Accomplishments 2014!

I have a confession to make...I have been in a major funk for about 3 months now. I haven’t been able to shake the trials that we’ve faced recently. Usually my one bad day is followed by many good days and I can recover, but lately the bad days have been lengthier than the good ones. To be honest they have been more than I can handle. As I look back on the past few months I am in awe that I made it through. There have been so many setbacks with Lily Kate getting ill so often. BUT Praise Jesus that they have just been setbacks, which by definition is “a problem that makes progress more difficult or success less likely”… “Less likely, more difficult…” But not impossible. So progress has been paused, but prior to these “setbacks” there are so many things Lily Kate has achieved this year. Here are a few of them: SHE LEARNED TO WALK!, she is beginning to connect two words, she can climb and go down stairs with assistance, she can feed herself yogurt with a spoon with some assistance, she can almost climb onto the couch by herself, she can stay focused coloring for about 5-10 minutes, she can interact with Maddy Beth (a year ago she wouldn’t even go near her), she is intermittently using her “pointer” finger and pincer grasp, she can take off her shirt with assistance, she can turn off the light switch, she can throw a ball with 2 hands, she can slide down a slide independently, she no longer has to have her liquids thickened, and she is beginning to communicate her needs and wants to us without prompting. I’m so proud of all she has accomplished this year. I have high hopes for 2015! “ But those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.”- Isaiah 40:31

Lily Kate 2014 Update

Regression. A word I have feared from the beginning of Lily Kate’s diagnosis. I remember Dr. Dobyns saying from our Seattle Children’s Hospital visit in February of 2013, “If she’s regressing then she’s having more seizures…” along with the dreaded words “She’s doing well now, but she may not always be doing this good.” I remember feeling terrified walking out of his office that very cold February day in Seattle. Thinking to myself, “What does the future hold? What will she be like? What does this mean for Casey and I?” Those same questions haunt me everyday along with a million other “whys?”.

The past few months have been the most difficult thus far with Lily Kate. Back in late September we went to Dell Children’s Hospital in Austin to do a 48 EEG and Brain MRI to see if we could catch any seizure activity that we weren’t catching. Prior to our visit things were going ok. Lily Kate was walking better and progressing…slowly…but progressing nonetheless. The first day in the hospital they began weaning her off of one of her medications and the following day the child couldn’t walk. So naturally I thought she was having a reaction to the wean. Her doctor assured me this wasn’t the case. So after a week of vomiting, one ER visit and not walking we were puzzled but walked away from that crisis somewhat unscathed. Ten days later Lily Kate got a cough and fever and was diagnosed with a sinus infection. Since then she has been sick off and on for the past 2 months. I know what you’re thinking… A sinus infection? Fever? Just part of being a kid right? Yes, but when Lily Kate has a fever she has Febrile seizures. And having a fever every 12 days is the perfect recipe for prolonged Febrile seizures. Our most recent crisis included being ambulanced to Children’s Methodist ER because she stopped breathing during a febrile seizure. And then shortly after that we had another ER visit on our Thanksgiving vacation in California visiting family. After two months of increased seizures, constant fevers, coughing, inhalers, cold compresses and many sleepless nights I finally took her to an immunologist. The lab work indicated that there is nothing wrong with her immune system, but that she just never recovered from her initial sinus infection. Lovely. But we press on... Even amongst the regression we see in her. What else can we do? This is our journey. And although sometimes I don’t feel it, I know that Jesus is walking alongside Lily Kate and our family. I know his hand is over my daughter protecting her from worse things I don’t even know about. His provision may not be seen but I know its there. And part of his provision is providing options for care for precious Lily.

We recently saw Dr. Clarke (Lily Kate’s epileptologist/neurologist). Our next steps include getting new AFOs (Ankle Foot Orthodics) to help her walk without falling, and a test called a magnetoencephalogram (MEG) which is a neuroimaging device that measures magnetic fields in the brain. The MEG study will look for the location of unwanted discharges in her brain activity. A VNS (Vegal Nerve Stimulator) looks to be in our immediate future, which will require a surgery. And her doctor also keeps mentioning brain surgery, which I can’t even begin to imagine. And fortunately Dr. Clarke will be leading the study for Cannabis (Medical Marijuana) at Dell Children’s in the Spring and will most likely be able to try it under “Compassionate Use.” Hopefully these treatments will help her and she can begin to once again PROGRESS and not REGRESS anymore.

