Callie's PET scan went pretty well. It was a rough morning and it took 4 IV attempts before they were able to get her hooked up. Because of the trouble the anesthesiologist was brought in to place the IV. She a real peach bossing the nurses around, so it made the whole setting a little uncomfortable. Eventually we made our way to the room, and they took Callie away awake. I was a little nervous, but I'm assuming she did alright. They then sent me away to the waiting room, and told me they would come get me when she was done because they didn't have a room for her. I was really nervous about her waking up without me there. However, the tech came and got me immediately, so I was there pretty quickly as she was coming to. She then slept in my arms and we got to go home about 2 hours later. While I haven't heard from the Neurology department, we are seeing our Pediatrician on Friday, and she should have a copy of the final report then.
The day of the PET scan, I made a little pit stop by Patient Relations department. We have had an on going issue with Callie's Resident Neurologist. Without going into the long dramatic details, she is the reason it has taken over a year to get Callie diagnosed. Match that without a consistent attending, and you have a giant mess. While a solution had been in the works, the department once again dropped the ball. I complained to the office manager, and she basically ignored my call (which has happened before). After speaking with the Patient Relations rep, he assured me we would have a solution. Within a day, we had our solution. The head of Neurology that finally diagnosed Callie was going to be her primary neurology doctor! This is amazing news. We could not be happier. The only concern is that Neurology has yet to publish their 2012 schedule, and we do not have Callie's January appointment yet. This is concerning to me because they do tend to fill up very quickly. I assured the office manager that if I didn't have a phone call by Dec, I'd be calling her back. I don't think she wants that....
We had Callie's first therapy appointment yesterday. The therapist is working on Callie's fine motor skill, her ability to use her left hand more, her shoulder stiffness, her trunk (ribcage) stiffness, her overall upper body weakness, and her restricted neck movement. She is very nice, and Callie really likes her (and her fun toys). The therapist comes to our home weekly.
Finally, we started the melatonin on Sunday. So far, its doing nothing, which would lead us to believe that her night time crying while asleep is due to seizures. However, we need to give it a solid 3 weeks before we can truly rule anything out as far as parasominas.
So much has happened in 4 days - it seemed like I may never catch up!
Tuesday, November 15, 2011
Thursday, November 10, 2011
Tomorrow is the PET scan
I am honestly having some mixed feelings about it. Part of it is waiting for the results, normal vs abnormal - either will have me thinking "what are the next steps?".
I was also informed that Callie will leave the room without me while awake. I am not allowed to be present in the scanning room. This is very different from her previous procedures where I was allowed in the room and was at her bed side during the anesthetic. I want to be there for her, and I worry about her fears of being "abandoned". I know that sounds silly.
I'll make sure to update as soon as I hear what the findings of the scan are.
I was also informed that Callie will leave the room without me while awake. I am not allowed to be present in the scanning room. This is very different from her previous procedures where I was allowed in the room and was at her bed side during the anesthetic. I want to be there for her, and I worry about her fears of being "abandoned". I know that sounds silly.
I'll make sure to update as soon as I hear what the findings of the scan are.
Monday, November 7, 2011
Early Intervention - Occupational Therapy
Well, my right hand dominated, barrel chested, stiff armed, raised shoulder child qualified for Early Intervention Occupational Therapy. There are many red flags in her trunk strength, and overall upper body development, so Callie will receive weekly in home therapy. Since Callie's seizures cause involuntary upper body movement, it is important they keep a close eye on her shoulders and arms.
A small update, but important, none the less.
A small update, but important, none the less.
Sunday, November 6, 2011
Sleep Study Consultation
Callie has recently started crying out in her sleep. Its not your typical, "Hey, I'm awake" cry, its more of a distressed cry. When I check on her, she is sound asleep. When I mentioned this to neurology, they told me that it is possible that Callie could be having seizures in her sleep. What I am describing is very typical of these situations. I had no clue.
This prompted neurology to suggest an appointment with a sleep clinic specialist.
We saw her last Thursday. She agreed it could be seizures, but also decided that we could try a bit of melatonin to see if this is more of a parasomina awakening. We have the all clear to start a half dose as soon as the PET scan is done is upcoming Friday.
