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#91 of 116 Old 04-20-2014, 02:00 PM
 
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She is the first author of the book.  I some cases her doctor recommends them in Q and A sections.  In other cases, they are just in the text of the book.

 

Jenny said injections were painless.  Her doctor did not use that word, but he did say the injections had to pierce the skin, that they could be given anywhere on the body, and that the injections would not encounter any nerves.

 

This is news to me! I thought I has nerves at or near the surface of my skin, but I am not  doctor. I must be imaging the pain from shots, a psychosomatic reaction or something, I guess.

 

Do shots hurt when you get them, samaxtics?

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#92 of 116 Old 04-20-2014, 02:07 PM
 
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I have a pretty high tolerance to pain.  The last time I had a vaccine (around 19 yrs ago) I had a very sore arm afterwards for a few days.  Blood draws never bother me.

My son with autism has a high tolerance to pain but finds light tickles very painful.

My neurotypical son faints at the sight of a needle. He grimaces a lot during a blood draw but I'm not sure if it is actual pain or his fear. 

We usually ask for the much thinner needle, I think it is called a butterfly needle.


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#93 of 116 Old 04-20-2014, 02:08 PM
 
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Looking into alternatives, using them.  We don't know the details.

 

My wife is concerned that her family gets effective, safe treatments.  Sometimes her daughter asks for her advice. Other times, she tries to influence her and with some success.

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#94 of 116 Old 04-20-2014, 02:10 PM
 
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I'd say it's wife support, she wants to discuss it with me, she says she values my input.

 

She's concerned that her family gets effective, safe treatments.  Sometimes her daughter asks for her advice. Other times, she tries to influence her and with some success.

Not to discount your opinion, but isn't it more helpful for your step daughter to ellicit opinions of those who have some experience in the matter?

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#95 of 116 Old 04-20-2014, 02:49 PM
 
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Not to discount your opinion, but isn't it more helpful for your step daughter to ellicit opinions of those who have some experience in the matter?

Do you mean those like Jenny McCarthy?

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#96 of 116 Old 04-20-2014, 02:51 PM
 
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She is getting some professional help.

 

But she is a bit of a do it yourselfer.  Do you think my wife and I should just refuse to try to answer anuy of   My wife has a PhD is toxicology.

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If I were trying to help someone in my family who was considering alternative treatments for autism, I'd start by looking at each specific issue that each treatment is supposed to address.

In the case of B-12 shots, for example, I'd learn everything I can about B-12 deficiency, its symptoms, how those symptoms might or might not be linked with autistic behaviors, what might cause it, whether anything might give a misleading positive/negative test result (like intrinsic factor deficiency), etc. then I'd look at what possibilities exist to address B-12 deficiency. What are the pros and cons of injections, what less invasive alternatives to injections might there be, and how do they compare in safety and efficacy?

And I'd make darn sure that the person in question was not only tested for B-12 deficiency before considering addressing it, but I would go over the test results with an expert on B-12 deficiency/pernicious anemia.

FTR, I was tested (at my request) for B-12 deficiency by my ENT, who told me that I was fine and didn't have it. The rheumatologist disagreed, and said that anyone with a serum level of 200 (the lowest acceptable level by US standards), in his opinion, is at significant risk for neurological symptoms. In fact, doctors in other countries treat B-12 deficiency for levels lower than 500.

I also learned that long-term use of acid blockers is a leading cause of B-12 deficiency--something my ENT didn't bother to tell me, despite knowing that it applied to me.

All the symptoms that had sent me to the ENT in the first place--dizziness, tinnitus, fluctuating hearing loss, and tingling fingers--disappeared after a week of B-12 supplementation (methyl cobalamin sublinguals, NOT cyanocobalamin, and not shots). Had I followed the ENT's advice, I would have gone on steroids and also gotten cortisone injections in the ear. That would not have addressed the real problem.

My point? Even the "experts" disagree. If you have a child--or step-grandchild--with ANY medical issue, not just autism, you need to do more than read JM's books, and you need to do more than read Autism Speaks. You should not follow JM's advice, nor should you follow Paul Offit's.

You should learn as much as you possibly can about every medical facet of autism--causes, symptoms, frequent comorbid issues, treatments, risks, and testing.

And that's just the beginning.

