EEG Results

Yesterday Seth had his follow up EEG. I think it's safe to say that it was not an enjoyable experience. Seth had to be sleep deprived for four to six hours prior to the procedure. He screamed throughout the entire prep and clean up. Josh and I were unable to see much of the screen, so we had no ideas as to what his results were this time around.

This was Seth after his EEG. He wasn't the happiest baby yesterday!

Today we met with Seth's neurologist to hear the results of yesterday's EEG. His EEG is still showing abnormalities, but there are far less spikes in his brain waves than when he was diagnosed. According to the neurologist, this is considered normal. She said she did not expect his EEG to be completely normal so soon because he is so young. It was explained to us that the brain is still developing, so it will take some time for the spikes to completely disappear.

The major positive is that Seth's EEG from yesterday was easier to read. His first EEG showed so many spikes that the neurologist had to zoom out to see the complete wave. She was able to view the entire wave from yesterday without any problems.

We are supposed to begin weaning Seth off the ACTH today because things are expected to get better over time. We go back for a follow up EEG in three months to see if the spikes in his brain waves are continuing to get better. While today's news wasn't the absolute best news we were hoping for, it is reassuring to know that Seth's EEG is creeping a little closer to normal.

Our second set of positive news today was that we have tentatively been given permission to slowly return to crowds. Josh and I have decided to tackle a grocery store visit with Seth before attempting anything else, but it's so nice to know that we can begin to return to normal activities. We are still very cautious to let anyone other than myself or Josh hold him due to unknown germ exposure, but it's a small victory!

We are hopeful that Seth will continue to respond well to the ACTH and develop normally. We are pleased with today's results and are praying for his EEGs to progress to normal with time. God has a plan for our little fighter, and I know He is with us through this journey in Seth's health! Thank you again to everyone who has kept our little boy in their thoughts and prayers! Stay tuned for more updates!

Waiting

Seth has remained seizure free since Saturday, June 14th. Josh and I no longer feel the need to watch in anticipation for an unexpected round of seizures to hit his little body. Seth is still doing well with the shots.

We have started to notice a couple of side effects from the ACTH. Since it is a steroid, Seth is hungrier than ever. At one point last week, our little porker downed twelve ounces in one feeding! We have upped his intake of baby food in an effort to quell the sudden desire for extra formula. So far, that seems to be working. Due to his increased appetite, Seth has started to get a bit chubbier. He's always been a thin and active baby, so he looks more like a "normal" baby now. We have been told that the puffiness will decrease once he has been weaned off the ACTH.

Several people have asked when he can be weaned off the medicine. The answer will largely depend on what Seth's follow up EEG shows on Thursday. If his EEG comes back clear, we can begin to wean him. If not, we regroup to discuss how to proceed next.  Josh and I are anxious to hear the EEG results on Friday. We are praying that everything comes back normal.

I should also make it known (for those who have asked), that we have been directed by the neurologist to keep Seth away from large crowds until further notice. The ACTH inhibits his immune system, so even seemingly insignificant illnesses are hazardous to him. Josh and I have gone through three full bottles of soap just within the last week! We do not mind visitors provided everyone visiting is currently feeling well and does not mind a few extra hand washings!

I will update again after our meeting with the neurologist on Friday. Thank you to everyone who has been sending well wishes and prayers. We are so grateful for your support!

A Wonderful Gift

Seth has now received five shots in all. The process has not gotten any easier with time. It still feels like my heart is being broken into millions of pieces when the needle goes through his fragile skin. He handles it like a true champion - with a few tears and a brave, sniffling smile.

The first two full days after being given the shot were hard on Josh and myself. Seth not only had more episodes each day, but each one also seemed to be growing stronger. After one particularly nasty episode (46 seizures in a six minute period), I panicked and asked the doctor if this was normal. I was told that it would take a few days before the medicine would start working. I remember thinking, "I'm supposed to just sit back and knowingly do NOTHING as my child seizes?! Are you insane?!"