Lily Kate will turn 3 on January 4th, 2015. The day after she will begin PPCD through Northside ISD. PPCD stands for Preschool Programs for Children with Disabilities. She will attend school 5 days a week for 3 hours per day. Although I am anxious about not being around her near as much each day I know this is what’s best for her. I’ve been told that children in the program excel and progress very quickly. I’m so excited to see how Lily Kate does! I know she will do great because she’s truly a great kid. I'm honored to be her mama.

Please keep praying for her. And for me…to have peace in this journey and to stay courageous. For Casey, to continue to be my rock. And for sweet Maddy Beth, to have a tender heart for her sister as she gets older. I love you all. ~Theresa

Ketogenic Diet

Anti-seizure drugs suck. Lily Kate just began a new one called Banzel and so far it has caused her to be a complete zombie until about 12-1pm, be really moody and stutter her words. Every single day is a challenge as it is, but when a new medicine is introduced I have no idea what my life or her life will be like for the next month. Her life is being stollen from her because of these drugs at times. We can't go to the playground or gym because she's so moody and drowsy that she can barely keep her eyes open. And because she's so moody she refuses to eat her Ketogenic meals that Casey and I spent 5 hours making last weekend. So the potential for seeing the real possible positive effects of the diet are lessened significantly because she won't eat half of what we are giving her. If you want to read about the Ketogenic diet please read below. All information is from the Charlie Foundation, a resource for the Ketogenic diet for epilepsy. Oh how I've been praying that this diet will work for her. I will measure out grams of Coconut oil 10 hours a day if it will allow her to come off of some of the medication she's on. Please Lord let this be our answer! Romans 12:12 "Rejoice in hope, be patient in tribulation, be constant in prayer." Please pray for us as we journey through these trials and of course for Lily Kate that she would be healed.

Frequently asked questions about the Classic and Modified Ketogenic Diets
1. What is the ketogenic diet?
The ketogenic diet is a special high-fat diet that is used for difficult to treat seizures. Heavy cream, butter and vegetable oils provide the necessary fat. The diet also completely eliminates sweets such as candy, cookies, and desserts. Other carbohydrate rich foods such as bread, potatoes, rice, cereals, and pasta are not allowed on the strictest form of the diet, but are allowed on more liberal forms of the diet. All foods must be carefully prepared and weighed on a gram scale. Each meal must be eaten in its entirety for the diet to be most effective. The Classic diet consists of a ratio in grams of fat to non-fat (protein and carbohydrates) of 4:1 and 3:1. The modified ketogenic diet consists of ratios of 2:1 and 1:1.

2. Who can be helped by the diet?
Children with seizures from infancy through the teenage years may be helped by the diet. There is no way to predict beforehand whether it will be successful. Traditionally the diet has been used for children with myoclonic, atonic and tonic-clonic seizures. In every decade since the 1920’s, studies consistently show that 50-75% of children with difficult to control seizures of all types are helped by the diet. Creative recipes have helped to make the diet more palatable in the past few years.

3. How effective is the diet at controlling or eliminating seizures?
Four major meta-analyses (reviews of many studies) have been published in the past 10 years and have determined that the ketogenic diet is effective in reducing seizure frequency in children with difficult-to-control epilepsy. A controlled study published in 2008 revealed that seizure frequency after 4 months was significantly lower in 54 children on the ketogenic diet than the control group of children who were on medication therapy.

4. How does the diet work?
No one is certain how the diet works. A metabolic change occurs in the body which affects brain chemistry. Despite many hypotheses, the mechanism by which the diet works to control seizures remains a mystery. Scientists in several laboratories around the world are working to unlock this mystery with animal studies.

5. How is the diet prepared?
A calorie level is determined by a dietitian for each child based on their age and activity level. To achieve a desired level of ketosis, the diet is calculated in terms of ratios such as 4:1, 3:1, and 2:1. In a 4:1 ratio, there is 4 times as much fat as there is protein and carbohydrate combined. The dietitian devises meal plans that complete the required fat, protein and carbohydrate for each meal. Each meal plan indicates the exact gram weight of each food which must be weighed on a gram scale. A typical meal includes a small amount of fruit or vegetable, a protein rich food, and a source of fat such as heavy cream and butter or vegetable oil.

