Last Tuesday we met with the Psychologist who completed Sophie's Neuro-Psych evaluation. The doctor gave us a lot of information and guidance for moving forward. It was a lot of information to process in one sitting and we don't yet have the formal report but I can give some of the general findings. On the positive side, her intelligence (IQ) tested normal for her age group and most of her academic skills were the same, there was no obvious learning disability (including dyslexia), and they do not believe an IEP is necessary. They did identify memory struggles but based more on inattention than any cognitive impairment. They also identified some reading concerns. The worry is that although in first grade we "learn to read" in later grades we "read to learn" and the Psychologist stated that she may fall further behind academically in the years to come, if her reading is not really focused on and supported now.
One of the Psychologist's main concerns was the Temporal Lobe seizure activity seen in the most recent EEG. She let us know that this is the area of the brain where memories are stored, filed appropriately, and processed. She believes that this is the cause of her regression in school since there is no learning disability present. It seems as if these seizures, which appear to happen while she is sleeping, may be causing her to lose information and knowledge she had previously memorized. The official report won't be sent out to the doctors until next week, but I did call the Epileptologist to update her today. The nurse called back later in the day (I continue to be floored by their response and attention to our concerns) and based on what I shared, they have ordered the over-night video EEG at Lurie Children's in Chicago. Hopefully we'll get that scheduled tomorrow.
We meet with the Epileptologist on the 17th and I will post again after that.
Tuesday, December 3, 2013
Sunday, November 10, 2013
Neuro-Psychological Evaluation
Last week we delved into the most recent portion of discerning who Sophie is in her fullness. It is my goal to know as much as I can about what she is facing each day, what her challenges are, what her strengths are, and how we can best respond. I'm hoping to learn how Joe and I as parents can adapt to help her succeed, be confident, and feel supported. I'm hoping that her school will also be able to identify solid adaptations they can use to help her learn, retain information, and feel confident as well.
In order to make all this happen, we're in the midst of a multi-stage Neuro-Psych evaluation. This process began on Wednesday when the Psychologist who is working with us visited Sophie's classroom and observed her for a couple of hours at school. Sophie's incredible teacher planned the day so that while the doctor was there, she was able to observe Sophie in large group time, small group work, and independent work at her desk.
Then on Thursday Joe, Sophie, and I spent a full day at the clinic. Joe and I had the easier schedule for the day and only spent two hours with the Psychologist; Sophie spent six hours, some with the Dr and some with the tech. For our part, we shared details of Sophie's development from her time in-utero to her current life. This included her health history, milestones, habits, socialization, personality traits, family history, Sophie's strengths, our concerns, and our hopes. For the first three hours Sophie completed various evaluations with the technician, and then in the afternoon she spent a couple of hours with the Psychologist, followed by more academic evaluations.
Tomorrow is the final day of assessments for which she will be there another three hours. She's with the intern tomorrow and I think it's focused more on her gross and fine motor skills than academics or intelligence. Joe gets to go with her since he has the day off anyway, but there is no involvement for the parents tomorrow.
From the questions the doctor asked us, and her explanations of the process it seems to be quite a broad assessment. As to what they're evaluating for, what I heard her mention were: IQ, learning disabilities in general, dyslexia, autism, ADD, ADHD, anxiety, OCD, and mood disorders...I think that's it, but it this list seems short for how long it felt. Regardless, I think they're looking at a wide array of what she might be dealing with, and are trying to focus in on impairments that typically are seen in children with Epilepsy in general, Absence Seizures specifically, and then also in children taking Depakote.
As a parent, this has been an uncomfortable process. I'm extremely hopeful for being able to better understand and support Soph, but I'm also terrified of whatever diagnosis we might get. I keep reminding myself that no matter what label might be added on, she's still the same person. Getting this information won't change her, it will only help us meet her needs and understand her more fully, and hopefully help her catch back up in school.
We won't be getting the results until the week of Thanksgiving, and I probably won't have time that week to update the blog, but I will do my best. Thanks for caring, for reading, and for praying for us. It makes a difference.
