Re: Dr. DeMio

[Guest guest]

Oops...this post was to 1284, as a response to " Re: Biomedical

interventions for ASD " . I meant to send it private e-mail like you

asked, but accidently posted to the group. Oh well, I don't mind

sharing....

-Trish

>

> I saw your post inquiring about Dr. DeMio. We have been working

with

> him for over 3 years. I have a 6 yo grandson, Noah, who was dx'd

> with autism, at 2 1/2. His autism was regressive, becoming most

> noticable following a flu shot at 19 months. After seemingly

endless

> reading and research, we put the pieces together and realized that

> his autism was directly linked to his vaccines.

>

> I made an appointment with Dr. DeMio when it was still possible to

> get in within a week. He is an amazing man who is dedicated to

> helping to recover our ASD kids. He has a son who also regressed

> into autism after his shots, and has since dedicated his life to

> healing our children so that they can live healthy, happy and

> successful lives, no matter the level of recovery. He is an MD

with

> a strong backgroungd in toxicology. He has offices in both

Cleveland

> (Seven Hills) and Columbus (Worthington).

>

> My grandson has come a long, long way since we have implemented

the

> DAN! protocol. Initial tests showed that he was not excreting

heavy

> metal toxins, and his immune system was a mess. He suffered from

> leaky gut, he was susceptable to infections and he was suffering

> from bacterial overgrowth in his intestinal tract. All of this

> contributed to increasing neuroloical damage. He also suffered

from

> malabsorption, leading to both malnutrition and dangerously low

> mineral levels. Having been a typically developing child, we

watched

> hopelessly as he regressed into autism. He lost most of his

> developing language while showing a steady increase of unusual,

> autistic like behaviors.

>

> We had him evaluated by various professionals, including a Hearing

> and Speech Pathologist, Speech and Language Therapist, Neurologist

> and the Educational team from the school district. Nobody ever

gave

> us an exact " placement " level on the spectrum. It was as if they

> were afraid for us to know the truth, but according to the ARI

> checklist, he fell just below the middle of the autism spectrum.

>

> The first thing we did per his initial appt, was a full panel of

> tests including Urine, fecal, Red Blood Cell and hair testing. We

> started getting his body ready for chelation by supplementing with

> vitamins and minerals. Dr. D. wanted us to try the gf/cf diet, but

> my daughter just couldn't grasp the concept of it, and was afraid

> that with 3 other children in the house, that it would be

> impossible. Dr. DeMio urged her to think about it. When the time

was

> ready, we began chelation with transdermal dmps and td-

glutithione.

> We began to see some gains within a few weeks. Soon afterwards, I

> managed to talk them into trying the diet for at least 3 months.

> Noah was addicted to the very foods that we suspected he was

> intolerant to. By removing these foods, we began to see even more

> gains. He was still having infractions, resulting in spaciness,

> increased aggitation, and a return of diahrrea. One week-end, I

took

> him to my house and enforced the diet 100%... he became pee

trained

> within 3 days. We were encouraged and Deb found herself determined

> to enforce the diet. He was given Kirkman's enzymes for

> infranctions, which helped a little. Last year, after talking to

Dr.

> Devin Houston from Houston Neutraceuticals, we switched him to AFP

> pepticide and Zyme Prime enzymes. The combination was beneficial

to

> him and he became poop trained within two weeks of more regular

use.

> He is now occasionally allowed to have regular food, as long as he

> takes the enzymes.

> In addition to chelation, he is on specific vitamins and minerals,

> Nordic Naturals ProEFA (essential fatty acids), LDN (Low Dose

> Naltrexone, B12, B-Complex and Oxytocin Nasal Spray. The LDN has

> helped his immune system and we saw immediate language and

cognitive

> gains. The B12 was a major addition to his protocol and we saw

even

> more language. The Oxytocin, which is the most recent thing we

added

> has helped him to not only improve his conversational speech, but

he

> has made huge social gains.

>

> I don't have time to get into what each supplement does

> specifically, but the ones I mentioned have been key to his

> continued progress.

