June 2014

Chase is now almost 22 months and he has been a very busy boy.  He proudly claps and cheers at himself after almost everything he does, if that gives you an idea of how much he is used to everyone around rooting for him on a daily basis.  He is climbing on the furniture, standing on top of tables, and flushing things down the toilet like a mischievous little boy.

Chase started speech therapy 6 weeks ago and the positive changes have been coming very fast.  He had started having tremendous tantrums frequently- it seemed he knew exactly what he wanted but he had no idea how to communicate.  The tantrums have stopped for the most part and he is much happier- finally pointing at things, using multiple signs and a few words just in the past couple of weeks! He is eating better too, although very particular and issues with certain textures.  He is now at 4 therapy visits at daycare each week and we cannot speak enough praise about what this has done for him and our family.  

We are unsure but I suspect that Chase had some "normal" head drop seizures last month while he had a fever.  We immediately contacted his doctors at Mayo, who said they would work with our local hospital to get tests done so we did not have to make the long trip there. We were weary based on our past experience here with Sanford Neurology, but it was interesting (and shocking) to see them hustle over a weekend to get him in for an EEG the next Monday morning.  The local neurologist called me back an hour after the test that Monday with results, which were also sent to Mayo for verification.  I cannot help but wonder if this was because Mayo ordered the tests and how things would have gone if I tried to arrange this on my own.  Regardless, the panic was because the hypsarrythimia (abnormal brain pattern) could still come back, but it had not. It is very common for kids with IS to have other seizures especially when ill, so we were advised to watch him closely.  If Chase has "normal" seizures, we can live with that.  Unfortunately in our perspective, this is really nothing compared to what he had been dealing with.  

Chase finally learned to bite off foods such as corn on the cob

The most exciting news is that Chase had his skills reevaluated last week and most of his skills are now only 1-4 months behind for his age!  That is pretty amazing, realizing that all of his skills were measured at half of his age or less when the spasms stopped.  Language was further behind, however only 6 weeks ago he was measured almost 5 months behind where he is now so he is bridging that gap quickly.  He is truly a rock star.

This little guy has had his mom and dad on their knees begging God for mercy and although we could not be more grateful for the outcome, it has still been a hard and emotional trip. We have nightmares. I personally have a hard time being around babies a certain age (about 8 -15 months) because I can't help but mourn that normally exciting time of development we truly lost with him.  I’m scared to see my niece in a few weeks, who is coming up on that age when Chase's head drops started.  I’ve been in a public place and watched a baby appear to "drop" its head (which wobbly baby heads do all of the time) and screamed out loud, then started bawling.  Time will heal and we have so much to be happy about, but the fear and pain is still fresh.  June 29th is coming up, which is the date last year that Chase had his first recognizable seizure and the spasms started happening all day long but we didn't know what they were.

Our lives have changed from this but in a good way.  It has brought my marriage and our families closer.  We have started going to church every week and praying together.  Chase's older sister Anna is the most caring little girl who loves and protects her brother to no end, and consistently talks about Jesus and prays for the sick.  I have been contacted now several times to talk to families who have infants with seizures.  Chase will be fine, but if we can help even one other family get answers sooner when they don’t know what is wrong with their child, then this has been worth it.  

Chase enjoying the water

April 2014- Continued Success

Chase has changed our perspective on development so much as we get so excited and celebrate the smallest of his accomplishments.  It is because we know just how lucky he is and we will never forget that.

Another trip to the Mayo Clinic in Rochester early in March brought more relief and exciting news. Chase had a second completely normal EEG!  We now can wait 6 months until the next visit which would bring us to right around his 2nd birthday in September.  If that EEG is normal, we will discuss weaning him off of the topirimate.  Although this was amazing news, the neurologists' developmental assessment of Chase was not as positive as that of our local therapists. They repeatedly mentioned the future being very challenging as Chase will need a lot of attention and will have trouble in school.  We can understand they don’t have the most positive outlook from our own research on infantile spasms and their comments about what they usually see happen with these children. While this was disheartening to hear, it put me in enough of a panic to come back home and reevaluate if we are doing everything possible to help Chase.  We increased the frequency of his therapies and set different goals.  All we can do is have faith that Chase will be unlike most outcomes.   

