Dr. DeMio

[Guest guest]

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]

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]

Thank you, that's so good to know, as we are coming in blind in trying to find a doctor in Ohio. We have consulted with some wonderful physicians, like Dr. Krigsman and Dr. Wakefield and our kind family doctor, and some not so good ones, too. I was heartened reading what you've written, because these are some of the things that we've discovered help our daughter, too. We have good friends who stand by the meds that seem to help their kids, but Gennie didn't respond to any of them. We tried Risperdal, and all it did was blunt what was still going on inside of her. That was the last time we used psychiatric meds with her, and that was 7 years ago. We have a ways to go, and maybe the damage to her systems, now that she's 20, is too ingrained to see the progress that parents of younger kids see. But from our experience so far, it would not be out of the realm of possibility for her to be healthy and pain free and function at the best level that she can with biomedical treatments, and I am grateful that we started researching late better than never to that end.

As far as the money goes, we just cut back on other things to afford them. (Our vacations are our doctor's visits!) The insurance is a sticking point, because it prevents some families from seeking out biomedical help for their kids, and that's sad. But it's not the doctors' faults that the insurance companies won't recognize the science based interventions, and your other points are well taken, too. (And wouldn't it be nice to stop the Snydermans and Browns from spreading misinformation to large audiences!)

Thanks for the heads up about the wait, we try to schedule our daughter on a day when we can be near the front of the queue, because big kids make big ruckuses:) But we have become masters of distraction, like all of you, too, and I'll have everything ready now that I know that we'll be there a while.

I appreciate the kindness of the NE Ohioans in sharing your opinions. We really like it around here, we're here every weekend and often more, and our son liked the area so much that he moved to Ohio. We're really looking forward to meeting Dr. DeMio, just wish it wasn't so far in the future. But it'll be worth the wait-

Carol

In a message dated 8/14/2009 11:36:12 A.M. Central Daylight Time, momdebbie@... writes:

In my humble opinion Dr. Demio rocks! So does his staff. In our little micro-ism of the world known as NE Ohio, the (American pediatrics approved) experts in the developmental center at Akron Children's hospital prescribe heavy duty antipyschotic drugs that haven't had any studies done on their long term use and effects on our kids and refuses to run a simple test to see if a child is a strep carrier, Dr. Demio is a Godsend. Given the choice, I would try a transdermal cream,dietary changes, Actos, Glutathione, B-12 , pro-biotics, enzymes, etc... any day over the dangers of a drug like Risperdol which American pediatrics approve of and happily prescribe "off label" (since it was first designed for institutionalized adults who are severe schizophrenics.) It causes our kids to gain weight, affects their ability to feel a full bladder and can cause much harm yet somehow that mess of a drug got into the apprpval box with these self called "experts" who frown upon much gentler and more effective strategies.Yes, it can be expensive going the alternative route but Dr. Demio is approachable, compassionate and will spend whatever time is necessary with you. More importantly is that he listens and RESPECTS you as the key component in helping your child get better. He knows that most of us come to see him having spent sleepless nights on the net researching approaches and is ready to discuss the pros and cons of each possible treatment while ordering the tests needed to gather baseline info and to keep your child safe throughout the course of action. He is also reachable via phone appointments, and his staff handle paperwork and issues quickly.Yeah, it would first appear to be a great thing if he would take Medicaid (my son has the I/O waiver) but I'm of the strong belief that he couldn't possibly keep helping kids if he was a medicaid provider, as they wouldn't begin to pay enough to cover the extent of what he provides. He would have to cut back the majority of time he spends during a visit if Medicaid was in control. In addition, medicaid would be all over his back and never approve him authorizing the tests he orders to see what is really going on with our kids. He shouldn't become a medicaid provider for the same reason Dr. Nevada at Kidslink shouldn't... because it would greatly hinder what they can provide, thus our kids progress in the long run would be affected.One tidbit of advice I offer is to be prepared for a possible wait. Bring snacks and whatever will best occupy your child. Bring along your spouse, aide or friend to help. This goes back to what I said earlier... he spends what time is necessary and doesn't rush through appointments. Trust that he is going to provide you and your child with the same benefit. There is a park/field right behind his building. During my son's last appointment we ran around out back while waiting for our turn. Then after Dr. Demio examined , I had his Dad take back outside to play some more while the good doctor and I got into the heavy and layered discussions about 's issues and came up with a plan, tests, wrote out prescriptions, etc...I agree with 100%. Come prepared with your research, questions, ins info, etc...

Debbie Young

From: egerpatt Date: Fri, 14 Aug 2009 04:55:57 -0700Subject: Re: [ ] Re: Dr. DeMio

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: C6885aol <C6885aol>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.>

Express your personality in color! Preview and select themes for Hotmail®. Try it now.

[Guest guest]

