Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 Lainna, I wish we lived closer to each other. I cannot believe how much your daughter and Ruby are alike. Ruby can now count to 30, she sits and reads my daytimer. She does all of that stuff, letters, shapes, animals, etc. She's been reading since she was younger than 2, I am not sure how long because she was pretty nonverbal back then. I used to write animal names and she would make the animal sounds so I knew she could read. Now she reads EVERYTHING, toothpaste, my makeup, magazines, anything in front of her she sounds out and reads! I don't want her to lose this with chelation! She also goes off and loses focus too. It's frustrating, she can be so with me all day and then the next day she's off again. But, the good days are getting to be more than the bad now, so that's good. I just have to stop trying new things for a while and stay with what we're doing now. When is your daughter's birthday? > > > > Yeah THAT is effed up. The thing that REALLY gets me- is in say.. > 10 years, this will all be normal and typical and it will be TOO LATE > for our children. > > > > > > > > > > ____________ _________ _________ __ > > From: sarah_empirhe <seastwell@ ..> > > To: mb12 valtrex@ yahoogroups. com > > Sent: Tuesday, October 28, 2008 5:50:05 PM > > Subject: Re: DISCOURAGED! !! > > > > > > > She also told me that Ruby can't have yeast in her blood, if she > did > > > she'd be very sick... > > > > WHAT?! Does she think she's OKAY?!! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 Thanks Christel! I am getting much better at observation with Ruby. I had to take her off of the SNT, I don't think she can handle the B vits yet. She COULD NOT handle Threelac at all. She is so much better now that I stopped those things. I do have to get better with her enzymes. I forget to give them some days and it does affect her. I love hearing about recovered kids who are also hyperlexic! Gives me hope. > > > > > > Yeah THAT is effed up. The thing that REALLY gets me- is in say.. > > 10 years, this will all be normal and typical and it will be TOO LATE > > for our children. > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > From: sarah_empirhe <seastwell@ ..> > > > To: mb12 valtrex@ yahoogroups. com > > > Sent: Tuesday, October 28, 2008 5:50:05 PM > > > Subject: Re: DISCOURAGED! !! > > > > > > > > > > She also told me that Ruby can't have yeast in her blood, if she > > did > > > > she'd be very sick... > > > > > > WHAT?! Does she think she's OKAY?!! > > > > > > > > > > > > ------------------------------------------------------------------------------ > > > > No virus found in this incoming message. > Checked by AVG - http://www.avg.com > Version: 8.0.175 / Virus Database: 270.8.3/1746 - Release Date: 10/25/2008 5:55 PM > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 > > i hope you filed a VARS report for that polio shot > >It was actually the DTaP, but I was not able to- you have to have seizure AND long term neurological damage (which I can't prove). Believe me, I tried. ALso because a fever didn't accompany the seizure, the docs won't accept that was the reason for it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2008 Report Share Posted October 30, 2008 Mainstream Medicine is pretty worthless for our kids. We've all been there. You took your punch. Now it's time to move on and find someone who can help you help your child. Pamela From: mb12 valtrex [mailto:mb12 valtrex ] On Behalf Of If I like you, you'll find out. Sent: Tuesday, October 28, 2008 4:38 PM To: mb12 valtrex Subject: DISCOURAGED!!! I emailed my daughter's primary doctor with a list of testing our new DAN! doctors wants done. Now, our primary is great, open minded and is the one who set us on GFCF path.. HOWEVER- she maintains that vaccines ARE completely safe (I do NOT agree) and that Autism is NOT treatable. I figured we could have these differences... until now. This is the response I just got and I simply do not know what to say or do... " Yes, you have some serious questions. Yes, I do have some reservations. You are seeking advice from a doctor of chiropractic medicine. A chiropractor should be well trained in manipulative medicine. Some are excellent at this. I go to one myself. BUT…. They do not have rigorous training in chemistry, physiology, pharmacology. Many get their `education' from questionable sources and it does not have any scientific support. For this reason, they are prone to put unwarranted importance on non-standard testing, hence her use of a specific lab, not one in this community. I have seen many patients, some desperate to treat their cancer or other fatal illness, spend thousands on non-standard testing. Never have I seen them benefit from either the testing, what the test purportedly told them, or the resulting treatment. Autism, like many other diseases, can occur in multiple settings. Some of the tests that were recommended to you are for inborn disorders of metabolism which are fatal within the first couple of years of life. Behavior changes, of course, go with an infant who is dying of a neurologic disease. Kaelainne clearly isn't one of these kids, she is growing, not dying. Likewise, kids with immune deficiencies, etc. That being said, a couple of the tests do have merit. This would be a cmp (comprehensive chemistry panel) and strep antibodies. PANDAS is a post-strep condition which