Another normal EEG!

1st ER visit for being a normal crazy boy!

 The biggest shift recently is Chase no longer having so many special needs but becoming a normal toddler boy.  We were starting to work on placing a direct support person to help full-time in his daycare room because he required much more work than the other children his age, especially with feeding and going to sleep.  You can imagine our joy when the daycare told us they did not need it anymore because he was catching up so fast!  He started using a therapeutic weighted blanket to sleep which helps tremendously.  We are fortunate to be in an exceptional daycare with small class sizes that has gone above and beyond to accommodate his needs.  

A teddy bear holding the check presented to Jacob

A friend who works at a local bank asked me to participate in the bank's "Pay It Forward" program.  I received $1,000 to give to an individual, family or organization in the community.  I chose the almost 2-year old boy, Jacob, that we had been connected with in our area, who also had Infantile Spams.  On St. Patrick's Day I brought the check over to the family and it was one of the best days of my life.  This encouraged Tom and I to think about how else we could personally give back and help other children suffering from epilepsy.  We decided that each year we would give a percentage of the profits from our family lighting business to to an organization that helps children with epilepsy, and we are making plans for that starting this year. 

I found this old video of Chase from last October after Chase had taken ACTH for only one month and it is amazing what it does to the body.  Luckily he was back to normal within only a few months. 

February 15, 2014- A New Year, A New Boy

It has been over 10 weeks since the last update.  We have been busy and I guess as the saying goes, no news is GOOD news!  If someone would have told me even a month ago that Chase would be where he is at today, I would not have believed them.  He is unbelievable.  He is amazing.  He is our little miracle.

After our last trip to the Mayo Clinic at the end of November when we found out the great news that Chase's EEG was clear, he slowly begin actually interacting with us and others.  He had been in his own little clouded world for so long, it was amazing to see him start recognizing us when we picked him up at daycare- even if at first smiles were for only his sister.  The blank look he would get in his eyes slowly started to be replaced by awareness. He started to reach up to be held and cling onto us, rather than feeling like a (very heavy!) wet noodle.  It was a wonderful feeling.  These simple things I never thought about before and took for granted with our daughter, I had wondered when-  if at all - would ever happen with Chase.

Christmas Day 2013

On Christmas we brought Chase back to the Healing Shrine
Tom took him to each day at our church after he got out of
the hospital in September.

For basically 5 months during the time he had infantile spasms and was treated with ACTH, most of Chase's development had been frozen (except the walking - which cannot be explained).  The development slowly started up again in October after the spasms stopped, but around Christmas when Chase was almost 16 months old, the changes started coming fast.  The week of Christmas he finally clapped his hands for the first time, another milestone for which we had been patiently awaiting.  He started being more alert, laughing with and chasing other children at daycare. This was good, this was REALLY good. And then he said "Mum-mum".  Even though it has only been a few times and I don't even know if he is saying "mama", it is the best sound on earth!!  There were many days I truly feared I would never hear that sound come out of his mouth.  Christmas was an exceptionally emotional time for us, realizing what could have happened "80-90 percent of the time" and that we don't even know and never will know how lucky we are to have dodged that bullet.  We visited Chase's local pediatrician in January, the first time she had seen him since he had finished the injections. "He even has the Mayo Clinic excited!" is what she said ecstaticly, noting she had never seen so many exclamation points in a medical report as the most recent one sent to her from the Mayo Clinic.  She was astounded and said she had never seen this excellent outcome.  

Now it is the week of Valentine's Day, and Chase is practically running up to us happily hysterical when we pick him up at daycare.  He will actually sit for a few minutes and look at a book.  He is banging blocks together, and banging everything and anything.  He is a tornado, a typical boy getting into everything he isn't supposed to and more quickly than we can keep up with. He just started waving his hand bye-bye a week ago.  He no longer drinks a bottle on a daily basis (only in a pinch if we can't get his medicine in- which can be stressful) and with a lot of persistence and occupational therapy, he is now feeding himself some finger foods.  It's funny how we have changed from the crazy parents who wouldn't let our first child eat sugar or anything the least bit unhealthy at this age, to feeding Chase a steady diet of hot dogs and M&M's, among other crap.  When you have a kid that would not eat for so long, you are just excited they will eat anything!  When you have a kid who has been through this nightmare and that medical treatment, the worst cold, flu, or hand, foot & mouth disease doesn't make you flinch.  And Chase has had all of these things the past few months and he did not flinch- he has become one tough cookie.

