Question about Jenny mcCarthy autism tour

[tgrimes]

Tonight someone told me that they saw jenny mccarthy on another show, i think 20/20, and she said her child is 'cured' because of the gfcf diet.
Is this quote accurate, and if so, is she still using other interventions, or has been able to drop them?

[tgrimes]

Never mind this, I found the story on the ABC website. It says they are still using medication, and therapy too.

[gynwhyver]

As a person, I find Jenny very funny and likeable. As to her views on autism...they're interesting, but I'm not sure I can take her seriously, because some of her views are a little "out there."

I don't know if she still believes this or not, but at one time, she subscribed to the theory that her son was a "Crystal Child" (aka "StarChildren") and she was an "Indigo Adult" and that children with autism don't have autism per se, but are the next stage of evolution. She was the owner of the website IndigoMoms.com, but (not surprisingly) the website has been taken down and a message says that it will "not be returning." There is supposedly mention of how she used crystals, and something about the Purple Eagle Gemstone, to "cure" her son's autism.

This is what it says about crystal children: The Crystal Children began to appear on the planet from about 2000, although some date them slightly earlier. These are extremely powerful children, whose main purpose is to take us to the next level in our evolution, and reveal to us our inner power and divinity. They function as a group consciousness rather than as individuals, and they live by the" Law of One" or Unity Consciousness. They are a powerful force for love and peace on the planet.

http://www.celebrity-babies.com/2007/04/jenny_mccarthy.html and http://www.starchild.co.za/what.html has more information.

The book supposedly does make reference to intensive behavioral, diet, and supplements to "heal" his autism, which THAT I could buy into. She also supposedly takes her son to DAN doctors, and believes vaccines do play a part in autism.

Here's a link to Jenny's responses from the Oprah show: http://www.oprah.com/tows/pastshows/200709/tows_past_20070918_c1.jhtml

This is what she's done:

#1: Food allergy blood test, which is called IGG food allergy test. Many kids come back negative on gluten, including Evan. That's okay. I still needed to remove gluten from his diet and other foods I found out he was allergic to.

#2 Got a D.A.N doctor. I went to www.autism.com.

#3 GF/CF diet and started supplements from Kirkman laboratories, especially Super Nu-Thera multi-vitamin.

#4 Starting anti-fungal meds to kill Candida/fungus. Meds like Diflucan, Nystatin. Evan started to come out of autism completely after I killed CANDIDA!!!

#5 Besides GF/CF I also started sugar-free and yeast-free diet. No fruit or sugar.

#6 No artificial coloring, like RED dye in anything!!! Caused crazy EVAN!!!!!!

#7 Evan is still on the GFCF and IF I take him off or feed him sugars his candida comes back and so do old autism characteristics.

She also didn't believe he had epilepsy, even after being diagnosed due to multiple seizures, but that his seizures were due to autism.

SHE'S USES RDI AND RECOMMENDS IT!

[milivica]

SHE'S USES RDI AND RECOMMENDS IT!

WHAT! Holy mother of God, she never once mentioned in on Oprah. Uh!!!

[tgrimes]

Yeah, I think Peglem posted the part of the transcript where she said that. I think that is what she refers to as the daily therapy.

[tgrimes]

I want to know what meds he is on, why doesn't she talk about that?

[Isabelle]

crystal child, indigo woman...? ok, another proof that the world is not only getting scarier, nut crazy, but silly, wacky by the nanosecond...:( :( :mad:

[Mother's Heart]

crystal child, indigo woman...? ok, another proof that the world is not only getting scarier, nut crazy, but silly, wacky by the nanosecond...:( :( :mad:


no joke! funny, the ironic thing is: the people saying this are claiming they are the next step 'forward' in evolution. :)

[milivica]

Unless we are heading toward winding up like that Woody Allen movie where you don't even have sex anymore, reproduction by invitro etc... no way asd is the next step in evolution for a SOCIAL being. For a solitary territorial being, I dunno, I'd have to think about that.

