Welcome to Eddie's Home Page. I'm Eddie's mom, Ellen Sherman.... When my son was seven months old, he was diagnosed with Infantile Spasms (aka, "West Syndrome"). I decided to dedicate this site to Eddie, and other parents of children with I.S. after countless searches on the internet for optimistic cases (this was in the summer of 1997, before the emergence of many new, optimistic websites!). If you are a parent just starting down this road, I wanted to share our story. Eddie's story is one of hope.
Eddie was born in December of 1996. For the first five-six months of his life, he was neurologically and cognitively normal/advanced. He was so alert and bright... He could turn the pages of a book at under 8 weeks of age, he could mimic words like "Granddad", and he would imitate anything I did (i.e., winking, waving, a pincer grasp, etc.). On July 26, 1997, he was admitted to our local hospital for potential seizure activity. Ed (my husband) and I had had some concerns since sometime in May. Before or after periods of sleep, Eddie would drop his head (for only a fraction of a second), as if his neck muscles could not support the weight of his head. Our pediatrician (who had not yet seen an episode), Ed and I dismissed it as probably a "muscular thing" that he would outgrow due to a (fairly) large head and long trunk. However, by the time Eddie was six months old, I noticed that he was not reaching for things anymore, his truncal tone was poor and he seemed to be regressing with all of his skills. By the time he was admitted to the hospital he was listless; he could not roll over or grab anything. Our formerly alert, active and happy baby seemed to have lost all interest in living.
After viewing a videotaped episode of Eddie's seizures, our pediatrician recommended he be transferred to a children's hospital in a nearby city. After a slew of tests (CT scans, an MRI, EEG's, urinalysis, bloodwork, etc.), our pediatric neurologist diagnosed him with idiopathic Infantile Spasms. Apparently, there are two types of this disorder: idiopathic (has no known cause), and symptomatic (i.e., the seizures are caused by a known factor; e.g., tumors, dysplastic brain tissue, etc.). At that time, Eddie's Infantile Spasms fell into the idiopathic variety because the tests he had taken showed no substantial cause for this disorder. He was regressing developmentally because his seizures were generalized, involving the brain stem. So although they were barely detectable, they were causing him to have complete "short-outs", much like constantly rebooting a computer. Our pediatric neurologist suggested we use Corticotropin (ACTH) to stop the seizures.
Eddie started his four-week course of ACTH on July 29, 1997. He was given two shots daily in the thighs (administered by Ed) of .37 cc's of ACTH. It was a rough four weeks! The steroids shot his appetite through the roof (causing him to gain 5 lbs.; 20% additional body weight!), and made him fussy all day long. What used to be our mild-mannered friendly little guy was now a sleepless, colicky fuss-meister. All I can say is thank goodness for our battery-powered infant swing! He was either eating, swinging, or fussing.
Eddie’s had his last shot of ACTH on August 28, 1997. For about six months, he was seizure-free and did a great job of catching up (learned to crawl, climb, walk, and talk). However, on February 20, 1998, Eddie had his first seizure in six months. It presented itself similarly to the spasm that we saw back in July, but an EEG showed no hypsahrrythmia or Infantile Spasms (thankfully); just some abnormal firing on the right side of his brain. We tried several anticonvulsants: Valproic Acid, Tegretol, Klonopin, Vitamin B6, Lamictal, and (in July 1998) the Ketogenic Diet; but none have proven completely effective in stopping the seizures. Eddie's development was comparable to his peers, but the seizures were, understandably, slowing him down a bit. He was still not "obviously different", but a mom always knows....
In mid-September of 1998, Eddie underwent 24-hour EEG surveillance, and had another MRI, in hopes of finding a better diagnosis for his seizures. After capturing some spells on the EEG, the epileptologist detected some abnormal firing on the posterior end of his right frontal lobe, and matched it with a suspected area on the MRI. On September 15, Eddie was (hypothetically) diagnosed with Focal Cortical Dysplasia, which means that when he was developing in utero, some neurons did not migrate properly. We were told that a large percentage of the population has some misdirected neurons, but they don't usually cause seizures. Although still a mystery, we know it was nothing genetic, nothing that I caused during pregnancy; "just a fluke thing", according to the epileptologist. In August of 1999, we believe a PET scan also confirmed this finding, although in Eddie, it is very subtle (other neurologists have said they do not see any abnormality or any dysplasia).
Our February 2001 hospital admission allowed a new door to be opened for him. We were going to administer a second course of ACTH (it's presently on national backorder), and while admitted, have a comparative SPECT scan done. The SPECT revealed a single seizure focus on his right frontal lobe, and he was deemed a good candidate for surgery (50% chance of cure forever!). The surgery is set to begin late in April 2001. Although it was extremely scary, we were so thankful to have this door opened; to have the prospet of saying goodbye to seizures forever! Developmentally, Eddie continued to do well, and was within normal parameters for his age, but he seemed to be "slipping", with his peers developmentally passing him by. So we waited, prayed and hoped....
