Harrison Pelz story |
Last Activity: 04-26-2010 11:12 AM
About Me
- About Harrison Pelz story
- Seizure Background
- I have started our 2.75 year old son on the GARD diet as of Monday April 12th. Harrison was diagnosed with myoclonic astatic epilepsy on or near March 3, 2010. He is developmentally normal and his eeg was normal except during a "myoclonic episode". He was put on Clobozam and for a time it was effective as the dose went up. After reaching the maximum target dose of 15mgs the seizures continued. Before any medications Harrison only had myclonic jerks around bedtime or sometimes after a hot bath or in his car seat?? Since reaching the top dose of Clobozam the seizures became larger and more frequent to the point where he would be knocked down by them and on one or two occasions go into a tonic seizure. He would always come around rapidly and his language etc. continued to develop. After a bad spell of seizures the doctors recommended we introduce valproic acid as well as Clobozam. Harrison had a very strong mental reaction to the VA as well as an increase of seizures. The VA was in a solution form that looked like red syrup, lots of aspertate. After raising the VA dose as instructed Harrison basically checked out and was hearing bees in his head! Psychotic stuff, plus his speech development suddenly stopped. Harrison was on VA for one week. 1ml twice a day for three days and 2ml twice a day for two days.
We threw the VA out on Sunday morning as within 20 minutes of ingesting the VA he had numerous seizures due to the aspartame used to sweeten.
As of Monday Harrison started the GARD diet and we reduced his Clobozam to 12.5 mgs(from 15mg). The change within 48 hrs was significant. No more drop seizures or tonic events. Today is Friday and as of yesterday we are only seeing very small but somewhat numerous (perhaps 15-20 events over the course of the day) mouth flapping/staring/eye blinking/very slight arm twitch events. There is no question that we have seen a VAST improvement but are wondering why the seizures have morphed into these type events. It almost seems as if the seizures are running out of gas.. The typical pattern seems to be around either waking up or getting tired where these events occur, but not exclusively. I note that in myoclonic astatic epilepsy has a wide variety of seizure types. The problem is we are not entirely certain he has "epilepsy" vs. his brain telling us something that he cannot yet verbalize. These events are VERY brief..perhaps 1 to 3 seconds. He has been waking up earlier than normal and sleeping less during his afternoon nap. In total he is probably missing 2 hrs of sleep compared to his old sleeping schedule.
We have observed that since we introduced the VA his speech development and annunciation has been compromised. Two weeks ago while on Clobozam only, before VA, he was way ahead of most other kids in his language skills. This is a true statement not that of a bragging parent.
We would like to arrest the myoclonic events completely. We know that the Clobozam has some filler with trace amounts of lactose and corn something, but we cannot simply shut down this drug as he needs to step down from it.
Can you please share some of your thoughts on this matter. I could tell you so many interesting observations we have made...including his hiccups that have traditionally been his bodies first way of telling us something is wrong. When he gets the hiccups we feed him and they disappear, in the past we would feed him yogurt etc. and sure enough the hiccups would go away but then on came the seizures. Like his body is telling us something is not right at the intake end.
As stated we want to eliminate the seizures because I have read that prolonged twitches/seizures will interfere with his development. From what I have observed over the last 1.5 days the frequency of these minor events is not alarming.
I could write for another 6 hrs to give you all the details around Harrisons condition, we are a professional couple working from a home office with only one child so we have been very tuned in to what is going on with our son.
We genuinely feel that the GARD diet has had a positive impact but are looking for complete seizure control and a return to Harrisons continued development. I cannot stress how well he has done to date developmentally.
As of yesterday we have taken all dairy out of his diet on Sunday . Down to fresh fruits and veggies only. Allergy tests are scheduled for next week. We dropped the quinoa wich is full of gluten, fresh fruit and maple syrup for breakfast...Harrison had hiccups inside my wifes womb. We noticed his first micro seizure event when he was about 8 months old, it was so brief we thought that his brain was simply connecting wires. No events from 8 months until perhaps 18 months (one more micro seizure) nothing from 18 months until Jan 11, 2010 when he had a true seizure event that we initially wrote off as a fever induced event. Harrison was born on June 14, 2005.
I would like to ween Harrison off the Clobozam and eliminate his seizures. At this point I have no dietery concerns for the first couple of weeks we have him on the GARD program.
We are determined to sort Harrison out. I know that most kids grow out of this condition but I am guessing the normal protocol in the medical community is to "drug" the symptoms until the kids digestive systems mature to a point where foods can be better metabolized.
I have lots more to share on this subject...