Re: Those of you who have cured or recovered your child...h...

[Guest guest]

I would say it took about 3.5 years.

We did gfcf for 3 years and started adding enzymes the second year (while still on the diet).

We did tons of biomedical (the list is too long to write down everything we did - we never did chelation though)

We did speech, OT , PT, ABA (lots and lots of ABA) , music therapy, social skills classes.

His biggest "issues" were no weight gain, black shiners, constipation, self injurious (headbanging and hitting himself in the head with his fists), spacing out, unable to focus, aggression, no imaginary play, lack of social skills and no interest in others, lack of play skills and no interest in playing with others, not sleeping thru the night, lining up all things in the house, no speech ( developed about 20 words up until 18 months and never gained another word until starting therapies and diet at 2.5 years old, around 3 he was able to say single words and then it just exploded from there. Today he has gained weight (he is still pretty skinny though ,he just turned six and is 47 pounds), he doesn't line up items any longer, he is on target with play skills ,has excellent imaginary play skills, has full vocabulary (and sometimes I wish he would have a mute button ...lol), is in a typical kindergarten class with no supports, sleeps thru the night, has no more shiners, no constipation, is no longer self injurious, is a social butterfly, no longer on GFCF (eats everything now , no enzymes) etc, etc.

He no longer qualifies for the Autism label but I think he might have some ADHD issues, don't know yet if it's the age and something he will grow out of because he has issues with impulse control (cognitive, etc he is fine). His dr. recommends i look into biofeedback to see if that is something they can work on , in the mean time I am working with a behavioral company on it to see if it's behavioral or chemical imbalance, so I guess time will tell which road to go.

Whatever you do, never give up!!! If I would have , he would have never been were he is today and he/she depends 100% on you. It has been 3.5 very very long years and most of the time very scary as well. Trying new supplements , injecting B12 on a daily basis, bringing to new therapies..I was always afraid of adverse effects , that it would damage him more then do good, etc, etc.....but now I am starting to feel that he will be ok in life which I never felt before and I think that was by biggest fear of all...what would happen to him the day I wouldn't be there any longer.

I think having a younger sibbling was an huge help to him and that his little brother has been his best therapist!!!

Anyway, that's how long it took us to get to where we are .

Good luck

well my son i would say is 75% recovered from where we started...he was huge gut kid...self injurous..cutting out grains was a big step ..using digestive enzymes..andy cutler chelation gave huge wows...that was our beginning....other stuff i did for constipation issues

now i am finding great results thru immusist

minerals B vitamins

neuroprotek and PS helps great with inflammation

humaworm for parasites

naturals for yeast

binders that i learned from rita to mop up die off soooo important

inositol for anxiety..

carnitine he is slowly gaining weight learned that one from alberta:)

im also giving a mineral rich product called shiliat but im not so sure about its effects as it has not been tested for metal toxicity ect so im on fence about but heard it was good for pituatary calcification

at night i do alka seltzer gold to help alkanize body...neutralize toxins ect..

i am trying to do more green juicing more green veggies that i been slacking on admitidly.....

oh waiting on humacleanse to keep the bowls moving so important..

lauricidin for yeast viruses it is immune balancer as well

basically i rotate natural pathogen fighters as i feel they stop working ....i look for signs of viral issues yeast issues bacteria issues parasite issues and treat accordingly

i keep diary of all foods to see what affects in bad way i look disect and smell all bowel movements....

its gross but its what the old school docs used to do...the real docs in my opinion...

probiotics is of course a given.....in begininng i could only do single strain probiotics..

i dont know what else i missed....i im sure a lot..I use virastop to help eat the biofilm but there are other biofilm eaters....

i think that should be a staple also in fighting chronic infections....of course bein careful with the gut....all this stuff has got to be monitered carefully by you the parent as you know your kid best...

channa

To: mb12valtrex Sent: Tuesday, January 24, 2012 12:24 PMSubject: Those of you who have "cured" or "recovered" your child...how long did it take?