>

> Noah is close to recovery. Academically, he is performing close to

> his kindergarten level. We believe that cognitively, he is pretty

> much caught up. He still has social deficits and his

conversational

> skills are still immature. But we continue to press on...

>

> Before we began the biomedical journey, our little guy would cover

> his ears, scream and bang his head when his mom played a CD. He

> lined up everything that he could. He was sensory seeking, but

> lacked pain sensation. He craved motion, cause and effect, he was

> destructive and was continually frustrated because he was unable

to

> communicate his needs. His interaction with other kids, including

> his sibs was minimal, if at all. He was lost in his own world....

>

> When he was 5, Deb signed him up for soccer with his 3 yo sis. She

> got it...he did not. He played T-ball with his then 6 yo brother.

> Again, he was this little lost boy. Last spring, he was in the

> chorus of the Euclid Community Theatre presentation of " Oliver "

with

> his mom and big sis. He did pretty good. He performed in 7 shows.

> This summer, he played T-ball without his brother, he learned to

> ride a two wheeler, he asked to join swim team, he learned to hit

> golf balls, and play putt putt. His present sport is Cross

Country.

> He asked his mom if he could " do the running game " . His brother

ran

> last year, but when his mom told him that was playing

football

> and coud not be on the team, he said " Well, I can! " He is on a

> regular team with St. Felicitas school. His meets are with all the

> Catholic school in the diocese. His last meet, he placed 84th out

of

> 110 boys ages 6-8! Not bad.

>

> Biomedical treatment has changed his life. It has healed him from

> the inside out, allowing him to be able to learn. Noah never had

the

> advantage of early intervention because we missed the window of

> opportunity. He never had ABA or any other intervention until pre-

> school. For 2 years, he never got more than 10 min of OT per month

> and 40 min ST per month. We couldn't afford to hire outside

services

> because we had to make a financial choice. We chose the biomedical

> path. The choice was the right one because once the cloud lifted,

> learning came naturally. His educational team felt that they could

> no longer meet his needs. The services available through the

school

> were no longer adaquate as his rate of learning increased. They

> offered to send him to the Achievement Center for pre-school last

> year, and again this year, as a kindergartener.

>

> Noah is recovered physically, which is leading him closer to

loosing

> his diagnosis. Whether or not he recovers 100% is something we

will

> have to wait and see. If he does, that'll be great. If his

deficits

> keep him on the spectrum, that is ok too. He is a happy, social

and

> very bright child. We are far from finished. We would like to do

> HBOT, but that will have to wait until summer, unless Deb can get

> her insurance to cover at least some of it. Of course, we won't

hold

> our breath, because her old insurance has reimbursed us absolutely

> nothing! We are hoping that sinced they have a new Provider, some

> things will be covered.... We'll see!

>

> Bottom line, we LOVE DR. DeMio. He is one of the kindest and most

> intellegent individuals whom I have ever met. He is a very well

> known speaker and is highly respected throughtout the Country. He

> works tirelessly and is absolutely devoted to his mission to help

> our kids recover.

>

> Well, I had better go, It is late and I have to get up for work in

a

> few hours!!! If you have any more question, please feel free e-

mail

> me or call me on my cell phone: 216-406-9464.

>

> Take Care,

> -Trish

>

[Guest guest]

Thankyou so much for the information.We have been seeking answers for are kids and we havent found the answers I'm happy with.My husband is a little apprehensive because we have a limited budget and a large family but he is willing to try. We have two children that are affected with this are daughter is slowly coming out of it . But are son still is not talking he's bouncing around one day he will seem to be improving and the next day nothing. We live an hour and ahalf away but i think its worth it. DAN do they only treat children with autism? I'm not sure exactly what it is, are they like a naturpathic