In order to make all this happen, we're in the midst of a multi-stage Neuro-Psych evaluation. This process began on Wednesday when the Psychologist who is working with us visited Sophie's classroom and observed her for a couple of hours at school. Sophie's incredible teacher planned the day so that while the doctor was there, she was able to observe Sophie in large group time, small group work, and independent work at her desk.
Then on Thursday Joe, Sophie, and I spent a full day at the clinic. Joe and I had the easier schedule for the day and only spent two hours with the Psychologist; Sophie spent six hours, some with the Dr and some with the tech. For our part, we shared details of Sophie's development from her time in-utero to her current life. This included her health history, milestones, habits, socialization, personality traits, family history, Sophie's strengths, our concerns, and our hopes. For the first three hours Sophie completed various evaluations with the technician, and then in the afternoon she spent a couple of hours with the Psychologist, followed by more academic evaluations.
Tomorrow is the final day of assessments for which she will be there another three hours. She's with the intern tomorrow and I think it's focused more on her gross and fine motor skills than academics or intelligence. Joe gets to go with her since he has the day off anyway, but there is no involvement for the parents tomorrow.
From the questions the doctor asked us, and her explanations of the process it seems to be quite a broad assessment. As to what they're evaluating for, what I heard her mention were: IQ, learning disabilities in general, dyslexia, autism, ADD, ADHD, anxiety, OCD, and mood disorders...I think that's it, but it this list seems short for how long it felt. Regardless, I think they're looking at a wide array of what she might be dealing with, and are trying to focus in on impairments that typically are seen in children with Epilepsy in general, Absence Seizures specifically, and then also in children taking Depakote.
As a parent, this has been an uncomfortable process. I'm extremely hopeful for being able to better understand and support Soph, but I'm also terrified of whatever diagnosis we might get. I keep reminding myself that no matter what label might be added on, she's still the same person. Getting this information won't change her, it will only help us meet her needs and understand her more fully, and hopefully help her catch back up in school.
We won't be getting the results until the week of Thanksgiving, and I probably won't have time that week to update the blog, but I will do my best. Thanks for caring, for reading, and for praying for us. It makes a difference.
Wednesday, October 23, 2013
Epileptologist
Dr. O'Connor is the name of our new Epileptologist and she taught us more in our first meeting than our previous doctor taught us in an entire year!
1) The EEG demonstrated that Sophie's seizures have transitioned from Absence to Focal (stemming from one or two spots on the brain rather than all over and a different level of electrical spike from my understanding). These are only happening when she sleeps, but it is unclear if she might be having them steadily throughout the night or just randomly here or there.
2) Having Absence Seizures puts her at a much higher risk for having a Tonic Clonic (Grand Mal or Big, Scary Seizure). We should have an emergency medicine on hand for if this should happen, which has now been prescribed. Probably something we should have known. We were warned again not to let her swim alone or bathe alone just in case.
3) The Neuro Psych evaluation is way overdue. She was surprised that there is not already an IEP in place, and does not believe that a 504 plan will provide sufficient adaptation. She is hopeful that then Neuro Psych assessment will come with IEP suggestions that can be sent directly to the school. I have to admit I was overwhelmed when she asked if Sophie was "still in a standard classroom".
4) Sophie was overdue for having her Depakote levels checked and should also be having blood counts done. This led to a trip to the lab last Saturday for four vials of blood to be drawn (the phlebotomist actually verified that she could take all the blood required based on Sophie's weight). Sophie cried some, but it was worth it for the McD's hash-browns she earned as a reward!
5) We cannot even begin to consider weaning her off the Depakote until she is seizure free for two years. This news did burst our bubble because we've been having her see a Chiropractor with hope that it would help with the Epilepsy and that perhaps at some point we could lower her medication dose. However, no regrets on the Chiro because her immune system has been SO much better this year than last. She has yet to be sent home from school and her asthma is much better controlled--both of these have been huge steps forward.
