|The Puck Stops Here -- The Conclusion
|Seizures:8 Grand Mals (Tonic Clonic) (2 of them April 2003 after a 5 year absence) -shortest 7 minutes, longest 90. Stopped breathing for 30
minutes in the ER from #6 resulting from the meds they gave him to stop the seizure [50 minutes long]. They bagged him and kept his O2 level good.
He was unconscious for 36 hours after that one and hospitalized 3 days. 150+ Partial Complex Seizures, -staring episodes with various states of
consciousness; In a many he can talk very slowly but not very accurately. In many he stares and simply is "not home". These last from 1 to 30
minutes. 100s Simple Complex, -also staring seizures yet much shorter (10 seconds to 1 minute, almost like day-dreaming but still able to respond
to verbal stimuli to some degree). As with anyone with a seizure disorder, their seizure patterns and types change over time. Two Years ago (fall
2001) he had 4 Partial Complex where he was speaking and crying and begging for help. He kept saying he was scared and asking for help. His
head turns sharply to the left and his eyes also shift hard left. Clearly he was conscious enough to realize that this was involuntary and obviously very
unsettling. Let me say for the record that is an AWEFUL feeling as a parent -not being able to help him at all. All we can do is hold him and rub his
back and tell him we love him and that it will be over soon. Since then most of his seizures are like this.
Starting in Fall of 2000 he started having a new type of seizure known as Spike-Wave-Stupor; see below; (Update May 2001 for details)
Medications and effects on Organs: His Valproic Acid blood levels at times is high-- high enough to be straining his liver but necessary to keep him
from having a Grand Mal. This high dose therapy is not without risk. In spring and summer 2000 we had a very tense and scary time. Christian was
showing early signs of Bone Marrow Toxicity from high doses of meds. In an effort to stem off Aplastic Anemia (potentially fatal), and drug induced
Leukemia (also fatal) we reduced his Valproic and started a new med which was ultimately going to replace the Valproic Acid. Christian's Platelets
were 114K (normal is 145-400K), his White Blood Count was 6,200 (normal 6,500 - 11,000) and his RBC was 4.07& (normal is over 4.3). To be
classified as either Aplastic Anemia or Leukemia all three figures have to be low --lower then what Christian was but he was clearly in danger for 3
months. With the addition of Gabatril and the reduction of Valproic we seemed to have warded off these horrible diseases. His values all returned to
normal --low but in normal range.
Trying new meds causes various side effects including 3 months in the fall of 99 of a very irritable unhappy child with a very bad attitude. After
reducing his meds the behavior problems disappeared but the trade off is more frequent seizures.
UPDATE May 2001Our hopes for Gabatril have been squashed. In an effort to stop his increased seizure activity in March of that year we increased
his Gabatril dose in early April. We noticed that Christian had become spacey all of time. He had experienced a new type of seizure over the past 10
months called Spike-Wave-Stupor. In this type of seizure you are spacey and not able to function properly. Until April he had suffered 9 episodes
lasting anywhere from 45 minutes to 90 minutes. He would be able to speak with us yet he was clearly confused and almost in slow motion. Now,
he was in this state ALL of the time. Sometimes worse, sometimes better but ALWAYS spacey. In response to this we had an EEG done in early May
(2001) which showed that he was having frontal lobe seizures (Spike-Wave-Stupor) 24/7 (yes, all of the time). We had to do something because this
was causing his already delayed learning to be nearly stopped. We increased his Valproic (see earlier as to what this can do) and reduced his
Gabatril back to what it was early in the year, and after 2 weeks did another EEG. Low and behold what we had surmised was the case: the Gabatril
was causing his Spike-Wave-Stupor seizures. Yes, his Anti-Seizure med was causing seizures. We reduced his Gabatril and ultimatley got him off
of it and replaced it with something else. Unfortunately the two best alternatives Topomax (causes speech difficulties) and Lamictal (can cause a
potentially fatal skin rash in 7-8% of users) so for now we were leaving well enough alone.
UPDATE December 2001 the roller coaster continues: After having 9 seizures in a little over two weeks in September (2001) and early October we
increased his Valproic Acid, and reduced his Gabatril (to finally get him off of it and onto maybe Zarontin; rather then the Topomax which we have not
done since that drug can have adverse effects on speech and he already has a hard enough time with speech). We also increased his Neurontin to
help with some panic attacks he was having. All of this came about because he gained 5 lbs. at the beginning of the school year.
