Guest guest Posted January 4, 2004 Report Share Posted January 4, 2004 I am actually writing from ish Rite where we are back for a third time with Abby. Yesterday she had 49 seizures and her level was almost 33% with pheno. She'd had 3 doses of 120 mg in addition to her normal 15 mg in the a.m. and her 375 mg a.m./p.m. does of Keppra . She can't even hold her head up today and they are wanting to now add topamax to the mix. I just rpinted out the info here about Topamax and the keto diet and we'll be talking with our doctor soon as her dose sits on the table in the room. How far do you go with trying all these meds? How much can her little body take? SHe is now also getting round the clock doses of adavan and continues to seize. So frustrating. Has anyone out there gone through 5 or more meds and then boom.. one worked? Dawn, Abby's mom > > Hello to all, > > How comforting to know there are people/mothers out there that I > can talk to about the craziness of what we are going through. > > My name is Dawn Sullivan and my husband and I adopted our precious > Abby Grace from Kazakhstan 8 months ago. Sadly, in November it > became very obvious to us that something was really wrong and Abby > starting having many seizures a day. After two stay in the hospital, > attempted use of Trileptol, Dilantin, Keppra, Depakote (kon), two > allergic reactions, and several set backs, we are in our second week > of the Keto diet (in addition to using Keppra). Abby only showed two > days of improvment and has gone back to averaging over 20 seizures a > day. She has semi-paralysis on her right side and is very weak. > > So my questions are 1) how long were you on the diet before you > saw some results/improvement? 2) how many of you have tried other > things that have helped or been successful? 3) How do you keep your > sanity when you watch your child suffer and get worse everyday? > > We seem to be getting closer and closer to brain surgery and I'd > also be interested in anyone who has had success with that. > > Thank you so much. I was/am so excited to see others out there > dealing with the same fears, frustrations, and discouragement that we > deal with daily. I look forward to hearing from you. > > Dawn > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2004 Report Share Posted January 4, 2004 We went through 20 different meds and none worked. Wyaema stayed in the hospital for four months andn they kept her so sadated that she could not do a thing. She has been on the diet since March and we have just become 8 weeks seizure free. If I would have known about the deit I would not have tried all the emds first. She is 15 months old and so developmentally behind cause of all the meds. I personally would not wait any longer, I would start the diet. It is not fair to put our kids through all of that. Kristi Kristi Mann Smile make everyone wonder what your thinking May God Bless you today, tomorrow and always Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2004 Report Share Posted January 4, 2004 > Dawn, > > After 1 med worked for about 5 years we went through 3 meds and then went > for the diet. I wish we had skipped the 3 meds and did the diet first. I COULDN'T AGREE MORE. I THINK AFTER TWO MEDS FAIL, IT'S TIME TO AT LEAST CONSIDER TRYING THE DIET. Our > neuro said that if one med does not work then there is less chance with each > subsequent med tried. As each med failed we sought to have our daughter put > on the diet (neuro had said our daughter was a poor candidate for the diet > due to age and seizure type…..was he ever wrong!!!!!!!). UNBELIEVABLE HE WOULD SAY THAT.... ESPECIALLY, WHEN SHAN HAS DONE SO WELL. OUR CHILD NEURO WAS IN FAVOR OF OUR TRYING THE DIET, ONCE WE BROUGNT IT UP, BUT HE DID WARN US THAT IT WAS HARD, NOT VERY SUCCESSFUL, ETC. ETC. WE HAD A CLEAR EEG 8 WKS. AFTER STARTING THE DIET... HE'S CHANGED HIS TUNE A BIT, TOO. EVERYONE WHO WAS AROUND OUR DAUGHTER LAST YEAR IS AMAZED BY THE RESULTS. Our goal is to > give our daughter the best quality of life possible and the meds were > definitely hindering her life. We came to the conclusion that the diet with > little meds and some seizures was a better quality of life then the side > effects of drugs and some seizures. We were so much at the " mercy " of the > neuro when we were treating with drugs. As soon as our daughter went on the > diet we had a positive tool that we as parents could work on with all our > might to try and reduce the seizures and give our daughter a better life. YES, INDEED!!! > We learned all we could (continue to learn), sought help from this group, > and relied on ourselves (and God) to make the diet work. For almost 2 years > we have been in control of our daughter and have only reported to the neuro > on a regular basis what was happening. The neuro and keto team became > resources but no longer had the control over our daughter that meds gave > them. We now had hands on control and finally felt like we were really > doing something for our daughter. ANOTHER YES, INDEED!! One more thought, the ketogenic diet is a > powerful med in itself. Out of all the meds out there it seems to have the > highest rate of success. If a person were trying the ketogenic diet after 5 > meds then I would say " yes " there is a drug out there that gives a child > dignity, hope, and improved quality of life that has worked for many after > trying numerous meds. Aside from the diet, I have not yet heard of any > drugs out there that finally worked after many trials…..especially one that > equals the positive results that the diet is giving many. I HAVE TO SAY THAT DRUG NUMBER 5, FELBATOL, HELPED THE SEIZURES IMMENSELY, BUT AT A GREAT COST TO COGNITIVE ABILITY. AND, CONTROL WASN'T COMPLETE. OUR REAL DAUGHTER CAME BACK TO US WHEN WE STARTED THE DIET... NO MEDS AND NO SEIZURES. I KNOW IT DOESN'T HAPPEN THAT WAY FOR EVERYONE, BUT IT'S SOOOOO WORTH A TRY. > > Rhonda (mom to Shan, age 8, ketokid 23 months) > CAMMIE (IN CAPS) > > > * I am actually writing from ish Rite where we are back for a > third time with Abby. Yesterday she had 49 seizures and her > level was almost 33% with pheno. She'd had 3 doses of 120 mg in > addition to her normal 15 mg in the a.m. and her 375 mg a.m./p.m. > does of Keppra . She can't even hold her head up today and they are > wanting to now add topamax to the mix. I just rpinted out the info > here about Topamax and the keto diet and we'll be talking with our > doctor soon as her dose sits on the table in the room. How far do > you go with trying all these meds? How much can her little body > take? SHe is now also getting round the clock doses of adavan and > continues to seize. > So frustrating. Has anyone out there gone through 5 or more meds > and then boom.. one worked? > Dawn, Abby's mom > . > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2004 Report Share Posted January 4, 2004 > Dawn, > > After 1 med worked for about 5 years we went through 3 meds and then went > for the diet. I wish we had skipped the 3 meds and did the diet first. I COULDN'T AGREE MORE. I THINK AFTER TWO MEDS FAIL, IT'S TIME TO AT LEAST CONSIDER TRYING THE DIET. Our > neuro said that if one med does not work then there is less chance with each > subsequent med tried. As each med failed we sought to have our daughter put > on the diet (neuro had said our daughter was a poor candidate for the diet > due to age and seizure type…..was he ever wrong!!!!!!!). UNBELIEVABLE HE WOULD SAY THAT.... ESPECIALLY, WHEN SHAN HAS DONE SO WELL. OUR CHILD NEURO WAS IN FAVOR OF OUR TRYING THE DIET, ONCE WE BROUGNT IT UP, BUT HE DID WARN US THAT IT WAS HARD, NOT VERY SUCCESSFUL, ETC. ETC. WE HAD A CLEAR EEG 8 WKS. AFTER STARTING THE DIET... HE'S CHANGED HIS TUNE A BIT, TOO. EVERYONE WHO WAS AROUND OUR DAUGHTER LAST YEAR IS AMAZED BY THE RESULTS. Our goal is to > give our daughter the best quality of life possible and the meds were > definitely hindering her life. We came to the conclusion that the diet with > little meds and some seizures was a better quality of life then the side > effects of drugs and some seizures. We were so much at the " mercy " of the > neuro when we were treating with drugs. As soon as our daughter went on the > diet we had a positive tool that we as parents could work on with all our > might to try and reduce the seizures and give our daughter a better life. YES, INDEED!!! > We learned all we could (continue to learn), sought help from this group, > and relied on ourselves (and God) to make the diet work. For almost 2 years > we have been in control of our daughter and have only reported to the neuro > on a regular basis what was happening. The neuro and keto team became > resources but no longer had the control over our daughter that meds gave > them. We now had hands on control and finally felt like we were really > doing something for our daughter. ANOTHER YES, INDEED!! One more thought, the ketogenic diet is a > powerful med in itself. Out of all the meds out there it seems to have the > highest rate of success. If a person were trying the ketogenic diet after 5 > meds then I would say " yes " there is a drug out there that gives a child > dignity, hope, and improved quality of life that has worked for many after > trying numerous meds. Aside from the diet, I have not yet heard of any > drugs out there that finally worked after many trials…..especially one that > equals the positive results that the diet is giving many. I HAVE TO SAY THAT DRUG NUMBER 5, FELBATOL, HELPED THE SEIZURES IMMENSELY, BUT AT A GREAT COST TO COGNITIVE ABILITY. AND, CONTROL WASN'T COMPLETE. OUR REAL DAUGHTER CAME BACK TO US WHEN WE STARTED THE DIET... NO MEDS AND NO SEIZURES. I KNOW IT DOESN'T HAPPEN THAT WAY FOR EVERYONE, BUT IT'S SOOOOO WORTH A TRY. > > Rhonda (mom to Shan, age 8, ketokid 23 months) > CAMMIE (IN CAPS) > > > * I am actually writing from ish Rite where we are back for a > third time with Abby. Yesterday she had 49 seizures and her > level was almost 33% with pheno. She'd had 3 doses of 120 mg in > addition to her normal 15 mg in the a.m. and her 375 mg a.m./p.m. > does of Keppra . She can't even hold her head up today and they are > wanting to now add topamax to the mix. I just rpinted out the info > here about Topamax and the keto diet and we'll be talking with our > doctor soon as her dose sits on the table in the room. How far do > you go with trying all these meds? How much can her little body > take? SHe is now also getting round the clock doses of adavan and > continues to seize. > So frustrating. Has anyone out there gone through 5 or more meds > and then boom.. one worked? > Dawn, Abby's mom > . > > > Quote Link to comment Share on other sites More sharing options...
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