Saturday, January 24, 2009

Finally, some GOOD news!

Where do I begin?

Let's start with the good news for once! Froggy has been officially diagnosed as having Childhood Absence Epilepsy. Why is this good news you ask? Why would any parent be thrilled with a diagnosis of Epilepsy? Because for the last year and a half, we have been treating her seizures with the wrong medication, which is why it wasn't working. Duh.

Froggy's first EEG showed a spike in her frontal lobe and only one spike, which suggested that her seizures were focal (meaning the seizure is coming from only one part of the brain). So her neurologist medicated her with focal seizure meds. But having Froggy do the EEG for more than 48 hours, our new team of neurologists were able to determine that her seizures are generalized (all over the place) and that they are consistent with Childhood Absence Epilepsy.

This is great news because the new meds will most likely completely control her seizures, and she will probably, most definitely, hopefully, absolutely OUTGROW these seizures. Thus the name, 'childhood' epilepsy. Hooray! Woo Hoooooooo! Now we just need the cure for Cystic Fibrosis and we're home free. (no pun intended)

Now for the die-hard Froggy lovers. Here's the extended version of the last 60 hours....

When determining an appointment for the EEG, the lovely scheduling woman told us we needed to check in at 11pm. I kept repeating the PM part, because it was so late, even asking questions like, "Should we keep up our daughter until then?" To which she replied, "Only if you think it will induce a seizure." But later when she left a message on our machine with a casual, "See you at 11am," I thought, "Oh, she just misspoke." It's an overnight EEG, it's gotta be 11pm, right?

But at 10:45am, while in the shower, I kept replaying our conversations in my head, and it hit me that she had always meant 11am. When she said, "Pack dvd's and toys, crayons and coloring books," it was so obvious! We would be there all day and night!. I hopped out of the shower and screamed, "I think she meant AM, not PM!!! Hurry, we gotta pack!"

FD is a slow moving guy, when not on his bike. He doesn't get worked up over schedules, appointments, fires or earthquakes. So while I'm freaking out, throwing our entire apartment in a bag, he's casually dressing the Frog and rolling his eyes at my total lack of grace. "If we're not there by 12pm, they'll reschedule us, and who knows when that will be?" I yell, like a maniac, throwing books, dinosaurs, horses and dvd's into a bag, sweating profusely and ordering my family around like a drill Sargent.

"We'll get there in time," FD non-challantly, and might I add annoyingly replied.

Sometimes we're entitled to a good freakout, a good nervous breakdown, a good CRAZY MAMA PACKING THE ENTIRE HOUSE moment, when your kiddo is late for their EEG and it's your fault because the stupid scheduling lady doesn't know day from night, and now if you don't get checked into the hospital, it will be weeks before they are able to reschedule and the new neurologist (who is pretty stinkin' cute) will think you're a horrible mother who isn't capable of distinguishing am from pm, let alone taking care of a toddler with special needs. Soooo.... we finally get out the door.

I drive like a maniac to the UCLA campus, we check in and they tell us to wait in the surgery recovery waiting room. For SIX HOURS we wait. By now Froggy has missed her nap, her lunch, and is losing her sanity. Her wonderful Daddy has taken her for a million walks outside (where she sat in a puddle two times, thus soaking both pairs of pants I packed) and is sporting a total white-trash attire of diaper and peanut butter stained t-shirt and face. There is an incredibly empathetic woman who watches Froggy sobbing and screaming and says to me with those kind mama eyes, "I'm sorry." I wanted to hug her. Thank God for those moms who relate, rather than judge.

Finally the receptionist said, "The room we had for you went to an ER patient." It will be at least another hour. And instead of a private room, you'll be sharing with another patient." Now this part I'm proud of. I kept my cool. I didn't freak out and say, "Screw the ER patient, my toddler is melting down and I'm melting down and for the love of God, do you have a room for us???" I simply said, "Okay," and snuggled my screaming girl.

An hour later, a kind Neurology tech met us and actually carried our bags upstairs to prep Froggy for the EEG. His name was Conrad, and I love him. At this point I was losing my cool and said, "My daughter has CF and she has to have room with a patient without any respiratory illnesses." He said he would check, and get this, he actually did!

For the next hour, Conrad and Andrea put 23 electrodes on Froggy's scalp with glue and metal, gauze, more glue, and finally a cap. Froggy was an angel, giggling and entertaining the staff. They were enamored and said, "She's the perfect patient." I couldn't have been more proud of our girl. At one point I actually felt sad at how used to this stuff she is. A normal kid would be freaking out, but Froggy knows the routine of "poke and prod."

