Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 one thing i noticed when hassan is in the hospital! he is listless, sleeps most of the time and is unresponsive to outside stimuli!! i even once demanded they wake him up before i take him home, lol. well with his frequent hospitalizations i learned he reacts this way to illness and the hospital. within a couple of days of being home he is his cheery self again, maybe your child has the same reaction? he was pretty ill, laboring to breathe is exhausting but also scarey for anyone let alone a child. maybe his body just needs rest and love!! take him home and see if he improves maybe? i am sorry i cant help you on the drug wean because we have never done one.....hassan is stable(for the most part) so we dont play with it as of yet. but i do think he may be just tired and scared and home may be just what the dr ordered:) maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 - hospital > Hi all, my 'turn' to be home, thanks for all the messages re advice on the resp distress and those asking after . > may be out of hospital tomorrow, am not sure if I want this or not. Cognitively, he is 'toast', lurching everywhere, drooling, slurring, you would swear he was in NCS, but an EEG yesterday says definitely not. It was the same as one a couple of months ago, the odd spike and wave, more on eye closing, but overall, one of his best in 2 yrs! I don't get it, if this is not behaviour from frequent seizure activity, what on earth is it. Love to think it is med toxicity, that we can eventually 'fix', but I just don't know any more. Really quite worried that some 'damage' at some stage has occurred over the past couple of months, or that a progressive decline is happening with him. If the EEG is the same as the last one, after a few depakote/lamictal withdrawls, it can't be that this has had an adverse affect on him, or it would show in seizure activity - wouldn't it??? > Is he really getting more toxic with each reduction we do, I just am having such a hard time with the logics, especially when trying to explain it to 's neuro, who doesn't feel 's AED levels are at a theraputic level any more, never mind a toxic level. (Depakote 400 mgs, lamictal 75 mgs, nitrazepam 8.25 mgs) > Have to decide what 'plan' to take to the hospital tomorrow, whether to push for an extended admission to do a speedier drug reduction, our schedule of reductions means about 7 more months (at least) to go through. If he were doing okay, I wouldn't mind, am not 'anti drugs' at all, but he is not showing consisitent improvement with each reduction, and I'm sort of starting to feel maybe he was better cognitively pre diet in between (frequent) seizures, than he is now, where we only really have seizures (except those pesky intermittent night ones) when doing lamictal reductions, or he becomes really ill. > The other thought we had is that he may have developed ESIS (sleep status), but even if he has, we wouldn't know if that is because we've reduced his meds, or because they need reducing, same old, same old. > Anyway, that's where we're at, 's resp issues appear resolved now, so that wee crisis can hopefully be filed away now....just got to figure this other business out. > By the way, the 'awake' bout of minor motor status that had on Mon that scared us silly (used to always have this on awakening pre diet - first thing to 'go' when he started the diet) was I think because his ketones were only just 1.5 .(managed to test him about an hour later). He has never been this low before, so pretty definite this allowed the bout of status to happen - haven't seen it since Mon, and his ketones haven't dropped like that again. Anyway, reading his admission notes today, not one staff member at the hospital, including his neuro, have considered this relevant enough to document. Not mentioned anywhere, and we really stressed the point to all the Docs (and there were many) that examined him. A few notes made about their opinion the depakote has been taken too low, but keto treatment obviously not considered important enough. Really capped the day off!!! > Off to sleep on it all, > Hill in NZ > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 Sorry to hear this, have been trying to follow along. Why do you think he is toxic? From his behavior? Are you weaning all meds at once or just Lamictal? Are you trying to wean one or all? Are you weaning to see if he'll improve? If he's worse, as you wean, why are you continuing? Maybe he needs it? 3 meds is alot, I agree, but if he's worse without them, his stablility is the goal, not no meds, right? How could he be getting more toxic as you reduce? Doesn't make sense to me at all. Also, he is not on huge amounts of meds.... I'm not trying to challenge you , you have enough stress for sure!! Just questioning what I read here. You sound very conflicted and overwhelmed....understandable!!! But is the weaning stressing you also? I