Guest guest Posted June 13, 2001 Report Share Posted June 13, 2001 Sleep sz (just as when weaning the depacrap) started 4 months after stopping dep and have become worse now, just after 5 months. Hi Barb, Can you remember when was free of the 'withdrawal' type sz he had, after three months of being free of depakote? Did you do anything to help with them? The ones two nights ago, that came ~~~~ Saro... I remember quite well our Depakote withdrawals...and to double check I went back through my calendar...We weaned the last of Dep mid Sept and withdrawals continued for 6 weeks following when I looked back over s diet/weight/height and due to weight gain decreased cals...which gave us very good control for our disney trip in Nov. mid January we noticed the start seizures IVe termed the Scary monsters! Seizures different from s previous ones... which he had several of them through that spring. s withdrawals were usually controlled with either oral ativan or valium and for the generalized...the dreaded diastat. Over the years weve noticed weve had to change around between the valium and diastat...its almost like the seizures get use to one and the other would work for a spell...might be an idea too. So time line....4 months after weaning seizure, returned for 2 months...with fairly good control after that point. I know Ive compared with other experiences and several have noted a similar problem with a rather rough spot during that 3-6 month weaning time frame. This doesnt mean this is your problem but maybe with some detective work you could eliminate other possibilities...go back over the diet issues...weight gain/loss, numbers in your food values (products labels change and should periodically be checked) what about meals themselves...any errors in calculations?? (I had that happen once with a typo) the main thing is tune into Rohan and follow your gut! The d.enzymes from Solgar - dibasic cal. phosphate ox-bile extract pancreatin aspergillus oryzae diastase betaine HCL papain pesin extract ~~~~ Now this isnt exactly what I was referring to...I recognize several of the ingredients like the betaine HCL and pepsin and the others Im guessing also would be good digestive aids...actually the HCL gets mixed reviews depending on who your talking to. I added it to bryans meals but never really noticed anything one way or another. did you check on carb content?? the enzymes I was refering to specifically are protease, Amylase, and Lipase...these are both created in the digestive and are in the foods we eat and aid with the digestion of carbs, fats and prot. I would very strongly suggests these be added to the diet along with carnitine!!! was using a very pricy product by enzymatic theory called Mega-zyme http://www.enzy.com/products/display.asp?id=358 & cpmid=390 but now we are currently using a product by whole foods called wholezyme which is a very good product....just generic and cheep. for further reading you might be interested in.... http://www.alternativemedicine.com/books/enzyme_cure/chap1.shtml ~~ Vit E (solgar) Dry containing d-alpha tocopheryl succinate prep. ~~~~ ok...now this is what I was referring to...except you might want to find one that contains mixed tocopheryls...Twin labs has a dry one no carbs (last I checked). or look for the one that was recommended for bry...its expensive but I think its worth it considering the type of diet these kids are on its by 'A.C. Grace'. ~~ We only had a few good days and this was on stopping vit E. Now things are bad again and ketones are up at night. Both vit E and d.e seem to increase ketones. I know these things are supposed to be good, but Rohan's response seems to be bad. It's the same with flax - only 0.5g makes him yawny and tired. I have tried going lower than 2 on the ratio to reduce the ketones but he has lots of absence like sz and the generalized ones last longer. ~~~~ Now this could change the further away from the depacote he gets!! like I typed above...lets go over things and see if anything else comes up...also what other supplements are you using?? whats your multi?? hope something in there helps! cya Barb....s mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2001 Report Share Posted June 13, 2001 Barb, I really appreciate your input. I'll look for the the enzymes and vit E. I can't wait for the school hols when things can be tried out slowly. I hope what Rohan is going through now is what you call the 3-6 rough spot. Knowing about others' experiences makes it easier to try and sit it out. I will talk to Rohan's Dr. about the ativan. We were once given Midazalam, but it was meant for an injection so trying to put it bet lip and gum was not easy as we had to first break open the ampuoles and syringe out the contents. Thanks again for your help. Love to . Saro BTW did you get to do the HBOT last December? martin wrote: > > Sleep sz (just as when weaning the depacrap) started 4 months after > stopping dep > and have become worse now, just after 5 months. > > > Hi Barb, > Can you remember when was free of the 'withdrawal' type > sz he had, after three months of being free of depakote? Did you > do anything to help with them? The ones two nights