Patient Update May 23 2007

Spoke with Patient at 9 AM. Thoughts were clear. Patient seemed excessively concerned about feelings or mood.

Patient Update May 22 2007

Patient experienced confusion and drowsiness after a full day on increased dose of meds. (150mg Seroquel at 11PM, 100mg Lamictal 11AM & 5PM) Doctor was called. Patient spoke to Doctor. Decision was made to not change meds yet for a few days.

Patient fell with dizziness at about 1AM (a couple hours after evening meds.)

Patient Update May 17 2007

Patient reported having hallucination again at about 3AM and woke up other family member a few times. This may occur as a result of having taken the drug at 4PM instead of bedtime by mistake. Patient reports today no known side effects from doubling dose of Lamictal.

We should mention that information is available which suggests that Seroquel can lower seizure thresholds and theres a possibility the Neurologist in consult with Psychiatrist prescribed Lamictal as a prevention.

Patient began using a spreadsheet with daily checklist for medications.

Patient Update May 16, 2007

Patient begins double dose of Lamictal on May 17th which becomes 50mg at 11AM and 50mg at 5PM.

Had video conference with Patient for an hour this evening. We discussed how the Patient mistakely took the 100mg Seroquel at 4PM today May 16th and as a result fell asleep between 7-8PM and planned to go to sleep at 11PM for the night. Conversation started at 8PM by phone. We discussed a hallucination that was experienced at 3AM today. We also discussed the hallucination from 3 weeks ago that involved a police visit to the house and the trip to the hospital. It is the same concern for the family member which is being experienced. The hallucinations were being stated as factual events and no fear was associated with the memories of the events during the discussion.

It appears that at least the Psychiatrist has allowed for the possibility that seizure treatment could improve the outcome. Since our posts about Lamotrigine and requests for trials for the Patient largely went ignored up to this point, we are satisifed that the current Psychiatrist perhaps has some prior experience with this matter. During the first consult after release from the hospital the family requested Lamictal samples and this Psychiatrist agreed and provided them. It was just a few days later when the Neuorlogist who had, even as recently as the day before, been stating that seizures were not present, that all the symptoms we have previously posted in the blog were not seizures, the next day prescribed the anti-convulsant Lamictal (Lamotrigine.) And prescribed the increasing dose 25mg x 2, 50mg x 2, 75mg x 2 over the coming weeks. If you've been following the history of this blog up to this point, lets pause for a moment.... Ok, enough said.

Observations of the Patient's progress can be summarized as follows:
1. Clearer thought and speech as compared to Risperdol & Abilify.
2. No motor impediments yet noticed as compared to Risperdol & Abilify.
3. Sleep cycle appears healthy and day wake hours appear normal and longer than without medication.
4. expression of emotion returns.
5. thought disorder which previously occured daily after meals has become very infrequently very late at night near time of night dose of Serquel is due.
6. Patient feels clear thinking enough to drive a vehicle early in the day.
7. Patient has conversations by phone that go without any searching for words and feels this is significant progress.
8. Long conversations are now possible extending beyond an hour where before 5 minutes would have been the limit.
9. Optimism has increased regarding outlook, that we may find a solution and slow or stop the decline and not end up in the same condition as mother at the same age.
10. Patient recalls memories and brings them up in conversation instead of only being able to answer questions.
11. Patient askes fewer questions of family members and experiences less confusion and less thought disorder.
12. Patient experinces little worry where before worry would consume the entire day and be present with serious fears.
13. Patient no longer experienceing leg or muscle weakness.
14. Patient appears to be mentally less affected by blood sugar fluctuations around meal times.
15. Patient remarks being tired of changing drugs (referring to the side effects), and wants the current drugs to work.

Patient Update May 15, 2007

Patient is taking 100 mg of Seroquel at bedtime and 25 mg of Lamictal at 11AM & again 5PM. Patient's psychosis appears to be less frequent.
Patient has initiated conversation more frequently and is able to 'small-talk'. Patient still struggles at times to express complete thoughts/sentences, but not as problematic as previously when at hospital on Atavan, Tegredol, Seroquel.

Both Neurologist and Psychiatrist have agreed that Patient should continue taking the Lamictal, we aren't certain what common conclusion they came to, just that they told Patient to take it instead of just taking Seroquel alone. Patient described having a feeling of a seizure coming on this past Saturday, however Patient said it did not manifest itself into a full seizure. Patient said a feeling/sensation originated in midsection but then wore off before escalating into anything further.