The Early Intervention therapists and daycare teachers have commented that Chase is a completely different boy than he was only 2 months ago.  Although he is not really saying any words, Chase is making new sounds and that is a good sign.  We will most likely need intensive speech therapy down the road but if that is all, I think we can deal with that.

Along this journey, we keep hearing stories of other children that family, friends or acquaintances know or knew with Infantile Spams, and the story is never good.  It is devastating- it is a teenager in diapers, it is a grown adult with a feeding tube and unable to communicate, it is even death.  We now know Chase's story will be good.  As we watch him today dart around happily, we cannot explain and we don't know how we have been so lucky, but he is our little miracle.

In his favorite place- the Tupperware drawer

Feeding himself !

November 26, 2013: All Clear!

November 26, 3013:  We are back in Rochester for the follow-up EEG after one month.  Last month they saw activity consistent with a focal seizure disorder, and the past few weeks have been like a roller coaster. Chase was doing really great and we noticed improvements in his development- even throwing temper tantrums just like his sister did at this age!  Then last week, he caught a virus at daycare and was really "off".  This is an example of how this diagnosis has put fear in us forever.   He would wake up from naps dizzy and fall over. He was miserable especially when he woke up and would not smile at us or focus on anything.  (This reminded us of when his brain activity was abnormal.)  We spent too many hours crying last week and did not sleep, anxious to get back here for his test, just sure that they were going to see something on this EEG.

Funny picture of the boys- Luckily the crying did not last long!

It turns out, Chase was just acting like a miserable child with a virus and we will forever be paranoid :).  We found out today that Chase had his first all-clear EEG and we do not have to return for 3 months for another test!!  He will stay on the topiramate for at least one year with clear EEG's before they do any experimentation of taking him off medication.  He has a very high chance of developing other seizures later in life, so we will always be on guard but he has had one of the best turnouts that we could ever wish for.  The doctors discussed how Chase has a lot of work to do to catch up, but we feel good that we are already doing everything we can possibly do at this point to help him.

2 of the 3 Pediatric Neurologists we have been working with at Mayo,
Drs. Wong and Perumpillichira

My new mission is to share our success story to help other families facing this devastating diagnosis. There are many terrible outcome stories online as we personally discovered, which added to our stress. Of course every situation is different, but I would like to share our positive story.  I have successfully contacted the marketing lead for Infantile Spasms at Questcor, the manufacturer of the Acthar gel (ACTH) which stopped Chase's spasms.  During this Thanksgiving week, she is planning to share out story with the team at Questcor to remind them of why they work hard and do what they do every day.  I have also contacted other Infantile Spasms support groups and neurology organizations.

This Thanksgiving, we are most thankful for Chase's success.  He is an amazingly strong and resilient little man and we tell him every day he will do great things in his future.

November 18, 2013:   The past few weeks we have all been sleeping again and life is getting back to normal.  Ahhh.  Although I still randomly freak out, and my husband is patient and loves me.  (He made me write that.)  Chase's gigantic cheeks have gone down a bit, and his appetite has come back after adjusting to the new medication.  About 2 weeks ago, there was a noticeable change in Chase and he started being able to focus better, even stopping to look us in the face.   His little brain has been so overwhelmed healing and learning so much, so fast.  He is now 14 months and had been evaluated by Early Intervention at 7 or 8 month old levels for everything other than gross motor skills, so we have some work to do.  Basically most of those skills froze in their development when the spasms started.

