Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Wonderful to hear about the very few seizures....that's great news. The SCD sounds like the right thing for her. Just a quick note about the Keppra, which you may remember I posted a while back....my neuro is using B6 along with Keppra and has found that in some kids it seems to lessen the behavioral (i.e. irritability) side effects. It didn't work for Jake, but it has worked for others in her practice. Might be worth trying if you're not already taking it. How is seizure control compared to keto control? Isn't that interesting.... Barb Swoyer, Jake's mom Katera update Hi everyone.... Just thought I'd pop in to say hello to anyone here who might remember us. Katera has done really well on the SCD diet, better than our last year of keto when breakthroughs were creeping back to the tune of two or three a month. She started SCD in April, immediately went 10 weeks seizure free, had one.... then went FIVE MONTHS seizure free (no meds). Then came November and the flu... UGH. She had three T-Cs that month... all pretty prolonged and requiring Diastat. I was given the option of going back to Keto, but frankly I couldn't see that being a very good option as she had not done well in the last six months particularly, despite being in solid ketosis, between 80 and 160 the whole time, while only at a 2:1 ratio. I decided to opt for trying Keppra, since that is one we've never tried before. She went on it December 20th and we've seen no seizures since.... but I won't know for sure until it's been many months, since we are staying on SCD, too (I just think it's a super healthy diet and will probably stay close to this way of eating indefinitely... I'm on it, too and have lost 20 lbs. ). Keppra is making her very irritable, but otherwise she seems fine. I can only hope that this side effect might fade over time, since she's only been at the full dose for one week now. Cheers, Patti, mom to Katera, age 7... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Patti... Great to hear from you. Sounds like November was rough! Glad to hear things have leveled back out and she's back on track. Sev was CRANKY on Keppra as well. Cried a lot at night from what I remember. Hopefully it will fade...we didn't stay on it long since we got NO control and lots of crankiness. Hugs...Nan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Patti wrote: > Keppra is > making her very irritable, but otherwise she seems fine. I can only > hope that this side effect might fade over time, since she's only > been at the full dose for one week now. Hi Patty Good to see you again....and great to hear Katera has done so well! About the keppra, we just started Jess on it Dec. 4 and when we got to full dose (1000 mg) I was at wits end with her beaviour, after two weeks I called neuro to complain and he asked me to hang on a little longer. Within a few days of phone call she settled a lot, not to where she was pre-Keppra but certainly not bad. So hang in there.....perhaps it was the magic of the phone call LOL but neuro said they say kids tend to settle within three or four months.....although he also stated that it might just be that parents and others get use to the behaviour by then ) good luck , 's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Hi Barb.... I miss all of you guys. There are so few seizure kids over at the SCD list ..... you all know exactly how it feels so this feels like " home " . (Gee, I don't know... maybe that's kinda sad.) Anyway, like I said, Katera's last year on Keto she was having about two or three seizures per month..... some were just partials, some generalized on from there. No matter what we did.... cut calories, increased ratio, protein slant, no protein slant, dairy/no dairy, etc.... we tried it all..... nothing seemed to change. She was always in ketosis.... usually 160+ ketones, even on a low, low ratio..... and I just couldn't knock them back. I took her off the Keto diet in January last year and just stayed on the same types of foods..... just not weighing, and much less fat. She actually stayed in ketosis for quite a while.... and interestinly enough, from Januray through April, we had the same seizure pattern. No change at all. You can imagine my surprise when I put her on the SCD in April (after Diller suggested it).... and she immediately went a full month seizure free.... then 5 weeks, then 6 weeks, then 7..... I felt the whole time like I was waiting for the " other shoe " to drop...... she went a full ten weeks seizure free, then just had one ....... then five full months after that. So there really had to be some element of gut healing that was needing to happen for her... and SCD helped immediately. I think the flu virus this year was just too much for her..... and who knows? We might