tag:blogger.com,1999:blog-6645130.post113054465347725200..comments2023-07-02T11:59:05.334-07:00Comments on Jenelle's Journey: Kellyhttp://www.blogger.com/profile/17256371707801041596noreply@blogger.comBlogger3125tag:blogger.com,1999:blog-6645130.post-40496709543322466032008-05-28T02:54:00.000-07:002008-05-28T02:54:00.000-07:00Hi janelle's mommy. I'm joshua's mommy. And a qu...Hi janelle's mommy. I'm joshua's mommy. And a quick look tells me that we have some things in common. Joshua too started with IS and I think he now has LGS (his Dr isn't sure what he has). I hope Janelle is healthy and happy. I hope you are too. Too often we forget to take care of ourselves in this crazy world.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6645130.post-1148007179842273992006-05-18T19:52:00.000-07:002006-05-18T19:52:00.000-07:00Hi Kelly! I found your site when looking for some...Hi Kelly!<BR/> I found your site when looking for some information on LGS for my daughter's teacher. I wanted to share my daughter's story and would love to talk/email you!! Haily is going to be 11 in June and doing so well!! Here is her story:<BR/>Haily Jo Krause was born on June 28, 1995 at a whopping 7 pounds 10 ounces. Despite a little jaundice, she was the picture of health. She was also the happiest baby, always smiling. She slept very well, loved everyone and everything and was content in any situation. She was more than a mother could ask for.<BR/><BR/> However, the joyful times would soon come to an end. At the very young age of 6 months old, Haily suffered her first absence seizure. Though, at that time, Doctors thought it might be simply infantile spasms that she would outgrow. This, for quite a few months, seemed to be the case. All the tests that were completed came back normal and long term monitoring was the same. It appeared it was just “One of those things”.<BR/><BR/> However, by the time Haily reached 15 months old, the seizures had returned, and it seemed they were making up for lost time. She began having 2 to 5 Tonic-Clonic seizures daily, not too mention that the absence seizures were also back. This tiny little body was being controlled by seizures, and there didn’t seem to be anything we could do. <BR/><BR/> After the first initial Emergency Room visits to Children’s Hospital, it was suggested that Haily begin seeing a neurologist. We scheduled the first appointment immediately and Haily was put on Phenobarbital, after unsuccessful use of Dylantin.<BR/><BR/> For a while the Phenobarbital seemed to work. Every once and a while Haily would have an absence seizure, but it never seemed to debilitate her. She was functioning at a normal 1-½ -2 year-old level and was the happy child that she had always been. Yet again, things seemed to looking up. <BR/><BR/> Unfortunately, that was not the case. By the age of 2, Haily’s seizures had returned once again and this time, more severe, more frequent, and more seizure variances. She was now suffering with not only the Tonic-Clonic and Absence seizures, but now she was experiencing Myoclonic, A-Tonic, Simple Partial, Complex Partial and on and on. She was seizing anywhere from 4 to 400 seizures a day in various forms and severity. Her breathing would stop, her muscles would give out, and she would be in a comatose state almost all the time. It was back to the Neurology clinic for some help. <BR/><BR/> It was at that time that we were told that Haily had what was called Intractable Epilepsy. Furthermore, Haily was also diagnosed with Lennox Gastaut Syndrome, which, upon research, gave us little hope that she would ever have a “normal” life. What’s more, Haily was no longer progressing developmentally. Between the seizures and the many, many, medications, her poor little brain just could not keep up. She had taken one medication after another, tried a steroidal injection, got the Vagal Nerve Stimulator implanted-twice (due to a defective device the first time), and then repeated medications once again. <BR/><BR/> This was a cycle that was repeated for the next four and a half years. Her developmental level remained at the 2-year mark, though physically she was 6. I wracked my brain trying to think what could help my little girl. I came across the drug Lamictal, one that was tried before, but Haily developed an allergic reaction to. It turned out that pushing the medication too fast caused the reaction. It was a risk to try it again, but with all the findings on its effect with Lennox Gastaut, I felt it was our only option.<BR/><BR/>It was in 2002, when Haily was about to turn seven, when we met Dr. Mary Zupanc, the Doctor that would change Haily’s life. Upon our meeting her she asked what we would like to do to treat the seizures. I told her all I wanted was Haily to have a quality of life that she had not ever had before and with the many medications, that didn’t seem to be an option. I wanted to strip the 3 medications that Haily was currently taking and start from scratch with Lamictal. Surprisingly, Dr. Zupanc agreed and in August 2002, Haily was admitted to Children’s Hospital for long term monitoring and removal of medications. <BR/><BR/>That was a little more than 3 1/2 years ago and now and I am proud to report that Haily has not suffered any seizures, except A-Tonic, which is a vast improvement. Additionally, Haily has gained enormous strides in her development and is currently at a 4 year old level developmentally, further in such areas as social development.<BR/><BR/>Someone once said to me, after hearing Haily’s story, that she felt so bad for me. “Me” I asked. “Don’t feel bad for me, I am not fighting seizures off daily or traveling this horribly painful journey”. I have been blessed with an angel who came into this world with a smile and never questions why children don’t want to play with her or curse the world for her struggles. I have a child who loves life and all people in it and that is what a true miracle is, My Haily Jo”.<BR/><BR/>Though Haily is doing much better than she is suppose to be doing...much like you..we'll take it!! She is now reading some words and working on math!! Miracles DO happen!!<BR/>I'd love to hear from you!! <BR/>Kari <BR/>mojo-mommy@wi.rr.comAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-6645130.post-1130939034393435762005-11-02T05:43:00.000-08:002005-11-02T05:43:00.000-08:00Hi, I found your blog through another blog when yo...Hi, I found your blog through another blog when you wrote about how Jenelle's epilepsy has changed your life. I just wanted to write to say that my fiancee and my best friend both have epilepsy. My fiancee's epilepsy is completely controlled, but my friend's is not, and never will be. She will never drive a car.<BR/><BR/>I think it is great that you keep this site so other people whose children have the same disability as Jenelle can find it and take hope. I wish you all the best, and just wanted to let you know that I appreciate the sentiment that awareness of epilepsy should be spread.Anonymousnoreply@blogger.com