leads to schizophrenia-type mental illness. Certainly this is something she could acquire. Unfortunately there is no specific treatment for it, so I am not certain what this diagnosis would lead to except knowing the potential is there for other mental impairment as she ages. I know that you would like a cure. I would, too. However, I do have to take these `cures' with a grain of salt. If the person wasn't adequately tested at the beginning, or isn't really normal at the end of treatment (no matter whether the parent wishes so hard that normal is present, so dismisses disease as idiosyncracy and quirks), then nothing has been proven. When I read the anecdotal statement that surround a rare `cure' for autism, generally there is no science being reported, just belief. " I feel like I just got kicked in the gut. I see all of you, with your tests giving you the direction to go in.. and my doctor is saying it's all crap- I DO NOT BELIEVE HER!! I watched Stan's video! I read 's book, I read EVERY post in this group. YOu all are RECOVERING your children!!! I KNOW YOU ARE. Why is it so damn hard for doctors to even CONSIDER that there MAY be another way?? I am so P*SSED right now. I'm sure many of you faced this- what do I do now?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2008 Report Share Posted October 30, 2008 Already on itTo: mb12 valtrex Sent: Thursday, October 30, 2008 2:14:46 PMSubject: RE: DISCOURAGED!!! Mainstream Medicine is pretty worthless for our kids. We've all been there. You took your punch. Now it's time to move on and find someone who can help you help your child. Pamela From: mb12 valtrex@ yahoogroups. com [mailto:mb12 valtrex @yahoogroups. com] On Behalf Of If I like you, you'll find out. Sent: Tuesday, October 28, 2008 4:38 PM To: mb12 valtrex@ yahoogroups. com Subject: DISCOURAGED! !! I emailed my daughter's primary doctor with a list of testing our new DAN! doctors wants done. Now, our primary is great, open minded and is the one who set us on GFCF path.. HOWEVER- she maintains that vaccines ARE completely safe (I do NOT agree) and that Autism is NOT treatable. I figured we could have these differences. .. until now. This is the response I just got and I simply do not know what to say or do... "Yes, you have some serious questions. Yes, I do have some reservations. You are seeking advice from a doctor of chiropractic medicine. A chiropractor should be well trained in manipulative medicine. Some are excellent at this. I go to one myself. BUT…. They do not have rigorous training in chemistry, physiology, pharmacology. Many get their `education' from questionable sources and it does not have any scientific support. For this reason, they are prone to put unwarranted importance on non-standard testing, hence her use of a specific lab, not one in this community. I have seen many patients, some desperate to treat their cancer or other fatal illness, spend thousands on non-standard testing. Never have I seen them benefit from either the testing, what the test purportedly told them, or the resulting treatment. Autism, like many other diseases, can occur in multiple settings. Some of the tests that were recommended to you are for inborn disorders of metabolism which are fatal within the first couple of years of life. Behavior changes, of course, go with an infant who is dying of a neurologic disease. Kaelainne clearly isn't one of these kids, she is growing, not dying. Likewise, kids with immune deficiencies, etc. That being said, a couple of the tests do have merit. This would be a cmp (comprehensive chemistry panel) and strep antibodies. PANDAS is a post-strep condition which leads to schizophrenia- type mental illness. Certainly this is something she could acquire. Unfortunately there is no specific treatment for it, so I am not certain what this diagnosis would lead to except knowing the potential is there for other mental impairment as she ages. I know that you would like a cure. I would, too. However, I do have to take these `cures' with a grain of salt. If the person wasn't adequately tested at the beginning, or isn't really normal at the end of treatment (no matter whether the parent wishes so hard that normal is present, so dismisses disease as idiosyncracy and quirks), then nothing has been proven. When I read the anecdotal statement that surround a rare `cure' for autism, generally there is no science being reported, just belief." I feel like I just got kicked in the gut. I see all of you, with your tests giving you the direction to go in.. and my doctor is saying it's all crap- I DO NOT BELIEVE HER!! I watched Stan's video! I read 's book, I read EVERY post in this group. YOu all are RECOVERING your children!!! I KNOW YOU ARE. Why is it so damn hard for doctors to even CONSIDER that there MAY be another way?? I am so P*SSED right now. I'm sure many of you faced this- what do I do now?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2008 Report Share Posted November 1, 2008 The doctor's email could be admissable as evidence in a malpractice claim. --penumbra > > If you want to do something about this, I would fully document where your child is now, then once he recovers, document that and send it all to Dr. Arrogant. Maybe that will change her tune about what is possible in autism. > > Kim Quote Link to comment Share on other sites More sharing options...
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