Guest guest Posted December 17, 2006 Report Share Posted December 17, 2006 Hi , My daughter, Katera (age 10), was on the Keto diet from age 4 for a little over two years, after many med failures. We then did about 18 months on SCD.... took a year off to explore some other seizure control options, including having a Vagus Nerve Stimulator (VNS) surgically implanted. She has now been back on SCD since May. I know exactly what you mean about how wonderful the food selections on SCD are compared to Keto. I've always said SCD is a walk in the park compared to the Keto diet. Once you've survived implementing THAT diet, just about any other dietary " restriction " seems mild! Katera has a very different diagnosis... technically cerebral palsy, but specifically was born missing a small portion of her brain... part of the corpus callosum (major connection btwn right and left hemispheres). So, we don't know if she will ever be seizure free since she does have a structural brain abnormality. We do know that most medications simply don't work for her.... and she has had allergic reactions to several drugs, so entire classes of AEDs cannot even be attempted now. She is currently on Keppra (levitracetam), which is usually prescribed as either an add-on drug or for partial seizures, even though her seizures often begin as partials.... but generalize into full-blown tonic-clonic types. Keppra was trialed some time ago, with zero result.... but after getting the VNS, which on it's own, did not bring anything positive for the first year.... adding Keppra back (about 14 months ago) in combination with the VNS seemed to give us a little improvement at last. By that, I mean that we no longer have to give massive emergency drugs to get a seizure to stop.... and we have only called for an ambulance once in all that time, but were not transported. This is a HUGE change, as the local paramedics were getting rather used to their frequent visits! I put her back on strict SCD in May because she did have lingering BM irregularities that I never could quite get straightened out after her VNS surgery, and the antibiotic regimen that always follows surgery.... even though I had kept up the use of SCD yogurt even after we went off the diet in 2004, and always sort of " leaned " toward the SCD way of eating with her (no sugar, no refined ANYthing, etc.). We are not necessarily expecting further seizure improvement from SCD this time.... but will assume it can only lend it's additional support for healthy neurology. I don't think there is any reason to have concerns about the diet interfering with meds, or vice versa.... as you can have with the Keto diet. I know that diet can make med levels go toxic, because it changes the way they are metabolized. I wouldn't really expect that to happen with SCD, though admittedly, very few of these kids are on AEDs.... so we don't have a lot of evidence one way or the other. We started SCD the first time while off all meds.... and Keppra is a pretty low-side-effect drug, with no need for constant monitoring of blood levels as you have with many other meds.... so I have not given it a second thought and have never seen a problem. Like I said, I wouldn't expect SCD to have that effect, but it's possible, I suppose. Is Gregor's current med one that you must check levels on periodically? Zarontin is not one we've ever trialed, so I have no personal experience. At this early stage in the diet, you may see some negative symptoms from bacterial die-off, and those toxins themselves need to be processed.... and eliminated from the body... so can potentially stir up trouble or simply cause increased stimming or flu-like achiness and low-energy. It can be different for every child... but die-off is temporary. Baths with epsom salts can help with detoxing... and they usually have a calming effect. Since the liver needs to be involved in elimnation of die-off toxins, I imagine it can put an extra load on an already taxed liver with a child on AEDs. Is Zarontin one that necessitates watching liver function? Is there any possibility of getting the Zarontin compounded without the added sugars? I don't know if you have compounding pharmacies in the UK.... but most drugs here in the US can be compounded without the illegals, then one can simply mix the straight drug into applesauce or something similar. Honey is also a good mixer... or chaser.... for nasty tasting meds. Having the illegals in the medication is a potential problem.... but if there is not an option for getting it made up without them, which would be ideal, you must do the best you can with it as is. The Zarontin must be helping.... so it's necessary to keep it on board for now. I'm so glad you've been able to wean the Depakote! What a nasty, awful drug that one is... and so difficult to wean. Were you ever on the Keto list here on Yahoo groups? I used to moderate that list.... way back when.... and I remember we all used to call that drug " Depa-Crap " ! (Excuse my language!) best wishes.... Patti Seizure meds? We've had our son (Gregor, 8) on the SCD diet for a week now. He'd been on the ketogenic diet for a year, without noticeable improvements except for when we weaned Epilim/Depakote, and is SO enjoying all the new foods! Elaine Gottschall's delicious recipes are going down a treat. So far he has been more 'stimmy' than usual - his diagnosis is Landau Kleffner syndrome which has many similarities to autism, and the stimmy behaviour has only emerged in the last 6 months. He also seems pretty tired and is sleeping very well, which is great! Gregor lost all communication 2 years ago but is very alert and physically quick, so we have to be vigilant to keep him from cheating but we're used to that after keto. We thought the diet worth a try as his stomach is always bloated although he's otherwise quite thin. He doesn't have noticeable bowel problems otherwise, but was on huge amounts of antibiotics during chemo for cancer when he was 3. Speech loss started soon