Cyrs

Cyrs

Thursday, September 19, 2013

HOME!

Well it sure was an unexciting week. As odd as it sounds to say this, sadly Cameron had no seizures at all while we were at CHaD. We had lowered his medicine the first day to half the dose, and completely cut it out on Wednesday and today. The nurses said a few times that they saw some "spikes" happening on the EEG, but obviously nothing that was big or strong enough to cause a seizure. Go figure. With Dr. Morse on vacation this week, we don't know exactly what they want to do, if they want to do anything at all, before the surgery. Doing the SPECT scan is not mandatory for the surgery that they have planned - it was more for "bonus" information, if they could get it. Mostly just to confirm what they already know. Always better to have more information than not enough!
Here's a look at Cam's EEG. It was running 24hrs while we were there.

That said, we won't go back up to do the test again. We could have potentially stayed for one more day to try it again, but with Cam off his medication, he has a high chance of having a seizure due to withdrawal from his medicine, rather than it being an epileptic seizure. If that had happened, it wouldn't show the docs what they want to see, because a seizure due to withdrawals would not come from the "problem" area in his brain. We were all getting a bit stir crazy too. Cam wasn't eating well, we suspect because he wasn't moving, he was bored and sick of that room - heck, I wasn't hungry once. Being forced to sit in a bed when you're three, or 25, or 85 is hard. (Here's Cam having some alone time on his bed. Most of the time either Shawn or I were sitting with him.)
Luckily we did get some visitors! We had Ginger, the Yorkie on Tuesday, then Brody the Yellow Lab came to visit him yesterday!

We got some cupcakes from Meme, and Grandma came to visit too!
Then today Matt came up and brought some Playdo and new trucks!


He did have a vision test with the Pediatric Ophthalmologist - Dr. Erin Salcone at 2:45 today, right after being discharged. Unfortunately, Cameron was pretty darn restless and not exactly thrilled about having his eyes dilated.
She did as best as she could and said that she suspects no obvious abnormalities in his vision. Doing an actual Visual Fields Test requires the patient to sit and look into a "bowl" (as she called it) and press a button whenever they see a light. The test is a little too advanced for our, otherwise genius child. :) She said his optic nerves look great and his eyes are perfectly aligned. She doesn't suspect he would have any problems post-surgery. Good to hear!

While we are disappointed that our entire week spent at Dartmouth sort of ended up being a waste, we do know that Cameron's nurses and doctors are doing their very best to take care of him. They all love him up there! When we walked in on Monday, one of the neurology nurses came in excited and saying "YAY! It's my favorite patient!" It's always nice when other people like your kid too. ;) We were able to schedule his surgery for October 30th - he'll be trick-or-treating at CHaD! We should hear some time early next week about what Dr. Morse and Dr. Bauer discussed related to what EEG info and eye test they have. At this point, hopefully not much changes.

Here's a few more pictures from our stay at "hotel CHaD".
After the IV team had to stick him 5 times, the guy gave him the flush for his IV. This turned into a squirt gun the next day...

His head got a little breather yesterday afternoon when they decided to give him a new "hat" because the wrap was sliding off so much. Nasty hair!

Unfortunately, Cameron didn't get to see this, but they had Super Heros cleaning the windows at CHad! How awesome! They didn't go around the outside of the entire floor (can't blame them, in those suits), and since Cam couldn't leave his room, Shawn got some pictures for him instead.

Also wanted to share this one last thing. I found this when reading some stuff earlier.
"Dartmouth-Hitchcock Medical Center (DHMC) has been designated as a Level 4 epilepsy center by the National Association of Epilepsy Centers (NEAC). The Level 4 designation is applied to hospitals and medical centers that provide the more complex forms of intensive neurodiagnostics monitoring, as well as extensive medical, neuropsychological, and psychosocial treatment, according to the NEAC. Fourth-level centers also offer a complete evaluation for epilepsy surgery, including intracranial electrodes, and provide a broad range of surgical procedures for epilepsy. DHMC's Epilepsy Program, the only Level 4 center in northern New England, meets all of those criteria, says Program Director Barbara Jobst, MD. "Level 4 designation recognizes progressive and innovative epilepsy treatment. We're delighted to have this national recognition for the high-level epilepsy care that is delivered by the Dartmouth-Hitchcock Epilepsy Program." I'd say we're pretty lucky to have the help of Cameron's doctors at DHMC.