Unfortunately, the sleep clinic sees many patients, and so our soonest sleep study appointment is going to be on Feburary 8th. That seems SO far away.
Until then, we really aren't able to do much, and hope that the PET scan will show more detail as to whats going on inside Callie's brain.
This prompted neurology to suggest an appointment with a sleep clinic specialist.
We saw her last Thursday. She agreed it could be seizures, but also decided that we could try a bit of melatonin to see if this is more of a parasomina awakening. We have the all clear to start a half dose as soon as the PET scan is done is upcoming Friday.
Unfortunately, the sleep clinic sees many patients, and so our soonest sleep study appointment is going to be on Feburary 8th. That seems SO far away.
Until then, we really aren't able to do much, and hope that the PET scan will show more detail as to whats going on inside Callie's brain.
Tuesday, November 1, 2011
November is.. Epilepsy Awareness Month!
I thought this would be an excellent opportunity to take you all back to the beginning - especially since many of you don't know how this all started.
My pregnancy with Callie was only slightly less complicated than Tori's - but not by much. Two mystery viruses that landed me in the hospital at weeks 16 and 22, led my OB to have me see an infectious disease specialist. There, they determined I had some how contracted Lyme Disease. To this date, that is one of the most random diagnoses ever. I had no evidence of a tick bite and never once tested positive for the illness. Still, I found myself with a PICC line and was subjected to 3 weeks of hospital outpatient antibotic treatment. After that I was sent on my merry way, assured that nothing would be wrong with Callie.
The rest of my pregnancy was fairly easy, but I did have a c-section due to failure to progress while in labor. We stayed in the hospital the standard 5 days, and when we came home, we instantly knew something was up with Callie. She screamed non stop, 24/7. She did not sleep, she barely ate. It didn't matter how tight she was swaddled, how closely we held her, vibrations, swings, the car.... We went to the pediatrician, we switched bottles several times, tried different formulas, added a reflux medication. No change. We went to the urgent care one night "She's just colicky".
Several weeks went by and finally around week 5, I called my pediatrician's office in hysterics. I had hit my breaking point. They rushed me in, it was 4:45pm. We got Callie put on Neocate (the world's most expensive formula - just in case it was a milk/soy intolerance) but we also received an ultrasound of her softspot. Our pediatrician was on vacation, but I received a phone call at 7PM of the following day. The ultrasound showed leisons on Callie's brain. We were told it was the result of a TORCH infection - she became ill while in the womb. Most likely with one of the "mystery" viruses I had while pregnant. We got an immediate appointment with Neurology. Many labs were done, and she was put through both a CT and MRI scan, both came back clear. The leisons healed. Great news! Except now Callie had dangerously high liver enzymes, and other metabolic acids were abnormal too. She was sent to see a GI Liver specialist. At this point, we were into late November. No real answers came from her appointment and labs, so we were sent to genetics.
Now, I'd be lying if I didn't say that Jan - May of 2011 weren't a giant blur. Lets just say that Callie was seen by genetics, neurology, and GI specialist several times - all with no answers. Her crying spells dwindled with time, but she was still a very fussy baby. Down right miserable at times.
It was around April, Callie was about 6 months, when I mentioned to her peditrician that I noticed weird movements in her arms every now and again. I had actually mentioned these movements to Callie's neurologist (who's a quack - a whole other post) months prior but she pretty much dismissed what I was saying from the get go. I told her I thought that Callie was having seizures, but she assured me she was just fine.
If you've followed me this far, go take a potty break - it gets more complicated.
Late May, we are our of town on a Saturday, and at a restaurant with my extended family. Callie proceeds to have two separate "episodes" of these weird arm movement clusters. It just so happened that my aunt and uncle who are doctors witnessed these episodes. My uncle told my mother that they were seizures, and she later broke the news to me. I immediately called the on-call physician, since it was a weekend, and he told me to call neurology that Monday. You better believe I was blowing up the phone of the neurologists office at 8am that day.
