Wednesday, February 26, 2014

Our Precious Titus…Living With Epilepsy

Well, it has been over a year since I wrote anything on my blog and so much has taken place since then.  On April 22nd, 2013, our precious Titus David was born! He has brought more joy and more fun into our lives than we could have ever imagined! He is 10 months now! I can't believe it!  He started out in the womb as an active little guy and came out of the womb ready to go.  He started army crawling all over the place at six months and pulling up to standing at 8 months.  He is currently learning how to get into or climb onto everything! He discovered the toilet, the toilet paper roll, and how to climb into the bathtub this week.  Needless to say, we can't take our eyes off of him for one second. He has the biggest smile and the best laugh, he loves people (even complete strangers), he gives kisses, claps and high fives on command, and never stops moving.  We are blessed by our little guy everyday!


And now for the hard part. The part of our sweet Titus that is bringing tears to my eyes as I type.  Five months ago, I was home with Titus when out of the blue he started having a seizure.  I called 911 and an ambulance came. They immediately started an IV and gave him medicine. The seizure lasted a total of about 15 minutes. We were taken to Children's Hospital in Dallas where we stayed over night with him and they did an EEG the next day. The EEG came back normal so they sent us on our way and said a lot of kids have one seizure and that he would probably never have another one again.  But deep down I didn't have a good feeling about the whole thing.  Mainly, because I realized after Titus had that first seizure that about a week before the seizure happened I had noticed Titus having some brief one second body "jerks" randomly throughout the day. I thought I was startling him or scaring him and making him kind of jump. But once the seizure happened, I knew they must be related. The doctors didn't really seem to listen to me when I told them about the little jerks I had noticed and sent us on our way.

The short body "jerks" continued over the next week or so and even got a lot worse. He started having over 50 or more a day.  We were very concerned, as well as my pediatrician, who sent us to a pediatric neurologist in Grapevine.  We saw her and she wanted us to have another EEG done. That night, after seeing the neurologist, Titus had his second long seizure (lasting about 15 minutes). This one stopped on its own right after we arrived at the ER. That next week Titus had his second EEG at Grapevine hospital.  We found out that afternoon that the EEG was abnormal and she wanted us to be admitted to the hospital immediately because she was afraid he had something called infantile spasms (which is a super rare, super scary, often debilitating form of epilepsy in infants).  We were shocked. We were scared out of our minds. We googled infantile spasms and read all of the awful things about it. We couldn't believe this was happening!  We were admitted into Cook Children's Hospital Friday evening and they immediately hooked Titus up to an EEG machine to be monitored continuously while we were there.  They also monitored Titus by video, and every time Titus had one of his "jerks" we would press a button to mark it on the EEG and the video.  The next day at around 10:00 am they took the EEG electrodes off of Titus and he had an MRI done.  That was a nightmare…5 hours of no eating beforehand because they had to put him to sleep for the MRI….not fun. 


We made it through the night, through the MRI, through all of the blood work, and finally got to meet with the neurologist for some sort of diagnosis.  We quickly learned that Titus did NOT have infantile spasms…Praise God…and that his MRI looked completely normal.  But his EEG was definitely abnormal.  He was having  quick one second seizures every time he had one of his little "jerks".  So, they diagnosed him with idiopathic epilepsy, which basically means they don't know what is causing the epilepsy.  The neurologist said that we would just have to wait and see how things continue to play out.  He said it was maybe something he would outgrow but maybe not.  He said the fact that Titus was having a lot of short little seizures throughout the day was actually more concerning than if he was just having a few longer ones.  So, we received good news and bad news that day.  We were so thankful that Titus did not have infantile spasms and that his blood work and MRI all looked completely normal but he has Epilepsy…what does that mean? What does that look like? How long will it last? Will medicine help? Will this affect his development? We had a thousand questions that could not be answered by the doctors…we would just have to wait and see.  We were discharged from the hospital with prescriptions for a daily seizure medicine and an emergency rectal seizure medicine to give him if he had another seizure lasting longer than 2 minutes.


That was the beginning of our journey with epilepsy.  Now, here we are almost 5 months later.  We have been through multiple increased doses of medicine #1and added medicine #2 with not much success.  His short little "jerk" seizures are about 50-75% better depending on the day but his longer tonic clonic seizures have gotten worse.  In the last month or so he has been having about two a week that last anywhere from 2 to 15 minutes.


On December 18th, he had his first seizure that did not stop after we gave him his emergency medicine.  We ended up at the ER where they gave him 3 or 4 different medicines through IV before the seizure finally stopped after over 45 minutes of him continuously seizing (the technical term is status epilepticus or SE).  We were admitted to Cook's Hospital again to be monitored over night because of all the medicines he had received they were worried about watching his breathing and his heart rate.  We spent several hours in the Flower Mound ER, were transported by ambulance to the Cook's ER, spent several hours there, and then we were finally admitted to a hospital room. The medicine made Titus crazy and restless but he seemed to be doing okay otherwise.  He began running a fever the next day and we found out that is probably what had triggered the bad seizure. Often, when a kid has epilepsy, fever lowers their seizure threshold tremendously and can cause really bad seizures.