Dr.? Thankyou so much Jo AnneTrish <minniemimi1@...> wrote: I saw your post inquiring about Dr. DeMio. We have been working with him for over 3 years. I have a 6 yo grandson, Noah, who was dx'd with autism, at 2 1/2. His autism was regressive, becoming most noticable following a flu shot at 19 months. After seemingly endless reading and research, we put the pieces together and realized that his autism was directly linked to his vaccines. I made an appointment with Dr. DeMio when it was still possible to get in within a week. He is an amazing man who is dedicated to helping to recover our ASD kids. He has a son who also regressed into autism after his shots, and has since dedicated his life to healing our children so that they can live healthy, happy and successful lives, no matter the level of recovery. He is an MD with a strong backgroungd in toxicology. He has offices in both Cleveland (Seven Hills) and Columbus (Worthington). My grandson has come a long,

long way since we have implemented the DAN! protocol. Initial tests showed that he was not excreting heavy metal toxins, and his immune system was a mess. He suffered from leaky gut, he was susceptable to infections and he was suffering from bacterial overgrowth in his intestinal tract. All of this contributed to increasing neuroloical damage. He also suffered from malabsorption, leading to both malnutrition and dangerously low mineral levels. Having been a typically developing child, we watched hopelessly as he regressed into autism. He lost most of his developing language while showing a steady increase of unusual, autistic like behaviors. We had him evaluated by various professionals, including a Hearing and Speech Pathologist, Speech and Language Therapist, Neurologist and the Educational team from the school district. Nobody ever gave us an exact "placement" level on the spectrum. It was as if they were

afraid for us to know the truth, but according to the ARI checklist, he fell just below the middle of the autism spectrum. The first thing we did per his initial appt, was a full panel of tests including Urine, fecal, Red Blood Cell and hair testing. We started getting his body ready for chelation by supplementing with vitamins and minerals. Dr. D. wanted us to try the gf/cf diet, but my daughter just couldn't grasp the concept of it, and was afraid that with 3 other children in the house, that it would be impossible. Dr. DeMio urged her to think about it. When the time was ready, we began chelation with transdermal dmps and td-glutithione. We began to see some gains within a few weeks. Soon afterwards, I managed to talk them into trying the diet for at least 3 months. Noah was addicted to the very foods that we suspected he was intolerant to. By removing these foods, we began to see even more gains. He was still

having infractions, resulting in spaciness, increased aggitation, and a return of diahrrea. One week-end, I took him to my house and enforced the diet 100%... he became pee trained within 3 days. We were encouraged and Deb found herself determined to enforce the diet. He was given Kirkman's enzymes for infranctions, which helped a little. Last year, after talking to Dr. Devin Houston from Houston Neutraceuticals, we switched him to AFP pepticide and Zyme Prime enzymes. The combination was beneficial to him and he became poop trained within two weeks of more regular use. He is now occasionally allowed to have regular food, as long as he takes the enzymes. In addition to chelation, he is on specific vitamins and minerals, Nordic Naturals ProEFA (essential fatty acids), LDN (Low Dose Naltrexone, B12, B-Complex and Oxytocin Nasal Spray. The LDN has helped his immune system and we saw immediate language and cognitive

gains. The B12 was a major addition to his protocol and we saw even more language. The Oxytocin, which is the most recent thing we added has helped him to not only improve his conversational speech, but he has made huge social gains. I don't have time to get into what each supplement does specifically, but the ones I mentioned have been key to his continued progress. Noah is close to recovery. Academically, he is performing close to his kindergarten level. We believe that cognitively, he is pretty much caught up. He still has social deficits and his conversational skills are still immature. But we continue to press on... Before we began the biomedical journey, our little guy would cover his ears, scream and bang his head when his mom played a CD. He lined up everything that he could. He was sensory seeking, but lacked pain sensation. He craved motion, cause and effect, he was destructive and was

continually frustrated because he was unable to communicate his needs. His interaction with other kids, including his sibs was minimal, if at all. He was lost in his own world.... When he was 5, Deb signed him up for soccer with his 3 yo sis. She got it...he did not. He played T-ball with his then 6 yo brother. Again, he was this little lost boy. Last spring, he was in the chorus of the Euclid Community Theatre presentation of "Oliver" with his mom and big sis. He did pretty good. He performed in 7 shows. This summer, he played T-ball without his brother, he learned to ride a two wheeler, he asked to join swim team, he learned to hit golf balls, and play putt putt. His present sport is Cross Country. He asked his mom if he could "do the running game". His brother ran last year, but when his mom told him that was playing football and coud not be on the team, he said "Well, I can!" He is on a regular team with

