AJ is 11 years old and started having seizures at 14 months
old. He was first diagnosed with myoclonic epilepsy of infancy
and progressed to all seizure types, thus ending up with the
LGS diagnosis. AJ’s Neuro diagnosed him with LGS about four
years ago. He also has mild ataxia Cerebral Palsy (poor
balance & coordination), severe mental retardation, Sensory
Integration Dysfunction (brain’s inability to process info sent by
the senses) and hypotonia. AJ is incontinent and completely
non-verbal, but does eat/drink by mouth and is ambulatory
when not seizing.
old. He was first diagnosed with myoclonic epilepsy of infancy
and progressed to all seizure types, thus ending up with the
LGS diagnosis. AJ’s Neuro diagnosed him with LGS about four
years ago. He also has mild ataxia Cerebral Palsy (poor
balance & coordination), severe mental retardation, Sensory
Integration Dysfunction (brain’s inability to process info sent by
the senses) and hypotonia. AJ is incontinent and completely
non-verbal, but does eat/drink by mouth and is ambulatory
when not seizing.
AJ wears a helmet with face shield (like a football player) to protect him from injuries,
from the literally hundreds of daily seizures. He has only experienced 2 -3 days in his
entire life where he didn’t have a seizure (or at least a clinical seizure anyway). As you
can tell by the attached picture, AJ is missing his two permanent upper front teeth due to
seizures; he lost both his two permanent upper front teeth on two separate occasions
due to violent atonic seizures while in his zipped up/padded vail bed which the FDA has
placed a recall on.
This time last year AJ was in a medically induced coma at Rady Children’s hospital. He
seized nonstop day and night for nine straight days and nights. The doctors and nurses
were amazed at how much he went through. My husband and I decided not to intubate
him and we told the doctor to wean him off the versed and that we’d take our chances. I
felt if AJ couldn’t breathe on his own then he was no longer meant for this earth. I was
prepared for our Heavenly Father to bring AJ home. When AJ was finally weaned off the
versed and he awakened, to everyone’s amazement, his seizures were gone. AJ caught
a staph infection and the IV catheter broke off in his vein (which the doctors and nurses
told me they had never seen before) and he had to be hauled off to surgery to have it
removed. Thankfully there was still enough versed in his system that they didn’t have to
give him any more anesthesia when the surgeon removed the catheter.
AJ has tried almost every medicine and is currently taking Felbatol (800 mg. three times
a day), Lamictal (250 mg. twice a day) and 100 mg. of Dilantin in the am and 75 mg. at
bedtime. We also use 10 mg syringes of Diastat rectal gel at home as needed, which the
past 2 weeks has been nightly (along with oxygen). Even using the 10 mg. of Diastat
rectal gel sometimes doesn’t stop AJ’s seizures and he has been seizing all night long for
the past 2 weeks (03/09).
AJ is on his 2nd battery pack (2nd one implanted 06/07) for the VNS (originally implanted
08/26/02) and was a little over 3 years old when it was implanted. We were told by the
surgeon that we had to commit to having it in for one year, which we did, with no avail.
Exactly one year and one week after the VNS implant, we noticed a 50% decrease in his
atonic seizures. Since then, AJ has acquired every seizure type there is: Atonic, tonic,
tonic-clonic, absence, partial, complex partial, generalized, etc. For us, the VNS has
worked for the atonic seizures and I am so glad we had it done. I just wish the VNS
worked as well on the other seizure types that are a problem for us now, especially at
night-nocturnal and during sleep (tonic and tonic-clonic).
AJ is also on the 2nd round of the Ketogenic diet…he wouldn’t tolerate it at age 2 years
old and kept vomiting up the MCT oil (Medium Chain Triglycerides). The Dietician we’re
currently working with at Rady Children’s Hospital in San Diego, CA is awesome…she
has wonderful ideas for meals, etc. We mix the oil, Ross Carbohydrate Free formula,
heavy whipping cream, 10 ml. of apple juice and 50 ml. of sugar free Kool-Aid into baby
bottles and let AJ drink from a straw. He loves the taste, which makes it easier to get into
him.
Even with all the treatment AJ is on (past and present) seizure control is still not
achieved, which is why I am now considering his Neurologist’s suggestion of the Corpus
Collostomy surgery, which is how I landed on LGS Foundation’s website.