Early Intervention has begun working with Chase weekly at daycare, and he has upcoming consultations with occupational therapists for his eating issues and speech delays.  However, yesterday he really started babbling so that was very exciting for us!  Although Chase's new hobby of biting wasn't going over well at home or daycare, it didn't seem out of anger but him just wanting to chew.  The daycare has been reporting recently that they are noticing improvements, like he will actually sit and play with a toy for a minute and that he has clapped his hands together (although we have to see it to believe it!)

Chase's first Halloween- Witch Anna & Lion

Chase won't eat textured food-
EXCEPT Twizzler's?

I have also been connected with another mother in the area with a son about 4 months older than Chase who had Infantile Spasms.  Although their story is different as their son had a stroke in utero and began having seizures the day he was born which then turned into IS, it was SO, so wonderful to talk with someone who truly understood the diagnosis and had been through the same things.  I hope to see more of her and meet the rest of her family.

Tom and I have now had time to sit back and reflect on what has happened the past several months and it has brought the most emotion and tears.  We had literally been running on autopilot (and fumes), just getting done what needed to be done.  We are so grateful for how Chase is doing now, realizing the odds and how badly this could have gone.  We have been amazed the most at the generosity and kindness of people we barely know from our church.  Just yesterday we received a pile of Target and grocery gift cards in the mail from the Pastor at our church, and a sweet card for Chase made by a religious education student.  This week a new friend from the church is coming over to meet Chase and bring a quilt they made for him.  Tom and I are looking forward to helping others in the church in some way who have gone through similar situations, when things slow down a bit for us.

The Next Bump in the Road - New Focal Seizure Activity

On October 22, we went back to the Mayo Clinic for another EEG and meeting with the neurologists. We were feeling wonderful because we knew the spasms had stopped and Chase was already changing so much. That day, Chase had blood work done to test his cortisol levels while we were there (since ACTH suppresses cortisol production and they had to be sure this was rising since tapering from the ACTH so that his body could fight infection again). We also had to meet with the nephrology (kidney) doctor since Chase had consistent high blood pressure while on the ACTH. The cortisol was low so needed monitoring, but his blood pressure was going back to normal. Chase also had to have a vision exam after taking Sabril, but he passed that with flying colors.  Whew.

A few hours after the EEG we met with the Neurologists and they gave us some news we weren't expecting. Chase did sleep for this test (unlike last time) and they were able to see he had activity consistent with a focal or generalized seizure disorder. The good news is that these type of seizures were obviously not as destructive to the brain as infantile spasms, and they could pinpoint exactly where in the brain this was occurring so it should be easier to get under control with medication. But this was not what we wanted to hear, so soon. We wanted to hear that he was free and clear of any problems and this was the end of our journey and everything would return back to normal. "We just do not know how his development will be", is what they said. "We will do everything to give him the best shot at life that HE can have." The conversation about where he was at with his development and his future was not sounding so positive anymore, and Tom and I were back on the next drop of our roller coaster ride. Chase would remain on the Topomax and we would return in one month for another EEG and evaluation.

Chase at Mayo Clinic October 22, 2013

EEG's were no big deal for Chase anymore

University Square in downtown Rochester from the 16th Floor of the Gonda Building

Happy swimming at the hotel pool

Tapering off ACTH and Feeling MUCH Better

October 4, 2013: Chase was feeling so much better after a few days of decreased amounts of the ACTH in his injections and was so happy – but now he would NOT sleep.  He would stay awake during the day for 16 hours, without one nap.  He just stared around in amazement, like he was seeing the world for the first time.  It seemed like he was overstimulated and suddenly aware of his surroundings like he had not been for a long time. He must have been walking around in a fog before. It was so wonderful to see him alert (albeit overly) and showing interest in toys by picking them up. Throughout the next few weeks, Chase didn't even notice his injections any more.  We realized what a tough little guy he had become. 

The next few weeks were still hard, but exciting.  Chase now had started the Topomax, so almost immediately his appetite decreased.  We could barely get him to take his bottle with medications!  He was now hyperactive- darting from one thing to another.  We could not get his attention, which was a little disturbing but we were so glad he was moving and interested in things around him.  I would call Tom crying and excited that Chase got into the garbage or the toilet, everything around that we had become so used to not worrying about because he was not interested in/did not notice ANYTHING before.  Suddenly these things you take for granted (and can be frustrating when you have kids) were the most important events in our days! Chase went back to daycare at the Goddard School in Fargo and things were still pretty wild in his little brain. They were so wonderful and accommodating, as Chase had never had a real sleeping or eating schedule like all of the other children. In the next few weeks it was now exciting to see him start to follow somewhat of a normal schedule!  

