Guest guest Posted December 12, 2008 Report Share Posted December 12, 2008 Thanks Jeanie for this info! We avoid tests if able! Our son has had probe test not only on eeg/head but all over his body. That stuff does smell and is very hard to get off the skin. The one i get really nervous about is regular use of mri/ct's/exray's(these are carcinogens)!! With my sons brain abnormality, we had to really avoid them wanting to do these tests a lot!! Jennie<>< From: megsoracco <megsoraccogmail (DOT) com>Subject: Re: white oxalates in diaperTo: miralax@yahoogroups .comDate: Thursday, December 11, 2008, 7:22 AM Angie wasn't ever diagnosed with seizures really, when she had an EEG,there was abnormal activity recorded, and that was all I was told.They keep wanting to do EEG's on her, which will not happen. It took 2hours to hook her up, it was a 24 hour EEG, and then she had to weararm restraints the whole 24 hours so as to not pull the leads off. Theneuro doesn't get how awful this is. I think I will give them a call,say she has constipation, and ask about something else. I know theonly way we will know if she needs it is another EEG, but I cannot puther through that again. Why do docs not care about this part ofmedicine????It looks like it may also be the Depakote causing her troubles. WOW!> >> > I was wondering, would Depakote sprinkles do this as well, I mean, > not get processed and come out in diaper? is on these as > well, so not sure. I > am thinking its not Depakote and more > Miralax, because it gets less and less and seems to burn, I cannot > find any literature at all about Depakote in stools and burning.> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2008 Report Share Posted December 12, 2008 I think it's great to advocate to avoid unnecessary or dangerous tests and to advise parents about the chemicals used in them. I think it's great Jeanie you were able to avoid more EEG's. I wish it were that way for all children. I'm not sure any of us have all the experience and information we need to make that determination though whether it is or isn't. Sharry Re: white oxalates in diaperTo: miralax@yahoogroups .comDate: Thursday, December 11, 2008, 7:22 AM Angie wasn't ever diagnosed with seizures really, when she had an EEG,there was abnormal activity recorded, and that was all I was told.They keep wanting to do EEG's on her, which will not happen. It took 2hours to hook her up, it was a 24 hour EEG, and then she had to weararm restraints the whole 24 hours so as to not pull the leads off. Theneuro doesn't get how awful this is. I think I will give them a call,say she has constipation, and ask about something else. I know theonly way we will know if she needs it is another EEG, but I cannot puther through that again. Why do docs not care about this part ofmedicine????It looks like it may also be the Depakote causing her troubles. WOW!> >> > I was wondering, would Depakote sprinkles do this as well, I mean, > not get processed and come out in diaper? is on these as > well, so not sure. I > am thinking its not Depakote and more > Miralax, because it gets less and less and seems to burn, I cannot > find any literature at all about Depakote in stools and burning.> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2008 Report Share Posted December 12, 2008 you're right Sharry, but I was really just stating facts about the chemical they use, not giving any medical advise on what one should do or not do..............just offering facts......... From: megsoracco <megsoraccogmail (DOT) com>Subject: Re: white oxalates in diaperTo: miralax@yahoogroups .comDate: Thursday, December 11, 2008, 7:22 AM Angie wasn't ever diagnosed with seizures really, when she had an EEG,there was abnormal activity recorded, and that was all I was told.They keep wanting to do EEG's on her, which will not happen. It took 2hours to hook her up, it was a 24 hour EEG, and then she had to weararm restraints the whole 24 hours so as to not pull the leads off. Theneuro doesn't get how awful this is. I think I will give them a call,say she has constipation, and ask about something else. I know theonly way we will know if she needs it is another EEG, but I cannot puther through that again. Why do docs not care about this part ofmedicine????It looks like it may also be the Depakote causing her troubles. WOW!> >> > I was wondering, would Depakote sprinkles do this as well, I mean, > not get processed and come out in diaper? is on these as > well, so not sure. I > am thinking its not Depakote and more > Miralax, because it gets less and less and seems to burn, I cannot > find any literature at all about Depakote in stools and burning.> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2008 Report Share Posted December 12, 2008 Hi Sharry! you are write that we cant always determine certain situations and need to trust the docs(I say this with some leariness). When I say I try to avoid them, this is with him having so many I couldnt even begin to count them. I do feel doctors(not all) are a little to quick on some things(without deep research) to test/prescribe. Ultimatily sometimes it is up to us parents to do that part. You well find that if you do the research and then discuss these concerns with doctors, most well work things out for the good of the child. I(Jennie) am the one who said we try to avoid them sometimes! Jeanie is the one who brought the research on the toxins and I so appreciate she did. We need wisdom/knowledge for our childrens sake. We discovered that for instance, my son is missing part of his brain. Therefor doctors come out of the wood work and all want to do so many different tests(repeat after repeat) do to the lack of knowledge on the condition. This is fine, but the