type(s) of seizures: Typical IS, jacknife type with the body tensing and jerking, legs toward body, body towards legs. Eyes rolling backward.
frequency of seizures: The seizures originally happened several times a day. usually upon waking. Now much less frequently and less severely because of all the medication.
additional health issues: In the last month we have had some developments and I need to update this homepage. Logan's IS HAD been diagnosed as symptomatic of the Hypoxic-Ischemic Encephalopathy which was his primary diagnosis. The HIE was attributed to some unknown cause in utero...cord temporarily wrapped around his neck or something like that. Then in September he had another MRI and it documented further brain atrophy...significant enough that even we laypeople could notice the difference. Since the atrophy was progressive, the initial diagnosis was in doubt and Logan was put through a whole series of metabolic tests. None of the metabolic tests was conclusive...BUT, both of the metabolic specialists (endocrinologist and geneticist) now feel that he has an undiagnosed metabolic disorder. They explain that this is the newest and least understood part of medical science and that there is a high probability that they will never have a specific metabolic diagnosis. This new news is difficult because it means that Logan will continue to go downhill and eventually not be able to respirate without help. We have had an agonizing last three months trying to figure out what to do and the kids (his parents) have come to a wise though difficult decision, to enroll Logan in a home based hospice program. This is the status as of 11/15/98. Another MRI is scheduled for 12/04/98.
Medications used (in chronological order)
Phenobarbital
still being used: No
effectiveness: Neutral
max. dose: Don't remember.
positive effect: Seizures continued with same intensity and frequency
side effects: Sluggishness, sleepy.
comments: Phenobarbital seemed to have no effect on the IS. It did make him sluggish, and he slept much more than normal.
Carbamazepine (Tegretol, Carbatrol)
still being used: No
effectiveness: Negative
max. dose: Don't remember.
positive effect: None.
side effects: Stomach Ulcers.
comments: Seemed to have no effect on the Infantile Spasms.
Corticotropin (ACTH)
still being used: No
effectiveness: Positive
max. dose: 5 ml per day
positive effect: Stopped the seizures
side effects: Weight gain, irritability, didn't sleep.
comments: Because Logan was eating so much more with the ACTH, 37 ounces versus maybe 20 ounces, his reflux became much worse and the Doctors recommended a Nissan fundoplication surgery.
Clonazepam (Klonopin, Rivotril)
still being used: Yes
effectiveness: Neutral
max. dose: 3cc, 3 times per day
positive effect: Hard to tell but the IS are very mild.
positive effect: Difficult to tell because of multiple drugs.
side effects: Stomach problems
comments: Logan has also been started on Hydrocortizone but the forms won't allow me to enter it so I am showing it here. The Hydrocortizone is 1 1/2 cc, 3 times a day.
Surgeries (in chronological order)
G-Tube Placement (Gastrostomy Tube)
details:
surgery date:
effectiveness: Positive
positive effect: Allowed Logan to get the proper nourishment.
comments: In June of 1997, Logan was losing the ability to suckle a bottle and was becoming dehydrated. The insertion of a g-tube allowed him to get more food and prevent the dehydration.
Nissen Fundoplication
details: Nissan Fundoplication And Pyloroplasty
surgery date:
effectiveness: Positive
positive effect: Helped control Logan's reflux.
comments: After insertion of the g-button Logan prospered for a short time but then developed severe reflex and was vomiting most of what he ate. The fundo and pyloroplasty have allowed him to get more nourishment and keep it down.
Personal Notes
Logan died on October 22, 2000. When he was admitted to the "at-home" hospice program in late 1998, it was expected that he was in the six month window that hospice organizations generally require (that is, the patient is generally expected to be within six months of death). Logan beat all the odds and was in the hospice program nearly two years. He lived much longer than expected because of the excellent care he received. No one, who has not lived through the ordeal of having a child die can ever understand the impact upon the family. For two years his parents never got a full night's sleep. The regimine was 24 by 7....nebulizing, bolus feeding, pump feeding, holding, comforting, grieving,giving oxygen treatments, never thinking of oneself, being totally unselfish, being awakened in the middle of the night to the breathing alarm knowing that Logan wasn't breathing, wondering if this was the end. Ultimately, one night, October 22, 2000...it was. The hospice social workers have all told the family that Logan's primary caregiver, his mother Joelle, was exceptional in their experience and was an outstanding caregiver. This tribute is dedicated to Joelle and all primary care givers ...May God bless you all!