Callie was admitted for long term monitoring in the epilepsy unit of our local Children's Hospital. She was placed in a video surveillance room with a 24 hour EEG device. We waited and waited, but after 4 long days, nothing happened, and they sent us home. Frustrated, we waited, and watched several more episodes. I called the neurologist, she did nothing. We got a second opinion, he did nothing. We couldn't prove they were happening, and it almost seemed like no one believed us - including the ER (we visited it twice). Finally, we caught it on VIDEO! Hooray!!! We were on our way to a diagnosis - or so we thought. Nope. It was late July and we got the run around. More long term monitoring, clear EEGs, no diagnosis. Lather, rinse, repeat - three more times! Nothing. We saw every neurologist in the clinic. We were told they weren't seizures, maybe it was reflux? Or she liked doing it? Or maybe she just had a tick... we were also basically told not to come back again. I wasn't satisified. Something was wrong with Callie - I just knew it.
It just so happened that we had a pre scheduled MRI from months prior in late September, and a follow up with neurology in late October. We went through the MRI and in mid October we were told the MRI was clear by our pediatrician who got the final report from the radiologist. I wasn't expecting much from our visit to neurology in late October. I expected for them to say "everything is fine - see you in 6 months". Except.... they didn't.
Our neurologist brought in the senior head of neurology. We talked about everything in Callie's history, he saw "the video", and he also broke the news to me: Callie's MRI was abnormal. There was curvature and spacing in the region of the brain called the hippocampus, that they typically see in kids with epilepsy. The original radiologist missed it... but he personally reviewed the films. He told me what I had believed all along.... Callie was indeed having seizures, and was an epileptic.
Questions filled my head, I needed immediate answers - he couldn't give them to me. Was Callie having seizures at birth? He didn't know... but it would definitely explain a lot. What are the next steps? He's not 100% sure. More tests need to be performed.
So here's where we stand.... Callie has the following procedures standing: a PET scan, a sleep study, a OT evaluation, and a repeat MRI.
They really want to understand where the seizures are located before they medicate her. Different seizures require different medications. All have side effects, some are really severe.
So I guess that's the story.... it was quite long - and I apologize if it didn't make sense 100% of the time - I wrote it all in one sitting. If any of you reading this have questions about something that happened and that wasn't very clear - please let me know.
My pregnancy with Callie was only slightly less complicated than Tori's - but not by much. Two mystery viruses that landed me in the hospital at weeks 16 and 22, led my OB to have me see an infectious disease specialist. There, they determined I had some how contracted Lyme Disease. To this date, that is one of the most random diagnoses ever. I had no evidence of a tick bite and never once tested positive for the illness. Still, I found myself with a PICC line and was subjected to 3 weeks of hospital outpatient antibotic treatment. After that I was sent on my merry way, assured that nothing would be wrong with Callie.
The rest of my pregnancy was fairly easy, but I did have a c-section due to failure to progress while in labor. We stayed in the hospital the standard 5 days, and when we came home, we instantly knew something was up with Callie. She screamed non stop, 24/7. She did not sleep, she barely ate. It didn't matter how tight she was swaddled, how closely we held her, vibrations, swings, the car.... We went to the pediatrician, we switched bottles several times, tried different formulas, added a reflux medication. No change. We went to the urgent care one night "She's just colicky".
Several weeks went by and finally around week 5, I called my pediatrician's office in hysterics. I had hit my breaking point. They rushed me in, it was 4:45pm. We got Callie put on Neocate (the world's most expensive formula - just in case it was a milk/soy intolerance) but we also received an ultrasound of her softspot. Our pediatrician was on vacation, but I received a phone call at 7PM of the following day. The ultrasound showed leisons on Callie's brain. We were told it was the result of a TORCH infection - she became ill while in the womb. Most likely with one of the "mystery" viruses I had while pregnant. We got an immediate appointment with Neurology. Many labs were done, and she was put through both a CT and MRI scan, both came back clear. The leisons healed. Great news! Except now Callie had dangerously high liver enzymes, and other metabolic acids were abnormal too. She was sent to see a GI Liver specialist. At this point, we were into late November. No real answers came from her appointment and labs, so we were sent to genetics.
