Week 3

We went to see Dr. Kabbani this morning and we were ready to take Grace off of the ACTH, we saw a little reduction but not much in the seizures. however we left with the plan of increasing her to double the amount we started giving her to go for one more week. Kabbani has had a patient in the past that did not react to the ACTH until they got to this high of a dosage, so it may just be a dosage thing. We are also going to increase her klonopin (other seizure medication she is on). I think this is an attempt to treat the seizures as nothing is really happening so far, but the good thing is that klonopin is a muscle relaxer so it will counteract the steroid. I can't imagine Grace on only the steroid.

Increased Steroid Use

We went back to Dr. Kabbani after a week of being on ACTH. Unfortunately there was not a significant decrease in seizures so we will be increasing her dosage by 50% for the next week. We will know in two weeks of starting ACTH if this drug will work for Grace. We feel like it is our fault that Grace is not getting any better. Since we give her the drug and that is all we can do we feel like we are failing her. We have to increase her Prilosec to double the amount, the insurance company didn't like it at first but it is preventive so she does not develop stomach ulcers which is yet another side effect of the ACTH. Grace's blood pressure is high so we have to start her on a blood pressure medication as well.

Bad Dog

No Hoover I don't want my face licked!

Injection 2

Today we (Joy) actually gave Grace the injection of ACTH, you could hear the skin tear as the needle broke her skin. No parents should ever have to give their baby a shot. We are incredibly thankful that the home health nurse took her own time to come back to our home to assist us.

Now it is kind of a waiting game to see what happens with Grace's seizures.

Injection

This morning the Iowa Methodist Home Heath came out to deliver Grace's ACTH and all of the supplies we will need to give her the drug. ACTH has to be given by injection and we will have to give it to her. Dr. Kabani said this agency would come out for a week to give/assist with injections but we found out that they only come out once. The nurse that delivered the supplies and gave Grace her first injection apparently saw the fear in our eyes and volunteered to come back tomorrow before going to work to assist us with our first injection.

We went to our pediatrician today for Grace's 4 month checkup, one would think with all of the recent visits to doctors this would have just been taken care of already. We will not be able to give grace her 4 month immunizations until after she is completely off of the ACTH which could take up to 6 months.

Treatment

We met today with Dr. Kabani and we will be starting Grace on a drug called ACTH which is a steroid. This drug has the most promise in treating infantile spasms and can essentially wipe out the seizure she is having. There are lots of side effects of the steroid including weight gain, irritability, and a weakened immune system. We won't be able to take Grace anywhere with her weakened immune system not grocery shopping, daycare, church, no where except to doctor appointments.

We have been told that ACTH is the same drug that pilots were given in WWII to make the more awake and agitated. And we are giving this to a baby?

Grace is already on another seizure medication that they started her on while in the hospital called Clonapin will will keep her on this for awhile as she needs some drug therapy to until the the ACTH builds up in her system.

Email Update 6/13

(This is an email sent out after returning home and being in a hospital for the last 5 days.)

We are home! We got home last night around 11:45pm. It was great to sleep in our own bed. Grace seemed to like her crib too. Hoover is very happy that we are home, I don't think his tail has stopped wagging.

Email Update 6/12

(This is an email sent out while at Children's Hosptial.)

We have good news! Grace DOES NOT have the very rare and life threatening form of Epilepsy called Aicardi Syndrome. We just got back from the Eye Doctor and are waiting for Dr. Ritter the Pediatric Epilepsy specialist we came here to see, he is busy until 4pm so we are hoping that we will be able to see him as soon as he gets back. Hopefully he will have a diagnosis and treatment plan that we can begin.

It is sounding like we may be able to go home today. Grace has had two seizures today, she had one on the way back from the Eye Doctor, but it was much lighter than her normal ones. Not sure if this means the medicine she is on is working or what.

We will let you know more as we find things out.

Unplugged

Email Update 6/11

(This is an email sent out while at Children's Hosptial.)

We are in St. Paul right now at Children's Hospital. They have a pediatric epilepsy unit that we are in; the doctor we are working with is part of the Minnesota Epilepsy Group which is considered to be the best in the Nation if not the World.

What we know so far...Grace has Epilepsy and a rare form at that. The Neurologist in Des Moines we are working with believed that Grace could have an even more rare and life threatening branch, he has only seen 1 case and the doctor we are up here with has seen 20; the doctor that discovered it in the 60's is still practicing has only seen 140. The doctor in St. Paul believes Grace DOES NOT have this! We will know more tomorrow as we are waiting for a Pediatric Eye Doctor to come in, he will be checking for some formation/deformation. This formation/deformation will indicate that she has this rare and life threatening branch.

Grace is on some medication which seems to be helping but for the most part we are just here for observation. They will be determining what medication she will need to be on, we may be able to go home on Monday or may have to stay for more observation depending on her medication. Or we may be able to go back to Des Moines and stay at Blank while they regulate medications.

That's all we know right now. Joy and I are doing well, considering all of this. We have come to the realization that Joy has been training all of her life for this with her working with mentally/physically handicapped and her OT background. For me this is going to be another lesson in patience.