Those of you who have "cured" or "recovered" your child...how long did it take?and what methods did you include?such as diet? meds? aba? etc

[Guest guest]

Anyone have an autistic child who has never been vaccinated?-----Original Message-----From: Mocaso@...Sent: Tuesday, January 24, 2012 12:13 PMTo: mb12valtrex Subject: Re: Those of you who have " cured " or " recovered " your child...h... I would say it took about 3.5 years.We did gfcf for 3 years and started adding enzymes the second year (while still on the diet).We did tons of biomedical (the list is too long to write down everything we did - we never did chelation though)We did speech, OT , PT, ABA (lots and lots of ABA) , music therapy, social skills classes. TODAY(Beta) •[The entire original message is not included]

[Guest guest]

My children are on the spectrum with sensory processing disorder. No vax. But, I have a celiac diagnosis myself and my kids started out with gut issues. We have been gluten free for a year, just started casein free less than a week ago and already seeing some social improvements.

Anyone have an autistic child who has never been vaccinated?-----Original Message-----From: Mocaso@...Sent: Tuesday, January 24, 2012 12:13 PMTo: mb12valtrex Subject: Re: Those of you who have "cured" or "recovered" your child...h... I would say it took about 3.5 years.We did gfcf for 3 years and started adding enzymes the second year (while still on the diet).We did tons of biomedical (the list is too long to write down everything we did - we never did chelation though)We did speech, OT , PT, ABA (lots and lots of ABA) , music therapy, social skills classes. TODAY(Beta) •[The entire original message is not included]

[Guest guest]

no, mine was fully vaccinated up until he was diagnosed at 2.5 years ,

never had a vaccine after that.

His brother was vaccinated up until he was 4 months old and then never

vaccinated again.

Re: Those of you who have " cured " or " recovered "

your child...h...

I would say it took about 3.5 years.

We did gfcf for 3 years and started adding enzymes the second year

(while still on the diet).

We did tons of biomedical (the list is too long to write down

everything we did - we never did chelation though)

We did speech, OT , PT, ABA (lots and lots of ABA) , music therapy,

social skills classes.

TODAY(Beta) •

[The entire original message is not included]

[Guest guest]

Yes. My child was never vaccinated. However, he had surgery at 12 mos and soon came regression and diagnosis.

Kerri

To: mb12valtrex Sent: Tuesday, January 24, 2012 7:21 PMSubject: Re: Those of you who have "cured" or "recovered" your child...h...

no, mine was fully vaccinated up until he was diagnosed at 2.5 years , never had a vaccine after that.His brother was vaccinated up until he was 4 months old and then never vaccinated again. RE: Those of you who have "cured" or "recovered" your child...h...Anyone have an autistic child who has never been vaccinated?-----Original Message-----From: Mocaso@...Sent: Tuesday, January 24, 2012 12:13 PMTo: mb12valtrex Subject: Re: Those of you who have "cured" or "recovered" your child...h...I would say it took about 3.5 years.We did gfcf for 3 years and started adding enzymes the second year (while still on the diet).We did tons of biomedical (the list is too long to write down everything we did - we never did chelation though)We did speech, OT , PT, ABA (lots and lots of ABA) , music therapy, social skills classes.TODAY(Beta) •[The entire original message is not included]

[Guest guest]

Dr. Rossignol does.  Friend of mine does. Pamela From: mb12valtrex [mailto:mb12valtrex ] On Behalf Of shirleySent: Tuesday, January 24, 2012 7:48 PMTo: mb12valtrex Subject: RE: Those of you who have " cured " or " recovered " your child...h... Anyone have an autistic child who has never been vaccinated?-----Original Message-----From: Mocaso@...Sent: Tuesday, January 24, 2012 12:13 PMTo: mb12valtrex Subject: Re: Those of you who have " cured " or " recovered " your child...h...I would say it took about 3.5 years.We did gfcf for 3 years and started adding enzymes the second year (while still on the diet).We did tons of biomedical (the list is too long to write down everything we did - we never did chelation though)We did speech, OT , PT, ABA (lots and lots of ABA) , music therapy, social skills classes. TODAY(Beta) •[The entire original message is not included]

[Guest guest]