Our room was still not ready, so we sat in yet another waiting room for an hour until our nurse came to take us to our room. When we finally made it to our room, there was no bed, only a crib. Froggy hasn't slept in a crib in years. I put in the orders for an actual bed, so three hours later, we received one. Our tv was broken, there was no remote, our portable dvd player wasn't working, and we were all a little freakin' tired.

Froggy was hooked up to a computer (reading her EEG) and video camera recording her movements for the night. Finally, by around 10pm, the nurses brought us an actual bed, and our dvd player started working again. All was right with the world.

Our doctors told us to withhold Froggy's seizure meds, so they could register a seizure on the EEG. The excitement of the day, and the decrease in her meds, kept the Frog awake til 11pm (without a nap) and she screamed for a good hour "TAKE ME HOME, I WANT TO GO HOME, GET THIS HAT OFF OF ME!!!!" Our poor roommates were held captive while Froggy realized that we were there for the night.

The first night she slept four hours. Which of course meant, I slept four hours, her poor roommate slept four hours, and the coffee could not get there early enough.

I have to say that pediatric nurses are the most WONDERFUL people in the world. They should be commemorated, there should be an Oscar party, a Nobel prize winning inauguration for their patience and understanding, their kindness and heart. I can't tell you the times we heard, "If there's anything you need, just ask." Even when I pathetically asked for a coffee, they laughed and asked if I needed cream or sugar. Wow! And they were wonderful with Froggy. She was actually showing off for them, doing tricks and somersaults, trying to win them over. And they humored her every whim.

For the next two days, we watched a lot of television, painted with watercolors, and got to know our neighbors. Our roomy was a four year old named Mia who had Leukemia. This was her second bout, and she had eight more months of chemo to go. She was almost bald and had that steroid puffy look that we've all seen on St. Jude commercials, where you bawl and think how completely spoiled we are all with our 'usual problems.' Everyday she was anesthetized to receive chemo, and both her lovely parents and nanny and extended family were there to help her through this part of her life, the part where years from now she will emerge this incredible person who has survived Leukemia twice. Froggy of course loved her and everytime she was given a shot or drug, she wanted to check on Mia to see if "she was okay."

There was one point where Froggy, with her turban head, crept into the other side of the room and I saw these two kids who just shouldn't be in a hospital room. It was surreal, my baby's head wrapped, wires attaching her to a huge machine and camera, and Mia, with little sprouts of hair emerging from her head --these two kiddos at such a young age who are genuinely curious and concerned for one another. There were moments where I held back from spontaneous sobs, and had to concentrate on the fact that this was not permanent, in 24 hours, Froggy would be at the park swinging and sliding, and twirling on monkey bars. And in time, this other kiddo would have a full head of hair and hardly remember what chemo felt like.

After our first night, the team of doctors stopped by and relayed that they did not capture anything on the EEG, but that her brain waves were a little slow. At age three, she should be registering eight, and she's only registering a six. They said that because she's developing normally, it didn't mean anything significant. Hmmm.

At this point the doctor said he doubted she was even having real seizures, because she had been off her meds for a while, and wasn't having any activity. And I was starting to feel like a character in a Lifetime movie who has Munchhausen Syndrome - making up illnesses for their kid in order to get attention. I thought maybe the camera was actually to record if her crazy mother was slipping mickies into her milk? Had we imagined the last year and a half?

Our neurologist said, "Sometimes kids just have weird eye movements, especially while going to sleep, and maybe the twitching is just 'normal' nighttime twitching." I wanted to scream, "This is not normal!!!, I'm not an idiot, I've been a nanny, a babysitter, and now a mommy for three years, and I know normal!" But deciding not to alienate our doctors, or assure them that I am that crazy mom from a Lifetime movie, we agreed that maybe another night without meds would induce a seizure.

Having promised Froggy we would leave the next day, I had to eat humble pie and headed straight to the gift shop for some 'mommy lied to you gifts'. It worked.

Our next night was uneventful, the little stinker didn't have a single eye deviation. For the last week and a half, every time she fell asleep, her eyes would roll up in her head, but under surveillance, with thousands of dollars of equipment and a team of some of the best neurologists in the world watching, nothin'.

The next morning, our Neurologist came in and said again, he didn't notice anything out of the ordinary on the EEG. In fact her brain waves were actually speeding up and now registering a seven! At this point, I started to believe we really were crazy or something in our house was causing her to have seizures. Maybe a mold, a fungus, the lighting, our pets, or non-filtered air, the non-organic apple juice, aliens.

