Friday, May 29, 2009

Are You Freaking Kidding Me?

So, here's kind of an odd story.

As you all read in the previous post, our fourth EEG was last Friday, May 22nd. As of that Friday, we'd been seizure free for just over a week. We were super optimistic. We thought we'd made progress. Then our neurologist didn't call on Tuesday with the results so I called the clinic and got in touch with Dr. Murphy on Wednesday. Dr. Murphy punched me in the gut with the "no improvement, still having seizures" opinion of that EEG.

So when Dr. LePichon called me around 7:30 this evening, I was expecting the same story.

He started off the conversation by apologizing for not calling Tuesday and for just now getting back with us. Apparently he came down with the flu and the hospital suspected that it might be H1N1 (Swine Flu), so they wouldn't let him in the building. Not until the tests came back negative did they let him back in - which was just today.

Anyhow, he told me that he'd reviewed her most recent EEG and that there were no signs of hypsarrhythmia. I was totally expecting no signs of improvement.

Holy crap.

For those of you that don't know, hypsarrhythmia was basically the root of the problem. It is very chaotic brain activity. Apparently it means "chaos" in Latin. Or at least I think it is Latin. Hypsarrhythmia is what shows up on the EEG that leads to the infantile spasms diagnosis.

And there was none.

I was pretty much in shock. I told him that his story differed greatly from what Dr. Murphy relayed to me on Wednesday. He decided that Dr. Murphy hadn't been looking at the most up to date EEG results. Hence the, "Are You Freaking Kidding Me" post title.

I was jumping up and down while still on the phone. Jody started crying. It was unbelievable.

I was adament that Dr. Le Pichon punch Dr. Murphy in the gut the next time he saw him. Then yell at him. Maybe that wouldn't be very "doctorly" of him, but 1) we were so bummed the last couple days because of that news and 2) maybe someone should check the dates.

He continued on that there were a couple of spikes in her frontal lobe, but nothing too wild. He said that it was just about a normal EEG. Unbelievable.

So we're still not completely out of the woods. We can still wind up with something called Lennox-Gastaut . Scary stuff indeed. But we're not going to worry about that until something tells us we need to. Now, that something, unfortunately, would be seizures. Double unfortunately, we don't really know what to expect (nor does the neurologist) so we will stay on constant lookout for anything out of the ordinary for the next few years. Yeah, it could be next week, or it could be in three years. Scary stuff.

Back to the good news, we're going to start weaning Kylie off the ACTH. We're at about .625 mL per day right now, and we'll bump her down to .5 mL for the next five days, then down to .375 mL for the five days following that, then .25 and .125 mL for each of the next five days following that. A total of 20 more days on ACTH. Then, hopefully a few weeks after that we can begin getting out in public again and interacting with the world! Yippee!

Dr. Le Pichon cancelled our next EEG, which was scheduled for this coming Monday, June 1. The funny thing about that EEG is that it was supposed to be our first one! It was originally set up when we first went to our pediatrician's office with this issue on 4/16. So, it would have been right at SEVEN WEEKS from when it was setup to when it would have actually taken place. In that time, we spent four days in the hospital and got four EEGs. Wow. Again, if not for the care of Dr. White and Dr. Nelson (at JoCo Peds) and Dr. Le Pichon (at CMH) this would have been our first EEG!!

However, there is, of course, one big reason all of this has happened.


It's amazing how this season in our family's life has morphed our faith. This has proved that it most certainly is the trying times that test one's faith. It hasn't been easy, and we'll most certainly have more obstacles to overcome relating to this, but it has been amazing to see His presence so clearly throughout.

God is great.

I've been saving the best news of that conversaton with Dr. Le Pichon for last. He told me (a couple of times)...

"I think she's cured."

The C-word. Big time.

Thanks to everyone for everything. We'll continue keeping everyone apprised of little Kylie's situation.

Wednesday, May 27, 2009

Partial Results for EEG #4

Ok, so yesterday was the day we had been waiting for...the results for an EEG that we just knew was better. We waited all day for the doctor to call, and recalled that sometimes he calls late in the evening. He did not call so we had him paged, and apparently they will not page a doctor to give you results. The nurse with the answering service told us we would have to wait and call in the morning. With that said, Matt put a call in to the neuro clinic this morning and we heard back just a little bit ago.

Sooo...our doc is apparently out of the office until Friday, and another doctor (head of neurology) called back and said there has been no improvement. He also mentioned that Kylie had some jerks during her last EEG that were consistant with seizure activity...

...What? Seizure activity, how is that possible when we have not seen a seizure (a seizure that we recognize in Kylie) for the past 2 weeks?! Does this mean she is having different seizures that we are not familiar with, or are they more subtle? Are they truly just jerks, how do we separate those from typical jerks that she has, that any baby has?