Chase (obviously) feeling better.  He just loves being outside!

Great News- ACTH stopped the Infantile Spasms!

October 3, 2013: Two weeks later we had just begun tapering the ACTH and were back at Mayo Clinic in the Gonda Building 8th Floor we had become so very familiar with.  It was the first EEG where Chase sat completely still and didn't even flinch as they scratched his head to attach the leads under the infant cap.  It was almost eerie.  We were so nervous during that EEG, we watched the computer monitor trying to decipher the brain activity but did not know what we were looking at but somehow it did not look good.  We left the room sick to our stomachs and had to wait over 2 hours to meet with the Neurologists to go over the results. It felt like days.  I knew the moment Dr. Joseph walked in with the biggest smile I had ever seen on his face that we were wrong. 

Chase ready for his EEG- hoping for good news

Chase and his new belly and cheeks at Mayo Clinic October 3rd

The doctor reported great news – Chase’s brain activity was back at a normal level for a boy his age!!  They were a little upset that he did not sleep during the EEG but his brain activity awake looked great. The plan now was to continue the taper off of the ACTH, but also start on the Topamax as an extra precaution.  They were hitting it hard.  They needed to monitor him very closely in the coming weeks because these seizures like to come back, so we were scheduled to come back in another 2 weeks for another EEG.  We were told that he had a very high chance of developing other types of seizures later in life, so unfortunately we will always be on guard.  That night, we celebrated with a great meal at our new favorite Rochester restaurant, Chester’s.  Chase just sat with us and didn't make a sound but looked around. 

Chase's EEG while he was awake was back to normal brain activity for a boy his age!

Tom (originally from Illinois) vowed he would become a
MN fan if a MN hospital saved our little boy.
Here is the new MN Fan!

Thumbs up after hearing the great news!

Going Home with High Hopes- 1 Month of ACTH

Chase on September 16th

Chase on October 2nd 

Sunday, September 22nd- On day 6 of the ACTH, Chase had his first day with no spasms! Our hopes were as high as the sky!

Chase was now immunodeficient so he could not go to daycare and risk getting sick or infection during the duration of the ACTH injections. Tom and I began our shifts of each going to work for half a day. Tom owns his own lighting business and luckily my employer Spectrum Aeromed was completely supportive and flexible.  

The next 2 weeks of the full dosage I would say were the hardest we had ever been through as parents. Chase was just miserable, crying all day and all night long. It was so hard to see him in so much pain and it was tons of work feeding, diapering, doing laundry all day long. Chase would drink an 8 ounce bottle of formula every hour and ate 3-4 full meals of baby food each day and snacks all day in between. This was quite significant since he would barely eat baby food prior to this!  He would wake up all night long screaming, miserable and hungry. He gained 30% of his body weight within a week and could barely walk around.  His stomach bloated out. And the diapers…  We went through diapers, formula and food like you have never seen.  Our daughter Anna would walk around with her hands over her ears and would run and hide in a closet when it was time for the injections.  

Chase paced aimlessly and cried like this every waking minute for 2 weeks...

Morning and night, Tom would hold Chase down, and I would give the injections (the nurses told me I would get used to it but it never got easier).  Chase would scream in terror each time he saw us coming with the needle.  It was the hardest thing we have ever done, but each day there were no more spasms we just focused on that fact and it made it easier.  We had to visit his local pediatrician 3x a week during this time, who reported his blood pressure and blood test results to the doctors at Mayo.  

Obviously by now, our beliefs had turned around. Although I did not know it at the time, Tom later told me that he took Chase to church every morning and prayed for him and had a priest bless him there. We had a priest from the parish I grew up in come to the house and bless Chase as well. He was on the prayer chain at both churches we attended and we started sending our daughter to Sunday school at this time. Ironically, during her first week the lesson was on how Jesus heals the sick.

