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I have been reading articles regarding Asperger's Syndrome in Silicon Valley. I'm sure through one of these you would be able to find where they got their results from; studies. The one article that I found very interesting was found here: "Wired 9.12: The Geek Syndrome". Interesting reading.
I have been reading articles regarding Asperger's Syndrome in Silicon Valley. I'm sure through one of these you would be able to find where they got their results from; studies. The one article that I found very interesting was found here: "Wired 9.12: The Geek Syndrome". Interesting reading.
I think we should look more into the "recovery" instead of the "maintenance" of autism in many cases! Just my personal opinion.
There's definitely merit to this thought. In general, searching for answers is in order.
But on a personal level, it makes my heart hitch every time I read something to this effect, because for us, none of the "miracle" interventions have worked. We saw a DAN! doctor who prescribed all sorts of things for our son's electrolytes, did the GF/CF diet for two solid months (results were supposed to be seen in "as little as three to four days!" but "perhaps as long as one month"), probiotics, grapefruit seed extract, Vitamin B6, and a vitamin B complex. ETA: Oh yeah...and fish oils, then specifically a cod liver oil that had to be refrigerated during shipment, then an EFA complex that came from something else...I don't even remember what any more.
But then I always hear of another mother who tried something else, or tried what I did but for longer, or more intensively or less intensively or in a different combination, or via injection v. orally...or in a different order...and I get so overwhelmed and just want to crumble to the floor and cry. Because part of me says, Duh, JerZ, you've already TRIED all this stuff. But the other part says, What if there's just that one exactly correct therapy or series or if it should have been a different DAN! doctor and you had just tried only one more little thing...maybe you're dooming your own son...
It's pretty horrible to be one of the parents for whom none of the "miracles" worked. You're told by other people (some of whom haven't even tried a specific therapy, but who vaguely "heard of someone" who did--or if it's a celebrity, like Jenny McCarthy) that maybe you did the therapy wrong .05% of the time and that's what damned your child to eternal autism. It's so hard...
My toddler now goes to the same Early Intervention class my middle son went to, though he (the toddler) only appears to have a speech delay and none of the social delays and autistic traits. The woman who works there is CONSTANTLY harping on me to re-try GF/CF. She GRILLED me on this the other day, her eyes bright, obviously looking for the one thing I could have possibly done wrong for one meal out of those two solid months of torture. She was saying, "What did you feed him?" and when I told her general stuff, she would dig. "What brand? What EXACTLY?" and blah blah. One of the things I named was a Trader Joe's GF/CF cereal. She LEAPT on this to triumphantly crow, "It has since been found that this food contains minute traces of dairy dust!" Okay, she didn't say "dairy dust," I'm just presenting it here in as ludicrous a way as it sounded to me.
I tried to explain that C didn't just not improve on GF/CF; he regressed. Horribly. Hideously. To the point that we literally could not take him out. The point where both my husband and I were sobbing from the violence, screaming, hysteria, the total obvious brain fog, C seeming to not know or understand where he was half the time, etc. (and me pregnant all this time!!!) The woman answered, "Oh, it was withdrawal." I said, "For two months?" She said, "Oh no, I still think that Trader Joe's cereal..." "But before that, he'd had dairy and wheat all day long, constantly...you're telling me dairy traces due to handling caused an outrageous regression for two solid months?" I asked. "Oh yes! Because it's like cocaine. He gets a little and flips out," she explained. I said, "He didn't do this flip-out thing immediately after the cereal, or X amount of hours after the cereal, and it wasn't any different from the several weeks before that that he hadn't had any of the cereal at all yet." She just gave me that "Oh sure...I don't believe you...you're obviously a lazy mother who just wants to feed her child Cocoa Puffs all day" sort of look.
It's really hard sometimes to hear the miracle stories and question yourself again and to feel at a loss as to which combination to try next, or whether to steel yourself for another try if it was so horrible the first time. It's hard to never be allowed to just accept your child.