guess I would just think...he's not very stable right now. Why push the weaning on top of it all? In the hopes of him improving? Just trying to understand.... hang in there, and hoping for a better time for - Barb Swoyer > Is he really getting more toxic with each reduction we do, I just am having such a hard time with the logics, especially when trying to explain it to 's neuro, who doesn't feel 's AED levels are at a theraputic level any more, never mind a toxic level. (Depakote 400 mgs, lamictal 75 mgs, nitrazepam 8.25 mgs) > Have to decide what 'plan' to take to the hospital tomorrow, whether to push for an extended admission to do a speedier drug reduction, our schedule of reductions means about 7 more months (at least) to go through. If he were doing okay, I wouldn't mind, am not 'anti drugs' at all, but he is not showing consisitent improvement with each reduction, and I'm sort of starting to feel maybe he was better cognitively pre diet in between (frequent) seizures, than he is now, where we only really have seizures (except those pesky intermittent night ones) when doing lamictal reductions, or he becomes really ill. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 Hi , I was not on the list for a few weeks due to e-mail problems and got back to day to see had been in hospital. I'm so sorry to hear about what you all have been through. Could it still be a withdrawal from the last med drops. It is funny you thought he was in NCS. This is exactly what Rohan was like last Thursday and Friday. He just wasn't responding, was vacant and " zombie-like " . It scared me more than ever before. His Dr. had wanted us to increase his calories/protein as he is at a crucial stage in growth, and we'd done it about a week ago. First he started getting sleep sz that ended in partial behaviour. Then this NCS type thing. His ketones were 8 all day. I reduced ratio from 2.2 to 1.8 (over 3 days) then went back to the old values of calories/prot. Things are better now, but he's not quite there. I don't know whether this is progressive thing brought to a sudden head by the change in food amts. The school has been complaining that his work has been very poor lately. We started Diamox today. One thing I know is he seems to do better on small amounts of food. Sz definitely related to meals. I recall that also has a relationship between sz and food. Anyway, I hope he's much better now. Hang in there and slow down on the med wean till things settle. Love & best wishes Saro....Rohan's mum - hospital > Hi all, my 'turn' to be home, thanks for all the messages re advice on the resp distress and those asking after . > may be out of hospital tomorrow, am not sure if I want this or not. Cognitively, he is 'toast', lurching everywhere, drooling, slurring, you would swear he was in NCS, but an EEG yesterday says definitely not. It was the same as one a couple of months ago, the odd spike and wave, more on eye closing, but overall, one of his best in 2 yrs! I don't get it, if this is not behaviour from frequent seizure activity, what on earth is it. Love to think it is med toxicity, that we can eventually 'fix', but I just don't know any more. Really quite worried that some 'damage' at some stage has occurred over the past couple of months, or that a progressive decline is happening with him. If the EEG is the same as the last one, after a few depakote/lamictal withdrawls, it can't be that this has had an adverse affect on him, or it would show in seizure activity - wouldn't it??? > Is he really getting more toxic with each reduction we do, I just am having such a hard time with the logics, especially when trying to explain it to 's neuro, who doesn't feel 's AED levels are at a theraputic level any more, never mind a toxic level. (Depakote 400 mgs, lamictal 75 mgs, nitrazepam 8.25 mgs) > Have to decide what 'plan' to take to the hospital tomorrow, whether to push for an extended admission to do a speedier drug reduction, our schedule of reductions means about 7 more months (at least) to go through. If he were doing okay, I wouldn't mind, am not 'anti drugs' at all, but he is not showing consisitent improvement with each reduction, and I'm sort of starting to feel maybe he was better cognitively pre diet in between (frequent) seizures, than he is now, where we only really have seizures (except those pesky intermittent night ones) when doing lamictal reductions, or he becomes really ill. > The other thought we had is that he may have developed ESIS (sleep status), but even if he has, we wouldn't know if that is because we've reduced his meds, or because they need reducing, same old, same old. > Anyway, that's where we're at, 's resp issues appear resolved now, so that wee crisis can hopefully be filed away now....just got to figure this other business out. > By the way, the 'awake' bout of minor motor status that had on Mon that scared us silly (used to always have this on awakening pre diet - first thing to 'go' when he started the diet) was I think because his ketones were only just 1.5 .