have been seizure free right now despite the Keppra...... but ya know, there is only so much stress a stressed-out mom can take. I was so sad to be putting her back on a med after four years of none....... but, we'll see. Good to hear from you .... Patti, mom to Katera Re: Katera update Wonderful to hear about the very few seizures....that's great news. The SCD sounds like the right thing for her. Just a quick note about the Keppra, which you may remember I posted a while back....my neuro is using B6 along with Keppra and has found that in some kids it seems to lessen the behavioral (i.e. irritability) side effects. It didn't work for Jake, but it has worked for others in her practice. Might be worth trying if you're not already taking it. How is seizure control compared to keto control? Isn't that interesting.... Barb Swoyer, Jake's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Hi Nan...... I've been thinking of you and Sev...... I'll write you privately later today. You'll be shocked to hear I'm putting Katera in school next fall. Patti ----- Original Message ----- Patti... Great to hear from you. Sounds like November was rough! Glad to hear things have leveled back out and she's back on track. Sev was CRANKY on Keppra as well. Cried a lot at night from what I remember. Hopefully it will fade...we didn't stay on it long since we got NO control and lots of crankiness. Hugs...Nan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 > > > Keppra is > > making her very irritable, but otherwise she seems fine. I can only > > hope that this side effect might fade over time, since she's only > > been at the full dose for one week now. > > Hi Patty > Good to see you again....and great to hear Katera has done so well! > About the keppra, we just started Jess on it Dec. 4 and when we got to > full dose (1000 mg) I was at wits end with her beaviour, after two weeks > I called neuro to complain and he asked me to hang on a little longer. > Within a few days of phone call she settled a lot, not to where she was > pre-Keppra but certainly not bad. So hang in there.....perhaps it was > the magic of the phone call LOL but neuro said they say kids tend to > settle within three or four months.....although he also stated that it > might just be that parents and others get use to the behaviour by then > ) > good luck > , 's mom > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Patti, Please forgive me for butting in. I am one of the new keto moms here and have lots to learn. So here is my stupid question of the day: what is the SCD diet? Whatever it is, I am so glad you are having such great success with it! Take care! , mom to Langan, 18 months old and keto kid since 11/03 > >Reply-To: ketogenic >To: <ketogenic > >Subject: Re: Katera update >Date: Thu, 12 Feb 2004 08:12:34 -0800 > _________________________________________________________________ Create your own personal Web page with the info you use most, at My MSN. http://click.atdmt.com/AVE/go/onm00200364ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Patti, Please forgive me for butting in. I am one of the new keto moms here and have lots to learn. So here is my stupid question of the day: what is the SCD diet? Whatever it is, I am so glad you are having such great success with it! Take care! , mom to Langan, 18 months old and keto kid since 11/03 > >Reply-To: ketogenic >To: <ketogenic > >Subject: Re: Katera update >Date: Thu, 12 Feb 2004 08:12:34 -0800 > _________________________________________________________________ Create your own personal Web page with the info you use most, at My MSN. http://click.atdmt.com/AVE/go/onm00200364ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Patti, Please forgive me for butting in. I am one of the new keto moms here and have lots to learn. So here is my stupid question of the day: what is the SCD diet? Whatever it is, I am so glad you are having such great success with it! Take care! , mom to Langan, 18 months old and keto kid since 11/03 > >Reply-To: ketogenic >To: <ketogenic > >Subject: Re: Katera update >Date: Thu, 12 Feb 2004 08:12:34 -0800 > _________________________________________________________________ Create your own personal Web page with the info you use most, at My MSN. http://click.atdmt.com/AVE/go/onm00200364ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 , SCD stands for the Specific Carbohydrate Diet..... it's a diet for healing GI disorders that is now being used for a lot of kids with autism and other neuro disorders. The health of the digestive system is intrinsically linked to the brain. Find out more at www.pecanbread.com .....and/or www.breakingtheviciouscycle.info . Patti Re: Katera update >Date: Thu, 12 Feb 2004 08:12:34 -0800 > _________________________________________________________________ Create your own personal