St. Felicitas school. His meets are with all the Catholic school in the diocese. His last meet, he placed 84th out of 110 boys ages 6-8! Not bad. Biomedical treatment has changed his life. It has healed him from the inside out, allowing him to be able to learn. Noah never had the advantage of early intervention because we missed the window of opportunity. He never had ABA or any other intervention until pre-school. For 2 years, he never got more than 10 min of OT per month and 40 min ST per month. We couldn't afford to hire outside services because we had to make a financial choice. We chose the biomedical path. The choice was the right one because once the cloud lifted, learning came naturally. His educational team felt that they could no longer meet his needs. The services available through the school were no longer adaquate as his rate of learning increased. They offered to send him to the Achievement Center

for pre-school last year, and again this year, as a kindergartener. Noah is recovered physically, which is leading him closer to loosing his diagnosis. Whether or not he recovers 100% is something we will have to wait and see. If he does, that'll be great. If his deficits keep him on the spectrum, that is ok too. He is a happy, social and very bright child. We are far from finished. We would like to do HBOT, but that will have to wait until summer, unless Deb can get her insurance to cover at least some of it. Of course, we won't hold our breath, because her old insurance has reimbursed us absolutely nothing! We are hoping that sinced they have a new Provider, some things will be covered.... We'll see! Bottom line, we LOVE DR. DeMio. He is one of the kindest and most intellegent individuals whom I have ever met. He is a very well known speaker and is highly respected throughtout the Country. He works

tirelessly and is absolutely devoted to his mission to help our kids recover. Well, I had better go, It is late and I have to get up for work in a few hours!!! If you have any more question, please feel free e-mail me or call me on my cell phone: 216-406-9464. Take Care, -Trish

Looking for a deal? Find great prices on flights and hotels with FareChase.

[Guest guest]

Thanks for the feedback. Some of it I expected, Dr. Krigsman's office doesn't take insurance either, and there are certainly a lot of labs with him, too. I don't think that many of the biomedical interventions (even the GFCF diet, which is pretty mainstream now) are commonly accepted by a lot of physicians. But some things can be over the top. The medical director at Monarch says that she needs our daughter to see a doctor face to face in order to accept prescriptions, so we have to find someone in/near Cleveland for things like her yeast issues (which, left untreated, cause her to have a lot of aggressive episodes-this treatment was a life saver). For now, we have to use physicians and doctors other than Thoughtful House and our family doctor. We tried so many medications over a lot of years with a great neuromolecular psychiatrist at U of Chicago, and we found that the biomedical is what helps her most. But I know all of our kids are so different. Thank you again for sharing your experience:)

In a message dated 8/13/2009 5:43:03 P.M. Central Daylight Time, m.snyder78@... writes:

He is a good listener, compasionate and takes alot of time. He runs a TON of labs. Then he wants them on alo of supplements and vitamins and yeast remover and amino acids and a special GF CF diet. If you are going to invest the time and money be prepared to be on board. He is very expensive and our insuranse did not cover him. My issues was the things he wanted us to do Actos bein one of them and pyrolle disorder treatment and diet were not well received by our medical neurologist or psychiatrist. So it was like I was torn. His way is different and things are not American pediatric approved. MD's don't support it or approve of it. I used the supplements and diet for about a year and then went medications when I didn't see many results. However, maybe I would have seen more success if I had stuck to it. >> Could anyone let me know how their visits at Dr. DeMio's went? We are > taking our daughter in November.> Thanks-> Carol C.>

[Guest guest]

Hi ----

Personally, I would have to disagree with the statement that Dr. DeMio does things that are not American perdiatric approved. he does prescribe certain medications for off label use such as Actos and they have helped many. I am a patient of his and so is my son, and he has never prescribed anything that was not indicated based on hard evidence/lab results as necessary. Regular doctors and neurologists are really not that knowledgable about many of the biomedical issues as they relate to autism symptoms -- in fact so many are downright against his approach or the biomedical approach. At this point in time I tink that they ar losing ground a bit with so many kids improving thanks to diet, immune suppport, etc.