(managed to test him about an hour later). He has never been this low before, so pretty definite this allowed the bout of status to happen - haven't seen it since Mon, and his ketones haven't dropped like that again. Anyway, reading his admission notes today, not one staff member at the hospital, including his neuro, have considered this relevant enough to document. Not mentioned anywhere, and we really stressed the point to all the Docs (and there were many) that examined him. A few notes made about their opinion the depakote has been taken too low, but keto treatment obviously not considered important enough. Really capped the day off!!! > Off to sleep on it all, > Hill in NZ > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 , I say this very hesitantly, knowing that I really know nothing at all, but here goes: I really think you should consider pursuing the drug wean, maybe even faster than you were. My daughter has now been off meds for 3.5 weeks, and only continues to improve. I thought it would be faster, but I am happy with what I am seeing. I wrote this out in detail a few days ago in a post Depakote wean. We were in a similar position to you, not knowing if it was toxicity or the results of seizures or NCS. In fact, your EEG is of interest to me because it sure seems to indicate toxicity, not seizures. We had it easier because we only had one med. However, we also were on a wean schedule that would have taken all summer. Instead, we finished the wean in 4 days. It was the best thing we ever did. We were supposed to have an EEG yesterday, but Hannah has a bad cold, so we rescheduled. It isn't until June 25. I am actually glad, because it gives us more time to stabilize before we see what's going on. Last week, she had only one seizure in six days. This is miraculous to us! She is having a little more now, but I will chalk it up to the cold for now. We will see what happens when the cold is gone. I hope all goes well for you. Take my advice with a grain of salt. I can only advise based on my experience. You need to go with your instinct. God will lead you in hepling your child. Regards, - hospital Hi all, my 'turn' to be home, thanks for all the messages re advice on the resp distress and those asking after . may be out of hospital tomorrow, am not sure if I want this or not. Cognitively, he is 'toast', lurching everywhere, drooling, slurring, you would swear he was in NCS, but an EEG yesterday says definitely not. It was the same as one a couple of months ago, the odd spike and wave, more on eye closing, but overall, one of his best in 2 yrs! I don't get it, if this is not behaviour from frequent seizure activity, what on earth is it. Love to think it is med toxicity, that we can eventually 'fix', but I just don't know any more. Really quite worried that some 'damage' at some stage has occurred over the past couple of months, or that a progressive decline is happening with him. If the EEG is the same as the last one, after a few depakote/lamictal withdrawls, it can't be that this has had an adverse affect on him, or it would show in seizure activity - wouldn't it??? Is he really getting more toxic with each reduction we do, I just am having such a hard time with the logics, especially when trying to explain it to 's neuro, who doesn't feel 's AED levels are at a theraputic level any more, never mind a toxic level. (Depakote 400 mgs, lamictal 75 mgs, nitrazepam 8.25 mgs) Have to decide what 'plan' to take to the hospital tomorrow, whether to push for an extended admission to do a speedier drug reduction, our schedule of reductions means about 7 more months (at least) to go through. If he were doing okay, I wouldn't mind, am not 'anti drugs' at all, but he is not showing consisitent improvement with each reduction, and I'm sort of starting to feel maybe he was better cognitively pre diet in between (frequent) seizures, than he is now, where we only really have seizures (except those pesky intermittent night ones) when doing lamictal reductions, or he becomes really ill. The other thought we had is that he may have developed ESIS (sleep status), but even if he has, we wouldn't know if that is because we've reduced his meds, or because they need reducing, same old, same old. Anyway, that's where we're at, 's resp issues appear resolved now, so that wee crisis can hopefully be filed away now....just got to figure this other business out. By the way, the 'awake' bout of minor motor status that had on Mon that scared us silly (used to always have this on awakening pre diet - first thing to 'go' when he started the diet) was I think because his ketones were only just 1.5 .