Seizures Still Suck

Today is day I would not want to repeat. And I can't help but to wonder how many more of these kinds of days lie ahead in our future... Will there be hundreds more? The unknown is so scary, but nothing is scarier than watching your baby girl go through seizures however "mild" they may be. With Lily Kate's current bout of seizures, which look like blank stares with chewing of the mouth and mild twitching, there's danger of the Partial seizure becoming a Generalized seizure. (Partial is in part of the brain and Generalized is the entire brain.) And then with a generalized seizure with her particular brain malformation there is a high risk of Status Epilepticus which is a constant state of seizing. This can be extremely damaging. So back to today... This afternoon as Lily Kate woke up from her nap she had a Partial Temporal seizure (the same kind that was shown in her recent EEG). Something about this one scared me more though so I grabbed her Emergency seizure medication (Diastat, which is essentially Vallum) and administered it. This is what her doctor has instructed us to do when a seizure goes beyond 5 minutes. Its supposed to be preventive of the seizure getting into the whole brain as I explained above. So I called 911 right after I gave it to her so they could come monitor her breathing because there is danger of it affecting the respiratory system. I just held my daughter as tight as I could and begged the Lord to help her as I heard the sirens in the background. I just kept thinking the entire time as I always do when she has a seizure "Will she be the same afterwards? Will she regress? Will she be able to say "mama" again? Is this going to wipe out all she's worked so hard to learn up to this point? Is all the work we've done to get her caught up going to be for nothing?" The seizure lasted for about 10 minutes and finally she came out of it very groggy and tired because of the Diastat. They hooked her up to oxygen, checked her vitals and glucose. Vitals were fine but glucose was low so they suggested she be taken into Methodist Children's Hospital. Our ER visit was brief and we went home with higher glucose levels. The whole time I couldn't help but to wonder if her glucose levels were low because of the Modified Atkins Diet she's on for seizure control. (The idea of the diet is that it gives the brain very little glucose to run off of thus decreasing the abnormal brain activity) We were told that of course being on a 10 grams of carbohydrates per day could affect the glucose level simply because she's not getting many carbs but that ultimately her particular glucose level wasn't the catalyst for this seizure. We aren't certain what caused this breakthrough seizure. So right now we are using modern medicine and diet to help with seizures. Lily Kate has become an Atkins dieter with her new favorite foods being chicken, CHEESE, CHEESE, avocado, hot dogs, CHEESE, EGGS, EGGS, heavy whipping cream, some berries, Atkins desserts made with stevia, and EGGS AND CHEESE. Did I mention she eats alot of eggs and cheese? Thanks the Lord she likes both of those things! So I'm hoping that eventually this diet will be a large part of her seizure control. They say it can take up to 3-6 months for it to be effective or to cancel out that its not effective. This option is way better than increasing these crazy anti-convulescent drugs that we pump her little body with. Poor baby. In the meantime please pray for NO MORE SEIZURES for Lily Kate or for God to give her better seizure control somehow. And for pregnant mommy to breathe and know that Christ reigns in moments when the storm is more than I can take. Still trusting in Him, Theresa

Seizures suck

The months of June and July have been challenging. Lily Kate's epilepsy started getting worse with some strange events I weren't even sure were seizures. When most people hear the word "seizure" they think of an out of control person convulsing on the ground. Well true this can happen, known as a grand mal, but the ones we were seeing with Lily Kate were far from this. The ones she has been having looked like she was just out of it and chewing something with her mouth. We would call her name and she wouldn't respond. It has been torture. In the course of a month and a half she had about 15 of these kinds of seizures that lasted anywhere from 5 minutes to 15 minutes. Everytime she had one I called the doctor and he continually increased her Keppra and ended up adding another medicine called Onfi. After several of these seizures and 24 hour ambulatory EEG we found out she has been having "Temporal seizures coming from the left side". These are partial seizures that only happen in part of the brain. After many increases in both Keppra and Onfi we think we finally found an anti-epileptic cocktail that seems to be working for now. Not fun. I hate pumping my 19 month old daughter with these crazy medications everyday. What are the long term effects? Who knows? But it's the only choice we have right now.