We do

Dr. Rossignol does. Friend of mine does. Pamela From: mb12valtrex [mailto:mb12valtrex ] On Behalf Of shirleySent: Tuesday, January 24, 2012 7:48 PMTo: mb12valtrex Subject: RE: Those of you who have "cured" or "recovered" your child...h... Anyone have an autistic child who has never been vaccinated?-----Original Message-----From: Mocaso@...Sent: Tuesday, January 24, 2012 12:13 PMTo: mb12valtrex Subject: Re: Those of you who have "cured" or "recovered" your child...h...I would say it took about 3.5 years.We did gfcf for 3 years and started adding enzymes the second year (while still on the diet).We did tons of biomedical (the list is too long to write down everything we did - we never did chelation though)We did speech, OT , PT, ABA (lots and lots of ABA) , music therapy, social skills classes. TODAY(Beta) •[The entire original message is not included]

[Guest guest]

My son is not vaccinated. He became autistic at 9 months of age following a

minor surgery while under anastesia and receiving IV antibiotics.

He and I are both positive for lyme, babesia, bartonella, erlichia.

He responds well to all rx anti pathogen meds.

>

> Dr. Rossignol does. Friend of mine does.

>

> Pamela

>

> From: mb12valtrex [mailto:mb12valtrex ] On

Behalf Of shirley

> Sent: Tuesday, January 24, 2012 7:48 PM

> To: mb12valtrex

> Subject: RE: Those of you who have " cured " or " recovered " your

child...h...

>

>

> Anyone have an autistic child who has never been vaccinated?

>

> Re: Those of you who have " cured " or " recovered " your

child...h...

>

>

> I would say it took about 3.5 years.

> We did gfcf for 3 years and started adding enzymes the second year (while

still on the diet).

> We did tons of biomedical (the list is too long to write down everything we

did - we never did chelation though)

> We did speech, OT , PT, ABA (lots and lots of ABA) , music therapy, social

skills classes.

> TODAY(Beta) •

>

> [The entire original message is not included]

>

[Guest guest]

Pamela,

Wow! My story is the same as yours. No vaccines, surgery, antibiotics then diagnosis. However, we have not had any of the Lyme or other issues.

Kerri

To: mb12valtrex Sent: Friday, January 27, 2012 11:05 AMSubject: Re: Those of you who have "cured" or "recovered" your child...h...

My son is not vaccinated. He became autistic at 9 months of age following a minor surgery while under anastesia and receiving IV antibiotics.He and I are both positive for lyme, babesia, bartonella, erlichia.He responds well to all rx anti pathogen meds.>> Dr. Rossignol does. Friend of mine does.> > Pamela> > From: mb12valtrex [mailto:mb12valtrex ] On Behalf Of shirley> Sent: Tuesday, January 24, 2012

7:48 PM> To: mb12valtrex > Subject: RE: Those of you who have "cured" or "recovered" your child...h...> > > Anyone have an autistic child who has never been vaccinated?> > Re: Those of you who have "cured" or "recovered" your child...h...> > > I would say it took about 3.5 years.> We did gfcf for 3 years and started adding enzymes the second year (while still on the diet).> We did tons of biomedical (the list is too long to

write down everything we did - we never did chelation though)> We did speech, OT , PT, ABA (lots and lots of ABA) , music therapy, social skills classes. > TODAY(Beta) •> > [The entire original message is not included]>

[Guest guest]

For the mom who has a son who got "autism' after surgery have you looked into mitochondrial disease? Both of my boys have a suspected mitochondrial disorder. One of the big red flags is regression after surgery or illness. My younger son regresses every time he is ill and his "autism" gets worse. I have not cured my sons but the did get alot better with mitochondrial disease cocktail and treatment for folate receptor autoantibodies. I feel my sons have serious medical issues and they are loosing autism behaviors but are still ill. I think this is the case for many kids.Subject: Re: Re: Those of

you who have "cured" or "recovered" your child...h...To: "mb12valtrex " <mb12valtrex >Date: Friday, January 27, 2012, 11:08 AM

Pamela,

Wow! My story is the same as yours. No vaccines, surgery, antibiotics then diagnosis. However, we have not had any of the Lyme or other issues.

Kerri

To: mb12valtrex Sent: Friday, January 27, 2012 11:05 AMSubject: Re: Those of you who have "cured" or "recovered" your child...h...