(managed to test him about an hour later). He has never been this low before, so pretty definite this allowed the bout of status to happen - haven't seen it since Mon, and his ketones haven't dropped like that again. Anyway, reading his admission notes today, not one staff member at the hospital, including his neuro, have considered this relevant enough to document. Not mentioned anywhere, and we really stressed the point to all the Docs (and there were many) that examined him. A few notes made about their opinion the depakote has been taken too low, but keto treatment obviously not considered important enough. Really capped the day off!!! Off to sleep on it all, Hill in NZ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 I have no idea if this is related or not - but the first time Mike was admitted for breathing problems he was so tired all he did when we got a bed was sleep. Then the next day he was happy and awake but just not " right " and slurring words and off balance falling over his own feet. We were discharged that day and things got better by the weekend (discharged on Thursday). Not sure if there is some connection or not but that is what happened with us. richard & susan hill wrote: > Hi all, my 'turn' to be home, thanks for all the messages re advice > on the resp distress and those asking after . > may be out of hospital tomorrow, am not sure if I want this or > not. Cognitively, he is 'toast', lurching everywhere, drooling, > slurring, you would swear he was in NCS, but an EEG yesterday says > definitely not. It was the same as one a couple of months ago, the odd > spike and wave, more on eye closing, but overall, one of his best in 2 > yrs! I don't get it, if this is not behaviour from frequent seizure > activity, what on earth is it. Love to think it is med toxicity, that > we can eventually 'fix', but I just don't know any more. Really quite > worried that some 'damage' at some stage has occurred over the past > couple of months, or that a progressive decline is happening with him. > If the EEG is the same as the last one, after a few depakote/lamictal > withdrawls, it can't be that this has had an adverse affect on him, or > it would show in seizure activity - wouldn't it??? > Is he really getting more toxic with each reduction we do, I just am > having such a hard time with the logics, especially when trying to > explain it to 's neuro, who doesn't feel 's AED levels are > at a theraputic level any more, never mind a toxic level. (Depakote > 400 mgs, lamictal 75 mgs, nitrazepam 8.25 mgs) > Have to decide what 'plan' to take to the hospital tomorrow, whether > to push for an extended admission to do a speedier drug reduction, our > schedule of reductions means about 7 more months (at least) to go > through. If he were doing okay, I wouldn't mind, am not 'anti drugs' > at all, but he is not showing consisitent improvement with each > reduction, and I'm sort of starting to feel maybe he was better > cognitively pre diet in between (frequent) seizures, than he is now, > where we only really have seizures (except those pesky intermittent > night ones) when doing lamictal reductions, or he becomes really ill. > The other thought we had is that he may have developed ESIS (sleep > status), but even if he has, we wouldn't know if that is because we've > reduced his meds, or because they need reducing, same old, same old. > Anyway, that's where we're at, 's resp issues appear resolved > now, so that wee crisis can hopefully be filed away now....just got to > figure this other business out. > By the way, the 'awake' bout of minor motor status that had on > Mon that scared us silly (used to always have this on awakening pre > diet - first thing to 'go' when he started the diet) was I think > because his ketones were only just 1.5 .(managed to test him about an > hour later). He has never been this low before, so pretty definite > this allowed the bout of status to happen - haven't seen it since Mon, > and his ketones haven't dropped like that again. Anyway, reading his > admission notes today, not one staff member at the hospital, including > his neuro, have considered this relevant enough to document. Not > mentioned anywhere, and we really stressed the point to all the Docs > (and there were many) that examined him. A few notes made about their > opinion the depakote has been taken too low, but keto treatment > obviously not considered important enough. Really capped the day > off!!! > Off to sleep on it all, > Hill in NZ > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 Everyone certainly has an opinion, what works for some won't work for others. My argument against proceeding w/ weaning, even faster, is that is dealing with what seems to be a very medically unstable child. Personally, in that situation, I would think the best thing to do first is get him stable. I've been following this list for a number of years. I have seen parents do everything in their power to wean off meds, only to end up worse than before at the end of the day. The goal here is a healthy, stable child. Hopefully seizure free. Something sounds very wrong with , whether or