..she is on my last nerve. God love her. Bless her heart. Bless my heart. God help me. 5 hours in the van. All day. She napped on the way so lucky me. Headphones in. Crime podcast on. One the way back….not so lucky. She loves to lean forward and pull my hair or pull my seatbelt and try to choke me out. It’s real. All the while laughing hysterically. The other annoyance is she constantly wants to change out her DVD. She has a couple CD holders to organize them and she will flip through and perch the next movie on my shoulder to change it out. It’s like driving with a monkey.

So that’s the scoop. No fun Spring Break for us but hopefully we have lots of seizure free days coming. If you want to read more about her next text click the link below.

Stereoelectroencephalography (SEEG)

SEEG is the surgical implantation of electrodes into the brain in order to better localize the seizure focus. At UPMC, we use robotic assistance with ROSA® to accurately and efficiently place the electrodes for seizure mapping. Dr. Gonzalez was the first epilepsy surgeon in the US to offer SEEG and has performed over 1000 cases. He is also a pioneer of robotic-assisted neurosurgery, which improves accuracy and shortens surgery time.

https://www.neurosurgery.pitt.edu/centers/epilepsy/seeg

Posted on by A Laughing Matter

More Testing

This morning we drove to Vanderbilt children’s hospital. They hooked Katie up to an EEG and then did a metabolic PET scan of the brain. She did well. She always starts getting upset when someone comes in and puts gloves on. She got a quick EEG first and then they gave her an IV to administer the tracer. This is what shows at a cellular level how her brain is functioning.

After we headed to the cafeteria and got her the pizza that she’s been asking for all day. She wasn’t allowed to eat after midnight. I would have been seriously hangry and cranky myself.

I’m not sure how long it will take to get results back. I foresee the next level of testing will be several days in the hospital.

Thank you all for the comments, prayers and well wishes.

Here’s a bit of information about this test. Not an exciting read but I tried to just reference how the test is used for the brain; though this test is used for many other conditions.

What Is a Positron Emission Tomography (PET) Scan?

A PET scan is an imaging test that lets your doctor check for diseases in your body. The scan uses a special dye containing radioactive tracers. Certain organs and tissues absorb the tracer and help your doctor see how well your organs and tissues are working.

A positron emission tomography (PET) scan is an imaging test that allows your doctor to check for diseases in your body.

The scan uses a special dye containing radioactive tracers. These tracers are either swallowed, inhaled, or injected into a vein in your arm depending on what part of the body is being examined. Certain organs and tissues then absorb the tracer.

When detected by a PET scanner, the tracers help your doctor to see how well your organs and tissues are working.

The tracer will collect in areas of higher chemical activity, which is helpful because certain tissues of the body, and certain diseases, have a higher level of chemical activity. These areas of disease will show up as bright spots on the PET scan.

The scan can measure blood flow, oxygen use, how your body uses sugar, and much more.

A PET scan is typically an outpatient procedure, which means you can go about your day after the test is finished.

In the United States, around 2 million PET scans are performed each year, according to Berkley Lab.

Why is a PET scan performed?

Your doctor may order a PET scan to inspect your blood flow; your oxygen intake, or the metabolism of your organs and tissues. PET scans show problems at the cellular level, giving your doctor the best view of complex systemic diseases.

PET scans are most commonly used to detect:

• cancer

• heart problems

• brain disorders , including problems with the central nervous system.

Brain disorders

Glucose is the main fuel of the brain. During PET scans, tracers are “attached” to compounds such as glucose. By detecting radioactive glucose, the PET scan can show which areas of the brain are using glucose at the highest rates.

When a specialist interprets the scan, they can see how the brain is working and check for any irregularities.

How does the PET scan compare to other tests?

PET scans show metabolic changes occurring at the cellular level in an organ or tissue. This is important because diseases often begin at the cellular level. CT scans and MRIs cannot reveal problems at the cellular level.