There are some doctors that are non-biomedical yet they work closely with Dr. DeMio. I am grateful for those who make it easier on parents so they don't have to be torn. Medical professionals should work together in the best interest of the patient no matter what their beliefs or personal biases are. They are doing a disservice to their patiens when they refuse to collaborate. Us parents need to demand that they do this.

There is true legitimacy in biomedical treatments as our kids suffer from GI problems, immune system etc etc more frequently than non-autistic ones. And there is a connection between improvement in health and autism. Dr. DeMio is expensive b/c he takes his time and he is super thorough. Without this thoroughness there could not be a well designed treatment protocol developed that is individualized. Also, there are ways to save money - educate yourself, be knowledgable and ask the right questions fast during your visit. Know your insurance policy, appeal it, or get a third job. I have 3, my husband has 4 jobs.

I would rather go bankrupt that give up dr. DeMio's medical advice and treatment. They are the only interventions that have helped my son, even though his issues are serious and really require a brillian doctor like him. I am feeling finally healthier myself after Dr. DeMio took the time and looked at my stuff also --- I could not be more grateful. I can only recommend him!

Andre

Ps. This is my personal experience, not anything that NAA-NEO endorses but we support all autism teatments and therapies that help the kids and what parents want to pursue.

From: C6885@... <C6885@...>Subject: Re: [ ] Re: Dr. DeMio Date: Thursday, August 13, 2009, 10:11 PM

Thanks for the feedback. Some of it I expected, Dr. Krigsman's office doesn't take insurance either, and there are certainly a lot of labs with him, too. I don't think that many of the biomedical interventions (even the GFCF diet, which is pretty mainstream now) are commonly accepted by a lot of physicians. But some things can be over the top. The medical director at Monarch says that she needs our daughter to see a doctor face to face in order to accept prescriptions, so we have to find someone in/near Cleveland for things like her yeast issues (which, left untreated, cause her to have a lot of aggressive episodes-this treatment was a life saver). For now, we have to use physicians and doctors other than Thoughtful House and our family doctor. We tried so many medications over a lot of years with a great neuromolecular psychiatrist at U of Chicago, and we found that the biomedical is what

helps her most. But I know all of our kids are so different. Thank you again for sharing your experience:)

In a message dated 8/13/2009 5:43:03 P.M. Central Daylight Time, m.snyder78 (DOT) com writes:

He is a good listener, compasionate and takes alot of time. He runs a TON of labs. Then he wants them on alo of supplements and vitamins and yeast remover and amino acids and a special GF CF diet. If you are going to invest the time and money be prepared to be on board. He is very expensive and our insuranse did not cover him. My issues was the things he wanted us to do Actos bein one of them and pyrolle disorder treatment and diet were not well received by our medical neurologist or psychiatrist. So it was like I was torn. His way is different and things are not American pediatric approved. MD's don't support it or approve of it. I used the supplements and diet for about a year and then went medications when I didn't see many results. However, maybe I would have seen more success if I had stuck to it. >> Could anyone let me know how their visits at Dr. DeMio's went? We are > taking our daughter in November.> Thanks-> Carol C.>

[Guest guest]

How is your son's PANDAS now? We have tried so much and so many Dr's and can not

seem to kick it. We are finishing up 3 weeks of steroids. I hope he will have a

time of improvement soon to follow. I see you mentioned incontinence. My son is

having bowel issues and I wonder if it is tied to the antibiotics. I am taking a

break from them. I am a bit scared with school starting though that he will get

sick. Did you see the book Saving Sammy coming out on PANDAS next month? He used

high doses of antibiotics to get cured. I think my son gets yeast issues too

from antibiotics and I use probiotics, Kefir and culturelle. So is your son

autistic also with PANDAS?

