Grab a cup of coffee (decaf) or a drink because this is LONG.
I started this blog back in September thinking one day I might publish it.
We are at a comfortable place now ready to share...
The Things that make US go Hmmmmmmmmmmmm....
It was Rosh Hashanah Day.
12 noon
Cousin Paige had just left to head back to school.
Something wasn't right.
Asher had an episode!?!?
Eyes rolled up.
Body tensed and curled in a C position
Left ear touching left shoulder.
He was stiff as a board.
Several minutes later he was fussing and then fell asleep.
This repeated 2 other times within a 3 hour time period minus the rolling of the eyes.
He nursed in between episode 2 & 3.
We decided not to stay at home alone and took him to the Tot Rosh Hashanah service where we new Softa would be so she could observe him. Something was not right. We couldnt pin point what it was. Still stiff as a board three hours later.
By 6 PM we were in our car headed home from Softa and Papu's house.
We started reflecting on the day and finally one of us blurted out the word neither of us wanted to say.
Seizure.
Was it?
We didnt know.
Panic set in.
Our fingers hit the keyboard the minute we walked in the door.
Infant Seizure - google
Infant Seizure - you tube
More panic. He seemed content and was already asleep. We turned up the sound on the monitor so we could hear him breathing.
We decided to call the pediatrician at home in the morning. Thankfully he is a family friend and we didn't feel too guilty about calling his house. We went over the details of the episode and he told us he would get us an appointment with a pediatric neurologist and unless he had another episode (in that case go to the Children's Hospital) to come in the next day (monday). We spent Sunday at home and Asher took a 2 1/2 hour nap in my lap. I was in heaven since he isnt a huge cuddler naturally. His exam on Monday at the pediatrican was normal however he still wanted us to see the pediatric neurologist. He weighed 17 lbs!!!!!!
We got an appointment one week later with the best pediatric neurologist in Charlotte Dr. Dayal. Daddy happened to be out of town for work so Softa and Nana came with us for support. At this point I didnt know what to think and was watching Asher's every move. We all concluded prior to the appointment that his eyes dont always track consistently and he has trouble focusing. We also noticed that he is very stiff and rigid in general. He tends to throw his arms and legs out in a locked position and arch his back. He isnt the type of baby that lays his head down on your chest and relaxes...(hmm, I wonder where he got that from!?!? mommy!?!?) All of these things were brought up at his appointment with the neurologist. She was thorough. More thorough than any Dr. I have ever been to. All of us agreed we were very impressed with her and the extensive work up she performed on Asher. She agreed that it would be in our best interest to rule out everything possible. We scheduled a sleep deprived EEG for 2 days later to examine his brain wave activity. She also wanted to schedule an MRI to see what could possibly be causing him to be so stiff and rigid. She referred him to a pediatric eye doctor to get a better look behind his eyes and to make sure that everything was normal.
Still inconclusive. There is something called stiff baby syndrome but its something that is typically hereditary...
At this point I tried to stay calm. We knew nothing...but then again nothing was "wrong". My mind kept racing... what if something was wrong and it just wasnt clear cut obvious. Inside I was a basket case but I tried not to show it on the outside. I didn't want to talk about it to anyone other than Philip and he was so darn optimistic that it made me want to worry even more to compensate for his positivity. Typical mom.
Friday morning was interesting. Asher needed to be sleep deprived for his EEG so he would sleep through it so they could attempt to stimulate seizure activity. Of course the day of the test he woke up unusually early at 4:45am. This was way too early seeing that his appointment wasnt until 9 AM. There was no way we could keep him up for more than 4 hours straight. So I nursed him and put him back down. I woke him up 30 minutes later which brought us to a little before 6. I knew we could keep him awake for 3 hours. I am sure he was less than thrilled at this point. He loves his sleep. We got him dressed in his velour jump suit and started playing with him. Yes at 6 AM. This is not normal in our house since we all LOVE our sleep. We looked like zombies and acted like them too...zombies with every light on upstairs! We decided to leave the house at 8 and get to the appointment early hoping they would take us back because he was getting sleepy. We got there at 8:30. We waited until 9:45...The Appointment was at 9 AM....I was pissed. Asher was hungry so I decided screw it. I am going to feed him. Of course he fell asleep while nursing. Great. Just what we wanted to avoid. Finally they called us back. (Why on earth would you schedule a 4 month old sleep deprived EEG and call us back over an hour late!?!? Evidently they dont block off enough time for each child...its tough stuff to get a kid to go to sleep with 24 probes stuck to their head!) We took him back half asleep and of course he woke up the minute his head hit the table. The tech got all 24 probes stuck to his head which was hysterical looking yet cute and scary all at the same time. He started to fuss. Oy. How in the world was I going to feed my child who was laying flat on this hospital style bed with 24 probes stuck to his head. I couldnt pick him up and I couldnt move him.