PET scans can detect very early changes in your cells. CT scans and MRIs can only detect changes later, as a disease alters the structure of your organs or tissues

Posted on by A Laughing Matter

Third time a charm?

Journal entry by Barbara Bradley — Apr 25, 2015

Sorry for the delay in updating. My phone has either been used as a GPS, for taking pictures or for “white noise” to help Katie sleep.

We have enjoyed our trip. The weather has been a little moody but overall sunny skies.

I’ll jump right in. Katie’s appointment was Wednesday. Of course we had a torrential downpour of rain and gusty winds trying to get to the appointment and while parking. The temp also dropped. We were not dressed for that but we made it.

We never made it to the actual main hospital. They have satellite locations so we actually stayed in Baltimore but drove to nearby Lutherville.

Dr. Kassoff is wonderful. He asked lots of questions and had pre-reviewed Katie’s medical records. I should be clear she has quite a think file in her short life. What do you know – a doctor that actually reads your medical history before your appointment.

We informed him of her current plan of having a shunt inserted next week. Based on his experience and expertise, they (Johns Hopkins) are more aggressive in their approach to hemimegalencephaley.

He explained what we have been thinking all along. Though I had accepted the idea of a shunt, part of me was relieved he was agreeing with what our gut was telling us. He feels all of these issues she is having are seizure related and coming from a remaining connection and residual tissue on the left side. She has had such long breaks in seizure freedom it just doesn’t seem likely this activity is all of a sudden coming from her good hemisphere. He doesn’t see the need for a shunt right now. Her pressure goes up during her screaming seizures but this is happening during the seizure not from hydrocephalus. He understands testing isn’t a perfect science. Regardless of her other issues not showing up on EGG, he feels they are seizures. He is recommending a complete anatomical surgery.

We are already scheduled to meet with the neurosurgeon at Duke Tuesday. The followup was to discuss the shunt surgery which was set for Wednesday. Of course now the plan is discussing Hopkins’ opinion.

I was asked before we left what I wanted prayers for….prayers that Johns Hopkins would agree with the shunt or recommend another option? It is scary contemplating a third surgery but we want the best option of helping her in the long run and not put a band aid on the issue. Let’s try to solve the problem. Ultimately I want them all on the same page. If Duke doesn’t want to do the surgery or we don’t feel like they can then we will have to go to Johns Hopkins. Of course this would mean putting her through another EEG, etc with them. They all feel need to confirm their own data.

For now I’m trying not to get ahead of myself. That can be difficult.

We did a lot during our time. When everyone is feeling good, we go. We do. We live.We haven’t been let out of our cage in a while. We stayed near downtown by the harbor. We could walk just about everywhere we wanted to go. We visited the aquarium, explored the old ships and ate out by the water. We filled our bellies with crab and shrimp.

Thursday we headed to DC. Nathan wanted to see the White House. We got our exercise for sure that day. We saw the monuments and the capital. We took pictures with Abe and Katie got out of her stroller and ran free back and forth between the “Four score..” Speech and giant Abe. She squealed the while time listening to her voice echo within the great walls. We snapped a picture of her pointing at the “quiet please” sign. Good luck with that request!

Seeing that I didn’t pack accordingly for the wind, we all looked like tourists in our Washington DC sweatshirts.

We pretended to “hold” the Washington monument and ran our hands over the many names on the WWII wall and felt the etched marble faces of the Korean War monument.

Aside from throwing a huge fit in the van on the way home right now Katie has done well. It’s a long drive. She had some screaming seizures this week but not as bad as they could be.

It can be awful staying in a hotel room when she isn’t doing well but it can also be a joy. Katie is usually the first one to rise. She may sweetly lean over to kiss her brother or she may roll on top of him and razberry his belly. She most always sits up and points to our bed demanding we “wake up!” She will repeat until you get up. I love hearing the kids laugh and play together. There is nothing better than all piling in the bed together with no particular place to go.

Those moments are fleeting. We always have places to go. What’s our next journey? What’s our next place to go?