We no longer call 9-1-1 or have AJ admitted into the hospital because we’ve come to the
realization (which our Neuro. is relieved about) that even the best treatment can’t/hasn’t
stopped AJ’s seizures in the past…they’ve stopped on their own when they were ready to
stop. My husband and I have decided whatever’s going to happen is going to happen in
the comfort/privacy of our home. We use the medications-i.e. rectal valium/equipment-i.
e. pulse oximeter and oxygen to maintain/sustain AJ the best we can in the
comfort/privacy of his own room, which as I’m sure you can imagine, is VERY difficult at
times.
That’s our short story in a nut shell.
Submitted by Kimberly, AJ's mom
from the literally hundreds of daily seizures. He has only experienced 2 -3 days in his
entire life where he didn’t have a seizure (or at least a clinical seizure anyway). As you
can tell by the attached picture, AJ is missing his two permanent upper front teeth due to
seizures; he lost both his two permanent upper front teeth on two separate occasions
due to violent atonic seizures while in his zipped up/padded vail bed which the FDA has
placed a recall on.
This time last year AJ was in a medically induced coma at Rady Children’s hospital. He
seized nonstop day and night for nine straight days and nights. The doctors and nurses
were amazed at how much he went through. My husband and I decided not to intubate
him and we told the doctor to wean him off the versed and that we’d take our chances. I
felt if AJ couldn’t breathe on his own then he was no longer meant for this earth. I was
prepared for our Heavenly Father to bring AJ home. When AJ was finally weaned off the
versed and he awakened, to everyone’s amazement, his seizures were gone. AJ caught
a staph infection and the IV catheter broke off in his vein (which the doctors and nurses
told me they had never seen before) and he had to be hauled off to surgery to have it
removed. Thankfully there was still enough versed in his system that they didn’t have to
give him any more anesthesia when the surgeon removed the catheter.
AJ has tried almost every medicine and is currently taking Felbatol (800 mg. three times
a day), Lamictal (250 mg. twice a day) and 100 mg. of Dilantin in the am and 75 mg. at
bedtime. We also use 10 mg syringes of Diastat rectal gel at home as needed, which the
past 2 weeks has been nightly (along with oxygen). Even using the 10 mg. of Diastat
rectal gel sometimes doesn’t stop AJ’s seizures and he has been seizing all night long for
the past 2 weeks (03/09).
AJ is on his 2nd battery pack (2nd one implanted 06/07) for the VNS (originally implanted
08/26/02) and was a little over 3 years old when it was implanted. We were told by the
surgeon that we had to commit to having it in for one year, which we did, with no avail.
Exactly one year and one week after the VNS implant, we noticed a 50% decrease in his
atonic seizures. Since then, AJ has acquired every seizure type there is: Atonic, tonic,
tonic-clonic, absence, partial, complex partial, generalized, etc. For us, the VNS has
worked for the atonic seizures and I am so glad we had it done. I just wish the VNS
worked as well on the other seizure types that are a problem for us now, especially at
night-nocturnal and during sleep (tonic and tonic-clonic).
AJ is also on the 2nd round of the Ketogenic diet…he wouldn’t tolerate it at age 2 years
old and kept vomiting up the MCT oil (Medium Chain Triglycerides). The Dietician we’re
currently working with at Rady Children’s Hospital in San Diego, CA is awesome…she
has wonderful ideas for meals, etc. We mix the oil, Ross Carbohydrate Free formula,
heavy whipping cream, 10 ml. of apple juice and 50 ml. of sugar free Kool-Aid into baby
bottles and let AJ drink from a straw. He loves the taste, which makes it easier to get into
him.
Even with all the treatment AJ is on (past and present) seizure control is still not
achieved, which is why I am now considering his Neurologist’s suggestion of the Corpus
Collostomy surgery, which is how I landed on LGS Foundation’s website.
We no longer call 9-1-1 or have AJ admitted into the hospital because we’ve come to the
realization (which our Neuro. is relieved about) that even the best treatment can’t/hasn’t
stopped AJ’s seizures in the past…they’ve stopped on their own when they were ready to
stop. My husband and I have decided whatever’s going to happen is going to happen in
the comfort/privacy of our home. We use the medications-i.e. rectal valium/equipment-i.
e. pulse oximeter and oxygen to maintain/sustain AJ the best we can in the
comfort/privacy of his own room, which as I’m sure you can imagine, is VERY difficult at
times.
That’s our short story in a nut shell.
Submitted by Kimberly, AJ's mom
| AJ'S STORY |