Guest guest Posted July 10, 2010 Report Share Posted July 10, 2010 Sharon, I am so sorry and have been in your shoes with a child seizing out of control. The neurologist at the time suspected Lennox-Gastaut epilepsy in our son (due to his having several different types of seizures). It was horrible. We were to the point where he had to wear a helmet with a plexiglass face protector, which he despised. The link is here if you need it... https://danmarproducts.c7.ixwebhosting.com/index.cfm?pageSRC=productDisplay & dmproductID=90 One thought that comes to mind is to be absolutely sure that Dr. G has your child¹s correct weight and double check with Dr. G that he is on the optimal dose for that weight. At one point early on, we feared that the antiviral (I think it was Famvir) was making our son¹s seizures worse and Dr. G switched to a different antiviral (Zovirax). He¹s kept him on Zovirax ever since (about 6 years). It may not have been the other antiviral that made our son¹s seizures worse... there were so many other variables and he had such a huge initial improvement on the Valtrex cognitively that I have always wondered. God bless, Caroline G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2010 Report Share Posted July 10, 2010 Hi Sharon,  I am sorry to hear about your son's seizures. I follow this list and my boys are on the diet but we do not see Dr. Goldberg. I wish we did. My children have a regular pediatrician and a neurologist and a biomed doctor on the side. My oldest son has excessive candidas yeast and his pediatrician will not even treat it. My biomed doctor is rather conservative and just wants to use probiotics to reduce the yeast. He is now suffering from severe constipation and I have been giving him mineral oil and miralax to clean him out. He is a total mess. He has absence seizures and is very violent when he needs to make a bowel movement. He had 4 grand mal seizurs in 2008/2009 but they stopped after I removed the TV's. The keppra/lamictal combination did not help but he is still on it. Ironically, his absence seizures got worse after he started the antiseizure meds. I wish I could help you but my son is not even close to having his absence seizures under control. I hope others here can help you. Several parents here had children that suffered from seizures and they are now under control after seeing Dr. Goldberg. The reason I am sharing this is because " mainstream " doctors only follow a certain protocol and antivirals is not one of them. My son is still suffering from seizures and he is not taking any antivirals so I personally do not think it the antivirals that is causing your son's seizures. Is your son verbal? Does he complain about any part of his body hurting? My son is somewhat verbal but I had no idea how constipated he was until I demanded the pediatrician to find out what the heck is wrong with him because his behaviours increased 10 fold over the last 2 months. They then ordered X-rays and sure enough, he was severely constipated. I might add that I am going to start the GFCF diet to see if that will help in getting my son's bowels in order. My son has been having bowel movements now (but he is still not close to having it cleaned out) and he is finally sleeping and behaving a lot better. Over the last several weeks, he would not even go to sleep until 5:30 or 7:30 am. It was a total mess.  All the best,   Jill From: sharon@... <sharon@...> Subject: Seizures Date: Tuesday, July 6, 2010, 8:09 AM  Hi All, Dr Goldberg has been treating our son for 10 years. He is now 13. In the last year and a half he has been having seizures that are getting progressively worse & we are unable to get them under control. Our local pediatrician & neurologist are insisting we discontinue the antiv viral (currently Famvir). She is concerned that the anti viral could be triggering the seizures. Dr G has repeatedly pleaded with us not to do this as he says the results would be " disastrous " . We are feeling extremely pressurized by our neurologist. He is having daily seizures & this is having a devastating effect on him & our whole family. Any advice on this would be appreciated Regards Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2010 Report Share Posted July 11, 2010 Our son had seizures but is taking keppra & thankfully has been seizure free since. He also takes famivir & has since we started with dr. Goldberg 4 years ago. Best wishes for your son's health. Seizures are always scary & I'm sorry you all are struggling with them. Sent from my iPhone On Jul 6, 2010, at 7:09 AM, <sharon@...