If the child in your family is profoundly affected, seek out the people whose children started where yours is, but have significantly recovered. Find out what they did and didn't do, and why. If your child is mildly affected, there are many families to talk with also, with widely varying success and failure stories. You are likely to learn more from them (both successes and failures) than from doctors, unless the doctor had an autistic child.

In my experience, nearly all the doctors who saw my child had a very strong wealth of textbook-knowledge, none of which applied to MY child.

I wish your family the very, very best of luck; for many, it is a very difficult, complicated situation.
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#98 of 116 Old 04-20-2014, 04:21 PM
 
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Do you mean those like Jenny McCarthy?

I don't know, does her child's scenario seem a lot like JM's?

 

I haven't read any of JM's books, I can't really say where she stands on any of these issues.  

She seems hopeful that vaccines can be made better and I wouldn't touch one ever again.

My son is a lot older than her son so I benefitted from the experience of parents who came before me.  

 

There's looking for info, and then there is looking for validation.  

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#99 of 116 Old 04-20-2014, 04:24 PM
 
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She is getting some professional help.

 

But she is a bit of a do it yourselfer.  Do you think my wife and I should just refuse to try to answer anuy of   My wife has a PhD is toxicology.

I think it's great that you and your wife are trying to be helpful.

 

I didn't see where you were looking for info though. 

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#100 of 116 Old 04-20-2014, 06:54 PM
 
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And then there is spewing misinformation and deleting everything else.

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I don't know, does her child's scenario seem a lot like JM's?

 

I haven't read any of JM's books, I can't really say where she stands on any of these issues.  

She seems hopeful that vaccines can be made better and I wouldn't touch one ever again.

My son is a lot older than her son so I benefitted from the experience of parents who came before me.  

 

There's looking for info, and then there is looking for validation.  

And then there is spewing misinformation nonstop and deleting everything else.

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#101 of 116 Old 04-20-2014, 08:16 PM
 
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Looking into alternatives, using them.  We don't know the details.

 

My wife is concerned that her family gets effective, safe treatments.  Sometimes her daughter asks for her advice. Other times, she tries to influence her and with some success.

 

 

As one who has lived this, I tried to give you the kind of real, scientific information I learned--the hard way-- in my journey of dealing with autism and some of the medical conditions that go along with it, in post #97 on this thread.  As it turned out, both my son (who was diagnosed with autism by 5 different doctors) and I had celiac disease, and, as a result, multiple vitamin deficiencies.  I hope this information is helpful to you, your wife, her daughter, and your step-grandchild (and anyone else reading this thread).

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#102 of 116 Old 04-21-2014, 06:08 AM
 
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And then there is spewing misinformation and deleting everything else.

And then there is spewing misinformation nonstop and deleting everything else.

And who is doing this?

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#103 of 116 Old 04-21-2014, 07:47 AM
 
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tadamsmar - I'm just really confused here - are you are ANTI- vac? yet you support VOS (vaccinating on schedule? and this whole delete I don't get at all?? could you explain please

 

 

 

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I'm anti-vax.  I want polio the eradication program to be completed so that the world will stop polio vaccinations, just as routine smallpox vaccination stopped in 1972.

 

 

 

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And who is doing this?

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In Healing and Preventing Autism: A Complete Guide,  JM recommends injections galore.  Secretin injections, glutathione injections,  b12 injections, Folic Acid injections,Cysteine injections,  BFC injections (B12, Folic Acid, and Cysteine together), injections every other day.

 

She claims injections are painless. The CDC could learn a thing or two from her about pushing injections.

 

None of these injections have statistically significant evidence backing them up.

 

So many injections, so many side effects, I haven't figured them all out.  All or most can cause allergic reactions.  Some are dangerous if your child has or develops liver or kidney disorders.  Need help researching all this stuff.


As a side note, most of these supplements also coincide with a MTHFR mutation which inhibits the body's ability to convert key necessary vitamins and therefore allows for a build up of toxins in the body as the ability to self detox is also inhibited.  Those who have this mutation may be more likely to react adversely to vaccines because they cannot remove the byproducts and fillers used in the vaccines.  Most neurological disorders associated with vaccines involve a build up of toxins in the body, particularly heavy metals, but others as well.  So yes there is evidence to back them.