My son is not vaccinated. He became autistic at 9 months of age following a minor surgery while under anastesia and receiving IV antibiotics.He and I are both positive for lyme, babesia, bartonella, erlichia.He responds well to all rx anti pathogen meds.>> Dr. Rossignol does. Friend of mine does.> > Pamela> > From: mb12valtrex [mailto:mb12valtrex ] On Behalf Of

shirley> Sent: Tuesday, January 24, 2012

7:48 PM> To: mb12valtrex > Subject: RE: Those of you who have "cured" or "recovered" your child...h...> > > Anyone have an autistic child who has never been vaccinated?> > Re: Those of you who have "cured" or "recovered" your child...h...> > > I would say it took about 3.5 years.> We did gfcf for 3 years and started adding enzymes the second year (while still on the diet).> We did tons of biomedical (the

list is too long to

write down everything we did - we never did chelation though)> We did speech, OT , PT, ABA (lots and lots of ABA) , music therapy, social skills classes. > TODAY(Beta) •> > [The entire original message is not included]>

[Guest guest]

Are you sure? Bartonella?

> >

> > Dr. Rossignol does. Friend of mine does.

> >

> > Pamela

> >

> > From: mb12valtrex [mailto:mb12valtrex ] On

Behalf Of shirley

> > Sent: Tuesday, January 24, 2012 7:48 PM

> > To: mb12valtrex

> > Subject: RE: Those of you who have " cured " or " recovered " your

child...h...

> >

> >

> > Anyone have an autistic child who has never been vaccinated?

> >

> > Re: Those of you who have " cured " or " recovered " your

child...h...

> >

> >

> > I would say it took about 3.5 years.

> > We did gfcf for 3 years and started adding enzymes the second year (while

still on the diet).

> > We did tons of biomedical (the list is too long to write down everything we

did - we never did chelation though)

> > We did speech, OT , PT, ABA (lots and lots of ABA) , music therapy, social

skills classes.

> > TODAY(Beta) •

> >

> > [The entire original message is not included]

> >

>

[Guest guest]

Interesting that you say that. Through all of the bio-medical treatments over 2 1/2 years, not once did anyone order a gentic profile. I finally went to a neurologist in the Med. Center (regular MD) and she ordered genetic testing. We go over the results in March. I am in the medical field as well and looking over the results, I did not notice anything signigicant or remarkable. Then again, off hand, I am not sure mitochondrial testing was a part of this profile but I will check on that. My son also regresses horribly during and after an illness. For instance, three weeks ago, he was playing with other child, initiating play, asking kids to play chase, laughing and having a great time. One week later, on a Friday, his lips

turned bright red, scaly and chapped extending the vermillion borders and behavior was off the wall. He became extremely irritable, hitting, biting, zoned out, crying all the time and hitting himself. I was freaking out! How could this happen so quickly without changing or adding anything??? Even one of his friends asked me, "What's wrong with him? He will not answer me, is he mad at me?" In a little over a week, the lips cleared up and all the symptoms went away. Now he is talking again, playing etc. I pretty much know it was viral. Can not wait to start the anti-viral therapy with Goldberg.

Kerri

To: mb12valtrex Sent: Friday, January 27, 2012 11:35 AMSubject: Re: Re: Those of you who have "cured" or "recovered" your child...h...

For the mom who has a son who got "autism' after surgery have you looked into mitochondrial disease? Both of my boys have a suspected mitochondrial disorder. One of the big red flags is regression after surgery or illness. My younger son regresses every time he is ill and his "autism" gets worse. I have not cured my sons but the did get alot better with mitochondrial disease cocktail and treatment for folate receptor autoantibodies. I feel my sons have serious medical issues and they are loosing autism behaviors but are still ill. I think this is the case for many kids.

Subject: Re: Re: Those of you who have "cured" or "recovered" your child...h...To: "mb12valtrex " <mb12valtrex >Date: Friday, January 27, 2012, 11:08 AM

Pamela,

Wow! My story is the same as yours. No vaccines, surgery, antibiotics then diagnosis. However, we have not had any of the Lyme or other issues.

Kerri

To: mb12valtrex Sent: Friday, January 27, 2012 11:05 AMSubject: Re: Those of you who have "cured" or "recovered" your child...h...

