They told us she has band heterotopia.

I am starting this blog to let family and friends know what has been happening in our family with regards to Grace. It has already been 4 weeks since this all began, so I will start from the beginning.


Saturday, April 29th, 4:00 AM: Grace woke us up crying, complaining of a headache. She has been on ADHD medication, Metadate CD for 4 weeks now and we wondered if the headache was a side effect. Grace kept crying despite a dose of Motrin and Tylenol, so I had her take a bath. (She loves baths.) She was so pale but did not have a fever and denied having an upset stomach. After a few minutes in the tub, she stood up and basically passed out in my arms. I carried her to my bed, checked her vitals, and called April. I was really worried- ask Josh and April.

After brainstorming what the problem could be, I later took Grace to the clinic to rule out any secondary problems. The doctor reported that he couldn't find anything wrong with her- no pressure on the brain, no sinus infection. We assumed she passed out because of low blood pressure from getting out of the bathtub and the headaches from her ADHD medication. (She had been complaining of headaches the previous couple of weeks.) We stopped her medication and waited.


Monday, May 1st, 10:00 PM: Grace had a very rough weekend. She was very difficult to control. Her teacher reported that she was withdrawn at school and not herself. I spoke with the pediatrician who thought she might have a virus and didn't believe the Metadate was still in her system when she woke up with a headache. I was nervous when I put her to bed because she didn't seem well. I had Dave and his dad give her a blessing at 9:30 PM.

At 10:00, Caroline came to me and said Grace was shaking and breathing funny. When I went to her room, her breathing was really different and her arms were kind of pulsing at her side. At the time, I wasn't even thinking "seizure". Her breathing made me think that maybe she had a sleeping disorder like sleep apnea. While I watched her breath, she had several periods of apnea. Later that night, I spent a couple of hours brainstorming with my dad as to what might be causing this behavior change.


Tuesday, May 2nd, 6:30 AM: Grace's seizing body woke me up this morning. I didn't know she had gotten in my bed during the night. The seizure was long, 2-3 minutes. Her eyes were closed but her extremities were shaking and she wasn't breathing well. It was definitely tonic-clonic and lasted long enough that I assumed it was a grand mal seizure. It was fairly dramatic, but I think we were able to stay calm, considering. After the seizure, she was cool and clammy and stayed asleep. This post-tictal state lasted about 30 minutes. Then Grace woke up and complained of a huge headache in her forehead. She was so pale. Now it all started to make sense- for some reason Grace had started having seizures.

I called April and my dad to update them, packed and headed to Salt Lake for Primary Children's. I took a water sample, to be anayzed, along the way. We felt we needed to explore every avenue in hopes of finding out the cause of her seizures.

Grace and I arrived at the hospital around 3:30 PM, Tuesday. We waited in the Emergency Department for a couple of hours. They wouldn't let her eat or drink which was a nightmare. After an EKG and CT scan, I was informed that her CT scan was abnormal. They said it wasn't a tumor but more of a birth anomally. She was scheduled for an MRI on Wednesday and a Neuro consult. Luckily, they were admitting us to the Rapid Treatment Unit overnight for observation. I guess normally we would have been sent home if we lived in Salt Lake and followed up with a neurologist several days later. After a late dinner and bath, Grace is asleep, only to wake up in the middle of the night wanting to watch T.V. After trying to reason with her from 2:00 AM to almost 5:00 AM, I finally went to asleep, VERY FRUSTRATED to say the least.


Wednesday, May 3, 6:00 AM: I woke up to the pulse oximeter alarming. Grace was in the middle of having a seizure. The nursing staff came running in at the same time. Seconds after that, the ER team came running in and sort of ran a mini code. They started an IV, drew some labs, and ordered some meds. Grace was given a large dose of Dilantin to prevent further seizures. When she woke up a little later from the seizure, she was like an drunken sailor. She couldn't really walk and slurred her words. We went to MRI and they didn't have to sedate Grace. She was so cooperative which was amazing because the noise of the machine stressed me out. I'm sure the Dilantin in her bloodstream helped.

After the MRI, Grace was allowed to eat again. She was obsessed with Chicken Noodle Soup the entire day. I think she had 4 or 5 bowls plus Cup of Noodles twice by the next morning. Later Wednesday morning, we were admitted to the Neuro Unit and changed rooms. Grace's second obsession during our hospital stay was wheelchairs. She always wanted to be in a wheelchair. Grace hated her IV heplock however and the pulse oximeter probe on her finger. She must of asked 1,000 times when they could be removed. Lastly, she was obsessed with having her nails and toes painted. She had been wanting to do this since Monday night and I had promised her that on Tuesday morning I would paint them before school. Well, now that it was Wednesday, she was needing some serious polish. More on that later. :-)

Later Wednesday, the Neurologist consulted with us and explained that her MRI explained everything. She was given the diagnosis, Band Heterotopia. Apparently, she has had this problem since birth. This "disorder" causes seizures and learning delays. The doctor could not explain why the seizures had just started. He said sometimes the kids are older and sometimes they're younger, but she would have eventually started having seizures.