not it is showing up on his EEG. Maybe the meds are helping and maybe not. It's a horrible thing not to know. But, when a child is this sick and seemingly this unstable, quickly withdrawing the meds can make a bad situation worse. My guess is that's more the norm than the exception. Nothing wrong with weaning, but always better to use caution. Some kids needs the meds to be seizure free. Some kids do better without them. My kid is almost the same either way, except his EEG looks better on the meds. He has been both weaned completely and eventually put back on. It really just depends on the kid. The focus is better health and fewer seizures....many accomplish that on meds too. Just another way of looking at it... Barb Swoyer, Jake's mom Re: - hospital > , > > I say this very hesitantly, knowing that I really know nothing at all, but here goes: > > I really think you should consider pursuing the drug wean, maybe even faster than you were. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 Barb, Would be saying exactly the same, and haven't touched meds for 3 weeks, (was in fact considering upping depakote again last week before the resp thing hit) but his EEG is all but clear when he is awake, stopping a wean is done because the kiddie has seizures as a result of withdrawing the meds. This is why he had an EEG, to see if the latest reduction, or illness in the weekend had caused a loss of (sub clinical)seizure control. Nope, definitely (clinical) seizures in the weekend when in resp distress with low ketones, but none visible since his hosp admission (aint that always the way). The issue of one med rising as the other one is reduced is all I can think of as far as AEDs go, he is not great when he wakes, but is 10 time worse an hour later after breakfast and meds. Drooling, 'lurching', slurring, hyperactive, 'not there'. The only thought we had was to withhold one, or all of his morn meds for an hour or 2 today and see if the downhill slide happens still, risky though, still pondering.....will decide shortly, wish us luck Hill Re: - hospital > Sorry to hear this, have been trying to follow along. > > Why do you think he is toxic? From his behavior? > Are you weaning all meds at once or just Lamictal? Are you trying to wean > one or all? Are you weaning to see if he'll improve? > If he's worse, as you wean, why are you continuing? Maybe he needs it? > 3 meds is alot, I agree, but if he's worse without them, his stablility is > the goal, not no meds, right? > How could he be getting more toxic as you reduce? Doesn't make sense to me > at all. Also, he is not on huge amounts of meds.... > > I'm not trying to challenge you , you have enough stress for sure!! > Just questioning what I read here. You sound very conflicted and > overwhelmed....understandable!!! But is the weaning stressing you also? I > guess I would just think...he's not very stable right now. Why push the > weaning on top of it all? In the hopes of him improving? Just trying to > understand.... > hang in there, and hoping for a better time for - > Barb Swoyer > > > > Is he really getting more toxic with each reduction we do, I just am > having such a hard time with the logics, especially when trying to explain > it to 's neuro, who doesn't feel 's AED levels are at a > theraputic level any more, never mind a toxic level. (Depakote 400 mgs, > lamictal 75 mgs, nitrazepam 8.25 mgs) > > > Have to decide what 'plan' to take to the hospital tomorrow, whether to > push for an extended admission to do a speedier drug reduction, our schedule > of reductions means about 7 more months (at least) to go through. If he were > doing okay, I wouldn't mind, am not 'anti drugs' at all, but he is not > showing consisitent improvement with each reduction, and I'm sort of > starting to feel maybe he was better cognitively pre diet in between > (frequent) seizures, than he is now, where we only really have seizures > (except those pesky intermittent night ones) when doing lamictal reductions, > or he becomes really ill. > > > > > > > " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " > > List is for parent to parent support only. > It is important to get medical advice from a professional keto team! > Subscribe: ketogenic-subscribe > Unsubscribe: ketogenic-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 richard & susan hill wrote: > Is he really getting more toxic with each reduction we do, I just am > having such a hard time with the logics, especially when trying to > explain it to 's neuro, who doesn't feel 's AED levels are > at a theraputic level any more, never mind a toxic level. (Depakote > 400 mgs, lamictal 75 mgs, nitrazepam 8.25 mgs) > Barb S made some good points, problem is there is no way to tell whether the kid needs the drug or they are hurting things until after the fact, hindsight is 100%. One comment I can make - I have seen kids toxic on the depakote with the diet, seizures out of control, drs demanding