Guest guest Posted September 23, 2003 Report Share Posted September 23, 2003 peteymedic1 wrote: > Barbara, > Hi. Hang in there the diet sounds to me like it needs fine tuning. We > were told by a pediatrician in the ER that depakote did not need to > be weaned off. I would disagree with the dr, as I know many would here. All AEDs need to be slowly weaned and any can cause withdrawl seizures although some are more known for it than others Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2003 Report Share Posted November 4, 2003 , How wonderful that you are weaning off the drugs. We saw nothing but improvement when we weaned... we did the depakote first, then the felbatol. Depakote caused moodiness and emotional control problems in our daughter, though, so it makes sense to me that it could be causing ' behavior. Withdrawal of drugs does strange things, sometimes. But the end result will be worth it (I hope!) It could also be the " three year old " thing, too. We sailed through the twos but had " terrible threes " . Our daughter could have earned a master's degree in drama when she was between three and four and a half. So glad he's having fewer seizures. What a wonderful feeling that is. Like you, I have never heard or read that it is advisable to increase meds. while on the diet. I've said this many times before, but our keto team is very agressive about getting off meds. They firmly believe that is the only way to see what the diet will or won't do for the patient. I have to admit it is scary, but it's what our goal really was, too. They have a good success rate... and we are so happy to be part of it. How sad for that child not to have had the opportunity to give the diet a good try. Even when you start a med or switch meds, you have to give it much longer than one week before making any changes, right? I wish you continued success as you decrease meds. I am sure you will see continued cognitive growth in the weeks ahead. Cammie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2003 Report Share Posted November 6, 2003 Wow! That is just uncanny...You have described TomTom to a TomTom " T! " That is exactly how he acts. It is generally around 5PM when he begins to throw his tantrums. Nothing, but nothing, consoles him. He usually cries it out in bed, however; a few nights ago my wife was able to rock him through his tantrum and I was able to do so this evening. It is so tough to hear him cry and just feel helpless. TomTom also grits his teeth when he's upset and that just adds to that feeling. So I'm now officially a member of the club huh? What do we call this club? " The Whiney Weaners! " Uh...guess that wouldn't work...would it? Or how about this...the Depa-dopes! Nah...that's not good either. We'll come up with something. As for telling our Neuro...we haven't mentioned it either. ly, I was afraid if I did, he would stop the wean. And since we were the only ones in pain during his tantrums, it didn't seem right to risk it. As you say, " This Too Shall Pass! " Funny thing was I wanted to hear what this group had to say before I wanted to hear from our Neuro. Not that I don't trust him...he's been great...but there is just way too much experience in here to ignore and this converstation just verifies that belief. Thanks so much! TomTom's Daddy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2003 Report Share Posted November 7, 2003 " B. Combs " wrote: > Wow! That is just uncanny...You have described TomTom to a TomTom > " T! " That is exactly how he acts. It is generally around 5PM when he > > begins to throw his tantrums. Nothing, but nothing, consoles him. He > > usually cries it out in bed, however; a few nights ago my wife was > able to rock him through his tantrum and I was able to do so this > evening. It is so tough to hear him cry and just feel helpless. > TomTom also grits his teeth when he's upset and that just adds to that > > feeling. Well, if nothing else its good to know that you and your family are not alone in going through this > So I'm now officially a member of the club huh? What do we call this > club? " The Whiney Weaners! " Uh...guess that wouldn't work...would > it? Or how about this...the Depa-dopes! Not bad actually.......some of my friends call depakote - depcrap > Nah...that's not good > either. We'll come up with something. How about the We survived the Monster Wean Club > As for telling our Neuro...we haven't mentioned it either. ly, I > > was afraid if I did, he would stop the wean. And since we were the > only ones in pain during his tantrums, it didn't seem right to risk > it. As you say, " This Too Shall Pass! " Funny thing was I wanted to > hear what this group had to say before I wanted to hear from our > Neuro. Not that I don't trust him...he's been great...but there is > just way too much experience in here to ignore and this converstation > just verifies that belief. > > Thanks so much! No problem, hope it helps to know that others have been there. And you're absoloutely right, this list has way more experience than most (if not all) neuros doing the diet. We have beeing doing the diet almost six years and I know we never ever would have lasted this long with the keto lists Quote Link to comment Share on other sites More sharing options...
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