[Isabelle]

next step "forward" in evolution???? hoooollllly!!!
ok, i heard the "treatment" of the disabled/autistic has "evolved" with co morbid psychiatric diagnoses and higher amounts of drugs. these psychiatrists are really going to have a field on them, how are they going to be described/diagnosed in the next edition of the DMS book ??? with "psychotic escapism" ? as the next psychedelic generation flying high in their fantasies ???
they are going to take first two old drugs like Prozac and Clozaril mix them together and market it as the proper "med" to "treat" "escapism" ...hmmm what would be the "right" name "Zaczaril" ? "Cloproz" ? "Zazaril" ?....:eek:

[peglem]

Does Jenny still believe this stuff? Because from reading the starchildren website, they are supposed to feel the interconnectedness of humanity. So, why would her kid need RDI if he's naturally connected to the human consciousness? I didn't see any of the shows with her on them-just missed them. But from what I've read here on the forum and all the links, I'm mighty suspicious of her. Feels like she's setting herself up as some kind of prophet of autism or something. Like she's gonna show all us "less conscious" parents (where oh where did I put my mommy instinct?) the way out of autism. And all she's really doing is following DAN protocol-and acting like she invented it.

[JungleWoman]

What frustrates me is the GFCF diet is not a cure all for all autistics.

We did it for 6-8 months and there was absolutely no change.

Im glad that her son and the children of others that have benefitted HAVE benefitted from it, but not everyone does.

Also, why is she doing a speaking tour? Shes not an expert. She's a celebrity with money.

[milivica]

Like she's gonna show all us "less conscious" parents (where oh where did I put my mommy instinct?) the way out of autism.

Yes, this bothered me. She has not done anything differently than any other loving mother with instincts, she has done things differently because of MONEY, she did not invent anything.

However, that she is running around trying to share, despite being a total newbie, that I like. Wait until her kid hits puberty - hey, I remember when Vince was little and I had a long list of "nevers" that would never happen to him, that he would never do, etc... Yeah, well unfortunately Vince 'never' read my list!

What I want to see, is how is this going to help the cause of autism. If she does that, even if she inspires mother's with hope, that's fine. But she really has no idea, what it's like, to be the mother of an autistic child if she hasn't known total and utter hopelessness from time to time, the feeling of no answers and resources from time to time. I'm sorry, that's part of the 'experience'. Or maybe just part of mine, who did I have - no family, no money. Yet, other parents might tell me "at least your husband stayed". Well I'll tell ya, there are times he's more draining than the kids! So, while I don't like to compare her to other mom's, I can't help it - money and DAN docs and nannies and so on, make a difference.

I don't want to rag on her, she says much of what she does cause she's all brand new, has nannies and a billion dollar boyfriend, she's still fresh instead of spent.

Ok, done ragging (for now).

[peglem]

Yeah, probably 7 or 8 years ago I would have been saying "Wow, really? Hey I'll have to try that!" Just because she's a parent who claims to have had success, just like I tried so many things that others said worked for their kids. And really, I don't want to discourage others from trying those things- maybe they will help. Why is there no way to know which things will help which kids? Why is there still no differentiation (other than age of onset) between different problems in autism? I'm not even sure age of onset is a fair differentiation, like so what, my kid regressed earlier than others. And even if autism is just those 5 core deficits identified in RDI-there are few kids with autism who don't have more than that going on- I mean medically. Motor problems, gut problems, comorbids- are these things that caused the core deficits or are they unrelated? And even the DAN people don't seem to know which kids- they have some testing (some of which is questionable, I think), but if your kid tests negative, for say gluten sensitivity, they still recommend you try GF anyway...basically it seems like they just put you through a regimen of trying what worked sometimes for others. But, at least they recognize that there are medical problems in autism and not every "symptom" is a manifestation of autism.

[LIZARD]

I thought the Oprah appearance wasn't bad, but this whole "cure/recovery" thing, and especially the "indigo/crystal child" horse$h!t just gets on my nerves and reflects badly on all parents of autistic kids, because so many people actually think ****** "represent" us. It scares me to think people are actually going to take this woman seriously and thus think we're all lost in space. :rolleyes:

LIZARD :rolleyes:

[JungleWoman]

At least people like Doug Flutie and Joe Montana set up foundations to HELP other people. Thats where the real nobility comes from.

I almost cried when I saw a video from Montana's foundation. His wife was saying that they take their son around in a special stroller and she was thinking, "Gosh, there are people out there in the same boat as us that cannot afford this sort of thing and therefore never get out of the house-- but WE can and we want to help!"