dose be increased because its it way below theraputic values. I know of a few parents who went the other way and reduced the drugs, things improved, of course sometimes only after getting worse.. Seems like with depakote, with every drop it can get worse, the lower the level, the worse the effect until its all gone. But its all a geussing game. Follow your gut, make a choice, try to commit to stick it out for at least four week, preferably a little longer and then reassess Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 , Thanks for the input, home now, big battle before we left, still no wiser. Neuro jumped on one of my theories that may be experiencing more sub clinical sleep seizure activity since the last few med reductions, but refused an overnight EEG to find out for sure. Probably wouldn't help that much anyway, haven't got an overnight baseline one to compare it to in the past year. Also, the hole in this theory is that although 'shaky' when he wakes up, 's balance, speech etc is nowhere near as bad as it goes after the meds. If sleep seizures were the culprit, I would expect to see this even more when he first wakes, and an improvement as the morn goes on, not the other way round. Onto the 2nd theory of somehow still being toxic, discounted it most abruptly, I quoted some e-mails I had saved about needing to wean in tandem, meds being more potent on the diet etc, he listened, but got really defensive when asked if he had any medical literature on the diet/meds combination. Anyways, basically back to figuring it out ourselves, will keep you posted, Hill in NZ - hospital > > > Hi all, my 'turn' to be home, thanks for all the messages re advice on the resp distress and those asking after . > may be out of hospital tomorrow, am not sure if I want this or not. Cognitively, he is 'toast', lurching everywhere, drooling, slurring, you would swear he was in NCS, but an EEG yesterday says definitely not. It was the same as one a couple of months ago, the odd spike and wave, more on eye closing, but overall, one of his best in 2 yrs! I don't get it, if this is not behaviour from frequent seizure activity, what on earth is it. Love to think it is med toxicity, that we can eventually 'fix', but I just don't know any more. Really quite worried that some 'damage' at some stage has occurred over the past couple of months, or that a progressive decline is happening with him. If the EEG is the same as the last one, after a few depakote/lamictal withdrawls, it can't be that this has had an adverse affect on him, or it would show in seizure activity - wouldn't it??? > Is he really getting more toxic with each reduction we do, I just am having such a hard time with the logics, especially when trying to explain it to 's neuro, who doesn't feel 's AED levels are at a theraputic level any more, never mind a toxic level. (Depakote 400 mgs, lamictal 75 mgs, nitrazepam 8.25 mgs) > Have to decide what 'plan' to take to the hospital tomorrow, whether to push for an extended admission to do a speedier drug reduction, our schedule of reductions means about 7 more months (at least) to go through. If he were doing okay, I wouldn't mind, am not 'anti drugs' at all, but he is not showing consisitent improvement with each reduction, and I'm sort of starting to feel maybe he was better cognitively pre diet in between (frequent) seizures, than he is now, where we only really have seizures (except those pesky intermittent night ones) when doing lamictal reductions, or he becomes really ill. > The other thought we had is that he may have developed ESIS (sleep status), but even if he has, we wouldn't know if that is because we've reduced his meds, or because they need reducing, same old, same old. > Anyway, that's where we're at, 's resp issues appear resolved now, so that wee crisis can hopefully be filed away now....just got to figure this other business out. > By the way, the 'awake' bout of minor motor status that had on Mon that scared us silly (used to always have this on awakening pre diet - first thing to 'go' when he started the diet) was I think because his ketones were only just 1.5 .(managed to test him about an hour later). He has never been this low before, so pretty definite this allowed the bout of status to happen - haven't seen it since Mon, and his ketones haven't dropped like that again. Anyway, reading his admission notes today, not one staff member at the hospital, including his neuro, have considered this relevant enough to document. Not mentioned anywhere, and we really stressed the point to all the Docs (and there were many) that examined him. A few notes made about their opinion the depakote has been taken too low, but keto treatment obviously not considered important enough. Really capped the day off!!! > Off to sleep on it all, > Hill in NZ > > > > > Quote Link to comment Share on other sites More sharing options...
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