At the beginning of February, since Titus' seizures were getting worse we were admitted to the hospital again to do a 24 hour EEG and look at putting Titus on a different medicine called depakote.  The doctors have been hesitant to switch him to this medicine because it has some possible scary side effects and they don't like to give it to children under 2 years old.  The overnight stay went well and they got plenty of seizure activity on the EEG.  The doctors and nurses at Cook Children's have been amazing!  We have been so thankful to be in such a wonderful hospital and be so well taken care of.  The neurologist and the epilepsy specialist agreed that they wanted to try one more medicine before they put him on depakote.  We were thankful to try medicine #3 and hold out on taking depakote a little longer.  After we came home from the hospital and added medicine #3, Titus had an amazing week. The best week he has had in months.  No long seizure and only a couple of "jerks" all week! We were so excited and so hopeful that this was maybe going to be the medicine that worked for Titus….and then Titus got sick again with a fever.


We called our neurologist, put him on extra seizure medicine, took him to the pediatrician, and went to sleep Thursday night feeling like we had done all we could do to hopefully prevent another crazy seizure.  I awoke suddenly at 2:00 am to hear Titus having a bad seizure (he makes kind of a weird throat noise if he is having a really bad seizure).  We immediately gave him his emergency medicine and then called 911 when it didn't seem to be stopping.  They came and gave him a shot of some medicine and then drove him to the Lewisville ER.  He then received 3 or 4 different medicines and yet the seizure continued. After over 45 minutes of seizing, and 5 different medicines, the seizure stopped but Titus' oxygen level began to drop.  He was not breathing well enough on his own so they had to intubate him and put him on a ventilator to help him breath.  This all happened so fast and was probably the scariest moment of my life as I watched them yelling at each other and urgently trying to help him breath better and keep his oxygen level up.  This is not what any parent wants to see happen, but I think it was especially traumatizing and scary for me after having already watched my first son die….I was freaking out watching this drama play out before me with my healthy precious Titus.  We were then transported by helicopter to Cook's ICU.  Titus was completely out of it for about 10 hours.  Friday afternoon, they were able to take him off of the ventilator but he was still having trouble keeping his oxygen level high enough so he had to be on oxygen (through his nose) through Saturday morning.  It wasn't the seizure that had affected his breathing but all the medicines they had to give him to stop the seizure.  It took over 3 days for all of the medicine to wear off and Titus to return back to his normal self.  By day 3 he could finally crawl around again but he looked like he was drunk and he would fall over if he tried to stand up.  It was so sad! Thursday night and Friday night were two of the longest nights of my life…I think I only got a total of 6 hours of sleep both nights combined.  All of the blood work came back normal, Titus' fever went away, and he looked about 50% normal by Sunday morning so we were able to go home Sunday afternoon.  Wow! What a nightmare!


We are home. Titus is back to his normal outgoing self and life seems almost normal and uneventful at the moment.  We are continuing his new medicine and in the past week we have only seen a few short once second seizures.  We are waiting on the results from a genetic test that they drew blood for in December that takes over 3 months to complete.  This test will tell us if his epilepsy is being caused by a genetic abnormality.  We are hopeful that maybe medicine #3 is still going to help control Titus' seizures.  We have been praying without ceasing. We have been praying that the genetic test comes back normal. We have been praying that maybe this is something he will outgrow. We have been praying for a miracle….that God would heal our sweet Titus completely.


I am not going to lie, lately there have been so many days that are really hard.  There are days when I am exhausted and overwhelmed.  There are days when I just want to have a "normal" healthy kid.  Days when I don't want to be driving to Cook's for another doctor's visit, going to the pharmacy to refill another medicine, running through the grocery store to find a bathroom because Titus is having a seizure and I need to give him his emergency medicine.  There are days when I just want to be able to leave Titus with a babysitter.  I want to be able to leave him in the church nursery without checking my phone every 5 minutes.  I don't want to end up in the hospital every time Titus gets a fever.  I don't want to ride in another ambulance, or see Titus put on a ventilator, or spend another hour in an ER or another night in the hospital…..there are so many tough days!  And yet I wouldn't trade any of the tough days if it meant Titus wouldn't be in my life.  The truth is Titus probably wouldn't be here had our first son, Timothy, been a normal healthy baby.  I have known from the day we found out that we were pregnant with Titus that God must have some big plans for his life.  When he first began having seizures, I found myself only begging God to heal Titus and I found myself overwhelmed as the days turned into months and the seizures continued.  A Focus on the Family broadcast about an amazing godly mom and her little boy with cerebral palsy (who is now a grown man) helped me see how I might begin to pray differently.  This little boy's life had been tough, to say the least, but God had used his cerebral palsy and his testimony in a mighty way to spread the gospel.  

God is beginning to change me.  I still pray for healing for Titus and believe that someday God will answer that prayer, but I pray even more for Titus' heart.  I pray that Titus will come to know the Lord at an early age and that his life will be a powerful testimony to others and that many will come to know the Lord through the seeds that he plants.  Maybe that will be through a powerful testimony of living his whole life with epilepsy or maybe that will be through a powerful testimony of how God healed him from his epilepsy.  I don't know at this point….but what I do know is that God promises He has a good plan for Titus' life and right now, as hard as it may be, epilepsy is a part of that plan.  I pray everyday that God will give me the strength I need to endure.  I pray that He will give me peace that surpasses all understanding.  I pray that He will increase my faith and my trust in Him because there are so many days lately when my faith is weak and it's hard to trust Him completely.  I pray that He will give me the wisdom I need to be the best mom that I can be to this little guy as our journey with epilepsy continues.