In my humble opinion Dr. Demio rocks! So does his staff. In our little micro-ism of the world known as NE Ohio, the (American pediatrics approved) experts in the developmental center at Akron Children's hospital prescribe heavy duty antipyschotic drugs that haven't had any studies done on their long term use and effects on our kids and refuses to run a simple test to see if a child is a strep carrier, Dr. Demio is a Godsend. Given the choice, I would try a transdermal cream,dietary changes, Actos, Glutathione, B-12 , pro-biotics, enzymes, etc... any day over the dangers of a drug like Risperdol which American pediatrics approve of and happily prescribe "off label" (since it was first designed for institutionalized adults who are severe schizophrenics.) It causes our kids to gain weight, affects their ability to feel a full bladder and can cause much harm yet somehow that mess of a drug got into the apprpval box with these self called "experts" who frown upon much gentler and more effective strategies.Yes, it can be expensive going the alternative route but Dr. Demio is approachable, compassionate and will spend whatever time is necessary with you. More importantly is that he listens and RESPECTS you as the key component in helping your child get better. He knows that most of us come to see him having spent sleepless nights on the net researching approaches and is ready to discuss the pros and cons of each possible treatment while ordering the tests needed to gather baseline info and to keep your child safe throughout the course of action. He is also reachable via phone appointments, and his staff handle paperwork and issues quickly.Yeah, it would first appear to be a great thing if he would take Medicaid (my son has the I/O waiver) but I'm of the strong belief that he couldn't possibly keep helping kids if he was a medicaid provider, as they wouldn't begin to pay enough to cover the extent of what he provides. He would have to cut back the majority of time he spends during a visit if Medicaid was in control. In addition, medicaid would be all over his back and never approve him authorizing the tests he orders to see what is really going on with our kids. He shouldn't become a medicaid provider for the same reason Dr. Nevada at Kidslink shouldn't... because it would greatly hinder what they can provide, thus our kids progress in the long run would be affected.One tidbit of advice I offer is to be prepared for a possible wait. Bring snacks and whatever will best occupy your child. Bring along your spouse, aide or friend to help. This goes back to what I said earlier... he spends what time is necessary

and doesn't rush through appointments. Trust that he is going to

provide you and your child with the same benefit. There is a park/field right behind his building. During my son's last appointment we ran around out back while waiting for our turn. Then after Dr. Demio examined , I had his Dad take back outside to play some more while the good doctor and I got into the heavy and layered discussions about 's issues and came up with a plan, tests, wrote out prescriptions, etc...I agree with 100%. Come prepared with your research, questions, ins info, etc...

Debbie Young

From: egerpatt@...Date: Fri, 14 Aug 2009 04:55:57 -0700Subject: Re: [ ] Re: Dr. DeMio

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: C6885aol <C6885aol>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.>

Express your personality in color! Preview and select themes for Hotmail®. Try it now.

[Guest guest]

Sorry if I offended you. I did not think the Actos was pediatric approved and I

was giving it to my son. It can be a risky med to use with kids since it is used

off label and is used for diabetes in adults. I agree that psychitrist only give

heavy meds but I was just stating my experience in trying to work with Demio and

our neurologist, psychiatrist together. I received a lot of flack from our MD's.

Dr. Demio is a nice person and probably helps alot of people, however my son has

PANDAS and Aspergers and I did not see a change after six months. Like I said I

wonder if I would have stuck with it longer if he would have improvedt? Instead

we went the meds route and he isn't any better either and now I have him on 3

meds that I would like to get him off of.

> >

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

> > taking our daughter in November.

> > Thanks-

> > Carol C.

> >

>

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> ____________________________________

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

> _Try it now._

>

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WLMTAGL:ON:WL:en-US:WM_HYGN_express:082009)

>

[Guest guest]

I dont think you offended any of us :-)

I have been going to Dr DeMio with my son and we have tried many things. Not Actos, but other immuno modulators such as Low Dose Naltrexone which worked wonders for my son's immune system. My son has PANDAS also but he did not respond well to antibiotics - he got a TON of yeast from that, got incontinent again, and guess what? The strep resisted the antibiotic too!

I guess all I am saying is that nothing works the same way for everyone.

My son just could not tolerate curcumin, which is another alternative in how to rev up our kids immune systems. It completely eliminated my arthiritis though :-) which is also immune system related, just like PANDAS.

So...maybe if you had stuck with Actos it may have improved things but chances are they would not have. You could have tried other avenues with Dr. DeMio or other docs. Antibitics, or things that could enhance/correct the immune system - curcumin, LDN, transfer factor, olive leaf extract, even HBOT, just to name a few, have all worked well for some, and less for others....

it is a trial and error thing unfortunately IMO

Any decision is right, the one you have made based on the info available to you at the time and based on other circumstances, so please don't beat yourself up. You can go back to try something else, natural, again, when you are ready, or you can just see what happens.....

Sincerely,

Pattison

National Autism Association - Northeast Ohio (NAA-NEO) Helping Hand Program Manager P. O. Box 221195 Beachwood, OH 44122 E-mail: apattison@... Phone (216)544-1231 Web: www.autismnortheastohio.org--- On Sat, 8/15/09, m.snyder78 <m.snyder78@...> wrote:

From: m.snyder78 <m.snyder78@...>Subject: [ ] Re: Dr. DeMio Date: Saturday, August 15, 2009, 9:09 PM

Sorry if I offended you. I did not think the Actos was pediatric approved and I was giving it to my son. It can be a risky med to use with kids since it is used off label and is used for diabetes in adults. I agree that psychitrist only give heavy meds but I was just stating my experience in trying to work with Demio and our neurologist, psychiatrist together. I received a lot of flack from our MD's. Dr. Demio is a nice person and probably helps alot of people, however my son has PANDAS and Aspergers and I did not see a change after six months. Like I said I wonder if I would have stuck with it longer if he would have improvedt? Instead we went the meds route and he isn't any better either and now I have him on 3 meds that I would like to get him off of. > >> > 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]

We have never seen Dr because we have a PPO but I heard she is good with

PANDAS. I agree they need to collaborate. We saw Dr. Beth latimer this summer in

MD and she prescribed the steroids. Although he has been irritable and quick

angered all summer I think I have seen some improvemens in the past few days.

Does your son have high anxiety? Mine is super anxious. Interestin about the

bowel issues you are having also. We saw Dr. Cunningham psychologist at

University, encopresis is her specialty.

> > > >

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

> > > > taking our daughter in November.

> > > > Thanks-

> > > > Carol C.

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> > > 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)

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