My son is not vaccinated. He became autistic at 9 months of age following a minor surgery while under anastesia and receiving IV antibiotics.He and I are both positive for lyme, babesia, bartonella, erlichia.He responds well to all rx anti pathogen meds.>> Dr. Rossignol does. Friend of mine does.> > Pamela> > From: mb12valtrex [mailto:mb12valtrex ] On Behalf Of shirley> Sent: Tuesday, January 24, 2012 7:48 PM> To: mb12valtrex > Subject: RE: Those of you who have "cured" or "recovered" your child...h...> > > Anyone have an autistic child who has never been vaccinated?> > -----Original

Message-----> Sent: Tuesday, January 24, 2012 12:13 PM> To: mb12valtrex > Subject: Re: Those of you who have "cured" or "recovered" your child...h...> > > I would say it took about 3.5 years.> We did gfcf for 3 years and started adding enzymes the second year (while still on the diet).> We did tons of biomedical (the list is too long to write down everything we did - we never did chelation though)> We did speech, OT , PT, ABA (lots and lots of ABA) , music therapy, social skills classes. > TODAY(Beta) •> > [The entire original message is not included]>

[Guest guest]

We had genetic testing and fragile X testing which was fine. Some medical papers you may want to look up and read are Kennedy Kreiger Paper Autism Secondary to Mitochondrial Disorder, Has you child been screened for Mitochondrial OXPHOS disorder probably not by Alyssa Davi, The journey From ASD to a Mitochondrial Disease Diagnosis by Alyssa Davi, Papers written by Dr. Frye, and Fran Kendall. Testing consists of Urine Organic Acids, Quantitative plasma amino acids, Creatine kinase, basic cemeteries, ammonia, CBC, Blood Lactate or Pyruvate. among others. You need to go to a doctor that specializes in this as labs may not "look" that off to someone who does not specialize in the. Dr. Frye, Fran Kendall and Kennedy Krieger are some specialize in DXing this. You may need to travel far from home to investigate this, I did. FYI my kids get nuts with viral

infections and also are being worked up for immune dysfunction as well. This often occurs with MitoASD.

Subject: Re: Re: Those of you who have "cured" or "recovered" your child...h...To: "mb12valtrex " <mb12valtrex >Date: Friday, January 27, 2012, 11:08 AM

Pamela,

Wow! My story is the same as yours. No vaccines, surgery, antibiotics then diagnosis. However, we have not had any of the Lyme or other issues.

Kerri

To: mb12valtrex Sent: Friday, January 27, 2012 11:05 AMSubject: Re: Those of you who have "cured" or "recovered" your child...h...

My son is not vaccinated. He became autistic at 9 months of age following a minor surgery while under anastesia and receiving IV antibiotics. He and I are both positive for lyme, babesia, bartonella, erlichia. He responds well to all rx anti pathogen meds. > > Dr. Rossignol does. Friend of mine does. > > Pamela > > From: mb12valtrex [mailto:mb12valtrex ] On Behalf Of shirley > Sent: Tuesday, January 24, 2012 7:48 PM > To: mb12valtrex > Subject: RE: Those of you who have "cured" or "recovered" your child...h... > > > Anyone have an autistic child who has never been vaccinated? > > -----Original

Message----- > From: Mocaso@... > Sent: Tuesday, January 24, 2012 12:13 PM > To: mb12valtrex > Subject: Re: Those of you who have "cured" or "recovered" your child...h... > > > I would say it took about 3.5 years. > We did gfcf for 3 years and started adding enzymes the second year (while still on the diet). > We did tons of biomedical (the list is too long to write down everything we did - we never did chelation though) > We did speech, OT , PT, ABA (lots and lots of ABA) , music therapy, social skills classes. > TODAY(Beta) • > > [The entire original message is not included] >

[Guest guest]