Since the appointment, the results of the blood work have come back. Her Depakote levels were therapeutic which was good to hear, but her platelets are low. Apparently this is a common side effect of Depakote (which perhaps had not been monitored by Sophie's previous neurologist), so although she's still having seizure activity while sleeping, we are lowering her Depakote dose in the evening. She is now getting 250 in the morning and 250 in the evening, 125 mg less than before. We have two weeks on this new dose to monitor her for seizure activity and then redo the labs to look for improvement.
In the mean time her Neuro Psych eval is scheduled for early November and the school observations should be taking place in the next week. I'll challenge myself to update as things develop. Our next major step will be an overnight EEG at Lurie's in Chicago but that might not be until December or January as we work at taking things one step at a time. Thanks for your support and care.
1) The EEG demonstrated that Sophie's seizures have transitioned from Absence to Focal (stemming from one or two spots on the brain rather than all over and a different level of electrical spike from my understanding). These are only happening when she sleeps, but it is unclear if she might be having them steadily throughout the night or just randomly here or there.
2) Having Absence Seizures puts her at a much higher risk for having a Tonic Clonic (Grand Mal or Big, Scary Seizure). We should have an emergency medicine on hand for if this should happen, which has now been prescribed. Probably something we should have known. We were warned again not to let her swim alone or bathe alone just in case.
3) The Neuro Psych evaluation is way overdue. She was surprised that there is not already an IEP in place, and does not believe that a 504 plan will provide sufficient adaptation. She is hopeful that then Neuro Psych assessment will come with IEP suggestions that can be sent directly to the school. I have to admit I was overwhelmed when she asked if Sophie was "still in a standard classroom".
4) Sophie was overdue for having her Depakote levels checked and should also be having blood counts done. This led to a trip to the lab last Saturday for four vials of blood to be drawn (the phlebotomist actually verified that she could take all the blood required based on Sophie's weight). Sophie cried some, but it was worth it for the McD's hash-browns she earned as a reward!
5) We cannot even begin to consider weaning her off the Depakote until she is seizure free for two years. This news did burst our bubble because we've been having her see a Chiropractor with hope that it would help with the Epilepsy and that perhaps at some point we could lower her medication dose. However, no regrets on the Chiro because her immune system has been SO much better this year than last. She has yet to be sent home from school and her asthma is much better controlled--both of these have been huge steps forward.
Since the appointment, the results of the blood work have come back. Her Depakote levels were therapeutic which was good to hear, but her platelets are low. Apparently this is a common side effect of Depakote (which perhaps had not been monitored by Sophie's previous neurologist), so although she's still having seizure activity while sleeping, we are lowering her Depakote dose in the evening. She is now getting 250 in the morning and 250 in the evening, 125 mg less than before. We have two weeks on this new dose to monitor her for seizure activity and then redo the labs to look for improvement.
In the mean time her Neuro Psych eval is scheduled for early November and the school observations should be taking place in the next week. I'll challenge myself to update as things develop. Our next major step will be an overnight EEG at Lurie's in Chicago but that might not be until December or January as we work at taking things one step at a time. Thanks for your support and care.
October
On October 2nd, we awoke bright and early at 3:00 am to begin our EEG day. Sophie was such a trouper, we started with cartoons and cereal, then on to Walmart at 4:00, Denny's at 5:00, and back home at 6:00 to meet Joe and Wendi for the morning. After taking Wendi to school, we went to the hospital for the test. The test went well, and she went right to sleep when she was supposed to. At the end of it, the tech (who also did her last EEG) noted that it appeared the Depakote was doing what it was supposed to and that although she did see some activity, it was nothing like last time--hope at last.
A few days later the nurse from the neurologist's office called to let us know, "There was ongoing electrical activity in her brain, but it was not absence seizures so her medication would not be changed." Huh? Unfortunately Sophie's neurologist was on vacation and his partner could not answer any of our questions. The response to my many phone calls and questions was that he hadn't reviewed her previous EEG and therefore could not judge how/what changed. (Could he not look it up?) After a great deal of phone tag, the partner agreed to order a Neuro Psych consult based on the information from Sophie's school regarding her regression academically.
It is important to note that there are a number of "co-morbid disorders" associated with epilepsy. This means illnesses that are commonly present when a person has epilepsy. Some are ADHD, anxiety, and mood disorders; the idea was that perhaps these were what was causing the issues at school since they believed it was not the seizures.