ETA: I don't mean to be the voice of doom on this thread, and I'm not saying parents shouldn't at least try this thing. I'm trying to express something incidental that came out for me while reading the thoughts and answers: As a parent, it's expected that maybe you can cure your child, and that if he doesn't get cured and there's something else that could have been done, it's your fault. Nobody comes right out and says this, but it is a HEAVY HEAVY load to carry 24/7, wondering if you, personally, are inadvertently damning your child to Future X instead of rosy Future Y. You can never relax for one minute and just have a normal evening, say, hanging out and laughing with your child because you "should be using this vital 'down-time' as home-based therapy". It's so exhausting on so many levels that parents of NT children can't even imagine it. Yes, there is love and happiness and there are great times...I'm not saying there aren't. I'm just trying to spread understanding in my own way.
JerZ, I'm sure you're doing a good job. Any intelligent, loving mother won't be doing more than you are.
In my family we have Crohn's and Celiac disease, the later being an allergy to gluten, and the possibility of dairy sensitivity too in the effected individulas. I have never seen any problems that would point to autistic behavior.
What did pop out to me in your post was the word 'brain fog'. In my research the only time I have heard that phrase is when people were referring to the effects of antibiotic treatment which killed off the good bacteria in the bowel. Just a thought.
JerZ, I'm sure you're doing a good job. Any intelligent, loving mother won't be doing more than you are.
In my family we have Crohn's and Celiac disease, the later being an allergy to gluten, and the possibility of dairy sensitivity too in the effected individulas. I have never seen any problems that would point to autistic behavior.
What did pop out to me in your post was the word 'brain fog'. In my research the only time I have heard that phrase is when people were referring to the effects of antibiotic treatment which killed off the good bacteria in the bowel. Just a thought.
And that's a great thought, Sgoldie, because C had continuous rolling ear infections from the age of 10 months to the age of 20 months. At 10 months he went into daycare and began getting the ear infections right away. (I should add, though, that there was something "different" about C from the age of about eight weeks.) In his first two months of daycare, he missed twenty-one days due to illness. He was on antibiotics off and on ALL this time. The doctor wouldn't listen to me when I asked whether this was excessive and beg to know whether there was anything else that could be done. Instead, she threatened me with a permanently deaf son or with an infection that could ravage the entire body and maybe even infiltrate the brain if I "just did nothing" (meaning didn't do the antibiotics again). She also wouldn't listen to my concerns and my begging for a referral to EI. I was such an idiot back then, I didn't even realize one doesn't need a doctor's prescription in order to apply for EI. I mean I truly didn't know.
It's a good point and I know it could have been part of the *cause*. That's why we did probiotics--because of the possible antibiotic tie-in. I am actually thinking of trying them again. But I wanted to express how incredibly hard it is to be told on the one hand that you "should" be doing "more" (MORE?), and on the other hand that "you're not accepting enough" and that your child can sense it so maybe you're the problem that way...f * cking him up emotionally. That almost hearkens back to the old Refrigerator Mother theory and leaves a mom 100% in a bind, from both ends.
I have to go take my little son to his school but I'll report back later, I see I got DMs.
Hello Cierra's mommy-
I can relate to your story. My son was diagnosed in 2003 at 2 years of age. The diagnosis for your daughter seems late; however, the good thing is your daughter is probably so mild- it wasn't detected until now- this is a good thing. The bad thing- is now- your on the hunt for answers and resolution...and what to do next? Where do you live? You need to contact your local school board. You need to check out what your community offers- and get in touch with the ESE office of your local public school. I would be happy to communicate with you further- contact me via e-mail.
Jerz, My heart goes out to you. I can truely see the "flip-side" of the coin. You are doing everything a good mother would do and probably more. No, you didn't do anything that could have been part of the "cause". How could you....no one really knows enough about autism and it's causes. And you are correct about everyone trying to tell you about what might work. All those miracle stories! I can say from my heart when I tell anyone of any ideas it's only because I care and want so much to be able to help. I'm sure, at times, it's people like me that could make it worse on people in your situation. I have followed autism since 1969 only because I studied it in college and was very interested in it. That was many years ago. I am not a Dr. just a mother. I was lucky as my children did not have any problems. But it still has always been of interest to me. I can hear the desperation in your writing...I am sorry! Keep trying and please remember you are a remarkable, loving, caring parent!!