BAND HETEROTOPIA: At this point, this is my understanding of her diagnosis. In utero, the baby's brain develops and the gray matter travels to a specific spot in the brain. In Grace's case, some of the gray matter didn't migrate properly. In her brain, there is a crossover of some of the gray and white matter which creates the look of a band around her brain (in her brain.) This mixture of gray and white (neurons) causes seizures and learning delays. It is usually genetic, from the X chromosome of the Mother (me). So I could have it and not have any symptoms.

The heterotopia has been there since birth and if by chance she had an MRI when she was born, they could have seen the band. Supposedly, this stays unchanged in the brain. It is not curable. It is treatable. It will not get worse. The ideal treatment is a medication to prevent seizures and psychological follow-through to help with the learning problems. If she is seizure free for 3 months she can have a driver's license. (I'm thinking ahead.) She is also supposed to have genetic follow-up/counseling to see if they can isolate the mutated gene. (Her blood is currently being tested in Chicago.)

Wednesday afternoon was spent having an EEG where they placed little wires all over her head and had her do exercises and try to sleep. The computer screen showed tracings like an EKG. We also were successful with our quest for nail polish thanks to very prepared therapists that let her choose AND keep 2 colors. That evening was spent with visitors and a wild Grace. She continued with her obsessions- Chicken Noodle Soup, wheelchairs, her IV site, and pulse oximeter probe. No more doctors until Thursday. I bathed her and put her to bed.


Thursday, May 4, 7:30 AM: Grace seems more normal today when she woke up, but that didn't last very long. Once all of the doctors started to visit, she got pretty silly again. I now understand that her behavior was probably a combination of of the dilantin plus anxiety with everything going on. We saw a lot of people- several neurologists including residents and med students, a geneticist, a psychiatrist, physical therapy, occupational therapy, a social worker, and the education specialist. I got lots of helpful but sometimes overwhelming information. It seems like the most difficult part of the road ahead will be the psychological because of her learning disorder and ADHD which then causes anxiety and the difficult behavior. We shall see.

We were discharged by 4:30 with a prescription for Dilantin twice a day. The plan was to switch to a new med at the end of the month and follow-up with the neurologist mid-June. I definitely was at my wits end by discharge. Grace spent the day overwhelming me with her actions including trying to wheel herself up and down the hallway in the wheelchair running into walls, getting stuck in doorways, etc. It sounds funny now, but it was SO draining at the time.

We drove straight home in hopes of making it to the school Spring Festival. We were late and Grace missed her part, but she was a good sport and everyone was happy to see her.

Monday, May 8, 3:45 PM: Grace went to school today. We survived the weekend, mostly because she spent most of the time with her grandparents. It was a really busy weekend at the Lodge. She has school testing this week. I'm not sure how well she'll do, but there's not much else we can do. We haven't been able to do very much school work with her because she has a difficult time thinking. It's like she can't remember how to do it anymore. The medicine has changed her personality; she's not as happy and somewhat withdrawn. I hope this changes when we switch meds. It's like someone took the old Grace in the night and replaced her with a different girl. It makes me sad thinking about it.


Wednesday, May 10, 8:00 AM: My mom flew in yesterday and drove down with Dave. She wants to help watch Grace so I can get caught up on EVERTHING. I hope it works! ;-)


Thursday, May 11, 5:00 PM: I picked Grace up at school today and took her to Richfield for a blood draw. The doctors want her Dilantin level checked. On the way, Grace showed me a rash she had on her thighs. It definitely looked like hives but I could only see them on her thighs and wrists. She was wearing a new outfit, so I assumed she was irritated to the fabric. I gave her some Benadryl and headed for the hospital.

It took 3 people to hold Grace down for the blood draw. She let them draw her blood without flinching at Primary Children's until the last day when the nurse told her so far in advance that she was traumatized by the time lab showed up. She actually was reasonable today, considering how scared she was. Luckily, there's a McDonalds in Richfield, so we spent the next hour in the playland.

At bedtime, Grace still had her rash. It was a little lighter than it was earlier, but still making her itch. Hopefully the second dose of Benadryl will do the trick.


Friday, May 12, 7:00 AM: Grace's rash is worse today. It is everywhere and her lips look a little more like Angelina Jolie. She says her throat doesn't bother her, but I'm thinking she's having a drug allergy. I spent most of the morning trying to get in touch with her doctors. I found out that her Dilantin level was 33 and therapeutic in kids should be under 20. I held her Dilantin and took her to the clinic. Dr. Chappell confirmed that she was likely having a drug allergy, not just a side effect from the Dilantin. We waited most of the day for more information from the neurologist as to what he wanted us to do. The on-call doctor wanted us to stop the Dilantin for good and start the new medication when her rash was gone.