 

http://link.springer.com/chapter/10.1007/978-1-60761-350-3_11

 

http://www.techtone.me/Autism/pdf/boris.pdf

 

http://mthfr.net/mthfr-c677t-mutation-basic-protocol/2012/02/24/

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#105 of 116 Old 04-21-2014, 08:03 AM
 
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tadamsmar - I'm just really confused here - are you are ANTI- vac? yet you support VOS (vaccinating on schedule? and this whole delete I don't get at all?? could you explain please

 He seems to be "anti-vax" under the guise that a heavy handed mandated vaccination program will completely eradicate diseases and make vaccines unnecessary.  But we know that to be false because vaccination doesn't work on everyone and diseases are not stupid, they are living things that adapt and mutate to survive in spite of our best efforts to eliminate them....often to our detriment because the mutated varieties are often more virulent and harder to control and treat than the original strain.  Just look at what we've done with MRSA!

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 He seems to be "anti-vax" under the guise that a heavy handed mandated vaccination program will completely eradicate diseases and make vaccines unnecessary.  But we know that to be false because vaccination doesn't work on everyone and diseases are not stupid, they are living things that adapt and mutate to survive in spite of our best efforts to eliminate them....often to our detriment because the mutated varieties are often more virulent and harder to control and treat than the original strain.  Just look at what we've done with MRSA!

that is not the anti-vac I am! I 

 

I'm waiting to see his answers.


 

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This is mainstream autism, the kind I would guess Jenny McCarthy is trying to avoid with her son. It starts with regression and ends up with the child in an institution. Horrific side effects from medications (obesity, man-boobs and violence). These parents have no idea how to help their son.

 

http://fox17online.com/2014/04/15/i-love-him-to-death-but-i-dont-know-how-to-help-him-family-of-child-with-autism-speaks-out-during-awareness-month/#axzz2zQ6m6MQ9

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#108 of 116 Old 04-21-2014, 09:11 AM
 
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This is mainstream autism, the kind I would guess Jenny McCarthy is trying to avoid with her son. It starts with regression and ends up with the child in an institution. Horrific side effects from medications (obesity, man-boobs and violence). These parents have no idea how to help their son.

 

http://fox17online.com/2014/04/15/i-love-him-to-death-but-i-dont-know-how-to-help-him-family-of-child-with-autism-speaks-out-during-awareness-month/#axzz2zQ6m6MQ9

 

If you want to do something useful in response to autism, get behind the effort to have medical insurance cover behavioral therapy:

 

http://www.bbc.com/news/magazine-17583123

 

The situation in the US puts us somewhere between France and Sweden.  Jenny McCarthy's son got behavioral therapy because she could afford it, but many parents in the US cannot afford it.

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#109 of 116 Old 04-21-2014, 09:20 AM
 
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Why would you think I am not for insurance companies paying for behavioral therapy? I happen to believe that autism is medical and behavioral therapy is just one treatment aspect. Also, there is no one-size fits all treatment for autism, and what works for one child will not necessarily work for another, it would be wonderful if all would be covered by insurance.


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#110 of 116 Old 04-21-2014, 09:27 AM
 
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I should add that paying for the 1 in 68 children, probably way more because this figure just reflects the number of 12 year olds, like Benjamymm, that have ASD, is likely to bankrupt both state and private insurance companies, and see premiums rise to even more unaffordable levels. Prevention is what is needed, this is a manmade epidemic.


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#111 of 116 Old 04-21-2014, 09:30 AM
 
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This is mainstream autism, the kind I would guess Jenny McCarthy is trying to avoid with her son. It starts with regression and ends up with the child in an institution. Horrific side effects from medications (obesity, man-boobs and violence). These parents have no idea how to help their son.

 

http://fox17online.com/2014/04/15/i-love-him-to-death-but-i-dont-know-how-to-help-him-family-of-child-with-autism-speaks-out-during-awareness-month/#axzz2zQ6m6MQ9

Yes, the violence is not necessarily mainstream autism.  That might be a separate issue, or it might even be caused by whatever drugs they're giving him. Many of the drugs being used on autistic children (antidepressants, ADHD meds, etc) carry a side effect of causing violent thoughts and behaviors in those who have never had them before.