Web page with the info you use most, at My MSN. http://click.atdmt.com/AVE/go/onm00200364ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 , SCD stands for the Specific Carbohydrate Diet..... it's a diet for healing GI disorders that is now being used for a lot of kids with autism and other neuro disorders. The health of the digestive system is intrinsically linked to the brain. Find out more at www.pecanbread.com .....and/or www.breakingtheviciouscycle.info . Patti Re: Katera update >Date: Thu, 12 Feb 2004 08:12:34 -0800 > _________________________________________________________________ Create your own personal Web page with the info you use most, at My MSN. http://click.atdmt.com/AVE/go/onm00200364ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Patti - sorry I haven't welcomed you back. Do you remember me -- 's Mom? Great to hear you guys are doing well. Kathy On Thu, 12 Feb 2004 15:08:33 -0800 " Patti " writes: > , SCD stands for the Specific Carbohydrate Diet..... it's a > diet for healing GI disorders that is now being used for a lot of > kids with autism and other neuro disorders. The health of the > digestive system is intrinsically linked to the brain. Find out more > at www.pecanbread.com .....and/or www.breakingtheviciouscycle.info . > > > Patti > Re: Katera update > >Date: Thu, 12 Feb 2004 08:12:34 -0800 > > > > _________________________________________________________________ > Create your own personal Web page with the info you use most, at > My MSN. > http://click.atdmt.com/AVE/go/onm00200364ave/direct/01/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Thanks, Patti! I have long been convinced that Langan's seizures and her tummy are related but have been laughed at by the " experts " . I am definitely going to check this out! Re: Katera update >Date: Thu, 12 Feb 2004 08:12:34 -0800 > _________________________________________________________________ Create your own personal Web page with the info you use most, at My MSN. http://click.atdmt.com/AVE/go/onm00200364ave/direct/01/<http://click.atdmt.com/A\ VE/go/onm00200364ave/direct/01/> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Thanks, Patti! I have long been convinced that Langan's seizures and her tummy are related but have been laughed at by the " experts " . I am definitely going to check this out! Re: Katera update >Date: Thu, 12 Feb 2004 08:12:34 -0800 > _________________________________________________________________ Create your own personal Web page with the info you use most, at My MSN. http://click.atdmt.com/AVE/go/onm00200364ave/direct/01/<http://click.atdmt.com/A\ VE/go/onm00200364ave/direct/01/> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Thanks, Patti! I have long been convinced that Langan's seizures and her tummy are related but have been laughed at by the " experts " . I am definitely going to check this out! Re: Katera update >Date: Thu, 12 Feb 2004 08:12:34 -0800 > _________________________________________________________________ Create your own personal Web page with the info you use most, at My MSN. http://click.atdmt.com/AVE/go/onm00200364ave/direct/01/<http://click.atdmt.com/A\ VE/go/onm00200364ave/direct/01/> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Yes, of course I remember you...... Hi Kathy! I probably won't be back here for long...... I'm already drowning in e-mail! Patti ----- Original Message ----- Patti - sorry I haven't welcomed you back. Do you remember me -- 's Mom? Great to hear you guys are doing well. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Yes, of course I remember you...... Hi Kathy! I probably won't be back here for long...... I'm already drowning in e-mail! Patti ----- Original Message ----- Patti - sorry I haven't welcomed you back. Do you remember me -- 's Mom? Great to hear you guys are doing well. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Yes, of course I remember you...... Hi Kathy! I probably won't be back here for long...... I'm already drowning in e-mail! Patti ----- Original Message ----- Patti - sorry I haven't welcomed you back. Do you remember me -- 's Mom? Great to hear you guys are doing well. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 , There's an article posted on both of those websites.... written by me.... about seizure control on SCD. I think there is a link in the article to another article about the " gut-brain connection " . VERY interesting! Patti ----- Original Message ----- I have long been convinced that Langan's seizures and her tummy are related but have been laughed at by the " experts " . I am definitely going to check this out! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 , There's an article posted on both of those websites.... written by me.... about seizure control on SCD. I think there is a link in the article to another article about the " gut-brain connection " . VERY interesting! Patti ----- Original Message ----- I have long been convinced that Langan's seizures and her tummy are related but have been laughed at by the " experts " . I am definitely going to check this out! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2004 Report Share Posted March 12, 2004 Welcome back Patti ---- you are always welcome here!!! Kathy On Thu, 11 Mar 2004 19:34:53 -0800 " Patti " writes: > Hello to everyone who remembers us.... and to those who don't. > > I've decided to hang out here with all of you for a while, since we > are back in the land of seizures and AEDs. Katera was on the Keto > diet from October 2000 until January of 2003. Our first Keto year > was very good...... only one seizure at the six month mark. Then > after we passed one full year, we started seeing more creeping back > until we saw an average of 2 to 3 per month...... usually partials, > sometimes longer and more generalized. I felt I had given Keto my > all and was seriously burned out...... Katera was always exceedingly > ketotic, even at low ratios....... so in the last several months of > the diet, we were only at a 2:1 ratio, but had 160+ ketones all the > time. I took a breather from January '03 for a few months.... and > she was no worse off the diet..... though I'll admit, we stayed > " sort of " low-carb.... just wasn't weighing food and not giving so > much fat. Then in April, we had a doozy of a seizure and right about > the same time, another parent here told me about the Specific > Carbohydrate Diet, which is a diet for gastro intestinal > disorders..... but she said that some were seeing improvement in > seizures and other neuro conditions. I quickly read up and decided > to give it a go. Katera immediately went 10 weeks seizure free...... > had one seizure.... then went 5 MONTHS seizure free on SCD. I was > thrilled...... especially since the diet is sooooo much easier than > the Keto diet. Then in November of '03, with a viral illness, we saw > several big seizures...... decided to stay on SCD but added an AED > on December 20th (for the first time in four years), Keppra. I'm not > thrilled by Keppra so far...... because she is pretty irritable..... > and we have seen one seizure since starting it, just three weeks > ago, again with illness/fever. It was a humdinger of a tonic-clonic, > which dashed my hopes of a miracle drug in Keppra. Now, the neuro > seems to want to add Zonegran to the mix...... and I've just gone > and read up enough online tonight in the past ten minutes to make me > absolutely sure she will never take this drug. If anyone else has > any experience with it, please chime in. I doubt very much that we > will try it. I think I would sooner go back to the Keto diet..... > keeping within the guidelines of SCD, too. We had a recent brain > MRI.... just something the neuro wanted since there hadn't been one > in over 5 years and Katera has some other physical/ortho issues that > are worsening and he wanted to rule out any changes in her brain. > So.... that brings you up to speed. I've temporarily signed off the > SCD list, since I can't juggle both lists.... too much mail! I may > not be able to keep up with this one very well but thought I'd check > in and visit with you all for a while. Did you know this is the > greatest group of parents on the internet?? > > Patti, mom to Katera, age 7.5 (CP, ACC, microcephaly, seizures from > early infancy, global delays, speech and motor dyspraxia, tethered > cord syndrome, yadda, yadda, yadda) former Keto Kid turned SCD > kid... in Washington state. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2004 Report Share Posted March 12, 2004 Welcome back Patti ---- you are always welcome here!!! Kathy On Thu, 11 Mar 2004 19:34:53 -0800 " Patti " writes: > Hello to everyone who remembers us.... and to those who don't. > > I've decided to hang out here with all of you for a while, since we > are back in the land of seizures and AEDs. Katera was on the Keto > diet from October 2000 until January of 2003. Our first Keto year > was very good...... only one seizure at the six month mark. Then > after we passed one full year, we started seeing more creeping back > until we saw an average of 2 to 3 per month...... usually partials, > sometimes longer and more generalized. I felt I had given Keto my > all and was seriously burned out...... Katera was always exceedingly > ketotic, even at low ratios....... so in the last several months of > the diet, we were only at a 2:1 ratio, but had 160+ ketones all the > time. I took a breather from January '03 for a few months.... and > she was no worse off the diet..... though I'll admit, we stayed > " sort of " low-carb.... just wasn't weighing food and not giving so > much fat. Then in