I just thought I would show you some scientific evidence that supports dietary changes. Other therapies are also necessary but I believe this is a piece of the puzzle for alot of children with Autism. http://www.cbc.ca/health/story/2007/09/27/autism-study.html?ref=rss Moderator cut: please do not post full articles due to copyright laws - only links
My husband had a rash that almost debilitated him. 8 months and five MD's later, we found a md who tested his blood for vitamin defiencies and prescribed vitamins, probiotics(mega doses) and told him to stay on the Nizoral he had been taking. He also told him to take Florastor a high quality probiotic that my pharmacy has to special order for my husband. He improved within 2 weeks and is amazed. He has been on this protocol for 5 months now. One of the md's ( a Park Ave dermatologist actually took him off the probiotics I had put him on) I wouldn't have believed this if I hadn't experienced this with my husband. When I told my endocrinologist about thid he said there is no connection to a rash on the skin and a yeast overgrowth in the intestine. Oh well, Rome wasn't built in a day-I can only imagine how the parents of children with autism feel when they tell their pediatrician how their child became nonverbal after their mmr and the doctors look at them like their nuts.[/SIZE][/font]
Thimerosal is in contact lens solution too, I think. Or it was.
To me, it's not even the issue of the Thimerosal itself (BTW, Thimerosal is still used in the creation of these vaccines; it was simply taken out as a preservative and each individual dose is small enough not to have to claim on a label...but think about how many shots our children get). Instead, I think the tie-in could be the unbelievable assault on our children's bodies, before they even leave the hospital, with "inactive" (hmmmmmmm...why do they always seem to get a fever, then?) diseases. Somewhere in the 90s, the amount and frequency of, and variety of, vaccines given to children stepped up dramatically. So did the incidence of autism.
My oldest son is 21. By the age of two, he'd had seven vaccines.
My middle son (autistic) is 4. By the age of two, he'd had twenty-four vaccinations. (This is counting individually for combo vaxes, like MMR; and counting each shot when he was given, say, three in one visit.)
Our toddler is being delay-vaxed. Look up the rules for your state. First of all, you don't have to vax at all, though different states have different requirements for this (in some states, you can claim either religious or philosophical reasons, while in other states, only religious applies; and be aware that you can't make these claims and delay-vax or only partially vax, because the idea is that if you have a philosophy against vaccination, then you shouldn't be doing it at all). In my state, there are something like twelve vaccinations required by age five to enter public school (again, unless one is claiming an exemption). Twelve or fourteen...I have to look it up again. Let me tell you, the doctor's schedule had twelve or fourteen vaxes in one year.
This was the whole point of the article I read. It's not just about the Thimerosal by itself. It's factoring in the increasing number of vaccinations given to the children. As you stated, your son at 21 had a total of 7 but your 4 year old has had triple the vaccs and is autistic.
It's a sad thing and the bottom line is these pharmaceutical companies are making millions without any regard for the children. I'm glad that I chose to not vaccinate my child, I think that more parents should consider non-vaccinations. I'm confident that we'll see a huge reduction in the autism cases and who knows what else.
For parents with autistic children, I can only offer hope that someone will come up with a cure to allow the children to lead normal, active and full lives.
Jenny McCarthy is a bit of a nut, although she presents herself as a sympathetic one. She believes her child is a "crystal child"...new age speak for an evolved being. I don't buy into the Indigo child thing, so I don't take her opinion on autism any more highly than any other mother who is raising an autistic child. She has the right to any opinion she wants to express, I just think she is off base on most of her "theories".
I wholeheartedly agree!
Jenny McCarthy (by her own admission) is famous for taking her clothes off (she was a Playboy Centerfold, for those who didn't know) and farting & picking her nose ("Singled Out" & "The Jenny McCarthy Show"). She may also be a very intelligent woman, but I hardly think she is the best person to turn to on scientific research about your child. My advice would be to ignore everything that does not come from a scientific study (which, I know, means ignoring me!)
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ETA: Oh yeah...and fish oils, then specifically a cod liver oil that had to be refrigerated during shipment, then an EFA complex that came from something else...I don't even remember what any more.
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