Chase's stomach was so hard & bloated it looked
and felt like it would explode!

Not a happy boy

Hospitalization- Beginning the ACTH Injections to Treat Infantile Spasms

September 17, 2013: I took my mom (Grandma Judy) on the second trip to the Mayo Clinic. Tom and I had already missed so much work and we just figured they would give us the new medication and we would return home. Although I knew things were not going well, I was shocked when the neurologists came in the room in a panic at Chase's EEG test results from earlier that day. They hypsarrythmia (the abnormal brain pattern between seizures consisting of high amplitude and irregular waves and spikes in a background of chaotic and disorganized activity which helped the doctors diagnose his condition), was no longer intermittent but constant. Basically he no longer had any normal brain activity. The 2 weeks between the last EEG showed remarkable progression of his condition. 

The spinal tap and all of the other tests results came back unremarkable, so there was no known cause for the Infantile Spams. I was told this was the best circumstance to have. However, I was told we had a VERY small window of time to get these seizures to stop for Chase to have any chance of leading a somewhat normal life. They said we needed to start the ACTH steroid injections immediately and Chase would need to be admitted to the hospital for monitoring the first few days, as there are very serious side effects. In addition, we needed to be taught how to give the injections at home. I agreed without even calling Tom. I knew he would want me to do anything possible to help Chase.  

Chase's EEG on September 17

It was almost 6:00 pm and the Mayo Clinic offices were closing and we needed to go over to St. Mary's Hospital. The regular hospital admissions were closed for the day, so they had us report to the Emergency Room to be admitted to the hospital. The next few hours is a completely different story for another time, but I did NOT need to see what I did in the ER after learning this bad news! Whew!! I am still trying to erase those visuals from my head. 

Chase had his first injection that night. He did not sleep well after that, but I had no clue what was about to happen next with him. The stay in the hospital was the most insane time. I was there by myself (Grandma Judy had a bad cold and had to stay at the hotel), and on top of Chase not sleeping more than 1 or 2 hours at a time, a different doctor, resident or nurse from several different departments, social worker, hospital chaplain, arts and crafts person (not kidding), or any other person you could possible think of came walking in the room literally every 8 minutes. It is a teaching hospital so there were a couple of times there were literally (I would count as they surrounded Chase and I) 10+ people in the room at one time. It was overwhelming. My cell phone rang every half hour, from Tom, our church, our daycare, Early Intervention in Fargo, to the medication manufacturer, to Walgreen's Infusion Center trying to line up the shipment of the drugs to our home (which was a complete mess.)   The next few days in the hospital were miserable.  

The hour or 2 I could have spent sleeping at night, I lay in my hospital cot crying and screaming to God to do something! I talked to my mom about our anger with God. Over a lot of tears, she gave me the best advice I could have ever received. She told me- NOW IS NOT THE TIME TO TURN YOUR BACK ON GOD. I got it. I turned it around and started praying. I promised God I would do ANYTHING if he saved my boy's brain.

Chase became a "wild man" just as they said would happen. He did not stop moving and I was afraid he would hurt himself on the hard floor and sharp edges in the hospital room but he pulled my hair and bit me when I picked him up. I put him in the crib often and he would bang on the sides of the crib like a maniac He ate nonstop. They said he would be hungry and gain weight but I did not anticipate to what extreme this would happen. He was put on a number of other preventative medications due to the side effects of the ACTH: Zantac to protect from stomach bleeding and ulcers, Bactrim to prevent infection, pyridoxine (Vitamin B) to help with seizures, and he was still tapering off of the anti-epileptics Sabril and Keppra. Chase's blood pressure was extremely high, so he was put on Diurine. The nephrology team had to keep checking on him and were concerned with possible kidney damage.  The ACTH (Acthar Gel) was being shipped to Minneapolis and took time to get insurance approval. Once he had started the injections he could not stop, so even after Chase was released from the hospital 3 days later we had to move to a hotel and go in for injection appointments at the infusion center of the hospital morning and night. Tom had arrived the day we were being discharged from the hospital because he was losing his mind not being there with us.  