April, we had a doozy of a seizure and right about > the same time, another parent here told me about the Specific > Carbohydrate Diet, which is a diet for gastro intestinal > disorders..... but she said that some were seeing improvement in > seizures and other neuro conditions. I quickly read up and decided > to give it a go. Katera immediately went 10 weeks seizure free...... > had one seizure.... then went 5 MONTHS seizure free on SCD. I was > thrilled...... especially since the diet is sooooo much easier than > the Keto diet. Then in November of '03, with a viral illness, we saw > several big seizures...... decided to stay on SCD but added an AED > on December 20th (for the first time in four years), Keppra. I'm not > thrilled by Keppra so far...... because she is pretty irritable..... > and we have seen one seizure since starting it, just three weeks > ago, again with illness/fever. It was a humdinger of a tonic-clonic, > which dashed my hopes of a miracle drug in Keppra. Now, the neuro > seems to want to add Zonegran to the mix...... and I've just gone > and read up enough online tonight in the past ten minutes to make me > absolutely sure she will never take this drug. If anyone else has > any experience with it, please chime in. I doubt very much that we > will try it. I think I would sooner go back to the Keto diet..... > keeping within the guidelines of SCD, too. We had a recent brain > MRI.... just something the neuro wanted since there hadn't been one > in over 5 years and Katera has some other physical/ortho issues that > are worsening and he wanted to rule out any changes in her brain. > So.... that brings you up to speed. I've temporarily signed off the > SCD list, since I can't juggle both lists.... too much mail! I may > not be able to keep up with this one very well but thought I'd check > in and visit with you all for a while. Did you know this is the > greatest group of parents on the internet?? > > Patti, mom to Katera, age 7.5 (CP, ACC, microcephaly, seizures from > early infancy, global delays, speech and motor dyspraxia, tethered > cord syndrome, yadda, yadda, yadda) former Keto Kid turned SCD > kid... in Washington state. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2004 Report Share Posted March 12, 2004 We are glad to have you back, always glad...but not glad for the reason. What a drag. We will help any way we can We did Keppra, have been on for over a year, never got to high on the dose as Jake turned into a bear. I am weaning that and Depakte, I must be going through a " sick of meds " phase. We are only on 1/2 tablet of Keppra per DAY. Barb Swoyer and Jake Katera update Hello to everyone who remembers us.... and to those who don't. I've decided to hang out here with all of you for a while, since we are back in the land of seizures and AEDs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2004 Report Share Posted March 12, 2004 Thanks, Saro...... Sorry to here Keppra hasn't worked well for Rohan either. I haven't ever looked into the VNS but I know Nan has certainly been pleased with it for Sevi...... it has been a good alternative to Diastat and trips to the ER for them. Patti Re: Re: Katera update Hi Patti, Welcome back, but I wish you didn't have to .....you know what I mean! As Glenna said I do hope the recent sz. Katera had were due to the illnesses. Rohan is off the diet and on Keppra too. I'm afraid it has stopped working and we are left with side effects, like being tired all the time and being sensitive to touch etc. The good news is that he will be investigated for the VNS in April. I'm not getting my hopes up too much, but it's something positive to try. Hope Katera has the same sz-free state again. You could always try the KGD again if necessary. Saro Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2004 Report Share Posted March 12, 2004 Thanks, Saro...... Sorry to here Keppra hasn't worked well for Rohan either. I haven't ever looked into the VNS but I know Nan has certainly been pleased with it for Sevi...... it has been a good alternative to Diastat and trips to the ER for them. Patti Re: Re: Katera update Hi Patti, Welcome back, but I wish you didn't have to .....you know what I mean! As Glenna said I do hope the recent sz. Katera had were due to the illnesses. Rohan is off the diet and on Keppra too. I'm afraid it has stopped working and we are left with side effects, like being tired all the time and being sensitive to touch etc. The good news is that he will be investigated for the VNS in April. I'm not getting my hopes up too much, but it's something positive to try. Hope Katera has the same sz-free state again. You could always try the KGD again if necessary. Saro Quote Link to comment Share on other sites More sharing options...
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