Now, I'd be lying if I didn't say that Jan - May of 2011 weren't a giant blur. Lets just say that Callie was seen by genetics, neurology, and GI specialist several times - all with no answers. Her crying spells dwindled with time, but she was still a very fussy baby. Down right miserable at times.
It was around April, Callie was about 6 months, when I mentioned to her peditrician that I noticed weird movements in her arms every now and again. I had actually mentioned these movements to Callie's neurologist (who's a quack - a whole other post) months prior but she pretty much dismissed what I was saying from the get go. I told her I thought that Callie was having seizures, but she assured me she was just fine.
If you've followed me this far, go take a potty break - it gets more complicated.
Late May, we are our of town on a Saturday, and at a restaurant with my extended family. Callie proceeds to have two separate "episodes" of these weird arm movement clusters. It just so happened that my aunt and uncle who are doctors witnessed these episodes. My uncle told my mother that they were seizures, and she later broke the news to me. I immediately called the on-call physician, since it was a weekend, and he told me to call neurology that Monday. You better believe I was blowing up the phone of the neurologists office at 8am that day.
Callie was admitted for long term monitoring in the epilepsy unit of our local Children's Hospital. She was placed in a video surveillance room with a 24 hour EEG device. We waited and waited, but after 4 long days, nothing happened, and they sent us home. Frustrated, we waited, and watched several more episodes. I called the neurologist, she did nothing. We got a second opinion, he did nothing. We couldn't prove they were happening, and it almost seemed like no one believed us - including the ER (we visited it twice). Finally, we caught it on VIDEO! Hooray!!! We were on our way to a diagnosis - or so we thought. Nope. It was late July and we got the run around. More long term monitoring, clear EEGs, no diagnosis. Lather, rinse, repeat - three more times! Nothing. We saw every neurologist in the clinic. We were told they weren't seizures, maybe it was reflux? Or she liked doing it? Or maybe she just had a tick... we were also basically told not to come back again. I wasn't satisified. Something was wrong with Callie - I just knew it.
It just so happened that we had a pre scheduled MRI from months prior in late September, and a follow up with neurology in late October. We went through the MRI and in mid October we were told the MRI was clear by our pediatrician who got the final report from the radiologist. I wasn't expecting much from our visit to neurology in late October. I expected for them to say "everything is fine - see you in 6 months". Except.... they didn't.
Our neurologist brought in the senior head of neurology. We talked about everything in Callie's history, he saw "the video", and he also broke the news to me: Callie's MRI was abnormal. There was curvature and spacing in the region of the brain called the hippocampus, that they typically see in kids with epilepsy. The original radiologist missed it... but he personally reviewed the films. He told me what I had believed all along.... Callie was indeed having seizures, and was an epileptic.
Questions filled my head, I needed immediate answers - he couldn't give them to me. Was Callie having seizures at birth? He didn't know... but it would definitely explain a lot. What are the next steps? He's not 100% sure. More tests need to be performed.
So here's where we stand.... Callie has the following procedures standing: a PET scan, a sleep study, a OT evaluation, and a repeat MRI.
They really want to understand where the seizures are located before they medicate her. Different seizures require different medications. All have side effects, some are really severe.
So I guess that's the story.... it was quite long - and I apologize if it didn't make sense 100% of the time - I wrote it all in one sitting. If any of you reading this have questions about something that happened and that wasn't very clear - please let me know.
Sunday, October 30, 2011
Welcome!
My daughter Calista aka Callie was born on 9/14/2010 at 9:26pm. From that day moving forward, my life was never the same.
Details will follow with time, but in the last week I learned that Callie was an epileptic. My heart was crushed, and my biggest fears became a reality. So many questions filled my head, but I refused to be defeated, hopeless, and filled with worry. I will stop at nothing to help Callie, as well as find answers and solutions to help her life a normal, comfortable, and healthy life.
Stay tuned, its going to be a bumpy ride....
Details will follow with time, but in the last week I learned that Callie was an epileptic. My heart was crushed, and my biggest fears became a reality. So many questions filled my head, but I refused to be defeated, hopeless, and filled with worry. I will stop at nothing to help Callie, as well as find answers and solutions to help her life a normal, comfortable, and healthy life.
Stay tuned, its going to be a bumpy ride....
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