ago, > that came > > ~~~~ > Saro... > > I remember quite well our Depakote withdrawals...and to double check I > went > back through my calendar...We weaned the last of Dep mid Sept and > withdrawals > continued for 6 weeks following when I looked back over s > diet/weight/height > and due to weight gain decreased cals...which gave us very good > control for our disney > trip in Nov. mid January we noticed the start seizures IVe termed > the Scary monsters! > Seizures different from s previous ones... which he had several > of them through that > spring. s withdrawals were usually controlled with either oral > ativan or valium and for > the generalized...the dreaded diastat. Over the years weve noticed > weve had to change > around between the valium and diastat...its almost like the seizures > get use to one and > the other would work for a spell...might be an idea too. > > So time line....4 months after weaning seizure, returned for 2 > months...with fairly good > control after that point. > > I know Ive compared with other experiences and several have noted a > similar problem > with a rather rough spot during that 3-6 month weaning time frame. > This doesnt mean > this is your problem but maybe with some detective work you could > eliminate other > possibilities...go back over the diet issues...weight gain/loss, > numbers in your food > values (products labels change and should periodically be checked) > what about meals > themselves...any errors in calculations?? (I had that happen once with > a typo) > > the main thing is tune into Rohan and follow your gut! > > > > The d.enzymes from Solgar - dibasic cal. phosphate > ox-bile extract > pancreatin > aspergillus oryzae > diastase > betaine HCL > papain > pesin extract > > ~~~~ > Now this isnt exactly what I was referring to...I recognize several of > the ingredients like > the betaine HCL and pepsin and the others Im guessing also would be > good digestive > aids...actually the HCL gets mixed reviews depending on who your > talking to. I added > it to bryans meals but never really noticed anything one way or > another. did you check > on carb content?? > > the enzymes I was refering to specifically are protease, Amylase, and > Lipase...these are > both created in the digestive and are in the foods we eat and aid with > the digestion of > carbs, fats and prot. I would very strongly suggests these be added > to the diet along > with carnitine!!! was using a very pricy product by > enzymatic theory > called Mega-zyme > http://www.enzy.com/products/display.asp?id=358 & cpmid=390 > but now we are currently using a product by whole foods called > wholezyme > which is a very good product....just generic and cheep. > > for further reading you might be interested in.... > http://www.alternativemedicine.com/books/enzyme_cure/chap1.shtml > > ~~ > Vit E (solgar) Dry containing d-alpha tocopheryl succinate prep. > > ~~~~ > ok...now this is what I was referring to...except you might want to > find one that contains > mixed tocopheryls...Twin labs has a dry one no carbs (last I > checked). or look for the > one that was recommended for bry...its expensive but I think its worth > it considering the > type of diet these kids are on its by 'A.C. Grace'. > ~~ > We only had a few good days and this was on stopping vit E. > Now things are bad again and ketones are up at night. Both vit E > and d.e seem to increase ketones. > I know these things are supposed to be good, but Rohan's response > seems to be bad. It's the same with flax - only 0.5g makes him yawny > and tired. I have tried going lower than 2 on the ratio to reduce the > ketones > but he has lots of absence like sz and the generalized ones last > longer. > > ~~~~ > Now this could change the further away from the depacote he gets!! > like I typed above...lets > go over things and see if anything else comes up...also what other > supplements are you using?? > whats your multi?? > > hope something in there helps! > cya > Barb....s mom > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2001 Report Share Posted June 13, 2001 Barb, I really appreciate your input. I'll look for the the enzymes and vit E. I can't wait for the school hols when things can be tried out slowly. I hope what Rohan is going through now is what you call the 3-6 rough spot. Knowing about others' experiences makes it easier to try and sit it out. I will talk to Rohan's Dr. about the ativan. We were once given Midazalam, but it was meant for an injection so trying to put it bet lip and gum was not easy as we had to first break open the ampuoles and syringe out the contents. Thanks again for your help. Love to . Saro BTW did you get to do the HBOT last December? martin wrote: > > Sleep sz (just as when weaning the depacrap) started 4 months after > stopping dep > and have become worse now, just after 5 months. > > > Hi Barb, > Can you remember when was free of the 'withdrawal' type > sz he had, after three months of being free of depakote? Did you > do anything to help with them? The ones two nights ago, > that came > > ~~~~ > Saro... > > I remember quite well our Depakote withdrawals...and to double check I > went > back through my calendar...We