Tuesday, September 17, 2013

Day 1 - SPECT

3:55pm, 24 hours after checking into the Children's Hospital at Dartmouth (CHad) and we don't have much to report.

Last night shortly after being admitted, the EEG team of 3 came to get Cam all hooked up. He did a great job laying down and watching Elmo's World while the team quickly got him set with his cool "hat" and "backpack". Then, after much deliberation within the Food Services Dept, they finally decided that it was okay for our three year old to have a hot dog, mac 'n cheese and carrot sticks for dinner (his choice).
We met with Cameron's old neurologist, Dr. Linda Specht, because Dr. Morse is on vacation this week. Dr. Specht had been Cameron's doctor until recently when she decided Dr. Morse was better off making surgical decisions for him. She was sure glad to see him though! Around 9pm the IV team came to get his IV set. THAT was an adventure... Five sticks later and they finally got it. Poor Cam keeps telling everyone about "the guy that pinched me and made me cry". They tried to make it up to him by giving him about 20 stickers. It might have helped him a little, but it wouldn't have helped me! He's a trooper, for sure.
He got half of his normal dose of his medication last night and half again this morning.

At 8am, our favorite neurology nurse came and spent the morning with us. The way the SPECT scan works is he is connected to an IV for 6 hours. Once he has a seizure the nurse injects an isotope into the IV that highlights the seizure activity in his brain, then he's taken to the SPECT machine for the scan. The IV tube is only 5 feet long - sounds like a lot, but its connected to a machine, then goes across his bed and into his arm. This gives him about another arms-length of space to move...Not much when you're three! We started watching videos, playing with cars & trucks on his bed, playing with his Leap Pad, etc. They even had a puppy come sit with him in bed for a few minutes!
The six hours past with no seizures, but man was it a relief to let him get out of bed! Shawn went and got him a basketball hoop from the playroom and some trains. He can't leave his room because he's connected to the EEG. Slightly claustrophobic!
Tonight and tomorrow morning we are skipping his medicine all together and hope to cause "an event" - as they call it, during that time tomorrow. They're also trying to plan for the Visual Field Test tomorrow. Fingers crossed!

Thank you ALL for your kind words, prayers, thoughts, offers, questions, etc. We have certainly felt the love!

Thursday, September 12, 2013

Clarity.

After some tears and a frustrating start to the week, I am writing this post knowing we have a plan to begin Cameron's surgery.

We started the week knowing/hoping we'd hear from Dr. Bauer on Monday or Tuesday. After Monday passed by, Shawn called first thing Tuesday morning and Dr. Bauer returned the call requesting a meeting with myself, Shawn, Dr. Bauer and Dr. Morse together on Thursday (today). I know we don't owe an explanation to anyone, but for those wondering why we felt so frustrated with this request - to go to these appointments we drive an hour and a half one way, which means missing a minimum of 3 hours of work, plus the time at the hospital, a $50 copay each time we walk through the door and the gas money to get there and back. We are so eternally grateful for everything Dr. Bauer and Dr. Morse are doing for Cameron and for us, it's just such a stress financially and the constant waiting and anticipation of being told at each appointment that we'll know what's happening next time, takes a toll. Also, after more than two years of uncertainty, we thought we'd finally have some answers and a plan of action, only to have it delayed a couple more days. Oh well.