At the same time as the Neuro Psych evaluation was finally ordered, I began my search for a new Neurologist who would be more attentive to Sophie's full life experience rather than just caring if we "see" seizures. I quickly discovered that Lurie Children's Hospital has an Epilepsy Center with Epileptologists who only work with this illness, school liaisons to help with 504 plans and IEPs, and a holistic approach. We were able to get an appointment rather quickly at a satellite clinic in Gurnee Mills, and things have truly taken off from there.
A few days later the nurse from the neurologist's office called to let us know, "There was ongoing electrical activity in her brain, but it was not absence seizures so her medication would not be changed." Huh? Unfortunately Sophie's neurologist was on vacation and his partner could not answer any of our questions. The response to my many phone calls and questions was that he hadn't reviewed her previous EEG and therefore could not judge how/what changed. (Could he not look it up?) After a great deal of phone tag, the partner agreed to order a Neuro Psych consult based on the information from Sophie's school regarding her regression academically.
It is important to note that there are a number of "co-morbid disorders" associated with epilepsy. This means illnesses that are commonly present when a person has epilepsy. Some are ADHD, anxiety, and mood disorders; the idea was that perhaps these were what was causing the issues at school since they believed it was not the seizures.
At the same time as the Neuro Psych evaluation was finally ordered, I began my search for a new Neurologist who would be more attentive to Sophie's full life experience rather than just caring if we "see" seizures. I quickly discovered that Lurie Children's Hospital has an Epilepsy Center with Epileptologists who only work with this illness, school liaisons to help with 504 plans and IEPs, and a holistic approach. We were able to get an appointment rather quickly at a satellite clinic in Gurnee Mills, and things have truly taken off from there.
September
Over the past couple months, it has felt as if we've started over on this journey. Here is an overdue recap of September.
A couple of weeks after school began, I was contacted by Sophie's teacher to talk about new concerns at school. In essence, she has made huge strides emotionally and socially but academically it has been a different story. Her teacher was concerned that Sophie has begun falling quite behind in school, in fact, information that she knew before (and that we believe she still knows) had begun to challenge her. It is as if she has become unable at times to access letters, words, numbers that we know are there. Her teacher noted that it is clear she is trying, but for some reason can no longer find the answers. This concern led us back to Sophie's neurologist who ordered an EEG after a great deal of phone tag.
Our worry was that although we are not observing seizures regularly during the day, perhaps she was having them at night and we just weren't able to see them. When she had her original EEG, they had reported that her sleep cycle was when her seizures were most active, but that we only worry about seizures when they can be dangerous or disruptive (walking down stairs, swimming, swinging from monkey bars, or trying to learn in school), and since her seizures haven't been disruptive or apparent while awake, her doctor hasn't worried.
However, although her seizures aren't disrupting her activity, we did think they were disrupting her sleep. She has continued to have enormous mood swings (to which her neurologist always replied, "Well, Depakote is a mood stabilizer", offering no other suggestions, compassion, or understanding), and she continues to really need daily naps and to be exhausted after school.
Her neurologist's resistance to really care about her full life and whole person is what motivated us to begin considering a new doctor. First, though there was an EEG to attend.
A couple of weeks after school began, I was contacted by Sophie's teacher to talk about new concerns at school. In essence, she has made huge strides emotionally and socially but academically it has been a different story. Her teacher was concerned that Sophie has begun falling quite behind in school, in fact, information that she knew before (and that we believe she still knows) had begun to challenge her. It is as if she has become unable at times to access letters, words, numbers that we know are there. Her teacher noted that it is clear she is trying, but for some reason can no longer find the answers. This concern led us back to Sophie's neurologist who ordered an EEG after a great deal of phone tag.
Our worry was that although we are not observing seizures regularly during the day, perhaps she was having them at night and we just weren't able to see them. When she had her original EEG, they had reported that her sleep cycle was when her seizures were most active, but that we only worry about seizures when they can be dangerous or disruptive (walking down stairs, swimming, swinging from monkey bars, or trying to learn in school), and since her seizures haven't been disruptive or apparent while awake, her doctor hasn't worried.