Chase passed out long enough for us to enjoy lunch at Mac's in Rochester,
the day after we were discharged from the hospital  

Chase's blood pressure still did not lower so he needed a one-time dose of isradapine and they held us for hours the morning we thought we could leave to go home. The dose of Diurine was then doubled going forward and they finally let us go. The discharge plan was that Chase would receive the full ACTH dose for 2 weeks and we would return to Mayo for an EEG. If there was no longer the hypsarrythmia we would begin tapering him off of the ACTH for 2 weeks after that and he would be done. It was very dangerous to take this any longer, as long-term use caused many health complications and even diseases. His immune system was compromised so he could not go to daycare during the time he was receiving injections. Plan B was to add another medication, Topiramate, to his treatment if the spasms did not decrease within one week.

We received the call that morning that the Acthar Gel was in Minneapolis at the Walgreen's Infusion Center, so we could pick it up on the way home. We were informed there that we needed to be VERY careful with the medicine, as each injection dose was just under $7,000. At 2 injections, that was $14,000 a day, for a month over $400,000!! Luckily, my health insurance covered every penny.  We arrived home on Saturday, September 21st and were on our own to juggle this new complicated schedule of injections and medications, which was very scary.

What a relief! Picking up the medication that was
our last chance of saving Chase's brain!

Chase's First Treatment of Infantile Spams- Sabril

August 31, 2013: Chase had been up to 3 to 8 clusters of spasms each day, usually 3-12 spams in each cluster.  The first week on Sabril (Vigabatrim) was promising - they went down to 1 or 2 clusters a day.  However, they didn't stop and around his first birthday on September 7th they progressively increased.  That was a somber celebration for Tom and I, as we were trying to put on happy faces for family and friends during Chase’s birthday celebration but knowing things were going downhill very quickly.  He was starting to fall over and hit his head all of the time, so we had to set up a safe blocked-in area in the living room and we were worried about sending him to school.  During the second week, he suddenly took a turn for the worse. The clusters started having up to 30 spasms and the last few days before getting back to Mayo for the follow-up EEG, Chase was basically either sleeping or having seizures. When he was awake he would just walked in circles or bury his head in blankets on the floor. His sister Anna would constantly yell out to us “Chase is doing that THING with his head again!” Again, we were getting so used to it, we did not notice how bad it was really getting.

Chase's First Birthday

The First Trip to Mayo Clinic and the Real Diagnosis

Tom and Chase at the Mayo Building in Rochester

Anna entertaining Chase

The week of August 26, 2013 we drove the 6 hours to Rochester and although we were very worried about Chase, we didn't have many expectations out of the trip other than they would just tell us Chase was on the wrong medication and hopefully find the right one.  Chase had an EEG the first day and we met with the Neurologists for almost 3 hours that afternoon, just answering questions.  They did not give us any answers at that time so we were still pretty calm about everything.  The only thing they did tell us was that each of the head drops was a seizure, so he was actually having 50-100 seizures a day, which was not how we had been looking at it as we had though each cluster was one seizure.  They scheduled an MRI and spinal tap (Lumbar Puncture) under anesthesia the next day, and the following day he was admitted to the Epilepsy Monitoring unit at St. Mary’s Hospital at Mayo for 2 days.  The worst part of that was gluing on the long-term EEG leads for the hospital monitoring, which took hours while Chase screamed.  His head was wrapped to protect the leads and he had a little “backpack” of wires attached to him the entire time.  We had to remain in the small hospital room under video surveillance for the duration of the stay, which was pretty miserable.  

DIAGNOSIS

Right before being discharged from the hospital the team of neurologists came in to give us news that at first confused us.  They told us Chase’s diagnosis was Infantile Spasms (IS) or West Syndrome, which did not sound so bad at first.  We didn't understand why they had such a large team of doctors surrounding us and talking to us like they had to tell us someone died.  They were reluctant to explain what that meant but insisted that we need to get the seizures to stop as soon as possible and jumped into the options for medication, either Sabril (Vigabatrim) or prednisone (ACTH).  

