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.  

Abnormal EEG Results

July 5th: Chase had the MRI done under anesthesia, and this came back completely normal.  The pediatrician who ordered it seemed to report it with an “I told you so” attitude.  But I knew they would find something on the EEG test which was done the following week on July 10th and the days of waiting for the results seemed to take forever, as Chase continued to regress.  The test was being sent to the Minnesota Epilepsy Group in Minneapolis to be read, and I was not hearing from the pediatrician who was supposed to relay the results.  I called to find out the status but of course the doctor was out on vacation that week . I begged the nurse to have another doctor look at the report and call me back since it had been a full week and Chase was not doing well at all and he even looked just ill. Later that day, we received the call that would send us into a panic.  

Video of Chase's Infantile Spasms in July

Although Chase did not have a seizure during the 2-hour EEG, the test results were very abnormal, showing he had just had or was about to have a seizure.  Only then did he get moved up on the list to see the Neurologist, but it would still be a few weeks.  The doctor that called me back (now the ONLY pediatrician Chase sees) understood my frustrations as a mother herself, and she quickly worked with the Neurology department to get Chase started on a medication in the meantime, Keppra.  She was the first person to show any compassion and take action.  Chase started on a very low dose, and we were very excited at first when after a few days he seemed to snap out of his fog and started moving again- even pulling himself up and a few weeks later taking his first steps.  However, the seizures and vomiting did not stop, and Chase continued to be developmentally stagnant in the communication, social/emotional and fine motor skills.  He still would not even eat baby food at almost 11 months.  

Chase's first EEG at 10 months

Videos of 9 month old baby Chase with Infantile Spasms

First Signs of Regression of Development

June 30, 2013. I was in the process of switching pediatricians to another healthcare system completely, out of frustration after reporting these symptoms to no avail, when we witnessed what really appeared to be a seizure.  Chase woke up in the middle of the night screaming like we had never heard him do before.  Tom and I both ran into his room, Tom picked him up and he projectile vomited.  After that, he had several of these head drops, but then started convulsing or shaking for a good 10 minutes.  We went to the emergency room that morning and the ER doctor (who just told us how healthy Chase looked and didn't seem to care about anyone unless they were near death) said “Yep, this probably is a seizure”, as Chase had more of the head drops right in front of him.  He told us we should order the normal seizure workup of MRI and EEG tests, but no one could help us because it was the weekend and these were scheduled tests.  We happened to have an appointment with a new pediatrician the next day on Monday, so he told us to have that doctor order the tests.  The episodes continued to happen throughout that day, more than they ever had.  

At the appointment the next day, the new pediatrician told us this probably was not a seizure but a nodding disorder that Chase would grow out of, and a separate tear duct issue.  We almost had to convince him to order the tests anyway and obviously we were not impressed with the treatment we received or lack of urgency.  There was one practicing Pediatric Neurologist in Fargo at that time, and we could not get in for an appointment for 7 months (!!!) to see her because Chase was not diagnosed with seizures yet.  A new Pediatric Neurologist would be starting in a few weeks and we were told that maybe we could get in to him sooner.  Slowly we were worked through the Sanford hospital system the next couple of weeks.  Tom and I were panicking, as Chase’s development began regress.  He stopped crawling, eating solid foods, and was very lethargic, lying around in a daze.  We knew this was just not right and things were going really badly, and we felt like no one would help us.

On Father's Day- June 2013

Something Is Wrong with My Healthy Baby

Big Sister Anna meeting Chase

Our son, Chase Thomas Enright was born on September 7, 2012, a completely healthy little boy. We had some struggles the first several months of Chase’s life - projectile vomiting (all of the time!), recurring ear infections, and difficulty starting with solid foods-  but overall he was just the sweetest, most laid back little guy even through it all.  I was always worried about him though- he slept way too much and was just too quiet. I was always taking him to the doctor saying something just was not right, but they always sent me home feeling silly.  Tom, my husband, did start sharing the concern that he was extremely quiet though, but we blamed that on his ears being full of fluid or him being the second child with an older sister that never stopped talking. He was just sick ALL of the time.

At around 5 months of age, we noticed Chase’s eyes would well up and huge crocodile tears would fall down his cheeks upon waking up- but he was not crying.  He had still been projectile vomiting every few days but we had gotten used to that and attributed that to ear infections and feeling ill, although that did not really make sense to doctors.  I expressed concern to the pediatrician again at his 6 month well check, but was told this could be a tear duct issue and it would be revisited at the next appointment.  He was still falling asleep wherever he was, whatever he was doing. But it was also cute and we made many jokes about it.  

At around 6-7 months of age when Chase could sit up on his own, the daycare would report that he kept slamming his head down to the ground (always to one side) repeatedly at times.  He had 4 ear infections in a row during the previous few months, so we blamed it on dizziness from inner ear problems.  Around 8-9 months, the daycare reported unusual head dropping episodes during the day, which took us almost 2 weeks to see at home.  At first I thought Chase was ramming his head into me when I held him, but then realized he was having those head drops they had explained.  I had never seen anything like it.  Tom thought when it happened it looked like he had just been punched in the stomach.  These episodes would happen mostly after he woke up in the morning or from naps, accompanied by his eyes kind of scrunching and tearing up and he would get very panicky and cry as if in pain.  He seemed to be conscious but his eyes would dart around and afterwards he would fall asleep exhausted.  They would happen in clusters- sometimes only 2 or 3 in a row, sometimes up to 12.  After this happened a few weeks the daycare said “it is almost as if he is going to have a seizure.”  This was the first time it occurred to us but of course we wanted to deny it.  My mother has epilepsy – and the seizures are nothing like this.