Guest guest Posted March 5, 2001 Report Share Posted March 5, 2001 Carol - Yes, we've tested for Landau-Kleffner Syndrome, as well as a multitude of blood panels, EEGs, MRIs, PET scans, etc. etc. All came up with nothing. Sometimes I watch the old videos to assure myself that I wasn't imagining having a normal child )o: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2001 Report Share Posted March 5, 2001 Are you chelating? Re: [ ] Regressive autism >Adam - My daughter, now age 5 1/2, is DEFINITELY the victim of regressive >autism. At age 2, she had 100+ words in her vocabulary and was exceptionally >sociable and " normal " in every way. Between 2 and 2 1/2 she started slipping >away, and at age 3 she was diagnosed with autism. It's interesting that the >psychologist who diagnosed her that it was very unusual for a child to lose >milestones like that. We've been trying a lot of different treatments and >methods, but she's still (sadly) very autistic. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2001 Report Share Posted March 5, 2001 Hi, I'm a little behind in posts, but wanted to reply to this since I just finished watching all the videos of my son from birth on. I haven't been able to do it since he was diagnosed last May. It is just shocking to watch the transformation. How can anyone watch these videos and tell us that autism is not an acquired disease? was normal and I defy anyone to say otherwise (I was watching them to copy them for a CAN funded study on early detection) until two weeks after his 15 month shots (DTP) when I couldn't get him to look at the camera. Autism experts tell me I'm very lucky because he is so high functioning, but we have lost so much of him. He is also gluten contaminated this week and way more out of it than usual. I just cannot get his attention. And I found myself crying at the doctor's office this morning as I listened to a baby crying and remembered that at the fifteen month checkup, I sent in with his dad because I was having my gallbladder removed and they made them wait so long that had screamed for 30 minutes before he got his shots, and his dad just couldn't calm him down. Probably not related to his autism and I don't want to make his dad feel bad, but not ideal circumstances, I would have walked out of the office. So on his good days, I think we will get him back, but as has been mentioned already, it will bankrupt us, and put enormous stress on our whole family, and I just hope we can make it through. I'm sorry to rant, I'm sorry you are all going through the same mess as I am, I am very grateful that you are all here as a tremendous source of support. Diane in NC (having a bad day) > > > > > > > ---------- > > From: " Adam Feinstein " <LookingUp@c...> > > autism-awareness-actionegroups > > Subject: Regressive autism > > Date: Sat, Mar 3, 2001, 6:21 pm > > > > > > > > > > Hello all, > > > > I am very interested in the prevalence of regressive (or >late-onset) > > autism, when a child seems to be progressing normally (or even ahead >of > > schedule) and then loses language and other skills. That, I believe, >is what > > happened to my son, ny. > > > > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2001 Report Share Posted March 5, 2001 Diane, I am so rigt there with ya babe and have experienced the same thing. It is enormously difficult and when you look at what they were and where they were going, it does seem such a waste. We all have our bad days and I hope yours passes quickly. Much love, in CA Regressive autism> > Date: Sat, Mar 3, 2001, 6:21 pm> >> >> >> >> > Hello all,> >> > I am very interested in the prevalence of regressive (or>late-onset)> > autism, when a child seems to be progressing normally (or even ahead>of> > schedule) and then loses language and other skills. That, I believe,>is what> > happened to my son, ny.> >>>_________________________________________________________________Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2001 Report Share Posted March 5, 2001 My daughter, I believe, had regressive autism. Between 15-18 months was when she regressed. She lost her speech, quite wanting to interact and became totally withdrawn. She started self-stimming. She also lost her ability to eat solid foods during this time. I think that this is the most devastating type of autism. Your child brain is robbed of being your child, and you are left with a child who would no longer respond to her name. I watch video tapes of my daughter when we did the " What does the Sheep say " and she would respond " Baa " looking and smiling at the camera. I cry everytime is watch it and think there is my beautiful daughter. Where did all that go? Jill (jillplato@...) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2001 Report Share Posted March 6, 2001 Efalex is a combination of essential fatty acids. You can look online under search to purchase it. Several over the counter places, drugstores, supermarkets,etc. carry it. Good Luck! Rawlings Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2001 Report Share Posted March 6, 2001 My son was a normal baby in every way, reached all milestones above schedule,ie walked at 9 mths, had a vocabulary of more than 25 words at 12 mths, knew his abc's at 15 mths, etc..., had a lot of " personality " , laughing, singing, playing; until 22 mths when he had a series of unexplained high fevers. This was about 3 mths after his MMR. We did not realize at the time what was happening, as it happened very gradually. I don't believe he lost skills, rather he stopped gaining. He kept his speech but did not gain receptively and expressively. He became withdrawn and uninterested in all that he loved before, I remember for his 3rd birthday I had planned a big backyard party, had a clown come and do a magic show, singalong, etc, and he was totally out of it. All the other kids had a blast except the birthday boy. I remember having to " make " him blow out his candles kicking and screaming, he had no interest whatsoever in the clown, the cake, the presents, he just held his balloon and had this distant look in his eyes. When I compare the photos or videos of his third year and second year you'd think it were two different kids. I have no doubt he would be a typical kid, if he had not been damaged by the shots and the final blow, the MMR... Carrol _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2001 Report Share Posted March 6, 2001 I just thought some of you might be interested. We recently received the hair tests of two of our NT kids. Interestingly enough, they did NOT show the high accumulations of toxins their brother did, but they both had a more extreme scatter pattern than his! So what does this mean? Barb Re: [ ] regressive autism Barb: I made the comment about being primed in the womb. I think this is where genetics comes into it. It's how environmental toxins, thimerosol exposure etc interacts with our genetic profile. I wonder about this everyday, as my NT children may one day make me a grandmother. It's a huge fear of mine that their children are more at risk. This is why I think we need research on all fronts. Joyce [ ] regressive autism I'm also curious about the comment that someone made about their son being " primed in the womb " . I've wondered frequently why so many of these kids seemed to make the turn at 15 to 18 months, when my son was gone at 4. Did he have a greater toxic load in his body from me? I don't have fillings, or Rh issues, but I did live overseas and received frequent injections. But so did my sister, and she has none of these issues with her daughter? Ideas? Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2001 Report Share Posted March 6, 2001 In a message dated 3/6/01 7:09:52 AM Pacific Standard Time, cverasamy@... writes: << I don't believe he lost skills, rather he stopped gaining. He kept his speech but did not gain receptively and expressively. He became withdrawn and uninterested in all that he loved before, I remember for his 3rd birthday I had planned a big backyard party, had a clown come and do a magic show, singalong, etc, and he was totally out of it. All the other kids had a blast except the birthday boy. I remember having to " make " him blow out his >> Ditto with my son. Carol G Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2001 Report Share Posted March 6, 2001 Jill - I agree with you completely. I also cry when I watch videos of my little 2 year old saying " Hello Mommy - this is fun! " . It's devastating to have them, then to lose them. Much worse, I think, than to have a child who is autistic from birth. It seems that the heartache doesn't go away. I only hope that they find a cure. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2001 Report Share Posted March 7, 2001 Count our son on the regressive side. All seemed fine until about 2.9-3 when his behavior and language went sideways then downhill. The ubiquitous Thief-in-the-Night seemed to walk off with our boy. He has language and seems to be making a recovery, but it is very slow. It's like 3 steps forward, 2 back. Like most other people here, we've tried everything (not yet chelation) and are hoping for the best. I think, ultimately, only time will tell. Tim Adam Feinstein wrote: ---------- From: "Adam Feinstein" <LookingUp@...> autism-awareness-actionegroups Subject: Regressive autism Date: Sat, Mar 3, 2001, 6:21 pm Hello all, I am very interested in the prevalence of regressive (or late-onset) autism, when a child seems to be progressing normally (or even ahead of schedule) and then loses language and other skills. That, I believe, is what happened to my son, ny. The general consensus among the autism experts I've talked to (including Geraldine Dawson, Ed Cook, ph Piven) is that the assessment of the proportion of total autism cases which is regressive has actually gone DOWN. That surprised me, but Dawson, for instance, believes that, whereas she used to think the percentage was about 25 per cent, she has revised this in the light of the massive autism study her team has been carrying out, and she now thinks that the figure is more likely to be 10 per cent. I would like to carry out my own, very unscientific straw poll of list members who are parents of autistic children. Which of you has a child with regressive autism? I'd be fascinated to hear from you. Many thanks and best wishes, Adam Feinstein Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2001 Report Share Posted March 7, 2001 Us too. Tristan was a little odd as a baby, but he IS a member of MY family. He did make eye contact, had a couple words and would wave bye bye. When he got the MMR he stopped progressing, then regressed after the DPT. Like the old stories of the Fae stealing children in the middle of the night and leaving changelings in their place. I even asked Tristan once if he was a Pookah (the changeling faery) and he shook his head NO, vigorously as he laughed maniacally. Hmmmmm, I think thee protest too much. Odd thing is, he doesn't shake his head no. He still is not verbal, but has been making gains lately. I'm looking forward to his birthday sunday (6) as it will be the first time for him to blow out his candles. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2004 Report Share Posted June 18, 2004 Hi I can fully understand your need to know about regression, my 1st son was diagnosed when I was pregnant with my next, and was told that he must have been autistic from birth - I just didn't notice! I have videos where at 1 yr he was sitting on strangers laps having stories read, following people around the room, and investigating new born babies, he waved and smiled all the time. It was probably at 20-24 months when he started to lag behind his peers and he became incredibly hyperactive. This probably isn't much comfort to you in your present situation - I had the same concerns and was visited by a neuro developmental therapist on a regular basis who explicitly told me very early on than my second son was neuro typical. Regards NZ > Hello! > > I am interested in hearing from those of you whose children developed completely normally and then had an obvious regression. > > I ask because my 3-yr old (almost 4!) was affected mildly from birth. I know this looking back but didn't realize until he was about 6 mos old that something was just a bit off, mostly with his eye contact and social skills. He had points where he seemed to regress more (roseola, MMR, intro of dairy in diet), but definitely was born with subtle differences. > > My new baby boy,(4 wks) much to my joy, already looks me straight in the eye, gazes at me for minutes at a time, and smiles. never made good, lasting eye contact until he was older and wouldn't smile at people-- only toys and objects-- for the longest time. So I sigh a sigh of relief for now, but plan on being extremely paranoid for the next couple of years. > > What I'd like to know is your thoughts on what could have triggered the regression in your children. I know the immune dysfunction is an inborn tendency, but why is it expressed at different points for different kids/adults? And why so often between the ages of 1 and 2 for autism? Is it a true regression or were the signs just too subtle to recognize before that age? > > Thanks for your input! Feel free to email privately if you don't want to clog up the list.. beckeric@e... > > Becky > > > Quote Link to comment Share on other sites More sharing options...
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