How cool is that?!

[Kristen (ColeysMom)]

I dunno, that jibberish about the evolution sounds like a desperate attempt to make sense out of something that no one has any answers for. I'd be surprised if she still believes all that, it doesn't gel with her actions...therapy and diet & the idea of recovery, ya know...

I saw both shows and I didn't take offense to anything she was saying like she had some sort of 'higher' knowledge. She just talked about what worked for Evan and did say many times that every kid is different...but one thing she did say she believed firmly was that the vaccines somehow triggered it, and also that diet seems to be VERY important in one way or another for most.

Overall I just got the impression from both interviews that she & Holly both were trying to simply bring awareness to the whole plight...she talked about how she hid it, the diagnosis, and her struggles from many for a long time, and she felt like it was time to be proud about all that Evan had overcome, and also to stop being ashamed of the diagnosis, as though she had somehow caused it. or didn't do the right things.

When I saw her on the view a while back Rosie and she were discussing how Drs and teachers tend to shrug a lot off and dismiss concerns because of the diagnosis, and it was in that same vein that she & Rosie made a commitment to bring awareness to the whole issue...and to bring power back to Mommy's word, not hers, but all of ours. That when WE say to a Dr "something just doesn't seem right" that it's taken seriously versus the docs belittling us.

I think this is why she kept driving home the mommy instinct thing...because her instincts about Evan helped Evan get to where he is today...same is true for all of us.

I saw the change in Coley with his diet, course I also saw his bizzare behavior before the diagnosis, so it was easy for me to recognize that SOMETHING he was eating was banging him up royally...but it was really difficult for me to describe that to the Drs, so all I could do is imply instinct...which got squashed. I really don't think 'instinct' is a mystical power...I think it's just simple knowledge...you know your kid best...when something aint right, you're gonna know...but if you can describe it in specific terms, it's called observant...if you can't describe it...people call it instinct.

Well my instinct was describing hypoglycemia and temporal lobe seizures. Know I can say that...before I had NO clue what it was...ya know.

And as for Evan's seizures, I think she's right, he didn't & doesn't have epilepsy. There is a ton of debate about what epilepsy means, and how different Drs use that word as a diagnosis...we dealt with the same thing with Coley's. There are some old timers that will call any seizure disorder epilepsy, but these days (as it was explained to me by an epilepsy specialist) the word is only used when there is no other known reason for the seizures. In Coley's case he has a metabolic condition that has a risk of siezures, specifically if exposed to too much sugar (namely fructose) his blood sugar will spike and crash, too low will cause a seizure. So this is not epilepsy. And apparently gluten &/or casein (perhaps even sugar as she is also restricting that) triggers seizures for him. He's not on any medications to control them, just diet restrictions and supplements.

She's a spokes person for a group too...I respect Doug Flutie, didn't know anything about Joe Montana...but I get irked by Doug Flutie that he's not louder about things. His was the first site that I visited after Coley's diagnosis, and I left there pretty lost...it has vertually no information on it about autism...just only about how to apply for a small grant that realy is difficult to obtain...can't remember why, but at the time I was hoping for some sensory evaluation that isn't covered by insurance, and when I read that they provide grants I thought...oh maybe...kept reading and by the end realized they don't really support therapies and things. Just actual equipment...which is great...but there was not one thing on that site to help me, not even direction. He lives in my area, and there wasn't even any information on where I could go for support or expertise.

So I like Jenny, even if she is a weirdo...she is screaming about the lack of attention and the lack of proper services and the lack of respect...one out of every 150...that's an awful lot of parents getting ignored and direspected, and a HUGE chunk of our future that is being disregarded and mistreated...I'm glad she's doing this, and I hope it makes a big impact!

They need to be doing more research and they need to be providing better services...they need to stop testing to avoid lawsuits and start testing to figure out the cause...and get to the root of it, because at this rate what will the incidence be in 2020?

For god sake, the incidence isn't even that high for CF, MS, diabetes, etc...and that gets more coverage and money! The friggen stigma attached to this is what's it..and THAT is the first thing that needs to change...so I say go Jenny!