They strongly suggested trying the Sabril (Vigabatrim) first, although there were serious side effects such as permanent vision damage.  We were still confused and looked at them like they were crazy- why would we risk his eyesight for this medication?  They just told us the benefits greatly outweighed the risks, so we trusted them and agreed.  They handed us pamphlets of information and told us to read them and they would return in a bit to answer any questions.  They said not to read a lot online because there was a lot of grim information out there. Unfortunately, in the haste of packing up the hospital room and dealing with Anna (age 4) bossing the nurses around and bouncing off the walls, we didn't really read the information.  We had read all about seizures before.  They scheduled our trip back in 2 weeks for another EEG and we still truly did not understand why we had to drive all the way back so soon.  Only on the way out the door did we read the information and it hit us like a train. 

Infantile Spams is a very rare and catastrophic form of epilepsy that, if left uncontrolled, can destroy the brain and lead to mental retardation or even death.  The statistics were grim- only 10-20% of children with IS had mental brain function later in life.  Even if controlled, most kids developed other types of debilitating seizures later in life.  The more we read, the worse we felt.  In an instant our dreams of Chase’s bright future changed.  We suddenly had a million questions for the doctors.  

During the next few weeks, Tom and I cried A LOT, freaked out on each other many times, did not sleep, and became very angry - especially with God.  We did not understand why He would do this to an innocent child.  We begged Him to do something terrible to us instead!  We were not going to church and were really confused about our faith.  

Frustration with Misdiagnosis

July 30th: Chase was finally seen by Sanford’s new Pediatric Neurologist, who diagnosed Chase with myoclonic epilepsy, because the seizures moved only one part of his body- his head.  I was glad to have such a firm diagnosis and we were told his brain activity was going back to normal in between seizures, so we could feel good at least about that. The eye watering still did not make sense to him and he thought this was a separate issue, but would do more research.  We just knew it was ONLY when Chase had these seizures and had to be related.  The dose of Keppra was doubled and we were sent home with a scheduled follow-up appointment 3 months later in October.  The increased medication had no effect in the coming weeks.  

Chase at the lake August 2013

By this time, Chase had seen 2 different chiropractors, had started Vitamin B which is supposed to help seizures, and special vitamin food supplements.  We bought the most expensive formulas because we were afraid he was reacting to something in the formula or food he was ingesting.  He had energy work done by a therapist who does intuitive healing.  We rubbed DoTerra frankincense oil on the bottoms of his feet and neck before he slept every night.  We were trying everything we had heard of could possibly work to stop the seizures.  We even considered not using cell phones or WiFi in our home in case that was doing something to his brain.  

For some time now, even though Chase could take a few steps he was always staying within just a few feet of us. He was constantly falling down and getting injured.  As the weeks went on, he started to move around more. This was really frustrating to me because people who saw him for short periods of time thought he was fine because he could walk, and just didn't understand why we were so concerned. However he really just darted around aimlessly and continued not to progress in all of the other skills. He would be transfixed by patterns and just stare at certain colors, patterns or lights, to the point where I would bring him to the grocery and people would comment on it. He was not interested in much- he did not pick up toys at home, he didn't even notice our cat (which shocked us after our daughter chasing and infatuated with animals at this age!)  We did not have to put anything away because he didn't get into anything like a normal boy of this age. He was taking about 4 naps a day at daycare and a few at night, so basically he was sleeping A LOT.  I also think being around it every day, we got used to it and didn't realize how bad it was getting.

We kept all of our fun summer plans and took Chase along, but we were doing this to distract ourselves from the reality of what was going on. We were just hoping this would stop on its own (as EVERYONE we knew kept telling us would happen because they knew a child with seizures and they grew out of them), but that didn't look like that was going to happen anytime soon. Frustrated, I decided to send Chase’s medical records and symptoms in to the Mayo Clinic in Rochester, Minnesota.  When I called they said they would contact us to let us know IF they could help us.  However, within 2 days I received a call that Chase was scheduled for 5-7 days of tests and appointments the following week.  We were shocked at their extensiveness and urgency of our visit, but knew we had to drop everything and go.