But slowly, the medicine began to work. By Thursday, Seth had only experienced six seizures. It was a far cry from the nine seizures he endured on Wednesday. By Friday, only three seizures occurred within his tiny body.

Then we got a small glimpse of our own personal heaven. On Saturday, June 14, Seth remained seizure free for an entire 24 hours. It felt too good to be true. I was afraid to utter this observation aloud. What if the seizures returned full force? When I finally dared to whisper it to Josh, we had a small celebration with Seth and braced ourselves for a relapse.

As if Saturday's events weren't wonderful enough, we were somehow blessed with another seizure free day. I am proud to say that Seth has been seizure free for 56 hours now!  Josh and I are holding our breath in anticipation of what tomorrow will bring, but we are finally (and cautiously) optimistic about his progress.

God is so good! We owe it all to Him for carrying us through this. He is amazing!

A Difficult Diagnosis

Monday, June 9th started off like any other day in the Hill household. My husband, Josh, and my son, Seth, were up early and ready to head to work and Mimi's house. Josh was taking the morning off work to take Seth to the doctor while I went to work, but we planned to enjoy our evening as a family like normal. Our plans, however, got changed.

One week prior to this, Josh had noticed Seth nodding his head a few times in a row. It looked like nothing to me, so when Josh mentioned it as a concern, I pushed it to the side. As the week wore on, Seth's head nodding became more violent. By Thursday, he was folding his whole body in half and popping back into an upright position in rapid succession. These odd bowing moments started to occur in clusters and increased in frequency.

By Sunday, I was finally concerned. I still figured we were both overreacting as first time parents tend to do. I googled his symptoms and came across a site dedicated to something called "infantile spasms". I had never heard of this disease before. After reading more about the disease, I discovered it was a rare seizure  disorder that presents itself in infants between the ages of 3 and 8 months. The website stated that if the disorder went untreated, the child would lose the developmental milestones they had already reached and severe mental retardation could ensue.

As a teacher, I was terrified by the prospect that my baby could lose everything due to my ignorance. I didn't want to know that I chose to keep him from reaching his full potential. Josh had taken Seth to the doctor that morning to see what her thoughts were on his strange symptoms. She suggested an EEG to rule out seizures as a possibility. We weren't scheduled until Wednesday, but I received a call a few hours later telling us that some strings had been pulled and we needed to head to Cook's right away. So we left, fully expecting to return home later in the day.

What happened next was a blur of events and emotions. During Seth's EEG, the tech got up and told us that she was going to get a neurologist in to speak to us. I knew then what his diagnosis would ultimately become. Every person we came in contact with would bring me to tears that night. He was admitted as a patient right away. All I remember thinking from that point forward was, "Why us? Why our baby? Did we do something wrong?"

When we recieved his diagnosis, we were told that an MRI would be done to rule out any abnormalities of the brain. Waiting for those results were the longest moments of my life. Luckily in our case, Seth's MRI came back clean, and we were allowed to begin treatment.

Seth was to begin receiving a daily shot of a steroid named ACTH. ACTH is an anti-seizure medication and not guaranteed to work, but it was our best option at giving Seth a normal life. The clencher? Josh and I had to be the ones to give him the shots. I don't know about you, but I had never been able to handle watching someone get a shot, much less give one myself. I didn't think I could do it. Voluntarily hurt my child? I don't think so. However, I ended up surprising myself and gave him the shots. I have learned that I can do anything for the health of my child.

Right now, we are still waiting to see if the medication is going to work on Seth.  It's only been four days since treatment began, but we are hopeful that the ACTH will do its job and stop the seizures. God has been carrying our little family from the beginning, and I have faith that He will carry us through this as well.

This is our story of infantile spasms. Please feel free to check back on his progress. Thank you all for your prayers and support!

Megan, Josh, and Seth