The obesity may also stem from eating gluten, if he is gluten-intolerant or has undiagnosed celiac.   As Karyn Seroussi explains it, there is an opioid effect on the brain from the gluten, which fuels addictive eating of gluten, extremely difficult to control.

 

She doesn't know where to turn for help, yet there are many autism support groups out there, including some who have partially or fully recovered their child, like TMR.  Too bad people who have never lived it speak out against those who have...

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#112 of 116 Old 04-21-2014, 09:42 AM
 
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The obesity may also stem from eating gluten, if he is gluten-intolerant or has undiagnosed celiac.   As Karyn Seroussi explains it, there is an opioid effect on the brain from the gluten, which fuels addictive eating of gluten, extremely difficult to control.

 

Also, atypical antipsychotics are commonly prescribed to people with autism. Side effects include obesity. Risperidone (Risperdal) and aripiprazole Abilify) have been approved by the FDA for autism.

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My step-grandson has autistic symptoms and his mom is dabbling in alternative medicine.  My wife, her mom, is concerned.   I read the books to get the lay of the land.

I am sorry your family is facing this diagnosis.  I have 2 autistic nephews - one a preteen, one a teen, and both severely autistic.

 

My advice you to, and you can take it or leave it, is to give the mom the space to behave as she sees fit.  She is the mom.  There are things I wish my sister had done differently/explored - but she didn't.  It was not my call, and for the most part (with a few hiccups in the beginning) I have tried hard to keep my mouth shut.  

 

If you ever lurk on the Special needs forum here (do not post!) you will see how awful and strained the relationship is between many of the SN parents and their extended families. Do not add to their frequently very difficult lives and decisions by questioning their decisions.  


There is a battle of two wolves inside us.  One is good and the other is evil.  The wolf that wins is the one you feed.

 

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#114 of 116 Old 04-21-2014, 04:33 PM
 
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I am sorry your family is facing this diagnosis.  I have 2 autistic nephew - one a preteen, one a teen, and both severely autistic.

 

My advice you to, and you can take it or leave it, is to give the mom the space to behave as she sees fit.  She is the mom.  There are things I wish my sister had done differently/explored - but she didn't.  It was not my call, and for the most part (with a few hiccups in the beginning) I have tried hard to keep my mouth shut.  

 

If you ever lurk on the Special needs forum here (do not post!) you will see how awful and strained the relationship is between many of the SN parents and their extended families. Do not add to their frequently very difficult lives and decisions by questioning their decisions.  

and to add to Kathy EXCELLENT advise that should all be followed, don't judge who someone choose to follow for their support - your feeling on JM are abundantly clear, BUT if JM gives any comfort to the mom, so be it

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#115 of 116 Old 04-21-2014, 05:55 PM
 
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I am sorry your family is facing this diagnosis.  I have 2 autistic nephews - one a preteen, one a teen, and both severely autistic.

 

My advice you to, and you can take it or leave it, is to give the mom the space to behave as she sees fit.  She is the mom.  There are things I wish my sister had done differently/explored - but she didn't.  It was not my call, and for the most part (with a few hiccups in the beginning) I have tried hard to keep my mouth shut.  

 

If you ever lurk on the Special needs forum here (do not post!) you will see how awful and strained the relationship is between many of the SN parents and their extended families. Do not add to their frequently very difficult lives and decisions by questioning their decisions.  

:clap

 

More often than not, parents need more support and respite, not more advice/judgments. 

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#116 of 116 Old 04-23-2014, 03:11 AM
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I removed two posts from this thread. One was making an accusation of members being paid to post. Whether serious or simply taking a stab at someone, it's inappropriate.  The second was quoting and commenting on that post with sarcasm.

 

Making negative comments and accusations in discussions is really not conducive to respectful debate. If you don't know how to debate or exchange differences of opinion without making cutting remarks or sarcastic comments then please step out of the discussion so that at least you preserve your posting privileges to the forums. 

 

If a person makes an inappropriate comment and you have the sense to recognize it as such, don't quote it and comment on it. That can land you into the same warning or infraction the other person received for making the comment in the first place. It also creates more work for us in moderation because though we may remove the initial post as a violation we still have to deal with others quoting the post. So we end up having to remove those posts as well and sometimes issue a warning or infraction to you/them.


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