I really believe that Bartonella is very under-mentioned in the

autism and other chronic health arenas, as well. Mostly, because

it's very easy to catch. Some docs say that just being in a house

where fleas live or have lived is enough to catch it. Anyhow, it's

well known that our children with autism have opportunistic

infections (infections that many get, but only those with

compromised immunity get ill from). If you Google what mainstream

says about Bartonella, you will find that it is not what the Lyme

expert docs are saying about it. They say it can be chronic and

cause personality issues, such as rages, weight loss or gain,

extreme anxiety, OCD, Bipolar, and a bunch more symptoms. Anyhow,

one of my kids got the Bartonella stretch-mark rash only after

taking a specific antibiotic. Testing showed that Bartonella was a

main infection for my family, and treating it made a huge

difference. All I can say is that with it being so easy to catch,

transferable from mother to child, via sex, etc., and associated

with many symptoms, I think everyone with a developmental or mental

health diagnosis should be tested for it. Unfortunately, testing is

considered unreliable at times due to the person possibly being too

ill to produce antibodies to show up in testing. We used Fry Labs

of Arizona. I would imagine others should try whatever testing

their insurance is willing to pay for first. I think our insurance

reimbursed us, but I can't remember. It's been years ago.

Love and prayers,

Heidi N

Are you sure? Bartonella?

>

> Pamela,

> Wow! My story is the same as yours. No vaccines, surgery,

antibiotics then diagnosis. However, we have not had any of the

Lyme or other issues.

> Kerri

[Guest guest]

We just had all of those tests that you named completed on 1/11/12. We have results but of course I do not understand exactly what we are looking for. I will let our doc take a look at them but I will definitely pursue this further. Symptom wise, you are explaining my child. He has done extremely well all week and today he came home with the red lips again. Here we go again, another week of regression and agony. I looked back in my notes and one thing that was significant was he had home made gf/cf enchiladas both times that this happened. I am now wondering if this is an allergic reaction. Anyways, I will give compounded benedryl tonight and see what happens. Could be viral as well. Behavior went from

outstanding this am to rage this evening. Thanks for the info! I will check this out for sure.

Kerri

To: mb12valtrex Sent: Friday, January 27, 2012 5:55 PMSubject: Re: Re: Those of you who have "cured" or "recovered" your child...h...

We had genetic testing and fragile X testing which was fine. Some medical papers you may want to look up and read are Kennedy Kreiger Paper Autism Secondary to Mitochondrial Disorder, Has you child been screened for Mitochondrial OXPHOS disorder probably not by Alyssa Davi, The journey From ASD to a Mitochondrial Disease Diagnosis by Alyssa Davi, Papers written by Dr. Frye, and Fran Kendall. Testing consists of Urine Organic Acids, Quantitative plasma amino acids, Creatine kinase, basic cemeteries, ammonia, CBC, Blood Lactate or Pyruvate. among others. You need to go to a doctor that specializes in this as labs may not "look" that off to someone who does not specialize in the. Dr. Frye, Fran Kendall and Kennedy Krieger are some specialize in DXing this. You may need to travel far from home to investigate this, I did. FYI my kids get nuts with viral infections and also are being worked up for immune dysfunction as well. This

often occurs with MitoASD.

Subject: Re: Re: Those of you who have "cured" or "recovered" your child...h...To: "mb12valtrex " <mb12valtrex >Date: Friday, January 27, 2012, 11:08 AM

Pamela,

Wow! My story is the same as yours. No vaccines, surgery, antibiotics then diagnosis. However, we have not had any of the Lyme or other issues.

Kerri

To: mb12valtrex Sent: Friday, January 27, 2012 11:05 AMSubject: Re: Those of you who have "cured" or "recovered" your child...h...

My son is not vaccinated. He became autistic at 9 months of age following a minor surgery while under anastesia and receiving IV antibiotics. He and I are both positive for lyme, babesia, bartonella, erlichia. He responds well to all rx anti pathogen meds. > > Dr. Rossignol does. Friend of mine does. > > Pamela > > From: mb12valtrex [mailto:mb12valtrex ] On Behalf Of shirley > Sent: Tuesday, January 24, 2012 7:48 PM > To: mb12valtrex > Subject: RE: Those of you who have "cured" or "recovered" your child...h... > > > Anyone have an autistic child who has never been vaccinated? > > Re: Those of you who have "cured" or "recovered" your child...h... > > > I would say it took about 3.5 years. > We did gfcf for 3 years and started adding enzymes the second year (while still on the diet). > We did tons of biomedical (the list is too long to write down everything we did - we never did chelation though) > We did speech, OT , PT, ABA (lots and lots of ABA) , music therapy, social skills classes. > TODAY(Beta) • > > [The entire original message is not included] >