We were told that Seroquel was missed on Friday evening because Patient mistakenly thought it was taken at 4PM and didn't want to over do it at regular time. As a result, Thought disorder was experienced by 10 AM the following morning and significantly at 10PM that next day.

Patient has started to bring up topics related to patient's Christian faith and has expressed the importance of holding onto that faith and remembering it during Patient's struggles. Before, Patient almost seemed removed from this religious/spiritual aspect of Patient's life. The fact that Patient is returning to these thoughts is a sign of improvement. Also, Patient experiences a wider range of deeper emotion now. Patient also expresses care for the feelings of other family members.

Patient Update May 11, 2007

Neuorolgist calls to prescribe anti-convulsant Lamictal and reports that current Psychiatrist was consulted.

Patient Update May 10, 2007

Neurologist calls in AM to discuss diagnosis. Claims that seizures are not present (despite reporting seizure activity from 2nd EEG results in Nov 2006.)

Patient Update May 7, 2007

Patient visits with new Psychiatrist. Seroquel dose is raised to 100mg before bed. During Dr. visit a family member requests Lamictal trial.

Dr. begins seziure discussions with Patient. It become clear at this point the seizure information is completely new information which was not provided by other doctors from the same hospital system with 3 previous EEG tests showing possible activity.

Lamictal is provided as 25mg AM and 25mg PM for two weeks.

Patient Update May 6, 2007

Patient is still experiencing psychosis to the same degree of what it was before hospital visit. Fifty mg of Seroquel has been taken at bedtime since being released from the hospital. Psychosis symptoms were noticeable on Thursday evening, 3 days following release from hospital. Patient also communicated feelings of depression Thursday evening. Psychosis / thought disorders were continous throughout the day on Saturday and Sunday. Patient sees doctor May 7th for first consult after hospital release by Psychiatrist in same hospital system, once previously visited before the Keppra event. Patient has experienced headaches in the upper/back region of her skull. Auditory hallucinations have occurred since being home from the hospital.

Obervations are that the hospital medicines which were tested or tried are now worn off and Seroquel is the only medication being used at this point.

Time for a Specialist

As a result of our in depth research coupled with our understanding of the Patient and medical history, we are dissatisfied and frustrated with the current situation and how the doctors have handled Patient. We feel as though the doctors have only scratched the surface and have shown little concern or desire to dig deeper and consider other angles.

Based on Patient's unique symptoms and poor response to medications prescribed up to this point, and nothing hopeful from Patient's doctors, we have reached a point of frustration. it appears we've exhausted our options locally with respect to finding a Physician with expertise in dealing with Patient's unique blend of symptoms. Considering the delicate nature of the situation with respect to potential damage occurring from taking wrong medications, we cannot afford to keep Patient on current medication for psychosis for long when we know Patient's seizures aren't being addressed and cognitive abilities are being strongly compromised by the current drug.

We need to find a doctor as soon as possible who can help transition Patient off of the risky medication currently being used for psychiatric treatment.
At this point we feel it would be beneficial to find a Specialist familiar with the connections between Neurology and Psychiatry. We are looking into brain doctors with experience dealing with people suffering from similar problems as Patient (those dealing with patients whose case has been passed back and forth between neurologist and psychiatrist). We will be in contact with the insurance company to determine if two doctors in consideration participate with Patient's insurance. Depending on results we may need to perform further research to find a few more Specialists that deal with seizure patients with psychosis. We are open to recommendations. Please comment with known name of doctor practicing in this field of medicine.

CRITICAL INFORMATION ABOUT SEIZURES WITH PSYCHOSIS SYMPTOMS AND RISK OF MIS-DIAGNOSIS:
http://www.psychiatrictimes.com/p950927.html

For Further Consideration

In doing research, I found this information which may be beneficial. One patent was diagnosed with with CP TLE with evidence of bipolar disorder caused by TLE. This patient was given 2500mg of Depokote (aka Valproic acid) and 50mg of Seroquel. This patient claimed that after suffering affects of this disorder for 20 years, never felt better since treatment with these medications.

Refer to this article later with regards to how it deals with glutamate toxcicity:

http://www.nature.com/tpj/journal/v4/n5/abs/6500269a.html

Refer to this article regarding Valproic Acid:

http://en.wikipedia.org/wiki/Valproic_acid