On the bright side Lily Kate has NOT regressed. Praise the Lord that heals and saves and rescues! She has been making some great connections in Speech therapy and Occupational therapy. She didn't even qualify for government assisted speech therapy (ECI) because she is a chatterbox. (We still have her in private therapy though) She is a mockingbird! And her fine motor skills in Occupational therapy are improving as well. She has an emerging pincer grasp and is being very purposeful with how she picks up things and places them. Her cognition is coming right along. She understands a lot. Sounds certain animals make, who certain people are, naming various things (everytime she sees something she knows the word for she says it aloud), says hi to everyone in every store, says "bye" and immediately says "wuv you" (love you) after telling them bye, and she sadly knows what a "time out" is. Its her least favorite thing. =) Thank you to everyone that has been praying for her during this time. Please don't stop. God is listening. Your prayers matter to Lily Kate. She would tell you she "wuvs you" if she knew you were praying for her.

New doctor, ankle braces, and seizure

How did 2 months fly by without an update on Lily Kate?! We have been busy needless to say. Lily Kate got her ankle braces around mid May. They are really helping to align her ankles so that she can stand and learn to walk correctly. She doesn't seem to mind them except when I'm putting them on in the morning. She kicks furiously to make sure I have difficulty putting them on. See her braces below:


We finally found a great doctor that's not too far away. His name is Dr. Dave Clarke. He's in Austin at Dell Children's Hospital. He is brilliant. He is an epileptologist, which is a neurologist that only specializes in epilepsy. He gave us great hope and said that if or when Lily Kate has more problems we will never give up and just let her seize. He said that if the medications can't give her good control then there are brain surgeries that can help. Hopefully this will never be an issue, but according to her diagnosis it will be. I can't help but to fear my daughter's future. While other parents dream about what their children will do or be one day, I get to bite my nails and wonder when my daughter's seizures will start and how horrible they will be. Will she regress? Will she have to stay home from school because of them? Of course this is my fear talking. Something I continually struggle with. Here's Lily Kate with Dr. Clarke.


Lastly, we had a pretty bad week a couple of weeks ago. Lily Kate randomly got a really high fever which we later found out was a virus. I was alternating Advil and Tylenol but not close enough together. Her temperature got up to 104.1 and she had a 4.5 minute seizure. It was horrible. We called the doctor on call and he told us that it happened because she's more susceptible to seizures when she has a fever. Scared me to death but thank God she's ok.

Lily Kate is still not walking but working on it. She's getting really heavy so I hope she begins soon. Its amazing seeing a "typical" 17 month old walk. I just ache seeing the struggle my daughter has each day just balancing. And these other kids just walk so easily. Its not fair. But she is special and unique and one day this will all make sense. Until then please continue to pray for her development and protection and for me to cope better. Here's a video of her at therapy learning to walk.

Spring 2013 Update

The world of toddlerhood is much different from babyhood. Why don't they write manuals for this kind of stuff? =) Lily Kate is everywhere! She is is cruising on furniture, tables, beds, garbage cans (which she says "no" when she does because she knows mom says not to), and pretty much anything she sees. Last Friday she got fitted for Sure Step braces for her feet and ankles. They are small braces that will be inserted in her shoes and are supposed to give her more support to realign her feet so that she can stand correctly without rolling in her ankles. She's getting close to walking but we still have a way to go with her balance. We recently saw her ophthalmologist for a check-up on her intermittent extropia (the tendency to go outward) in her eyes. We were instructed to continue patching in hopes that the eyes will outgrow this problem. She also explained to us that Lily Kate's vision is probably a little distorted which makes it more difficult to balance and be precise with her fine motor skills. I have no doubt that she will overcome this though! I think her brain just has a bit further to go with refining her vision. As far as her communication goes....well let's just say that she is a pretty strong willed child. When she doesn't want something she lets you know with a dynamic "NO"! She is saying her animal sounds when asked, imitating a lot, and naming objects or people she recognizes. I'm super excited about her progress communicatively! She recently had a swallow study that showed improvement but also still some penetration of thin liquids. So her diet is somewhat limited still to pureed solids, soft bites and thickened liquids. Again, this is something that she will overcome with therapy. We have an appointment with a new doctor in Austin next week who is an epileptologist (a neurologist that has a few more years of school specializing in epilepsy). Hopefully this doctor will be able to give us some information in regards to epilepsy that will help her. Praise Jesus that Lily Kate hasn't had any more seizures since the one on Nov 9, 2012! I truly believe the Scriptures that are being declared over her have been protecting her. Thank you precious Lord. I'm so thankful with the progress Lily Kate has made though. She is a fighter and a cute one at that!

Trip to Seattle

.

