Tuesday, January 27, 2009

Where we are with neurology (Update on Maddy)

Hi, everyone, So it's been quite a while since I've sent out an official Maddy update. This one is coming about a week late, but for those of you who have known what is (was) going on with Maddy, we surely have appreciated your prayers.

To get everyone on the same page, here's a quick (yeah, right!) recap.

Sometime the week before last I noticed Maddy's mouth twitching and her one arm jerking. Thought it was a fluke. On Sunday morning (1/18) we were sitting with Jed and Alyssa in church, and Maddy was being loved on by Alyssa when Alyssa noticed a repeat performance, plus some eye rolling. Still didn't think too much about it, because it only lasted about 15 secs or so. After another episode on Monday, I called the neurosurgeon with the suspicion that she was having seizures, and they agreed after I described what was happening. Took her to the neurosurgeon on Tuesday to have her shunt checked (head ultrasound and shunt x-ray series), and everything checked out! He gave me a referral to see a neurologist, and they didn't schedule me until February 17 (four weeks out!). At that point, she still had had only one a day. By that night, though, she had three more, and they were lasting longer, taking longer for me to feel like she was really "there." (Mind you, she didn't stop breathing or anything, so they weren't nearly as severe as they could have been, but very scary none the less.)

So at 11:30 pm, I took her to the ER. I had no instruction whatsoever for what to be worried about, or what, if anything, to do when it happened. I was emotionally and physically exhausted, and totally had no idea what to do. (But don't worry, I didn't flip out at the ER! I'm don't do that easily....) The ER doctor called the neurologist on call (where we were scheduled to go in four weeks) and was told that it would be ok to prescribe Keppra (SO much safer than phenobarbital, I was told today), and to call first thing in the morning and tell them to move up my appointment. We didn't get the prescription back until Wednesday night, and she had 8 seizures on Wednesday, last more like two minutes. After that dose, though, the seizures were less frequent and much less "severe" (though they weren't ever really severe compared to the possibilities). Yesterday, she had no seizures that we saw.

Yesterday I took Maddy to our family doctor because of a 103 fever, and he ran CBC, chest x-ray, and UA, and what do you know but that that little bugger has a really bad bladder infection to boot. She has vescicoureteral reflux (reflux from her bladder to her kidneys) and is cathed three times a day, so it's really amazing that she hadn't gotten one before now. Anyway, I'm very grateful that the strong antibiotics have done the trick so that she didn't have to be hospitalized for IV antibiotics.

Today, I took her to the neurologist today, and liked her a lot (that always helps!). She upped her Keppra dose to the correct dosage, so the seizures shouldn't happen at all. She gave me instruction for when to take her to the ER. She also ordered calcium levels to be checked again (You may remember that she had low calcium levels from birth due to her DiGeorge syndrome, but had come off the calcium after her levels came up), to rule out hypocalcemic seizures. And then we'll have an EEG on February 6th.

The poor little girl gave the phlebotomists quite the workout trying to get her blood to flow for the ionized calcium draw. They needed 4ml and they couldn't get it to flow for that long. We were at two labs in the end.

So that is the quick version (heehee) of our lives the last week or so. On top of all this, I was trying desperately to get last week's homework done (due Wednesday night at midnight). But the facilitator told me not to worry about it and to deal with Maddy. I worked all day Wednesday in between seizures and calming her down, and handed my homework in only an hour late! I heard that Uncle RB was rather proud of me! :)

After being gone all day to the doctors and labs, I need to get this week's work finished! Please continue to pray that Maddy will have a peaceful week and that we'll find the answers we need. I decided when Maddy was about, oh, one day old, that I couldn't flip out about every single thing that she handed us. Some weeks I think I would be flipping out every day. God has been good to give us peace and calm through this new rollercoaster. His mercies and strength are perfect and new every morning (nothing like cobbling two verses together!).


j3k said...

Hi I have been praying for you and Maddy and your whole family!!! I don't how I came across your blog but I'm glad I did. I'm from IN and I have a 16 year old daughter who has been a Riley girl since birth. She had the surgery for kidneys and bladder reflux when she was 3 by Dr. Rink (very sucessful) she has had numerous other issues in that area. 2 years ago she was diagnosed with a form of MD called Myasthenia Gravis. Her neurologist is Dr. Patel from Riley and we love him with all our heart. They have sent Kylie to many places for treatment and they are the first to know when it's bigger then them. Best of luck and I will keep all of you in my prayers!!!

Hearts and Hugs

The Wimsett's

Lori said...

Wow, I'm so glad that you found a great Dr. for Maddy and that things seem to be settling down a little bit! I cannot imagine the seizures, I'm sure that was scary for everyone, including little Maddy. I admire your strength and calm through all this, Maddy is a very lucky little girl to have you as her Mom!