In an effort to help with his sleeping, which has always been lousy, we added a rather benign hormone -Melatonin. This worked GREAT and he
slept like a charm!!! All good things must come to and end though. On October 29 (less then 2 weeks into the new med) he "went off the deep end"
so to speak. He flipped out at school becoming very angry and very aggressive.He was hitting and punching everyone. He seemed to be "stoned".
He did not know who we were at times. We had to escort him out of school on Tuesday (the 30th). We (and the school) were very concerned. We
held an emergency Team meeting with the behavioral specialists. We were seen by his Neurologist at Dartmouth... the conclusion -most likely
Bio-Chemical. We reduced all of the meds he was on and by mid-week the next week he was back to his happy self. It sure is good to have him
Update August 2002: We finally have gotten rid of Gabatril. That drug caused more problems then it cured. We did bite the bullet and he is now on
Lamictal, yes, the one that can potentially have a fatal skin rash. We are vigilant and watch for any signs of the rash though. So far, and we know we
are in what is called the honeymoon phase of the med, it is working well. He has had a lot of breakthrough seizures throughout the weaning off and
on process and he has been quite irritable as the chemical levels change but all in all he has been a trooper. Our ultimate goal is to get him on
this med and then maybe off of Valproic as well, as Lamictal is also good to treat Grand mals. That would even mean getting him off of Zantec, which
is only there because the Valproic causes ulcers and ulcer like symptoms in him. The saga never seems to end. Blood draws regularly. He gets
pricked and prodded varying from every 6 weeks to every 6 months. He has had full anesthesia four times -once for an operation for Hypospadious
and twice for a 70/90 minute MRI and this past August (2003) for a spinal tap to test for specific Amino Acid deficiencies. . Over the past 9 years he
has had more then 6 gallons -yes gallons of Valproic Acid not to mention the Phenobarbital he was on for 6 months prior to Valproic, the Neurontin,
Gabatril, Zantec, Carnitine, Lamictal and Baclofen.
Common Illnesses: When he gets a cold add cough medicine, Tylenol and any antibiotic he might be prescribed. It is not easy living with all of
this --we hate the meding but know we have to do it. Believe me, we have met many parents with kids far worse off then Christian. All it takes is visit
to Dartmouth Children's Hospital or CHAD to make you very Thankful for the cards you or he were dealt.
There is another pet peeve that we (and I'm sure anyone in our position) have: ILLNESES. Any illness that has a fever or that includes vomiting is a
major problem. A lot of people / parents, think nothing of sending their sick child to school or over to a friends house to play even when they are sick.
We do realize that the more you are exposed to the stronger your immune system will be in the future, BUT at what expense. Fever is a major
contributor to seizures. Any fever can lower your seizure threshold but a fever spike (going from one temp to a higher in a very short time) can set off a
seizure. I guess it should be obvious why we don't want to be around ANYONE who has, or recently has had a fever. The other, probably more
problematic illness is vomiting. Not just because I have a strong phobia of it but because it forces us to make a decision. If Christian vomits within
60 minutes of taking his meds we have to readminster them. We also have to try and determine how much was absorbed before he threw it up. We
have to play the guessing game, which intensifies the tension of having a sick child. We have to re-administer roughly every 15-30 minutes until they
stay in him. Nothing like worrying about a sick child and whether he is going to OD because you made the wrong decision to readminister. Do
every parent with a special needs child a favor -keep away if you're sick! (click here for incubation periods of
There is a reason Wendy and I are "neurotic" and have not left our boys overnight -ever -it's
called love. We do everything for our boys because we love them -and I think it shows.
January 2002 One of the boys favorite past
times! Justin being the "helper" -it really makes
him feel good to be able to help with Christian.
Christian at the hockey rink -his second home. I
caught him tossing the puck (see upper left
corner); January 2002.
"He Waved To Me, Paul Waved To Me". All Christian could say after seening "1964 The
Tribute" a GREAT Beatles act. Gary (Paul McCartney) waved to Christian and it meant the world
to him! Anyone who knows Christian knows he loves music and in particular the Beatles and
Elton John.Music is a big part of his life and they have even been using it to help him with
This is Photsensitivity -75-80 degrees and playing outside in the sun
for 15-20 minutesmakes him RED. Once brought in to the air
conditioning he returns to normal after 15-20 minutes. ;He has had
a number seizures while "RED" due to the bodies misidentifying the
issue as a fever = "false fever".
Thank you for visiting and taking the time to see life from our point of view. We
welcome comments and suggestions.
Email us at: John & Wendy