[LIZARD]

Joe Montana

:confused: JM has an interest in autism?? I know Dan Marino does, but I didn't know about Joe! How cool is that??!! :)


LIZARD :)

[Keggy]

I was a bit bothered by the show. She was giving the impression that she had the answers and that her child was doing well because of it. We know that most kids show dramatic improvements from 5-7, so how does she know it was her interventions?

I was particularly bothered when the two moms said to try everything... we know what people will do :(

[Kristen (ColeysMom)]

Keggy, I'll tell you if the gluten &/or casien intake correlates with Evan's behavior the way that fructose does with Coley....there is NO denying it.

Particularly when you talk yourself into allowing a little and suddenly a child that has great speech can't talk. Or pretty predictable behavior and suddenly they are raging out of control, whining & rocking, all of that...

When I first began restricting and didn't have it all ironed out I could tell I made a mistake when Coley would start lining up his cars...I would plow through the kitchen looking for what I missed...she's right it's an all or nothing thing!

And that's not to say that therpies haven't helped too...they have. But when you've got a kid that would probably be re-diagnosed as perhaps ADHD, and is doing really well for a long period of time, then BLAM goes to the extreme...it's pretty clear that the food has a MUCH bigger impact. Both Holly & Jenny described things like this. And this is totally what we see too.

[JungleWoman]

Oops-- I meant Dan Marino.... my bad!

[Keggy]

My daughters diet is mostly gluten and casein. Her speech is fine, no her speech is excellent, and her behaviors could not be better. Actually, her speech is what you would expect from a well educated adult since she had so many years of speech therapy.

I know that any time we tried something new we saw it had an effect. But I also know that there is something else going on, because we could stop it and still see improvements and set backs. Autism is strange, almost has its own conscious. It has its own patterns and it changes when it is observed.

People are always raving about what a wonderful child my dd is, and most do not believe she has autism. (Most do not know) She tells her friends she has a CAP disorder, which is why it is difficult to keep up socially. But autism is pretty much a bunch of pooey these days. I don't see the symptoms in her anymore. Anyone remember what I was saying 7 years ago?

[Kristen (ColeysMom)]

I know I'm not a Dr.

I know every child is different.

I know I don't have the answers.

I just HEAR what Jenny is saying...no I experience what Jenny is saying. I wish I could tell EVERYONE dealing with autism to just try no fructose for just 1 week...that's all it took for us. If it has an impact that takes away the sleepless nights, the lack of affection, the compulsive behaviors, the irratic moods, all that scary stuff...for just one of the 1/150 dealing with it, I'd feel like I did the right thing...

But at the same time wish I had a similar answer for those that it didn't help.

Personally I think, my opinion, mostly from talking to people, getting answers from Drs, and dealing with Coley...that these symptoms are the result of a starving brain - period.

This is the way a brain responds to the loss of proper nourishment. So ANYTHING that causes that will bring on a group of symptoms, that the Drs like to call autism. Personally I agree with you...autism is a bunch of hooey...it's a way that they can say (without saying) I can't help you, you are on your own.

And that, I believe is what the crux of the problem is! If they'd just stop throwing our kids away as if they are non-treatable and start looking at what may be compromising their normal development, THEN we may have progress!

Til then we all do what we as mothers find work best for our kids.

But REALLY sad part about it is, that seizures can cause permenant damage...so if they are present and not managed...then "autism" for those will likely become a more permenant versus "reversable" thing....

Frankly I have a hard time with the word reversable, because it implies it's fixed...Jenny can't take Evan off that diet, because she will see 'autism' again...same with me...I can't say Coley's autism is gone, even if I have him perfectly restricted for a re-evaluation...and he does get a new diag...because bottom line, it returns if he eats a 'typical' diet. So it's still there, it's always there. We can just beat down the beast, so that he is 'available' to learn.

I am afraid to think about what happens when he is 15 and decides to get that slice of pizza with his friends...or whatever...

One friggin loli-pop and we are set back months...what happens when he's an adult...it scares me!

No they are not all the same, but what about that mom that is sitting there racking her brain...don't you think she deserves to know what has worked for some others?

[milivica]

His wife was saying that they take their son around in a special stroller and she was thinking, "Gosh, there are people out there in the same boat as us that cannot afford this sort of thing and therefore never get out of the house-- but WE can and we want to help!"