However, although her seizures aren't disrupting her activity, we did think they were disrupting her sleep. She has continued to have enormous mood swings (to which her neurologist always replied, "Well, Depakote is a mood stabilizer", offering no other suggestions, compassion, or understanding), and she continues to really need daily naps and to be exhausted after school.
Her neurologist's resistance to really care about her full life and whole person is what motivated us to begin considering a new doctor. First, though there was an EEG to attend.
Wednesday, May 15, 2013
Hope
After our visit with the neurologist last week, Sophie being sent home from school again this week, and several conversations with my mom, we decided to self-refer to a Pediatric Pulmonologist. There are only 12 in the Chicagoland area, and I believe we called the right one at the right time because we got in today. We knew going in that the visit would be three hours long and Sophie was a rock star.
The process was obviously long, but the abbreviated version is: breathing tests, asthma medicine, rest, repeat of breathing tests, examination and consultation with the nurse practitioner, and then another examination and consultation with the doctor.
The results were that they are a great fit for us! The doctor said we've been seeing all the right specialists (people he respects and works with) but that it seems no one has been steering the ship--which is exactly how I've been feeling. Their goal is to communicate with all the doctors we've seen in the past year (sleep specialist, ENT, neurologist, and pediatricians) to talk about what they're assessments were, what they took from their tests, and what the plan of care should be. They are also going to review the MRI, the Sleep Study results, and have ordered a chest x-ray (in fact they were astounded this had not ever been done).
The medical results were that she definitely has asthma, or as the doctor said, "her lungs really liked the asthma medication". She had solid improvement in the breathing tests after the medication. They don't however believe her chronic cough is from the asthma (because it was not improved by the medication), they think she may still be dealing with this sinusitis she was diagnosed with by the sleep specialist and are going to work to cure that. We're switching asthma meds (again) to Advair which has both the bronciodilator and the steroid in one treatment.
Now we give them a few weeks to review all her tests, communicate with the previous specialists she's seen, get the chest x-ray, and to evaluate how she is on the Advair. We go back in the end of June. I really am thrilled to have someone willing to take the lead, and even happier that they are glad to do it. The doctor actually said, "We are very experienced in working with complicated chronically ill patients". This is just what we've needed. Someone who won't look at just one part of this puzzle, but the whole picture and help us to understand it that way as well.
Now, on to Advair and renewed hope that this is a journey we can navigate.
The process was obviously long, but the abbreviated version is: breathing tests, asthma medicine, rest, repeat of breathing tests, examination and consultation with the nurse practitioner, and then another examination and consultation with the doctor.
The results were that they are a great fit for us! The doctor said we've been seeing all the right specialists (people he respects and works with) but that it seems no one has been steering the ship--which is exactly how I've been feeling. Their goal is to communicate with all the doctors we've seen in the past year (sleep specialist, ENT, neurologist, and pediatricians) to talk about what they're assessments were, what they took from their tests, and what the plan of care should be. They are also going to review the MRI, the Sleep Study results, and have ordered a chest x-ray (in fact they were astounded this had not ever been done).
The medical results were that she definitely has asthma, or as the doctor said, "her lungs really liked the asthma medication". She had solid improvement in the breathing tests after the medication. They don't however believe her chronic cough is from the asthma (because it was not improved by the medication), they think she may still be dealing with this sinusitis she was diagnosed with by the sleep specialist and are going to work to cure that. We're switching asthma meds (again) to Advair which has both the bronciodilator and the steroid in one treatment.
Now we give them a few weeks to review all her tests, communicate with the previous specialists she's seen, get the chest x-ray, and to evaluate how she is on the Advair. We go back in the end of June. I really am thrilled to have someone willing to take the lead, and even happier that they are glad to do it. The doctor actually said, "We are very experienced in working with complicated chronically ill patients". This is just what we've needed. Someone who won't look at just one part of this puzzle, but the whole picture and help us to understand it that way as well.
Now, on to Advair and renewed hope that this is a journey we can navigate.