6. Will anti-seizure medications be reduced after my child goes on the diet?
If the child is on more than one anti-seizure medication, one may be reduced as the child starts the ketogenic diet. The reduction of remaining seizure medication may be made if the child’s seizures improve over time. Some children are able to have their medications completely discontinued. Medications may act stronger with the ketogenic diet therefore close medical monitoring is necessary.

7. How do you begin the diet?
The diet is started under close medical supervision. The diet is begun gradually and increased to the full amount over a 3 to 4 day period or longer. During this time blood sugar and ketone levels are monitored. A fasting period is not necessary to start the diet according to recent studies.

8. How soon does it take for the diet to reduce or eliminate seizures?
The diet can become effective immediately or can take several months. Each child is unique and has different seizure patterns and frequency. There is usually improvement within the first 10 weeks on the ketogenic diet.

9. What would happen if my child “cheated” on his/her diet?
If a child ate or drank something that was not part of his/her diet, they could experience a seizure within a short period of time.

10. Is the diet healthy for my child?
The diet alone does not contain enough vitamins or minerals. A nutritional deficiency could develop without supplements. Special vitamin and mineral supplements are prescribed for each child while on the ketogenic diet. It is also important that the child drink adequate liquids while on the diet.

11. How long is the diet used for?
The diet is generally used for a period of up to 3 years if it is helpful in reducing or eliminating seizures. If the diet is not helpful, it will be stopped within a few months.

12. Are there any adverse effects of the ketogenic diet?
The most common adverse effect of the diet is constipation. There are dietary options to prevent this problem including eating high fiber vegetables that are allowed on the diet and drinking enough water. A less common adverse effect is kidney stones. This problem can be prevented by making sure that the child drinks adequate water. There are two anti-seizure medications which can cause acidosis and kidney stones which should be monitored very closely when used with the ketogenic diet (Zonegran® and Topamax®).

"Lily Kate UP!"

So much has happened since my last post in October. That blog focused on our first time giving her Emergency seizure medication (Diastat) for the first time.  Since then we have given it to her over 30 times.  Needless to say our seizure control has not changed much.  We are still doing the Modified Atkins Diet (MAD) for seizure control in addition to 3 different medications that are administered 3 times per day.  We return to the doctor in a few weeks to see what our next steps are.  I'm pretty certain that we will begin the Ketogenic diet to help with control.  The Keto diet is an extreme diet where the majority of calories (80%) come from fat.  Think butter, coconut oil, whipping cream, nuts, mayo, etc...  The idea of the diet is that the body teaches itself to burn fat rather than carbohydrates by omitting carbs almost completely.  By teaching the brain to run on of fat instead of glucose there are less opportunities for the brain to misfire.  The diet raises ketones thus helping with seizure control. (Experts aren't exactly sure how this diet works but it does for some.) However, the diet is only effective for 50% of children that try it.  Let's all hope this is what works for her.  Also, since October Lily Kate got a baby sister!  Maddy Beth was welcomed into the world on December 22, 2013.  She loves to eat, cry and be held.  =)  Lily Kate is slowly becoming ok with not being the only princess in the house.  And every time she says her sister's name (Maaaa-Deee) she also says the word "cry".  

We are so proud of our Lily Kate.  Although she was a little stressed out at first with Maddy Beth's presence she is overcoming all the change.  Lily Kate is walking and standing up unassisted!  She's not quite ready to go out on a playground and play by herself because her balance creates such an obstacle for her.  Regardless she is doing well.  Thank you Lord.  I often wonder what things the Lord is already protecting Lily Kate from.  I'm certain there are much worse seizures He is protecting her from and worse developmental delays he is protecting her from.  Who knows what else!  Even though the road is tough it could always be tougher.  I'm thankful for how far Lily Kate has come!  She reminds me that each day is precious and a special gift.  May we forever stay in the moment and rejoice in it!

Here's a video of her standing up and walking.  Maddy Beth is our background music.  =)
Lily Kate Update 2014

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.