Unfortunately this is exactly what we did not expect to hear, and now we have to wait until Friday to speak with Kylie's neuro to get a better picture of what was on her EEG, and have him answer our list of questions...biggest one being "now what?"

Please continue praying for our sweet girl Kylie. She is such a doll, and we love her more than anything else...she is absolutely amazing, so precious, such a light in our lives...a light and gift from God!

Friday, May 22, 2009

4th EEG

Well, yesterday was Kylie's 4th EEG. I can definitely say that I wasn't thinking about what the results may be, or what the future holds for us. It is a great feeling to be at peace with so much that is going on with Kylie and our lives together as a family. I think it is easier in some ways for us all now, because we have a new normal that we have adjusted to, and we have more of Kylie back with us...many more smiles, and getting her to laugh. It is amazing how her infectious smile can erase all of the questions and doubt that try to creep in...God is always at work.

No matter what happens, God is with us and will always remain in our hearts. How awesome it is to just live and follow Him, and allow Him to guide us along the way. He is absolutely amazing and has blessed us with an incredible little girl...we are so grateful that He chose us as her parents!

This is a pic taken after her EEG...such a beautiful princess!

Friday, May 15, 2009

Look What I Learned

Jody called me as I was driving to work this morning and said that the little one had stayed sitting on her own for a few seconds before falling forward and gnawing on whatever was in front of her....

She's had the two middle, bottom teeth for a couple of months now. However, over the past couple of weeks, she's added in one to the left on the bottom, both eye teeth on the top, and one of her front teeth is starting to come in. Holy cow, she's been busy. So just like icing on the cake, the teething thing has been a wearing addition to the fussiness caused by the ACTH.

However, over the last couple of days things have been getting steadily better. She's back to herself - smiling, laughing...all the fun baby stuff. It's really nice to have her back.

A couple of doctor related updates. Our next EEG is scheduled for a week from today, Friday, 5/22. We'll hear back from Dr. Le Pichon on Tuesday, so we're anxiously awaiting that call. We're still visiting our pediatrician every Monday and Thursday at 4:30. If anyone is looking for a good pediatrician, Dr. Bryan Nelson at Johnson County Pediatrics would get our vote. What an awesome guy/doctor! Actually, everyone at that office has been super helpful.

I think that's about it. Good times.

Tuesday, May 5, 2009

Standing Still...

Today was a much anticipated day.

We had our third electroencephalogram (EEG). This was originally scheduled as our first follow-up EEG after being discharged two weeks ago. However, since we got in for another one last week, this wound up being EEG #3.

Dr. Le Pichon didn't see any improvement from the second EEG to today's. Now, that certainly isn't terrible news, but it's not the good news that we were kind of getting used to. We're not really seeing the decline in the clusters that he'd like, so we're going to check back in on Friday and let him know if we're seeing any significant changes. If not, we're going to up our ACTH dosage again.

Here's the scoop on what we're looking for. The drug (ACTH) should knock out these spasms to a point where they're either completely gone or almost gone. If that doesn't work, we're probably in for a rough go of it.

Either way, these spasms will eventually go away on their own. However, if that happens, she's at a much greater risk of all different types of seizures as she grows up. Seizures that are varying in type which makes them very difficult to treat. These would be accompanied by an unknown level of developmental and cognitive delays. Not a good plan at all. So, our hope is that this drug will really begin to take hold and get rid of this nasty stuff.

We'll be back at CMH in two weeks for another EEG and an appointment with Dr. J.B. Le Pichon at the neurology clinic.

We're praying that there is significant improvement. We'd appreciate it if you could do the same.

Friday, May 1, 2009

Official Word

So, Dr. Le Pichon called us back today. He basically said the reason he didn't call was because the results were exactly what he'd told us on Monday. He said there was "marked improvement" from the first EEG to the second. Between the bursts of super high voltage brain activity (that's the problem) he saw normal activity. I guess that's really good news. We're upping the dosage of ACTH again and we'll be back at the neurology clinic for EEG #3 on Tuesday of next week. After that we're supposed to meet with Dr. Le Pichon, so hopefully we'll have more good news to share.

The folks at Johnson County Infant Toddler services came out yesterday. These good people specialize in helping little ones with disabilities maximize their potential. Well, the evaluation went well, and the lady told Jody that Kylie was on par or ahead of the game in her development. So that was good news that she's not already delayed! However, that also means that they won't be back out until we call (because she is delayed or because a doctor gives us some not so good news). We'll hope neither of those happen!

More news to come after our trip back to Children's Mercy on Tuesday.

We can't even begin to thank everyone who has come over to help with the baby, helped with stuff around the house, brought us dinner and most importantly, all of you who have been praying for our family. Thank you.

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