> wrote: Hi All, Dr Goldberg has been treating our son for 10 years. He is now 13. In the last year and a half he has been having seizures that are getting progressively worse & we are unable to get them under control. Our local pediatrician & neurologist are insisting we discontinue the antiv viral (currently Famvir). She is concerned that the anti viral could be triggering the seizures. Dr G has repeatedly pleaded with us not to do this as he says the results would be " disastrous " . We are feeling extremely pressurized by our neurologist. He is having daily seizures & this is having a devastating effect on him & our whole family. Any advice on this would be appreciated Regards Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2010 Report Share Posted July 11, 2010 One neurologist told us that my son had a 50% chance of having seizures around the age of 5 and/or puberty. He wound up getting them at age 6. We have been using Keppra and he has only had one breakthrough seizure since starting the drug. We also have liquid valium on hand that we used to use if he was getting a fever (he tended to have febrile seizures) and we have used when we had that funny feeling that he might have one. Is he on any meds for the seizures? Have you considered the Ketogenic diet? I have a friend who did this with some success as her child was having 100¹s per day. Seizures are very scary, but they could also be triggered by a viral response too. Laureen On 7/11/10 7:32 AM, " " <thehacks@...> wrote: > > > > > > Our son had seizures but is taking keppra & thankfully has been seizure free > since. He also takes famivir & has since we started with dr. Goldberg 4 years > ago. Best wishes for your son's health. Seizures are always scary & I'm sorry > you all are struggling with them. > > Sent from my iPhone > > On Jul 6, 2010, at 7:09 AM, <sharon@... > <mailto:sharon%40singerphoto.co.za> > wrote: > > Hi All, > > Dr Goldberg has been treating our son for 10 years. He is now 13. In > the last year and a half he has been having seizures that are getting > progressively worse & we are unable to get them under control. Our local > pediatrician & neurologist are insisting we discontinue the antiv viral > (currently Famvir). She is concerned that the anti viral could be > triggering the seizures. > > Dr G has repeatedly pleaded with us not to do this as he says the results > would be " disastrous " . > > We are feeling extremely pressurized by our neurologist. He is having daily > seizures & this is having a devastating effect on him & our whole family. > > Any advice on this would be appreciated > > Regards > > Sharon > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2010 Report Share Posted July 13, 2010 If in doubt, I personally would choose Dr G's side, because he has been right so many times .... but I'd ask him if we could change to a different antiviral? ________________________________ From: " sharon@... " <sharon@...> Sent: Tue, July 6, 2010 7:09:31 AM Subject: Seizures  Hi All, Dr Goldberg has been treating our son for 10 years. He is now 13. In the last year and a half he has been having seizures that are getting progressively worse & we are unable to get them under control. Our local pediatrician & neurologist are insisting we discontinue the antiv viral (currently Famvir). She is concerned that the anti viral could be triggering the seizures. Dr G has repeatedly pleaded with us not to do this as he says the results would be " disastrous " . We are feeling extremely pressurized by our neurologist. He is having daily seizures & this is having a devastating effect on him & our whole family. Any advice on this would be appreciated Regards Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2010 Report Share Posted July 14, 2010 Hi Sharon-I agree that Dr. Goldberg is always right about meds! My son also has had seizures and he is being treated by a neurologist with the med Keppra. He has been seizure free for years now, is taking antivirals, and doing very well. Hope this helps. Gayle Seizures Hi All, Dr Goldberg has been treating our son for 10 years. He is now 13. In the last year and a half he has been having seizures that are getting progressively worse & we are unable to get them under control. Our local pediatrician & neurologist are insisting we discontinue the antiv viral (currently Famvir). She is concerned that the anti viral could be triggering the seizures. Dr G has repeatedly pleaded with us not to do this as he says the results would be " disastrous " . We are feeling extremely pressurized by our neurologist. He is having daily seizures & this is having a devastating effect on him & our whole family. Any advice on this would be appreciated Regards Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2010 Report Share Posted July 19, 2010 I would like to ask everyone if their child suffered from seizures and, if so, what if anything made the seizures stop? I personally believe my son has seizures but they have not been spotted on EEG. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2010 Report Share Posted July 26, 2010 My son had silent seizures and one grand mal. They stopped with Valtrex. Kristy Nardini TazziniTM Stainless Steel Bottles <http://www.tazzini.com/> http://www.tazzini.com kristy@... Phone: 858.243.1929 Fax: 858.724.1418 P Please consider the environment before printing this email. From: [mailto: ] On Behalf Of and Freeman Sent: Monday, July 19, 2010 3:42 PM Subject: Seizures I would like to ask everyone if their child suffered from seizures and, if so, what if anything made the seizures stop? I personally believe my son has seizures but they have not been spotted on EEG. Quote Link to comment Share on other sites More sharing options...
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