Regardless of our frustrations, both docs scheduled time outside of their own clinical hours to come to DHMC to meet with Shawn and I to discuss Cameron's case. We're truly blessed with some incredible doctors to care for Cam. Today we got a chance to sit down with both Dr. Bauer (Pedi neurosurgeon) and Dr. Morse (Head of Pedi Neurology and Epilepsy Specialist) to really hammer out a plan. They had brought Cameron's case to the Epilepsy Conference last Friday and said they had a "lengthy" discussion about what is best to do. We discussed the options that were already presented to us, but with some add-ins this time. The biggest concern that the doctors had at the conference was:

Cameron's MRI shows that the left hippocampus, amygdala and section of the temporal lobe are very obviously malformed. His original EEG showed the seizures come from the left side, but the PET scan shows there are "dark and cloudy" areas in both the left frontal and occipital lobes (unrelated to the obviously deformed parts). They aren't sure why it's cloudy, because anatomically (looking at the MRI) there are no abnormalities there.
They suspect that due to the abnormalities in the hippocampus, amygdala and temporal lobes, the rest of the left side of his brain has slightly less function. We also learned today that the left side of his brain is slightly smaller than the right side, which would make the comparison off because there is less brain function to look at. Dr. Bauer and Dr. Morse's hope is that by removing those three areas, the cloudiness would go away. It's as if his brain has a whole bunch of roads through it that all work fine, but cannot connect to one another because there is a missing bridge. There isn't as much traffic because no one can get anywhere, but once the bridge is fixed, the roads would work more efficiently. If they remove those sections of his brain, their hope is that the rest of the left hemisphere would function normally.

So after going through all of the options again, Dr. Morse asked if we had any questions. Honestly, we still have a million questions, but at that moment, all we wanted to know was, "What do we do?" So we expressed that we had no idea how to proceed, we didn't feel qualified to make a decision about brain surgery on our 3-year-old (and what parent does, besides, maybe them) and we didn't know what the best option was. Dr. Bauer shared that he thought the best option would be to do the limited surgery. He thinks that gives Cameron something like a 50/50 chance of coming out seizure free, which are good odds considering if we did nothing, he'd have a 100 percent chance of still having seizures. There are just a few more things they want to try to understand before doing the surgery.

The section of the temporal lobe that seems affected is a part that contains fibers for your peripheral vision. This is the spot they suspect Cameron cannot see due to the deformity. They want to have a baseline for his vision before the surgery is done so they know that if he has that vision now, he would likely be blind there post-surgery. If he already can't see it (as is suspected) then it wouldn't effect him at all, but they want to know. So for that, we do a Vision Field Test.

Also, the last time that an EEG recorded his seizure activity (despite two more 24-hour EEGs) was when he was initially admitted at 7 months old. They want to be absolutely sure the seizures are coming from the left side, so we do a SPECT scan. This involves Cameron being admitted to the hospital, connected to an EEG and an IV and we wait. They will lower his medication dosage to half of what it usually is and hope to record a seizure. At the time that a seizure happens, a nurse will inject a dye into his IV that highlights the area(s) in his brain where the seizure is happening. Once they do that, they have four hours to get him into the SPECT machine to capture the images of the dye in his brain. The hardest part is, once the nurse mixes the solution for the dye, we have just a six-hour window for Cam to have a seizure. They will only mix the solution once a day and it's pre-planned. If Cameron has a seizure in the seventh hour after the solution is mixed, it doesn't matter -- we have to wait until the next day when they can set the solution again. They told us they've had kids in the hospital from Monday through Friday because it just doesn't happen in those hours. Once he has a seizure, we can go home, so hopefully it happens quick and in that six-hour window. Luckily, the SPECT machine is free next week, so we'll be doing it sometime early next week -- likely starting Monday or Tuesday at CHaD. They're also scheduling the Vision Field Test and all of his pre-op "stuff" for while he's admitted next week. There are so many more things to discuss like, what the surgery entails, recovery and how we know if he's "seizure free". I guess I'll have a lot of time next week to type that all up!

At this point, we're looking at surgery in the last week of October. We are truly so appreciative of all the thoughts and prayers sent for Cam. Even though we feel like this has been going on forever, it's really just beginning. We'll find out tomorrow what day he will be admitted to start the EEG/SPECT scan, but for now, our house is entirely surrounded by water and it's still raining! GO PATRIOTS!

Wednesday, September 4, 2013

Anatomy and Physiology Lessons

It seems like a lot of what we've done over the past three years is wait. Wait for call backs, wait for doctors, wait for answers. And so, why change that now?