mri, ct's have to be limited due to the dangers of them, some are very neccessary(infact this is what found our sons condition). Just saying we got to try to balance and make decisions when the line is crossed at the risk of the childs health. Antibiotics are a big example. We trusted to give them and give them, but was left hanging with damage of overuse. Many of our kids write in this groups and there issues are a direct link to antibiotics. We need to work with the doctors and if he/she cant understand that then look for another!! Jennie<>< From: megsoracco <megsoraccogmail (DOT) com>Subject: Re: white oxalates in diaperTo: miralax@yahoogroups .comDate: Thursday, December 11, 2008, 7:22 AM Angie wasn't ever diagnosed with seizures really, when she had an EEG,there was abnormal activity recorded, and that was all I was told.They keep wanting to do EEG's on her, which will not happen. It took 2hours to hook her up, it was a 24 hour EEG, and then she had to weararm restraints the whole 24 hours so as to not pull the leads off. Theneuro doesn't get how awful this is. I think I will give them a call,say she has constipation, and ask about something else. I know theonly way we will know if she needs it is another EEG, but I cannot puther through that again. Why do docs not care about this part ofmedicine????It looks like it may also be the Depakote causing her troubles. WOW!> >> > I was wondering, would Depakote sprinkles do this as well, I mean, > not get processed and come out in diaper? is on these as > well, so not sure. I > am thinking its not Depakote and more > Miralax, because it gets less and less and seems to burn, I cannot > find any literature at all about Depakote in stools and burning.> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2008 Report Share Posted December 12, 2008 I totally agree. But I've also been on a long journey in perhaps the opposite direction that some parents are able to make. I started as a parent who avoided everything, then had to come to terms with the necessity of some things. I try now to count my blessings that we get to avoid anitbiotics, because I have some friends who would rather not hear about how bad they are because their child really has to have them. Same thing for kids with serious hydrocephalus and the need for scans. Don't even like to think about that one.... Just keeping an open mind, and for me that meant moving in the direction of being understanding about the helpfulness of some interventions at some times. Guess we are all offered a different window into the world..... Sharry Re: white oxalates in diaperTo: miralax@yahoogroups .comDate: Thursday, December 11, 2008, 7:22 AM Angie wasn't ever diagnosed with seizures really, when she had an EEG,there was abnormal activity recorded, and that was all I was told.They keep wanting to do EEG's on her, which will not happen. It took 2hours to hook her up, it was a 24 hour EEG, and then she had to weararm restraints the whole 24 hours so as to not pull the leads off. Theneuro doesn't get how awful this is. I think I will give them a call,say she has constipation, and ask about something else. I know theonly way we will know if she needs it is another EEG, but I cannot puther through that again. Why do docs not care about this part ofmedicine????It looks like it may also be the Depakote causing her troubles. WOW!> >> > I was wondering, would Depakote sprinkles do this as well, I mean, > not get processed and come out in diaper? is on these as > well, so not sure. I > am thinking its not Depakote and more > Miralax, because it gets less and less and seems to burn, I cannot > find any literature at all about Depakote in stools and burning.> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2008 Report Share Posted December 12, 2008 I see where your coming from!! Warning of over use dangers could put fear in those that may have to have neccessary tests...!! I understand your point/makes sense/Ill work on that one, thank you:) Ugh, hydro... we have had to go there a few times. Those with ACC tend to have this condition a lot! My son(ACC) has enlarged ventricals(very large, very obvious looking at him). Many test to rule that out over the years, thank GOD his nuero said if he hasnt gotten by his age now the odds are he wont get it(hydrocephalus)!! My ACC group has many members with hydro and it is very very heartbreaking!! I agree we need interventions/tests, but limited! Jennie<>< From: megsoracco <megsoraccogmail (DOT) com>Subject: Re: white oxalates in diaperTo: miralax@yahoogroups .comDate: Thursday, December 11, 2008, 7:22 AM Angie wasn't ever diagnosed with seizures really, when she had an EEG,there was abnormal activity recorded, and that was all I was told.They keep wanting to do EEG's on her, which will not happen. It took 2hours to hook her up, it was a 24 hour EEG, and then she had to weararm restraints the whole 24 hours so as to not pull the leads off. Theneuro doesn't get how awful this is. I think I will give them a call,say she has constipation, and ask about something else. I know theonly way we will know if she needs it is another EEG, but I cannot puther through that again. Why do docs not care about this part ofmedicine????It looks like it may also be the Depakote causing her troubles. WOW!> >> > I was wondering, would Depakote sprinkles do this as well, I mean, > not get processed and come out in diaper? is on these as > well, so not sure. I > am thinking its not Depakote and more > Miralax, because it gets less and less and seems to burn, I cannot > find any literature at all about Depakote in stools and burning.> > > >> Quote Link to comment Share on other sites More sharing options...
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