Picture this....I was leaning over him with my hands on the wall and attempting to dangle my breast over him in hopes that his ever so precious lips might catch it or latch on. Yeah that didnt work so well. And it was so ridiculously uncomfortable as you can imagine. I ended up laying next to/ above him enough so that he could nurse (this too was extremely painful).
Thankfully it worked. He eventually was full and he slowly fell asleep. Of course he loves to shake his head to go to sleep so the probes started coming off. Finally he got situated, asleep and the test began. He was exhausted and fell into REM 2 & 3 sleep really quickly. During the test they flashed strobe lights in several different patterns above his head to stimulate a possible seizure. He was not phased at all. After the test was over the tech tried to wake him up 4 times. He was so tired he did NOT want to get up. Poor little guy. I snapped this quick video of him after the tech had removed all of the probes (before he washed the gunk off his head). So cute. He was such a good boy all morning and he cooperated so well for the test. We were so proud of him and thankful that the results were normal.
This video was shot right after they removed the probes from his head.
Lots of gunk still on his head.
Monday morning we received a call from Dr. Dayal's nurse. She received the EEG report and reviewed it herself. It was inconclusive and she noted a lot of movement. Our child? Active? Noo.. Oh yes! She wanted to perform a more extensive study to completely rule out seizures so she scheduled an EEG with Video to be performed in the hospital for 24 hours.
Asher was admitted to Carolinas Medical Center (CMC) Main on Wednesday morning at 9 AM. Since this was a planned visit to the hospital I brought the camera along to capture some "memories" They requested he wear button up outfits only since nothing could go over his head. Softa bought him two precious Zutano outfits that he wore. He ended up spending the majority of his stay in a diaper as he was very fussy and clamy most of his stay at the hospital. The hospital reminded us a lot like a hotel. They even changed out the floor mats of the elevators every day with the respective , "Have a great Wednesday or Have a great Thursday". Asher was admitted to the Epilespy Unit for his 24 hour study, not the children's unit. It was required than an adult be with him at all time to monitor him. Upon arrival they verified all of his information and symptoms and the EEG tech Jon came in to glue the probes to his head. He attached 19 probes. Asher screamed for all 19. First he applied a scrub that cleaned the surface that they would adhere to. Then he filled the probe with conductor gel and stuck it to his head with a piece of gauze dipped in a special gluey substance. He then placed a device blowing cold air (looked like something you would aibrush with) to quickly dry the glue. After all 19 were attached he placed at gauze like cover over his head to contain all of the cords and then connected them to the back pack so we could move him around the room. He looked like a smurf with the hat on once they were complete. We had to lug him around with this large pack that was attached to all of the cords. He couldnt leave the room we were in for strolls around the hospital. Probably better off seeing that the H1N1 was rampant!
While admitted they performed a genetic test for Stiff Baby Syndrome (which later came back normal) and a slew of bloodwork (normal as well). They made us sleep with the TV on so that the light of the TV could illuminate the room so they could see Asher on the camera. I think its time the hospital invested in a monitor like we have at home. Night vision!?! All this technology in a hospital and I have to sleep with a TV on!? Asher doesnt even watch TV at home! The hospital was great to us during our stay and we got to eat free unlimited food at the cafeteria.
After returning home from our 24 hour stay we found out that Asher's EEG was normal. Dr. Dayal asked us to schedule an appointment with the UNC Pediatric Neurology Specialty Clinic after our EEG. We were hesitant but at least got an appointment on the calendar for January 22. (over 3 months out!?!). Just in case. She also wanted us to follow up with a Pediatric Opthamologist, schedule an MRI and some additional blood work done.
A month went by and we thought we were in the clear. This episode was a fluke. It wasnt going to happen again.