We met with Cameron's Neuro Surgeon for the first time yesterday. Dr. David Bauer is an awesome guy. Ya know that guy in high school, that really smart one that everyone joked would be a brain surgeon when he grew up? That's him. He's incredibly smart, but made sure we understood everything he was discussing with us. We left the appointment without a surgery date, but with a little more information about what's going on in Cameron's brain (and still questions, too).

Basically, there are three scenarios.

#1. After looking at the PET Scan, Dr. Bauer and Dr. Morse (Cam's Neurologist) found that the left hippocampus, amygdala and lower temporal lobes were basically non-functioning. The amygdala and hippocampus are frequently sources of epileptic activity, so it is very likely that this is where Cameron's seizures originate. Dr. Bauer could preform a limited surgery where he would just retract those sections of Cameron's brain leaving a very good chance he would be seizure free post-surgery. Dr. Bauer's only fear is that these three areas don't deal with Cameron's motor skills (or lack thereof) at all. His fear is that there is more of his brain affected (It can be seen in the PET Scan that part of his left occipital lobe and a small section of the frontal lobe are "darker" than the right side) but the other parts that may be effected are parts that could be Cameron's source of speech and language. Doing the limited surgery would have a less than 1% chance of Cameron having any long-term problems after. If he was more aggressive with the surgery, it could leave Cameron unable to talk ever again. Dr. Bauer would NOT do that though, which brings us to scenario #2.

(Some pictures to help, for you visual people like me! :))

#2. Because Cameron is left handed, his speech and language "should" come from the right side of his brain. We just don't know if he's genetically left handed, or if his brain "made" him left handed. Dr. Bauer could be more aggressive with the surgery if we know for a fact that Cameron's speech and language come from the right side of his brain - so how to we figure that out?? Well, for scenario #2, Cameron would have a minor surgery to place electrodes on his brain, they would wean him from his medicine and wait for him to have a seizure. They would be able to create a "grid" of what his brain does and how it works so they would know if he is using the left side to talk, or if that section is also non-functioning. They'd also be able to see exactly where his seizures originate and if it's coming from more than one location. If it's non-functioning, Dr. Bauer could remove it and Cameron would have no issues afterward. If it is where the language comes from, it would stay, but we'd know where the seizures are instead, and they'd evaluate that area. Dr. Bauer could then do the more extensive surgery, and with the grid, Cam would have a less than 1% chance of any long-term problems. The biggest issue with scenario #2 is that Cameron is young. The electrode placement requires the patient to stay in bed (not completely immobile, but he can't go running around). Cameron does not sit for more than 2 waking seconds at a time, so it would be extremely difficult to get him to stay in a hospital bed for up to two weeks (less if he had a seizure before then)! He's also small, so Dr. Bauer is afraid the electrodes wouldn't really fit. And so, scenario #3.

#3. We wait. We would do nothing for a couple years until Cam was bigger and could understand more of what was going on, so we could explain that he needed to watch movies and play games in his hospital room. His brain would be larger so they'd have a better chance of fitting the electrodes. Dr. Bauer shared his opinion and doesn't think this is the way to go. As he starts school, he could suffer set-backs if he has seizures while in class. Also, if the brain is allowed to seize over and over, it can have negative effects long-term.

We talked about possibly doing the limited surgery with the chance that he would not be completely seizure free, but maybe he'd stop having all of the little ones and have just a few big seizures in a year, then down the road place the electrodes and see what they find. In the end, we did not make a decision. Dr. Bauer and Dr. Morse feel Cameron's case is big enough to bring to their Epilepsy Conference this Friday. The conference is a whole bunch of epilepsy specialists from neurologists to surgeons, who get all up-to-date on the latest technologies and studies, but also discuss major cases. They want to see if any other docs have had similar experiences - whether they should try the electrodes, or just proceed with a limited surgery, or maybe have another option. Shawn and I are both very happy and very thankful that Cameron will get the expertise of an entire conference of specialists. We know that he'll get the absolute best chance and best options available.

And so, now we wait again. We should hear on Monday or Tuesday what they discussed and what options we have. Meanwhile, Cameron is at preschool and we haven't gotten a call from the nurse for a split lip or a bumped head! :)