after. He's on Ethosuximide/Zarontin which is full of nasty stuff - saccharin, E211, sucrose... I know this is not helpful to the diet at all. We would love to have him drug free but would need to see an improved EEG before considering a wean. His seizures are subclinical during sleep. Has anyone else started the diet while on AED's? I'm trying to get an idea of how much they interfere - not enough to completely stop the diet from helping, I hope?! Any thoughts appreciated, UK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2006 Report Share Posted December 17, 2006 Patty, Email me off list if you don't mind. I want to talk to you about Depakote. That's what my husband takes to control seizures...does a great jo...has only had two in his life. I'm wondering what's so terrible about it, side effects from weening, ect. Meleah Seizure meds? We've had our son (Gregor, 8) on the SCD diet for a week now. He'd been on the ketogenic diet for a year, without noticeable improvements except for when we weaned Epilim/Depakote, and is SO enjoying all the new foods! Elaine Gottschall's delicious recipes are going down a treat. So far he has been more 'stimmy' than usual - his diagnosis is Landau Kleffner syndrome which has many similarities to autism, and the stimmy behaviour has only emerged in the last 6 months. He also seems pretty tired and is sleeping very well, which is great! Gregor lost all communication 2 years ago but is very alert and physically quick, so we have to be vigilant to keep him from cheating but we're used to that after keto. We thought the diet worth a try as his stomach is always bloated although he's otherwise quite thin. He doesn't have noticeable bowel problems otherwise, but was on huge amounts of antibiotics during chemo for cancer when he was 3. Speech loss started soon after. He's on Ethosuximide/Zarontin which is full of nasty stuff - saccharin, E211, sucrose... I know this is not helpful to the diet at all. We would love to have him drug free but would need to see an improved EEG before considering a wean. His seizures are subclinical during sleep. Has anyone else started the diet while on AED's? I'm trying to get an idea of how much they interfere - not enough to completely stop the diet from helping, I hope?! Any thoughts appreciated, UK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2006 Report Share Posted December 17, 2006 Patty, if you don't mind me asking, what problems did your daughter have with depakote? Debi > I'm so glad you've been able to wean the Depakote! What a nasty, awful drug that one is... and so difficult to wean. Were you ever on the Keto list here on Yahoo groups? I used to moderate that list.... way back when.... and I remember we all used to call that drug " Depa-Crap " ! (Excuse my language!) > > best wishes.... > > Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2006 Report Share Posted December 18, 2006 My daughter has never taken Depakote. I just know that quite a few of the Keto kids came to that diet with Dep on board. It's hard on the liver (hence the docs usually monitor regularly with blood draws) and when kids go on the Keto diet (this does NOT happen with SCD, that I know of) the med levels can change, easily tipping kids into trouble with toxic levels. It is wicked to wean.... causing withdrawal seizures in many kids. Patti Re: Seizure meds? Patty, if you don't mind me asking, what problems did your daughter have with depakote? Debi > I'm so glad you've been able to wean the Depakote! What a nasty, awful drug that one is... and so difficult to wean. Were you ever on the Keto list here on Yahoo groups? I used to moderate that list.... way back when.... and I remember we all used to call that drug " Depa-Crap " ! (Excuse my language!) > > best wishes.... > > Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 Hi I've just read your email. My son , Jack (2.6, atypical infantile spasms with an EEG of Lennox-Gastaut and autism) has also been on AEDs since we started the diet in September. Like you, we weaned off Epilim after a stint on the Keto diet (which had no effect for us either) and are very glad to see the back of it, as it seemed to be responsible for crippling stomach pains that had plagued him since starting it in February). His dosage was very low by the time we started the SCD so I don't think it affected the diet's effects. He is currently on high doses of prednisilone (steroids) and that I believe has affected him. Since starting the diet, we had noticed a lot of his autistic tendencies had practically disappeared (tip-toeing, flapping ). These came back with a vengeance in recent weeks, since we started the prednisilone. I thought their return might coincide with SCD three month die-off, but our neurologist is convinced its the steroids affecting his behaviour. We've just started on keppra, but as Patti said, this seems o have few side-effects, so I'm hoping it wont interfere. Good luck with the diet it is easy compared to keto! Anita, also UK Seizure meds? We've had our son (Gregor, 8) on the SCD diet for a week now. He'd been on the ketogenic diet for a year, without noticeable improvements except for when we weaned Epilim/Depakote, and is SO enjoying all the new foods! Elaine Gottschall's delicious recipes are going down a treat. So far he has been more 'stimmy' than usual - his diagnosis is Landau Kleffner syndrome which has many similarities to autism, and the stimmy behaviour has only emerged in the last 6 months. He also seems pretty tired and is sleeping very well, which is great! Gregor lost all communication 2 years ago but is very alert and physically quick, so we have to be vigilant to keep him from cheating but we're used to that after keto. We thought the diet worth a try as his stomach is always bloated although he's otherwise quite thin. He doesn't have noticeable bowel problems otherwise, but was on huge amounts of antibiotics during chemo for cancer when he was 3. Speech loss started soon after. He's on Ethosuximide/ Zarontin which is full of nasty stuff - saccharin, E211, sucrose... I know this is not helpful to the diet at all. We would love to have him drug free but would need to see an improved EEG before considering a wean. His seizures are subclinical during sleep. Has anyone else started the diet while on AED's? I'm trying to get an idea of how much they interfere - not enough to completely stop the diet from helping, I hope?! Any thoughts appreciated, UK __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2007 Report Share Posted January 3, 2007 Hi Anita and Patti, thanks so much for your responses - I read them on christmas eve and was really encouraged, but have only just managed to get back to the computer this evening! It's great to hear from two Keto veterans... needless to say we are still really enjoying the comparative freedom Gregor has on SCD, and are quite amazed at how much he's eating - HUGE portions of stew and veg. And maybe we're imagining it but his stomach seems a little flatter and I think he's put on a little weight. Foolishly I didn't think to weigh him before starting! Anita, we have also tried the steroids and found that while they improved Gregor's EEG they did make him very uncommunicative and more autistic, which surprised us as we thought less activity would mean the opposite... and yet another boy at Gregor's school is doing very well (regained all speech, catching up fast) after nearly 2 years on pulsed (weekly) prednisolone so they're all different. I hope it works for you. Patti, thanks for the epsom salts tip; will be giving that a try as soon as I can get some. I think Zarontin probably should be monitored as the information on the leaflet mentions caution with liver problems, but the NHS here are reluctant to check blood levels of AED's - I asked recently and was refused, and similarly with Depakote when I was desperate to establish his levels. Our neurologist just refused and said there was no point. BTW I also hate Depakote/Epilim as it made Gregor so much worse. I know it's great for some people but was terrible for Gregor and actually caused tonic clonic seizures which he'd never had before, and he's had none since he came off it. We had a less awful time weaning it than we expected, only a few withdrawal seizures but I think that was down to the Zarontin. I did check in with the yahoo keto group daily, and s Friends here in the UK - without their support we would never had had the patience and courage to wean drugs. As for the nasty sugars in the zarontin syrup, I don't think the capsules are available in the Uk at the moment but I'll check - I'd have to empty caps into a syringe and mix with honey as Gregor can't swallow pills, but it would certainly be a better option - thanks. Interesting that you're both using Keppra - we're due to try it next month. I was really hoping to avoid it but don't have high hopes of Gregor's next EEG in a few weeks being any better. Ideally I'd like to wean him off Zarontin if we were on keppra but as you know it's easier said than done! Anyway it's only been 3 weeks since we cut out dairy so another few weeks might make things clearer. thanks again for all the info, > > Hi > > I've just read your email. My son , Jack (2.6, atypical infantile spasms with an EEG of Lennox-Gastaut and autism) has also been on AEDs since we started the diet in September. Like you, we weaned off Epilim after a stint on the Keto diet (which had no effect for us either) and are very glad to see the back of it, as it seemed to be responsible for crippling stomach pains that had plagued him since starting it in February). His dosage was very low by the time we started the SCD so I don't think it affected the diet's effects. > > He is currently on high doses of prednisilone (steroids) and that I believe has affected him. Since starting the diet, we had noticed a lot of his autistic tendencies had practically disappeared (tip- toeing, flapping ). These came back with a vengeance in recent weeks, since we started the prednisilone. I thought their return might coincide with SCD three month die-off, but our neurologist is convinced its the steroids affecting his behaviour. We've just started on keppra, but as Patti said, this seems o have few side- effects, so I'm hoping it wont interfere. > > Good luck with the diet it is easy compared to keto! > > Anita, also UK > > > Seizure meds? > > We've had our son (Gregor, 8) on the SCD diet for a week now. He'd > been on the ketogenic diet for a year, without noticeable improvements > except for when we weaned Epilim/Depakote, and is SO enjoying all the > new foods! Elaine Gottschall's delicious recipes are going down a > treat. > > So far he has been more 'stimmy' than usual - his diagnosis is Landau > Kleffner syndrome which has many similarities to autism, and the > stimmy behaviour has only emerged in the last 6 months. He also seems > pretty tired and is sleeping very well, which is great! Gregor lost > all communication 2 years ago but is very alert and physically quick, > so we have to be vigilant to keep him from cheating but we're used to > that after keto. We thought the diet worth a try as his stomach is > always bloated although he's otherwise quite thin. He doesn't have > noticeable bowel problems otherwise, but was on huge amounts of > antibiotics during chemo for cancer when he was 3. Speech loss > started soon after. > > He's on Ethosuximide/ Zarontin which is full of nasty stuff - > saccharin, E211, sucrose... I know this is not helpful to the diet at > all. We would love to have him drug free but would need to see an > improved EEG before considering a wean. His seizures are subclinical > during sleep. > > Has anyone else started the diet while on AED's? I'm trying to get an > idea of how much they interfere - not enough to completely stop the > diet from helping, I hope?! Any thoughts appreciated, > > > UK > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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