November 3rd, Tuesday. Nana was watching Asher (it was a Tuesday, her day) so I ran out at lunch to Old Navy to do some shopping with my 30% off coupon. I was checking out and I received a call from my mom. "Where are you?" "At Old Navy" "I think you need to come to my house now. He is slumped over in the exersaucer and I think he is having an episode"
Panic set in. Philip was out of town for work for the day and I knew he wasnt getting home till late that night. My mind raced as I drove the less than one mile from Old Navy to my mom's house. I walked in the door and Asher was fussing in my mom's arms curled over like a banana. He was CLEARLY having an episode. His eyes rolled several times. I tried to keep my cool. I called both the Neurologist and the Pediatrican. What was I supposed to do? Shortly after I arrived at Nana's and identified what was happening he fell into a deep sleep. Same as last time. I patiently waited for the Dr. to call back yet panicking inside. I stood over him to make sure he was breathing while sleeping. When he woke up he was still curled over and his eyes were still rolling. 2 1/2 hours had passed since the initial episode. We decided to rush to Levine Children's Hospital for evaluation. The entire ride there his eyes were rolling. As soon as we entered the Children's ER they stopped. Go figure. They evaluated him and decided to admit him. He was supposed to have an MRI two days later so they decided to go ahead and do it now instead of waiting. We got a room by 8:30 PM. This was way past Asher's bed time. Philip met us at the hospital just in time for the room switch. I wasn't allowed to feed Asher from the time we arrived at 4 PM because they needed to sedate him for the MRI. I was engorged and he was starving. Bad combo. By 9 PM we settled in the room and they informed us that they would be coming to get him for the MRI by 9:30 PM. They came and got us and took us upstairs to MRI. They walked us through everything that they were going to do. The tech's were very thorough. I was allowed to go in with him until he was fully sedated. Watching them sedate him was worse than watching him have an episode. My eyes filled up with tears and I had to leave the room. My little baby was being sedated, something was wrong with this picture. The MRI was supposed to take anywhere from 1-2 hours. We went to grab some food at the cafeteria because by this point we were starving. I came back to the room to pump to realize that I only had bottles and cords....no actual pump pieces (I had cleaned them before lunch that day and they were on the drying rack) Opps. Thankfully the hospital gave me a full brand new set of parts to keep! By 1 AM we got the call that Asher was in recovery and was ready for his momma to nurse him. Philip and I quickly rushed up there so I could nurse him. He was very drowsy and quite pathetic looking. Poor guy had been through so much today. We were able to go back to the room around 2 AM. We got ready for bed and finally turned out the lights at 2:30 to be woken back up at 3:30 for blood work!? What in the world!? Why do they need to wake people up in the middle of the night to do blood work....especially to our poor child who hadnt slept in almost 10 hours. It took them ONE HOUR and at least 4 sticks including his feet and arms to draw the blood. Torture, yup. by 4:30 he was exhausted and we were all ready to go back to sleep. Lights out. 5:30 they came back in to wake us up for the morning because he was going to have his sleep deprived EEG (another one) at 7 AM. We were already sleep deprived....Why we needed to be up 90 minutes before made no sense. So we waited. They never showed. 8 am no one, 9 am no one..10 am they come strolling in. Asher had already fallen asleep. EEG was completed and again no signs of seizures. By early afternoon we were informed that we were going to be discharged. Asher had straightened back up by this point and never had an episode from the minute we walked into the hospital doors.
We left with many unknowns and lots of anxiety. We prayed hard and were thankful we had the appointment at UNC to fall back on in a few weeks.
November 21st, Saturday. Asher woke up looking a little crooked. We didnt think anything of it and got ourselves together to head off to Homegoods and Marshalls. He was pretty fussy at the store so I took him to the seats at the front of the store to nurse him. Still pretty fussy. He became quite curled into a banana shape at this point and I had a feeling we were entering the episode zone. After I finished feeding him I carried him to meet up with Philip. I had him facing me against my chest. Before I had time to react he projectile vomited all over my chest, hair and face two times. I blogged about that incident
here. After this episode he never fully straightened out...and his eyes never rolled. We rode it out and stayed in the rest of the day.
December, 6th, Sunday. When Asher woke up this morning his head was slightly tilted but not as noticeable in the past. We decided to go to the JCC (jewish comunnity center) to workout before we were set to meet up with friends for lunch at 1. I nursed Asher in the car right before we went in. He goes to the daycare there while we work out so I wanted to make sure he was full. Upon arrival I noticed he was a little fussy so I put him in the swing thinking he was tired. As soon as I tilted him back to put him in the swing his eyes rolled. Panic. You would think by now I am a pro at this. Nope still panic. Philip had already left to go work out. I stayed in the nursery watching him for another 20 minutes to see if it was going to happen again. He eventually fell asleep and I went to work out. We checked on him every 10 minutes. When we went to pick him up we noticed he was curled into his banana shape and fussy. I nursed him but he wasnt very interested. We packed him up in the car and drove to meet our friends for lunch. I nursed him again in the car before we went in to the restaurant. Right there in my arms he went limp and his eyes rolled several times.