Monday, May 15, 5:00 PM: I finally was able to get in touch with Grace's neurologist today. I didn't start her new medication, Trileptal because I wanted to make sure he was on the "same page" as the on-call neurologist as to what was going on. He said that he was concerned that Grace would have a 30% chance of being allergic to Trileptal since she had developed a rash with Dilantin. He wanted us to wait 2 weeks before starting the new med which would decrease her chances of becoming allergic. He explained that she might have seizures but hoped she wouldn't.


Monday, May 15, 10:00 PM: The kids went to bed later than usual tonight. I was in the kitchen and thought I heard someone crying. When I went in Grace's room, she was having a seizure. The seizure lasted several minutes followed by a post tictal phase of crying, moaning, and rolling around the bed. It was stressful watching it happen and not really being able to do anything about it. Dave had his dad come up. We had a family prayer, and then they gave her another blessing. I called the on-call neurologist to discuss the seizure. We didn't have any emergency medicine with us to stop the seizure if she had one that lasted 5 minutes or longer. The local ambulance didn't have the right kind either and if they were called, they would have to start an IV. We prayed she wouldn't have another seizure tonight, and she didn't. She spent the rest of the night in our bed.


Tuesday, May 16, 7:30 AM: Grace woke up happy this morning with no memory of what took place last night. She didn't complain of any headaches, so I sent her to school. I spent most of the day talking with the on-call doctor because our regular doctor wasn't in town. Lucky for us, Denise was in St. George and was able to locate the emergency drug for Grace. Otherwise, we would have had to drive to Salt Lake. The emergency drug is a gel form of Valium that is given rectally if the seizure lasts 5 minutes or longer. Then we were to call 911. I felt more prepared when I went to bed that night.


Wednesday, May 17, 1:30 AM: My mom called down to us because Grace was having a seizure. My mom had been sleeping in the same room as Grace. I timed the seizure and it ended just seconds before 5 minutes, so we didn't have to give her the Diastat. Thank goodness! But, this was again another tough seizure on Grace. This time, it caused her to wet the bed. She then cried and wailed off and on for the next 1 1/2 hours. I could not console her which was upsetting to everyone. It was definitely one of the most stressful nights since this all began.


Wednesday, May 17, Noon: Grace was so tired this morning and then went down for a nap. When I got out of the shower, I heard a noise and found Grace in the middle of another long seizure, about 4 minutes. It caused her to wet the bed again but didn't cause as much agitation and she didn't cry as long. By late afternoon, I was finally able to speak with her neurologist. He explained that he wanted her to start the Trileptal this evening. Unfortunately, the medicine won't be stable in her body for another 2 weeks, so she might still have seizures. We will watch and wait.


Sunday, May 21, 5:40 AM: I woke to Grace having a seizure. It lasted a couple of minutes which was shorter than Wednesday's, but she wet the bed again. She didn't cry afterward which was better than earlier in the week. After cleaning up the bed, I went back to sleep. Grace was never "awake" during any of it. It had been 4 days since her last seizures.


Sunday, May 21, 8:15 AM: I woke up again to Caroline yelling for me. Grace had a seizure just as she was starting to eat breakfast. Caroline was holding her head up and basically keeping her from falling out of the chair. This was the first time Grace had a seizure while she was awake. I carried her to the couch where she slept it off. The seizures have been a little shorter, and we haven't had to use the emergency medicine. I knew the seizures were a possibility, so I didn't call the doctor.

Sunday, May 21, 1:30 PM: Grace had a seizure minutes after she laid down for a nap. It lasted 3-4 minutes, but she didn't wet the bed.

Monday, May 22, 6:00 AM: Grace had a total of 14 seizures last night. They came every 15-20 minutes until the middle of the night. Her first one started at 7:10 PM. It was a long night. She looks so distorted during her seizure that it breaks our hearts. I think lucky for her, she has no memory of any of it.

Friday, May 26, 5:00 PM: Grace has had seizures off and on during the week. She missed most of her classes this week. She made it to the school hike and the last day of school. I called her doctor again today. I tried earlier this week but he was out of town. Wednesday night she had another round of multiple seizures during the night like Sunday night. He said that we should increase her dose to 300 mg twice a day starting tonight, even though she has only been on the medication 9 days (not the ideal 14 days.) He said it would still take 1-2 weeks for the seizures to subside.

Friday, June 2, 7:00 AM: I just put my mom and my 3 kids on a plane to San Diego. Since Grace is more stable with her new dose, my mom wanted to take them, so I can get caught up on some things before I drive down. My sis, Chrissy will watch Tommy since he is the same age as her son Alex. Caroline will stay at her cousin Guy's house since they are the same age. Grace will stay at my parents. Hopefully it will all work out! :-)