> > >

> > > Could anyone let me know how their visits at Dr. DeMio's went? We are

> > > taking our daughter in November.

> > > Thanks-

> > > Carol C.

> > >

> >

> >

> >

> >

> >

> >

> >

> >

> > ____________ _________ _________ ______

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > ____________ _________ _________ ______

> > Express your personality in color! Preview and select themes for Hotmail®.

> > _Try it now._

> > (http://www.windowsl ive-hotmail. com/LearnMore/ personalize. aspx?ocid=

PID23391: :T:WLMTAGL: ON:WL:en- US:WM_HYGN_ express:082009)

> >

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

Hi,

Yes, my son has strep in the gut although no formal dg of PANDAS. I could ask for it from the neurologist or Dr.DeMio, but see the point is treating it, not the label, for me.

After the course of antibiotic his OCDs have gone down a bit but he became incontinent (=yeast) and developed diarrhea also. We re-tested his stool by Great Plains Comprehensive Stool Analysis (more sensitive than regular hospital stool tests) and the strep was at the same level as it was before the antibiotic. Plus we had to deal with MAJOR regression b/c of the massive yeast infection post antibiotic. Now that we have an aggressive antifungal treatment under way ---- surprise!!!!!!!! My son is almost fully potty-trained again! So that means that yeast is back down, but now OCDs are back up again (bacteria are up) mostly when he has seizures/auras throughout the day, off an on.

I can't tell you what to do but you need to go to either of these good doctors who are knowledgable about PANDAS and their treatment:

Dr.

Dr.Demio

preferably both and have them work together

or

Thoughtful House...

These are the ones I found helpful and very competent

You can not figure this out on your own, you have to have a good doctor.

In terms of what we are going to do next:

We are going to have a follow up with Dr. and explore with her some other avenues to treat strep, not via antibiotic (thinking maybe IVIG also b/c my son's immune system is quite compromised, and also b/c of his super high allergies)

I am going to continue to see Dr.DeMio and work with him

We are getting some immunological work up done by Dr. Hofstoffer at South Green Suburban --- just to get that opinion and confirmation of my son's immunological status

I am getting a nutritional analysis by the Thoughtful House

I am getting specific labwork done to see Dr. Krigsman at the Thoughful House and have a full GI workup done this year for my son incl. endoscopy, camera pill, colonoscopy, the whole thing

I am demanding that all these doct collaborate

It can not work any other way

You have to get things investigated

Please make an appointment with a doctor, you have my suggestions

Best of luck to you and keep me posted

From: m.snyder78 <m.snyder78@...>Subject: [ ] Re: Dr. DeMio Date: Sunday, August 16, 2009, 11:11 PM

How is your son's PANDAS now? We have tried so much and so many Dr's and can not seem to kick it. We are finishing up 3 weeks of steroids. I hope he will have a time of improvement soon to follow. I see you mentioned incontinence. My son is having bowel issues and I wonder if it is tied to the antibiotics. I am taking a break from them. I am a bit scared with school starting though that he will get sick. Did you see the book Saving Sammy coming out on PANDAS next month? He used high doses of antibiotics to get cured. I think my son gets yeast issues too from antibiotics and I use probiotics, Kefir and culturelle. So is your son autistic also with PANDAS? > > >> > > Could anyone let me know how their visits at Dr. DeMio's went? We are > > > taking our daughter in November.> > > Thanks-> > > Carol C.> > >> > > > > > > > > > > > > > > > > > ____________ _________ _________ ______> > > > > > > > > > > > > > > > > > > > > >

> > ____________ _________ _________ ______> > Express your personality in color! Preview and select themes for Hotmail®. > > _Try it now._ > > (http://www.windowsl ive-hotmail. com/LearnMore/ personalize. aspx?ocid= PID23391: :T:WLMTAGL: ON:WL:en- US:WM_HYGN_ express:082009)> >> > > > > > > > > > > > > > > > > ____________ _________ _________ _________ _________ __>