weaned the last of Dep mid Sept and > withdrawals > continued for 6 weeks following when I looked back over s > diet/weight/height > and due to weight gain decreased cals...which gave us very good > control for our disney > trip in Nov. mid January we noticed the start seizures IVe termed > the Scary monsters! > Seizures different from s previous ones... which he had several > of them through that > spring. s withdrawals were usually controlled with either oral > ativan or valium and for > the generalized...the dreaded diastat. Over the years weve noticed > weve had to change > around between the valium and diastat...its almost like the seizures > get use to one and > the other would work for a spell...might be an idea too. > > So time line....4 months after weaning seizure, returned for 2 > months...with fairly good > control after that point. > > I know Ive compared with other experiences and several have noted a > similar problem > with a rather rough spot during that 3-6 month weaning time frame. > This doesnt mean > this is your problem but maybe with some detective work you could > eliminate other > possibilities...go back over the diet issues...weight gain/loss, > numbers in your food > values (products labels change and should periodically be checked) > what about meals > themselves...any errors in calculations?? (I had that happen once with > a typo) > > the main thing is tune into Rohan and follow your gut! > > > > The d.enzymes from Solgar - dibasic cal. phosphate > ox-bile extract > pancreatin > aspergillus oryzae > diastase > betaine HCL > papain > pesin extract > > ~~~~ > Now this isnt exactly what I was referring to...I recognize several of > the ingredients like > the betaine HCL and pepsin and the others Im guessing also would be > good digestive > aids...actually the HCL gets mixed reviews depending on who your > talking to. I added > it to bryans meals but never really noticed anything one way or > another. did you check > on carb content?? > > the enzymes I was refering to specifically are protease, Amylase, and > Lipase...these are > both created in the digestive and are in the foods we eat and aid with > the digestion of > carbs, fats and prot. I would very strongly suggests these be added > to the diet along > with carnitine!!! was using a very pricy product by > enzymatic theory > called Mega-zyme > http://www.enzy.com/products/display.asp?id=358 & cpmid=390 > but now we are currently using a product by whole foods called > wholezyme > which is a very good product....just generic and cheep. > > for further reading you might be interested in.... > http://www.alternativemedicine.com/books/enzyme_cure/chap1.shtml > > ~~ > Vit E (solgar) Dry containing d-alpha tocopheryl succinate prep. > > ~~~~ > ok...now this is what I was referring to...except you might want to > find one that contains > mixed tocopheryls...Twin labs has a dry one no carbs (last I > checked). or look for the > one that was recommended for bry...its expensive but I think its worth > it considering the > type of diet these kids are on its by 'A.C. Grace'. > ~~ > We only had a few good days and this was on stopping vit E. > Now things are bad again and ketones are up at night. Both vit E > and d.e seem to increase ketones. > I know these things are supposed to be good, but Rohan's response > seems to be bad. It's the same with flax - only 0.5g makes him yawny > and tired. I have tried going lower than 2 on the ratio to reduce the > ketones > but he has lots of absence like sz and the generalized ones last > longer. > > ~~~~ > Now this could change the further away from the depacote he gets!! > like I typed above...lets > go over things and see if anything else comes up...also what other > supplements are you using?? > whats your multi?? > > hope something in there helps! > cya > Barb....s mom > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2001 Report Share Posted June 14, 2001 BTW did you get to do the HBOT last December? Heya Saro... glad to help...and yeah we went for HBOT. Bry finished 23 dives but at that point he was really spiraling out of control from the encephalitis. I took him when he was already seizing pretty bad, praying that it would help, but I doubt anything would have helped at that point. it took loading up on massive Dilaantin, Depacrap, and pheno just to get him stable enough to life flight him to CCF. They were ready to induce coma!! I saw absolute miracles with HBOT! Ive already discussed plans for more with both the Brain surgeon and our local neruo who suggested we wait until Nov until everything vascular is fully healed and then she is gonna get him in our local chamber and shoot for insurance coverage under brain injury (hard to cover under epilepsy Dx) Geez I love our new Neruo!!! anyhoo...next time ive got some time I will fill you in on the miracles I witnessed with HBO! cya Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2001 Report Share Posted June 16, 2001 Saro, Haven't got on the computer for a few days but just read your mail to Barb. Out of interest, what do you use for a szre at home? Do you use rectal diazapam? If you do, try keeping it in the fridge. Works far better