tag:blogger.com,1999:blog-7358738169505437539.post6659262523280356324..comments2023-10-20T10:59:02.237-05:00Comments on All 4 Jake: Brandyhttp://www.blogger.com/profile/17197102648319986386noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-7358738169505437539.post-30162527232082033802008-10-08T19:36:00.000-05:002008-10-08T19:36:00.000-05:00Hi,My son Jack starting having what we thought was...Hi,<BR/><BR/>My son Jack starting having what we thought was infantile spasms at the age of 6 months, just 4 days after his 6 month immunizations. I have always thought it was due to the vaccines, but just recently we have found out he has a gene mutation called Dravet Syndrome. He is now 7 & has all types of seizures. His started out really bad (100's daily) just upon waking or after taking a nap too. This is why we thought infantile spasms. We live in North Carolina & have seen a lot of doctors throughout the southeast & are currently seen in Chapel Hill, NC. My son has a Vagal Nerve Stimulator (VNS) this has helped greatly, he is on keppra, topamax, clonazepam, acetazolamid, B6, risperal & concerta for behavior, & fish oil. He was on the Ketogenic Diet for 1 1/2 years without any significant seizures & NO seizure meds. This was by far the best treatment option ever for Jack, but for whatever reason the diet stopped working & Jack's seizures were even worse. He has had literally 100's daily & still continues to have them. Please contact me if you would like to talk or ask any questions. It is hard to find others that are our situation. If you are interested in learning about Dravet Syndrome visit www.idea-league.org<BR/><BR/>Take care,<BR/>Amy Berry<BR/>910-652-2691amy910https://www.blogger.com/profile/17956150996753755561noreply@blogger.comtag:blogger.com,1999:blog-7358738169505437539.post-71271225022545985682008-10-05T16:13:00.000-05:002008-10-05T16:13:00.000-05:00What a beautiful little boy and family. I was giv...What a beautiful little boy and family. I was given your site information by our church prayer team. I pray that you would consider that there is no medical reason for Jake's condition because it is a spiritual condition, just as in Luke 9:37-43. Jesus is the healer and has given us knowledge of how to cure such conditions. The following Christian ministry can relieve your son of these symptoms: www.tlsm.org . Cook's Children Hospital is very familiar with Thurman Scrivner at tlsm.org and could give you a glowing recommendation of his ministry because he has helped many children there. God blessGayleahttps://www.blogger.com/profile/06490552712387252364noreply@blogger.comtag:blogger.com,1999:blog-7358738169505437539.post-72592652473508078902008-09-26T06:58:00.000-05:002008-09-26T06:58:00.000-05:00Hi Christine-I'm Nicole. I met Brandy through anot...Hi Christine-<BR/>I'm Nicole. I met Brandy through another "mom friend" in Tampa. I have a 3 1/2 year old son and when Brandy told me about this site I thought it was a great idea. Unfortunatly, I know others who have been through various difficulties with their children also, and this type of site was an anytime source of venting and comfort for both mom and dad. I hope you find that for yourself also. As I'm sure you know, mom's have a bond no matter if they have never met, and you can be sure I'll be praying for you and your family, checking back on your website,and cheering for Jake!<BR/>Love, NicoleAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-7358738169505437539.post-63895064356679825632008-09-19T17:07:00.000-05:002008-09-19T17:07:00.000-05:00Stay Strong...You, Matt, Addison, and JAKE are doi...Stay Strong...You, Matt, Addison, and JAKE are doing great!!! If anyone can do it, it is you guys. Love All of You, ChadAnonymousnoreply@blogger.com