September 2003 Update:
At long last, I've overcome my superstition of jinxing our healthy home and am ready to trumpet the good news on Eddie's web page.... Eddie was admitted to Shands Hospital (University of Florida) on April 30, 2001. After three craniotomies (2 for grid placement, and one for resection of a small portion of his right frontal lobe), and two long weeks in the hospital, Eddie is 100% seizure-free. He has been this way for over two years! What a miracle it is just to be able to write that. He is developing well, and is so cognitively clear! For years prior to surgery, I used to tell everyone, "ANYTHING but surgery!!!" Now, I wish we'd done it sooner; it's so worth it. Dr. Carney and Dr. Pincus at the University of Florida were such miracle workers.... Eddie is now 6, in typical first grade, and can read and write; he is bright and has a wonderful understanding of words and numbers, thankfully. His handwriting is not the best, but we'll trade the penmanship award for a seizure-free boy! We're currently working on: speech and language processing, his social skills (he's a tiny bit immature, but is liked by his peers and has good friends), ADHD (can be caused specifically by right frontal lobe complex partial seizures), and fine motor skills with the National Academy of Child Development (NACD). Please note: all of the aforementioned issues are the residual effects of intractable seizures, NOT SURGERY. Overall, he's a rambunctious, happy little guy; there's nothing about him that would make him "obviously different" to another person. As his epileptologist said, "there's no reason to believe that he can't have a normal life from this point on; it's just going to take some time for him to catch up". He's an amazing, resilient little guy. I can't say it enough: surgery was so worth it....
Here's Eddie!!! February 2002
Okay, the latest on Eddie is that he continues to do great. He takes meds for ADHD (caused by seizures, NOT surgery), and he goes to speech therapy once a week. He attends typical school, and has some really awesome, loyal friends. It seems surreal just to be able to write that; I thought we'd never get here.
Interestingly, I came across some literature about pediatric vaccines about a year ago. To my horror, I learned that the preservative "Thimerosal" was in Eddie's vaccines. Thimerosal is 49% ethyl mercury, a known neurotoxin. Eddie received somewhere in the neighborhood of 30 times the EPA allowable "safe" level of mercury in his pediatric vaccines. In 1999, the FDA ordered pediatric vaccine manufacturers to remove thimerosal from its products; (the preservative is used so physicians can use multi-dose vials of vaccines instead of having to use single-dose vials).
So my hypothesis is this, which I emailed to Eddie's neurologist: "Thimerosal is 49% ethyl mercury. The FDA does not have enough information on the effects of ethyl mercury on the body, but assumes that it has the same effect as methyl mercury. In toxic levels, methyl mercury can inhibit the pituitary gland's production of ACTH, thereby affecting one's ability to produce cortisol. If Eddie has a pre-existing miniscule metabolic abnormality in his right frontal lobe, could it be hypothesized that the thimerosal that he received in all of his immunizations inhibited his body's production of ACTH and cortisol thereby allowing for breakthrough seizures? You may recall that ACTH stopped his seizures completely in August of 1997. No seizures for 5 months. Then he had his next immunizations (also containing thimerosal) on 1-14-98. He began seizing again in early February 1998. 'Was cured in May 2001 with the triple craniotomy. For methyl mercury, it is known that there is a latency period of weeks or months from the time of exposure to the onset of symptoms.
I'm a COMPLETE proponent of vaccinations; they are miraculous. I'm far from being a neurologist! I have no medical or scientific degrees, so I realize I'm painting with a very broad brush here. But the preservative thimerosal has me wondering if there may be a link here. Data from the polio vaccine suggests that he received over 30 times the FDA recommended "safe" mercury level."
Interesting that autism (1:167 chance!) and other rogue, unexplainable neurological conditions seem to be more prevalant nowadays. Also, pediatric vaccines have quadrupled in the past 20 years. So what I've hypothesized has not been proven in the general population, but it also has not been disproven due to the fact that nobody wants to go up against big pharma. All I know is that Eddie will not be receiving flu vaccines or Hep B vaccines (both still contain thimerosal).
Okay, so enough of my soap-box! Please see the links below for more information on vitamin B6 therapy and the ketogenic diet, which can be quite miraculous. In some ways, I hope that the counter on this page doesn't reflect a lot of traffic. Even though it's hard not to be envious of parents with healthy children, I would not wish the hardships that we experienced over the past four years upon anyone. If Infantile Spasms or intractable seizures has affected someone that you love, my heart goes out to you.... Watching a child have seizures (and feeling powerless to help) truly can be hell on earth for a parent.
I hope that Eddie's story has helped you. If I may be of help, please feel free to email me at
elkt@cox.net
Special thanks to GOD (and our many prayer warriors), Dr. Kerns, Dr. Maria (you never gave up!), Dr. Carney, Dr. Pincus, Dr. Chugani, Debbie Ringdahl, Christina McClernan, all of the MISC moms (esp. Amy and Chris!), our family and friends, and Kathy and Mary Ann for your empathy and encouragement. --9-17-03
Need a laugh through all of this? Click here for some empathy humor ("empatherapy"); it will lift your spirits!
Sadly, Geocities altered their Guestbook format to a far inferior one; I've not used the new guestbook format because it is too cumbersome, and never does what I want! But, if you'd like to see all the folks who've stopped by since September of 1997, free to View Eddie's Guestbook
Check out these other West Syndrome ("Infantile Spasms") links:
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