I TOTALLY remember her making that statement, for me, it took her out of the 'mommies with money' league. Know what I mean? Like suddenly, she was accessible to my heart and mind. And I'm not saying rich folks don't suffer etc... but I come from blending and squeezing through my husband's new t-shirt, our almond milk. It's incredible exhausting, to have to deal with all the facets of all the treatments for autism, plus the kids, plus the autism, plus all the normal stuff. But never ever, in all my years, have I ever not thought LOTS about anyone that was struggling more than me and trying to help them. Wow, this one mom I met who was a wreck, with 3 boys on the spectrum and her dh left. I told this counselor I had all about her (a counselor with a kid on the spectrum who was wonderful) and I saw her like 3 years later, totally different woman, it was wonderful. I just can't stand it when ANYONE doesn't seem to acknowledge and reasonably help others (I'm not saying become a hooker and give them your money).

[Isabelle]

I want to know what meds he is on, why doesn't she talk about that?

i saw one of jenny interviews in the news 20/20 ABC news, jenny mentions a med for his seizures, that caused evan to become psychotic and she proceeds to describe how evan used his fists to hit his head or banged his head against floor and walls....sounds familiar?

seizures is a way for the brain to say i am not receiving nutrients and man-made chemicals/drugs are going to complicate matters for the poor brain.

i guess you have to buy her book to find exactly what medications he is on :rolleyes: is evan recovers or he did already i knew doctors would say, "he never was autistic"

[Kristen (ColeysMom)]

I don't know for sure what meds he was on..as I understand it he is not on meds now.

I can tell you though what happened with Coley...

When he was originally diagnosed with his seizure disorder...they also told us that his brainwve pattern was immature AND that his speech center was inactive. We were told that he may never speak. He was put on Tegretol because it is the most mild and has had the most 'history.' And that was the important thing as a start up with a 2 year old.

Coley went phychotic on it too. I used the same word with the neuro. Initially, like the first few days on it I dealth with it...just thinking it would take him time to adjust. I spent a lot of time on the child neurology & epilepsy forums here...

Somewhere around day 7 when nothing changed I called the neuro and he told me I would have to ride it out with him, he needed to get to his therapeutic level and that took 3 weeks...I was FA-REAKED by that thought, but he's the doc right.

Coley spent the next 2 weeks with almost NO sleep, running around like a mad man, barely eating anything at all...screaming incently, would not sit still, would not stop for a single second. He would eventually crash on the floor, like, where he stood. I would put a blanket over him and he'd sleep there for a few hours. Wake screaming and start all over again. Talk about sensory overload...I had it!!!!!

By the end of the 3 weeks Coley's blood was tested and the doc said he needed his dose up'd cuz he hadn't reached therapeutic levels...I refused! There was a BIG battle over who knew better, and I won! Likely because I was a bit cranky due to sleep deprevation & all! I cried more during that 3 week period than I did at any other time in my life!

Buuuuuut, although he was a crazed lunatic, he began speaking. So, the doc decided to change him to depakote...that worked better. He continued his speech progress, and settled quite a bit...also he began to come out of his shell. Noticing the world around him.

6 months later he was diagnosed with the fructose intolerance, once we got him stable on that diet, and saw the HUGE improvement we knew it was time to wean him...it was successful! He hasn't been on meds since!

[Isabelle]

tegetrol and valproic acid, you know i thought of them harmless, after all these were really "medicines" and epilepsy a serious disorder, right? but they are also tranquilizers, they "calm" the neurons (whatever is in the brain) activities. later doctors used them as "mood stabilizers".

and here is my experience.....so my boy who never had seizures under my watch, had seizures in the group home, had also SIBs and head banging, also never at home....we were speechless.

took us a long time to realize that these man made chemicals do nothing for the source (the gut not working properly) of these seizures and distressing behaviours on him, those drugs were literally mauling at his brain and causing these violent aggressive behaviours, now he is off all drugs for 14 months and boy what a change, slowly, very slowly his good nature, smiles (he was also abused) started to come back, he has a long way to recover if ever.... ok he is drowning in fish oil to help his brain to recover ;)

i am glad to know that one more child is off "meds" and getting better and better. i don't think these drugs jump-start his improvement, i think he improved despite of them, his central nervous system and immune system started to function on their own. finding the fructose connection was a stroke of luck!!! :) he is lucky to have you as his mother.

