UPDATE ON OUR LITTLE ANGLE MISTY HOPE First of all I want to thank the Carters Center for all their support and Valuable information that they have provided for all of us who have shared our stories of Love, Hope, Understanding, prayers and tragity that is associated with HPE. When we first became aware of Carters, There were only few family posts. and I am amazed @ the numerous amount of growth, I want every one who reads this to know that they are in our thoughts and prayers... Shortly after our first post Misty started having partial on set seizures. At the time when she started experiencing her seizures we really wasent sure what was going on. They werent what I would have exspected a seizure to actually be... She would just close her eyes with her little fist clinched and her head would start to pull foward, (keep in mind she still has no head control, nor trunk control, nor has she spoken much but lil coos and babbles that sound just like mama,) Yet when she took a spell with these seizures it was as if her neck would stiffen in such a way that her head did have somewhat of control. this firt day i noticed her (What i call drawing up) I had no clue they were in fact seizures, it seemed as if they were accuring every 30 minutes or so so i called or Scottish Rite Cildrens Hospital and made plans and took her right away. After a few test they determind they were in fact seizures. She was perscribed Topamax 15 mg sprinkle capsules and they have been controled with this med hereafter. When she takes these spells, I have learned that LIGHT WILL INDUCE THEM and have noticed that she will only have them while she is INCLINED somewhat while LYING ON HER BACK. YET WILL IMMEDIATLY STOP WHEN SHE IS LAID ON HER TUMMY IN A DIM LIGHT AREA. I HOPE THIS TIP WILL HELP OTHERS ON HOW TO MAKE YOUR CHILD COME OUT OF A SEIZURE.She is now 5 yrs old and will be 6 on march 20th 2005. She has had several SPELLS since she started this med but with a small increase of her med (which is taken on a daily basis) she's fine.. She still has to take Dessmopreson (DDAVP for short) to control her (DI) Diabetes Insipodus. (Which is a form of diabetes that effects her sodium levels instead of the most common sugar diabetes.) She eats very well purree foods of course. Really my biggest concerns now are her size, she only weighs about 18 lbs and 3 ft in length which is shocking when you concider how much this child eats... Her personality is still so angelic, she is the most happy child you have ever seen.. she is so loving, energetic, so full of life. She is truly the biggest blessing God has ever given into me. I love this child with all of my heart soul and stength and you can bet her mommy is the apple of her eye as well... I want to wish everyone the best of luck with their families and hope that someone can benifit from my post. For I have reeped much from the numerous posts here @ carters. Lets all share our hopes, dreams, prayers, fears, and tears and remeber that so much can be gained in a kneel of your knees and crying out your heart to Our Heavenly Father who watches over us all. I do not know what the future holds in store for my family nor yours, but no matter what, I will cherish every minute of every day that I may have, with my little Misty Hope! God Bless You All..