for Daisy if it's icy cold when administered. Also, the buccal midaz.............. how long did you use it for and why was it unsuccessful? Hope things are improving. Weather so grim, hope life in your household is brighter. Love Sara Re: Rohan - Update Barb,I really appreciate your input. I'll look for thethe enzymes and vit E. I can't wait for the schoolhols when things can be tried out slowly. I hopewhat Rohan is going through now is what youcall the 3-6 rough spot. Knowing about others'experiences makes it easier to try and sit it out.I will talk to Rohan's Dr. about the ativan. Wewere once given Midazalam, but it was meantfor an injection so trying to put it bet lip andgum was not easy as we had to first break openthe ampuoles and syringe out the contents.Thanks again for your help.Love to .SaroBTW did you get to do the HBOT last December?martin wrote:>> Sleep sz (just as when weaning the depacrap) started 4 months after> stopping dep> and have become worse now, just after 5 months.>>> Hi Barb,> Can you remember when was free of the 'withdrawal' type> sz he had, after three months of being free of depakote? Did you> do anything to help with them? The ones two nights ago,> that came>> ~~~~> Saro...>> I remember quite well our Depakote withdrawals...and to double check I> went> back through my calendar...We weaned the last of Dep mid Sept and> withdrawals> continued for 6 weeks following when I looked back over s> diet/weight/height> and due to weight gain decreased cals...which gave us very good> control for our disney> trip in Nov. mid January we noticed the start seizures IVe termed> the Scary monsters!> Seizures different from s previous ones... which he had several> of them through that> spring. s withdrawals were usually controlled with either oral> ativan or valium and for> the generalized...the dreaded diastat. Over the years weve noticed> weve had to change> around between the valium and diastat...its almost like the seizures> get use to one and> the other would work for a spell...might be an idea too.>> So time line....4 months after weaning seizure, returned for 2> months...with fairly good> control after that point.>> I know Ive compared with other experiences and several have noted a> similar problem> with a rather rough spot during that 3-6 month weaning time frame.> This doesnt mean> this is your problem but maybe with some detective work you could> eliminate other> possibilities...go back over the diet issues...weight gain/loss,> numbers in your food> values (products labels change and should periodically be checked)> what about meals> themselves...any errors in calculations?? (I had that happen once with> a typo)>> the main thing is tune into Rohan and follow your gut!>>>> The d.enzymes from Solgar - dibasic cal. phosphate> ox-bile extract> pancreatin> aspergillus oryzae> diastase> betaine HCL> papain> pesin extract>> ~~~~> Now this isnt exactly what I was referring to...I recognize several of> the ingredients like> the betaine HCL and pepsin and the others Im guessing also would be> good digestive> aids...actually the HCL gets mixed reviews depending on who your> talking to. I added> it to bryans meals but never really noticed anything one way or> another. did you check> on carb content??>> the enzymes I was refering to specifically are protease, Amylase, and> Lipase...these are> both created in the digestive and are in the foods we eat and aid with> the digestion of> carbs, fats and prot. I would very strongly suggests these be added> to the diet along> with carnitine!!! was using a very pricy product by> enzymatic theory> called Mega-zyme> http://www.enzy.com/products/display.asp?id=358 & cpmid=390> but now we are currently using a product by whole foods called> wholezyme> which is a very good product....just generic and cheep.>> for further reading you might be interested in....> http://www.alternativemedicine.com/books/enzyme_cure/chap1.shtml>> ~~> Vit E (solgar) Dry containing d-alpha tocopheryl succinate prep.>> ~~~~> ok...now this is what I was referring to...except you might want to> find one that contains> mixed tocopheryls...Twin labs has a dry one no carbs (last I> checked). or look for the> one that was recommended for bry...its expensive but I think its worth> it considering the> type of diet these kids are on its by 'A.C. Grace'.> ~~> We only had a few good days and this was on stopping vit E.> Now things are bad again and ketones are up at night. Both vit E> and d.e seem to increase ketones.> I know these things are supposed to be good, but Rohan's response> seems to be bad. It's the same with flax - only 0.5g makes him yawny> and tired. I have tried going lower than 2 on the ratio to reduce the> ketones> but he has lots of absence like sz and the generalized ones last> longer.>> ~~~~> Now this could change the further away from the depacote he gets!!> like I typed above...lets> go over things and see if anything else comes up...also what other> supplements are you using??> whats your multi??>> hope something in there helps!> cya> Barb....s mom>>>>>> Quote Link to comment Share on other sites More sharing options...
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