FINALLY - 3 months after the intial episode I broke down hysterical crying with Asher in my arms. I completely lost it. Sobbing uncontrollably. We knew there was nothing we could do unless he stopped breathing or lost consciousness so we just toughed it out. We went to lunch and he had few more episodes. I finally started to panic as the initial episode took place 3 hours prior. I noticed around his mouth looked blue as his eyes rolled back again. I lost it. We picked up everything and walked out of the restuarant and headed to Levine Children's ER again. As soon as the car started moving Asher fell into a deep recovery sleep. I carried him into the ER asleep in my arms and he didn't wake up till I put him on the scale. The episodes were over. Go figure. We are at the hospital. They checked his vitals and did a full work up but couldnt provide any answers.
Monday morning I followed up with the pediatric Neurologist. She contacted the Dr on call at UNC Pediatric Clinic and got our appointment moved up to that FRIDAY! That week was a tough week for us. We had 5 appointments ALL for Asher. Tuesday Mecklenburg County came out to do a development assesesment on him. Because Asher was admitted to the Children's Hospital with a Neurological unknown he was automatically accepted into their in home services program for services such as PT, OT etc. Wednesday was his GI appointment and Cranial Appt (more on this next week). Thursday was his 6 month Pediatrian Appointment and Friday was a trip to UNC to see the experts. During this week I did A LOT of re-researching about Asher's symptoms. I concluded based on other parents stories and blogs online that Asher had a condition called BPT (Benign Paraoxysmal Torticollis). I called the Neurologist in Charlotte to discuss with her but she said she still wanted us to go to the Dr's at UNC to rule all other possibilities out. So we did.
Friday morning we headed to UNC for his appointment. I was very optimistic and nervous. We brought his MRI and medical records with us for their review. We met with two Dr's: Dr Yael Shiloh Malowsky (Jewish!) and Dr. Spencer Weig (very well known in the US). After 2 hours of evulation Dr Weig walked into the room with his business card and a diagnosis written on the back of it.
You guessed it... THE SAME DIAGNOSIS I CAME UP WITH!
Benign Paroxysmal Torticollis
(Note: I didnt mention to them the entire time we were there what I thought it was because I didnt want to sway their diagnosis). Hmmm... maybe I need to switch careers. I've told myslf this many times.
So many of you are probably wondering what this long diagnosis of BPT really means:
1. The episodes are NOT "hurting" Asher despite how awful they look....however it might feel like a headache or Migraine to him
2. He will continue to have them until he grows out of them which could be at any point but most likely around the age of 2.
3. They dont know how this will affect his development. During an episode he might collapse while walking or fall over.
4. The episodes typically occure every 2-4 weeks.
5. We concluded that they occur mostly on the weekends. This might be due to the amount of caffeine I consume during the weekend (STARBUCKS the Devil). No more coffee for me. I dont dirnk soft drinks either so that isnt a loss for me
6. We need to work on his neck strength because before and after an episode he can be tilted for several days causing issues with his neck and back of his head.
7. There are no medicines for this condition
8. This is genetic and most likely is because I have adult migraines
9. He will probably have childhood or adult headaches and migraines too.
10. It is pretty rare
Now that we have a video camera (we got one for Hanukkah!) we hopefully can catch some footage of his next episode.
Some things we learned:
-You must advocate for your child ALL of the time.
-Do not take one Dr's answer as "the word of God"
-Drawing blood on an infant is awful. Asher has been a pin cushion for the past 3 months
-Medical Insurance is terrible no matter how you cut it (You can't put a price on a healthy life!)
-Levine Children's Hospital is AMAZING. We are blessed to live in a city with such an amazing state of the art children's hospital.
We are so thankful nothing MAJOR is wrong with Asher and that we can go on without living in fear of the unknown. We thank anyone and everyone for their support whether they knew what was going on or not. God is great and Asher is a blessing in our lives each and everyday.
Feel free to ask questions. I know I have been hinting around that things have been stressful, not right or abnormal lately without coming out and saying it... so here it is.
All out on the table.
Asher is in awe of the lights on a nightly basis.
Sometimes he stares but often he smiles at the lights while we fill the air with Hanukkah songs and rejoice over the miracle of Hanukkah...