[LIZARD]

tegetrol and valproic acid, you know i thought of them harmless, after all these were really "medicines" and epilepsy a serious disorder, right?

http://brain.hastypastry.net/forums/showthread.php?t=20089



LIZARD, who will never take Teg again, so help me God!!

[Kristen (ColeysMom)]

I know!

The Neuro wanted to add another drug too...cuz his appetite was SO poor and he was still screaming terrible at night, all night, every night. That wasn't new from the drug...but we were making the assumption that he was having noctornal seizures and the meds weren't touching that problem!

And we could tell that his lack of intake was affecting his ability to focus....Christ, if they could have JUST listened to his therapist, any numb skull Dr should have recognized THAT as being low blood sugar!

As soon as he'd eat he'd be alert! IDIOTS!

Anyway, he wanted to add an anit-phychotic med...I absolutely REFUSED that! At 2yo...CHRIST!

When we took the fructose out, he began sleeping. I wonder how much just getting rest has aided his progress. Without fail, when he is exposed to fructose now he's restless flipping all over the bed, whining, etc. He'll never be as polluted as he was then...but the smallest amounts and we see hints of it all!

[tgrimes]

I
Anyway, he wanted to add an anit-phychotic med...I absolutely REFUSED that! At 2yo...CHRIST!

!


Wow. Do you know what medication? I wonder why some docs don't ask to try something a little more safe, like even over the counter benadryl does wonders... which would fit in if you subscribe to the theory of histamine response if the kids eat glutens or milk products. (it's an anti-histamine). Anyway, I gather from your response you wouldn't have been interested in anything prescribed at that age!

[Kristen (ColeysMom)]

We actually did try benadryl too. Originally they thought it was night terrors and I guess the solution for night terrors is sleep...which still doesn't make a lot of sense to me, cuz the event prevent sleep and how the heck do you break the cycle...

Anyhoo Coley went completely mad on that too. Also at one point due to his weight gain issues he was prescribed periactin (an anti-hystamine with a side effect of increased appetite) he got VERY aggitated & hyper on that...and aggitated just touches on a description...he actually got more like the tergretol on it...but not quite as extreme...crazy.

The child versions of all these meds have boat loads of sugar. We assumed after diag that this is what caused his issues. So at one point he was prescribed adult periactin with no sweeteners (after Dx)...he still went bonkers on it, and in the same way. But his time it was easier to see moments where he was likely seizing on it...processing type issues. Getting hung up on a topic, sort of 'skipping' while he was talking, stuff like that. And it didn't really help his appetite...

It's just another one of those things that makes us think we aren't all that close to figuring this WHOLE thing out for him.

Even Zantac syrup when he was a baby did weird things to him. I didn't really notice it because he was slowly upped over the course of 10 months...but when he came off of it I could tell that it had made him depressed and lethargic. At 12 months he was still sleeping 2 2hour naps per day, plus over night...well that was a different story...but immediately off of it he went down to 1 1-2 hour nap and his face lit up. That was likely largely due to the sugar.

I hate giving him ANYTHING now. Even pain/fever meds...he's gets a cut up adult tylenol if necessary, absolutely necessary...and it's at half to 2/3 the suggested dose.

The anti-psychotic was risperadol (sp).

edited to add:
I had read once that antihystamines can lower the seizure threshold in some. So we just assumed this is what was happening. I'm just glad the sleep issue resolved. It was getting WAY scary!!!!

[gynwhyver]

Wanna hear something funny...

I was talking to my husband on the phone a few days ago about her and was sharing with him why I wasn't sure I could take her seriously....he got real quiet all of the sudden, then asked me if I wanted to read her book. I asked "why" and asked if he knew of someone who had the book (silly me). He told me he had ordered it for me a few days before, and I just got it in the mail today! Haven't had a chance to look at it yet, but will be sure to post when I do.

See what happens when two people don't communicate. LOL.

[peglem]

Aaawwww, gee, you ruined his surprise! But, hey, what a nice guy. My hub would never do that unless it was a special occaision and then he'd order it a few days late.

[milivica]

See what happens when two people don't communicate. LOL.

See what happens when two people that communicate, get married :D , or at least that would be true in our case, I swear.