I think Joy and I are going to get away for a little while, I'm taking Joy to the Minneapolis Sculpture Garden (Big Spoon and Cherry, look it up on the web you will probably recognize it) and then we are going to get something to eat. We have to get out of the hospital every now and then just to feel normal.

We've got lot of pictures of Grace; I'll have to start up her blog again so we can show everyone what is going on.

Thank you for your prayers!

Mommy & Me

Cindy Lou Who

Room with a view (downtown St. Paul)

“St. Paul or Bust” or “Long Day Coming”

Thank God it’s Friday, time to kick back and relax or spend the weekend in a hospital. We left Des Moines around 2:30pm much later than anticipated; it took a long time to get all of the discharge paperwork put together. I went home to pack and let Hoover out. My Brother was going to take care of Hoover while we were gone. He is not Hoover’s biggest fan but I think Hoover grew on him over the next few days.

We headed up to St. Paul with a pit stop in Clear Lake so the whole family could eat. We arrived at Children’s United Hospital and were checked into the Pediatric Eplipsey Unit; we then answered another barrage of medical questions. Grace was hooked up to the Video EEG that she would remain on for the next three days.

We had no place to stay and were told that only one parent could stay in the room with Grace. We were not only shocked and appalled but we had no idea what to do next. We were both so tired and beaten down with all of the information we had digested in the past 48 hours that finding a hotel wasn’t even something we were able to think about. Our brains could not function outside of anything but caring for Grace, when tasked with something outside of this realm we just shutdown.

We spoke with Dr. Ritter around 10pm. Ritter had reviewed the MRI and believed that Grace did not have the rare and life threatening form of Epilepsy! He wanted to run the Video EEG for the weekend and have Grace see an Ophthalmologist to officially rule out this rare and life threatening form of Epilepsy. Ritter asked where we would be staying and told us about some apartments that the hospital rented out for families that were connected to the Hospital; we were able to get a room.

Brave

say your name
just your name
and i'm ready to jump
even ready to fall
the way it always was
is no longer good enough
you make me want to be
brave
~nichole nordeman

The Next Day (photos)

The Next Day

The morning came and we arrived at Blank at 11am, Grace was hooked up to the Video EEG. She was hooked up and for the first hour or so and we had to mark each time she has a spasm by clicking a button hooked to the EEG system. It almost felt like we were hurting her each time we had to push the button. It was like the trigger used on morphine drips for patients in extreme pain.

We were waiting for Dr. Kabani and went to get something to eat in the cafeteria. When we got back Kabani was there along with a couple residents; teaching hospitals are a great thing and it is awesome that Grace’s condition was able to be used by these Dr’s in training but it does get frustrating to answer the same questions over and over again. You start to wonder if they ever read charts! Perhaps this is part of the learning process.

The crowd of doctors and nurses were gathered around Grace’s bed watching her, there was no room for us. We sat and did the only thing we could do and ate our sandwiches which felt all so weird but it was already 2pm and we needed to eat if we were going to get through this day. They were able to determine that she was defiantly having seizures. They gave Grace a shot of Vitamin B6 this actually relieves seizures in 1% of people with seizures, it didn’t work for Grace.

Kabani managed to schedule Grace’s MRI later in the day and we would be having a spinal tap the next day. The purpose of these two tests was to determine what was causing the seizures.

They gave Grace anesthesia through her IV and after she was out wheeled her down to the MRI. We sat in the waiting room trying to grasp what was coming next.

We met with Dr. Kabani that night and about two hours of debriefing we knew that Grace had Epilepsy. The MRI had shown that Grace’s brain hadn’t formed correctly. Of concern were the corpus callosum and the thickness of the crevices in her frontal part of the brain. What we didn’t know was if what she was a rare and life threatening form of Epilepsy or just Epilepsy. We decided in those two hours to drive to St. Paul, MN the next day in order for Grace to see a Pediatric Epilepsy Specialist.

Baby's First EEG

Today marked the day of Grace's first EEG. About two weeks ago we noticed that she was having little spasms in which she would tighten her fists and crunch her arms and legs into her body…somewhat curling into the fettle position. We called Iowa Health's My Nurse and they thought it was just a startle reflex as we seemed to notice it primary after she would wake up.

After a week went by and we attempted to startle her on our own and we could not reproduce this “startle reflex” we when to our pediatrician's office, they felt that it was a case of acid reflux. This was difficult to understand as Grace has never been much of a spit-up baby. The thought was that she was spitting up but swallowing/gagging on the spit-up which was causing the spasm or gagging reflex. We started Grace on Prilosec and after a few days of seeing no result and performing our own research on the web on infantile spasms we went back to see Dr. Fornoff. Fornoff was concerned and arranged for us to have an EEG, the results came back abnormal. The results being abnormal and that we need to take Grace to Blank to be admitted for more observation were our only pieces of information. We sat at home the rest of the day worrying and fearing the worse. Late that night Dr. Kabani, Pediatric Neurologist called us to let us know what he was thinking and the immediate plans for Grace. We were to come to Blank at 11am the next day to be admitted; from there Grace would undergo a Video EEG, and MRI of her brain, and a spinal tap. Now it was time to go to sleep and await the next day, good luck.