Thursday, May 9, 2013
Long Overdue
Over the past few month, Sophie has obtained a new diagnosis, Ashtma. At first it was occasional and was reflected in her difficulty getting over colds--she would have a lingering cough for months. Lately, it has become much more severe (hers along with many other children this spring). At first we tried Claritin, then Singulair, but in the end neither of those seemed to make a difference. Next came an Albuterol inhaler which worked, but only for an hour or two. Finally, another pediatrician in the practice saw her a few weeks ago and decided to take another route: a nebulizer, steroid inhaler, and antibiotics because she had bronchitis . The albuterol nebulizer made her tremor so after a week of that we moved to xopenex (levalbuteral)--which has fewer side effects. The three together beat her bronchitis, but while waging the asthma war we notied something else, when the asthma left her exhausted we saw a pattern of break-through seizures.
Luckily we had an appointment with the neurologist already on the calendar and figured we'd handle it today. What I learned today is that epilepsy and asthma are a very rough duo. They both come on strongest at night, they both exhaust you, and each makes treating the other more difficult In essence we're stuck in a cycle in which when the asthma flares she becomes exhausted then from lack of oxygen and lack of sleep and both of those cause seizures. The seizures then cause a lack of restful sleep as well, which leads to a tiny little five year old body unable to muster the strength to get over the asthma symptoms.
Our pediatric neurologist is great and let me take the lead on what we want to do. He was willing to put her on Keppra to try to eliminate the seizures, but I strongly feel she is on ENOUGH drugs as it is. I told him that I don't want her to be drugged out and I don't want her to lose her spark. He agreed that since we're only seeing the seizures in the evening and since that's when we're in a "controlled environment" rather than at school, he'll give us time to try to get the asthma under control before adjusting anything. He stressed that seizures aren't bad for the brain, but that ideally we would see NO seizures, especially at her level of medication. So, our plan for now is to spend the next three months trying to control her asthma and at that point we'll do another EEG to see if there are more seizures than we're seeing or if it truly is just the exhaustion causing them. If the EEG demonstrates that she is still having seizures we'll add Keppra since she's already maxed out on Depakote.
The good news is, she's finishing up Kindergarten strong. She may not have fully caught up to her peers yet due to the epilepsy, but that's pretty common for the diagnosis not to mention July birthdays. I'm really happy with how she is doing and all that she's learned. I'm hoping that by the time first grade starts, we'll have all of this in the past and we'll be moving forward with balanced medications and no more seizures!
Luckily we had an appointment with the neurologist already on the calendar and figured we'd handle it today. What I learned today is that epilepsy and asthma are a very rough duo. They both come on strongest at night, they both exhaust you, and each makes treating the other more difficult In essence we're stuck in a cycle in which when the asthma flares she becomes exhausted then from lack of oxygen and lack of sleep and both of those cause seizures. The seizures then cause a lack of restful sleep as well, which leads to a tiny little five year old body unable to muster the strength to get over the asthma symptoms.
Our pediatric neurologist is great and let me take the lead on what we want to do. He was willing to put her on Keppra to try to eliminate the seizures, but I strongly feel she is on ENOUGH drugs as it is. I told him that I don't want her to be drugged out and I don't want her to lose her spark. He agreed that since we're only seeing the seizures in the evening and since that's when we're in a "controlled environment" rather than at school, he'll give us time to try to get the asthma under control before adjusting anything. He stressed that seizures aren't bad for the brain, but that ideally we would see NO seizures, especially at her level of medication. So, our plan for now is to spend the next three months trying to control her asthma and at that point we'll do another EEG to see if there are more seizures than we're seeing or if it truly is just the exhaustion causing them. If the EEG demonstrates that she is still having seizures we'll add Keppra since she's already maxed out on Depakote.
The good news is, she's finishing up Kindergarten strong. She may not have fully caught up to her peers yet due to the epilepsy, but that's pretty common for the diagnosis not to mention July birthdays. I'm really happy with how she is doing and all that she's learned. I'm hoping that by the time first grade starts, we'll have all of this in the past and we'll be moving forward with balanced medications and no more seizures!
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