Seattle. The city where we would find out the real diagnosis and prognosis for our beautiful daughter. I'd been anticipating this trip since we found out about Lily Kate. I remember sending in every single test result, MRI image, EEG, Swallow Study, and Therapy report dating from June to December 2012 to the man that discovered Lily Kate's brain malformation and its link to the DCX gene, Dr. William Dobyns. At first we were told that we could only send material to his research lab where he would review the results and report his findings to us. We were also told that it would take up to 8 months to hear back from them. Thankfully through a friend that also saw Dobyns I learned that we could just call and make an appointment. So I did. And off to Seattle we went. So here is a summary of what Dr. Dobyns told us: Most of the information we already knew except for the prognosis

Lily Kate has a brain malformation called Subcortical band heterotopia. Its a neural migration disorder. In typical brains the gray matter migrates to the perimeter of the brain. Lily Kate's gray matter did not make it there. Instead it stayed in the middle of the white matter and formed a band. Lily Kate's entire brain is affected. There is not one area more affected than the other. Thus, because of the plasticity of the young brain no specific skill is affected more than the other. We just know that she will and does have intellectual and motor delays. As far as the prognosis goes...well he has seen many cases of this exact condition. So he truly is the expert on SBH. He said that although Lily Kate is doing great now she may not always be doing this great. The reason is because of the epilepsy. He told us that her epilepsy will get worse as she gets older. And that the key here is keeping it controlled, which can be very tricky to do. He said the reason these kids don't do well is because of the epilepsy. And that the best case he's seen in a full grown person with SBH is the mind of a 15 year old. We aren't sure why this happened. There is a chance that I am a "mosaic" carrier of this gene. Meaning it doesn't show in my blood work but I carry the DCX gene mutation. Or it was a freak thing that happened during her development in the womb.

We left feeling like we heard the bad news for the first time all over again. We had no idea that it could get worse. We knew that she was at risk for seizures, but we had no clue that she could have up to 30 seizures a day. I really can't explain how I feel right now. Probably the best word to describe my condition would be sadness. I am numb from crying, screaming, worrying, driving to therapy 4 times a week, wondering when her epilepsy will get worse, worrying the what-ifs about everything... I am sad and scared. I am terrified of what the future holds. But. I am reminded of Christ. And His goodness. He is good. Even if things here on earth suck temporarily. He is nothing but good. Even though I don't understand it. He has a purpose in all this. So I'm trying with all my might to hang on to the hope to which we are called to have. He is all I have left. So I have no choice but to hang on for dear life to my Lord who loves me. Who loves Lily Kate. Who loves my husband. He knows what's going on and he cares. And he hears my prayers day and night. He hears me declaring healing over my daughter even though the prognosis is not good. Oh how I hope he will answer "yes". Please join us in praying for our precious girl. Pray against epilepsy. May Lily Kate re-write the research done on this condition. I hope it says "Epilepsy is common amongst SBH, but there has been one case where epilepsy was not significant in a patient named Lilyana Comstock." And may the students reading it know that it was because of Christ's power.

"The sun of righteousness will rise with healing in its wings." -Malachi 4:2

"Nevertheless, I will bring health and healing to it; I will heal my people and will let them enjoy abundant peace and security." -Jeremiah 33:6

"He sent His word and healed them, and delivered them from their destructions" -Psalm 107:20

"Your light shall break forth like the morning and you healing will quickly appear, then your righteousness will go before you and the glory of the Lord will be your rear guard." -Isaiah 58:10

Happy 1st Birthday to my Crawler!

My pastor in DC always taught his congregation to be specific with
prayers. To ask for miraculous things in great detail. I'll never forget
some of his stories that grew my faith and inspired me to start
praying like that. Along Lily Kate's journey I've been on my knees asking for specific miracles simply because I've felt called to do so. My first big request was "Lord please help Lily Kate to crawl by 11 months." I thought I was going to wake up on December 4 (when she turned 11 months) and find her crawling in her crib. But my timing is not His timing. Instead she crawled for the first time on January 1, 2013 and I couldn't have been more thrilled and humbled by the God who listens and answers our prayers! You see, Lily Kate did not turn 12 months until January 4, 2013 so technically she was within 11 months of age. Unbelievable. But really its not unbelievable. I've witnessed so many miracles over these past few months that I've lost count. My next very bold prayer is that she would walk by 18 months. I hope you'll join us in praying for that miracle. He is faithful whether He answers "yes" or "not yet". Move over toddlers. Lily Kate Comstock is on the move!