While packing up to go home, about an hour later, our Neurologist returned. "Change of plans," he said. Our tech reviewed the EEG more thoroughly and did in fact note a seizure. Gee thank God for techs who get paid a tenth of what the Neurologists make. He showed us a piece of paper with our baby's brain waves with a few abnormal valleys and mountains. The doc explained that one of the meds (Trileptal) could have been making her seizures worse. And a new medication (Lamictal) would hopefully be the end to her eye deviations and nightly twitchings. He suggested a couple other medications, but with Froggy's CF, the side-effects to her gi-system were not an option.

As we left the hospital with a new diagnosis, a new medication, and some answers, I thought, "We can do this." Hopefully in a year, Froggy will outgrow these seizures and she will only have Cystic Fibrosis. I never thought I would say that, "only CF."

When Froggy first started having seizures it felt like Life had slapped us on the back of the head and said, "Nanny nanny boo boo! Two incurable diseases for you!" Not-fair didn't even begin to express how hopeless and jilted we felt. Why would our girl be forced to endure two diseases, when some people have five kids without a single issue. Why would our sweet child have to explain to her friends and later teachers that she has to take meds before she eats, and can't be in preschool, and that if she has a seizure, this is what you do, and have to miss out on birthday parties because there are too many kids with runny noses, and we can never plan in advance because she may be sick, or her seizures maybe uncontrolled? Why, why, why?

More than ever I feel like now we can handle Cystic Fibrosis. One day at a time, one disease at a time. Froggy will outgrow these seizures, and soon the treatments for CF will be so advanced that her lungs will remain clear, her life will be long, and we will have been given the gift of knowing how important her health is. Like coming out of the dark, the world is that much brighter.

Thank you for your prayers and calls, emails and love.


The DutchMac Tribe said...

WOO HOO! We're so incredibly happy for you guys! Yea for correct diagnoses and 'outgrowable' conditions. (yeah, that's a word)

So, so, soooooo happy.


Unknown said...

I was so happy to see "good news" in the title of your post! I cannot even imagine going through such an ordeal though - glad it is over and you got some answers!
By the way, Bangor, Maine is the anti-LA. I think the culture shock would be too much to take, let alone the weather!

Beverly said...

I am so happy you were able to write this post! Wa-hoo!

Casey said...

YES YES YES!!!!!! I loved the title and it made me smile. Good news!!!!!

I'm so happy that you have correct dx and correct meds and better than all of that - that she will outgrow them! So, so happy for you all.

Cara said...

Hooray for good news! I'm so happy that they finally have Froggy on some meds that should control her seizures and that she will out grow them! How wonderful!

Thanks so much for the play by play of the hospital visit! I loved reading all about it. :)

Anonymous said...

froggy mama - once again...your writing captures such an important time in froggy's and your life. thank you for sharing. i am a "die hard froggy fan" and like others here - am so happy for the outcome. here's to new beginnings! jcn

Mieke said...

Wow! What a roller coaster. We missed you at Pony's party. It was really fun. Soooooooo much to tell you.

holly said...

Yeah for good news!!! I'm so happy for you. You definitely gave me a good cry reading this. No, not an I feel sorry for you cry, but more like an I sympathize and understand your feelings so much that I can't help but cry my eyes out cry. I can't wait for Froggy to join Ojaio on the cystic fibrosis only boat!

fleetfeet said...

Wiping happy tears from my eyes!

You were due (overdue) for some good news. I am so happy for your family!

Smartix said...

Hi Froggy Mama!We haven't seen you in a long time. I'm happy to read the good news. I like your blog, I like your writing, I like you and FD and I met Froggy and so I really hope that things will get better for the little princess and her wonderful parents. I hope we can get together soon, CIAO

Alicia said...

I've been so behind on my blogs. I'm so happy to hear the good news!

It's wild for me to hear Absence seizures and CF mentioned in the same sentence. My daughter has CF, and I have Absence seizures. I am not trying to alarm you-EVERY other case I've heard of children DO out grow them. I'm just unique I guess-my onset was age 18-VERY unusual. And each neurologist retests me thinking maybe the last one mis-diagnosed me! My seizures are definitely managed by my meds.

Didn't mean to get off on that tangent. I know this news must be so encouraging, and yes now we just have to find a cure for CF!

Infidel Rooster said...

Glad to hear you've (all) had a spot of bright news.

Tami Draxler said...

I have been away from blog-land for a while. I can't beleive I missed this!! It's so good to know that you got some good news. And yes, it does seem inconcieveable to think that you are rejoicing over "Only CF."

Give Froggy a hug from us!

mom to Emily 3 w/cf