Re: Laurie/was:/was: Hello, I'm returning to Ohio with my autisitc son - resource info requested.

[Guest guest]

Laurie,

Glad to hear things are going well. Let us know about your visit with Dr. Demio. What is his "up front" fee, if you don't mind my asking?

I think Dr. Demio will pretty much do what you want, but I have heard he does not like Ala.

TIA,

----- Original Message -----

From: Laurie Kowalski

Sent: Saturday, March 18, 2006 11:00 PM

Subject: Re: [ ]/was: Hello, I'm returning to Ohio with my autisitc son - resource info requested.

and ,I have also been doing the chelation thing on my ownfor the last few rounds and "Ladyshrink", you havehelped me a lot!!! I read the group a lot and have learned so much. You haveanswered many of my questions and I thank you forthat. I am using ALA alone now and have really uppedthe supplements this time. So far, so good....I also saw Dr Belgrad a few years back--no comment. Also saw Dr. Tennpenny and my son did wonderfully withthe allergy elimination treatments. We are scheduledfor Dr. Demio at the end of the month---I figure whatthe heck! I might as well see what he has to say!LOL! I guess I want to cover all the bases, right? That was a great story about your son. This groupneeds to hear those kinds of comments. That is whatkeeps us going.....Laurie--- Cochran <Ladyshrink111@...>wrote:> Yes, in Lordstown/Berlin Center area. Dr. Vlad is a> distant relative, didn't know he was still in> practice, nice man.> > Dan drs stuck like glue to gf/cf thing. Before we> did the testing with dr belgrad, I asked her if the> test for casein and gluten came back without> allergies/peptides would we have to do the diet? > And she said YES!!! What the heck? They why bother> with the test.> > When we tried the diet and she lost language, we> told dr belgrad about it and she said that she was> not concerned!!! I told her we were logical people> who would have to have some kind of reason why> losing language was not cause for concern or> considered a benign event. We put her back on the> milk, no enzymes.> > We also used oral ala with dmsa, with great results.> Wonderful, your experience at BK. How old is your> son?> > Do you know of any other moms doing biomed in our> area? How did you learn of the low/frequent dosing?> > My practice is in Warren, just me. I agree we would> make a great pair, as I am neurotic also, don't know> of practically anyone who isn't.> > Will look forward to maybe getting the brochure, but> maybe you could tell me something about the> organization? Just what is your purpose and what do> you do?> > > ----- Original Message ----- > From: rmaher1969@... > > Sent: Saturday, March 18, 2006 9:53 PM> Subject: Re: [ ]/was: Hello, I'm> returning to Ohio with my autisitc son - resource> info requested.> > > ,> I agree, most of the docs aren't as up on all> the bio-med as we are...lol. My pediatrician is Dr.> Vlad. He was my ped when I was a kid, so he seemed> like the natural choice for my boys. We don't do> GF/Cf anymore either, we use digestive enzymes with> great results. I wonder why no DAN Docs ever> recommend them? > > We are using oral ALA with oral DMSA 1:1 ratio> frequent/low dose. We have seen max results the> past two months. Seeing some regression during the> "ON" days, but much better all around on the "OFF"> days.> > I noticed last night we took our son to play at> Burger King (a bribe...long story..lol) and he was> actually with the other kids interacting, which has> been coming about for the past 6 months, but the> biggest change, was the kids didn't reject him. > None of them seemed to notice anything different! > Other kids usually will look at him like he's from> Mars, and last night, he was just one of them. It> was AWESOME!> > BTW, where are you in NE Ohio?> A psychologist huh? That's great, I'm a> neurotic, we could have a great friendship!> LOL> > > ----- Original Message ----- > From: Cochran > > Sent: 3/18/2006 8:36:33 PM > Subject: Re: [ ]/was: Hello, I'm> returning to Ohio with my autisitc son - resource> info requested.> > > Well, think you have me confused with the lady> moving back to Ohio. We have always been in Ohio.> Sorry should have changed the post heading.> > We did see dr. Belgrad, but she had just> started, that was 1.5 years ago, and, she told us we> knew more than she did.> > Dr. Khoury is a great woman, I am a psychologist> and we have had the same patients over the years,> but she is also just starting.> > We ended up doing it on our own also. Couldn't> find a dr who would take us as she did horribly on> the gf/cf diet, lost language and looked absolutely> awful. After three weeks we put her back on milk> and we chelated anyway with wonderful results.> > We contacted Dr. Tenpenny, but as she tested> without allergies, did not want to go through her> long and expensive allergy testing. By the time Dr.> Demio came on the scene we were well under way,> although we have used oral Ala, and I understand he> is not a fan, so probably would not have been a good> fit either.> > She has some residual fine motor problems,> writing does not come easy, but other than that, she> is recovered. > > Can I ask who is your ped? We are looking for a> new one. Don't apologize for long posts, I love them> :-)> > TIA,> > > ----- Original Message ----- > From: rmaher1969@... > > Sent: Saturday, March 18, 2006 8:25 PM> Subject: Re: [ ]/was: Hello, I'm> returning to Ohio with my autisitc son - resource> info requested.> > > ,> Dr. Findley Belgrad, who we used> to see. We are doing it all on our own now. Docs> are too $$$!! > May I ask, why are you moving back to> the area? Rich Center? Where in New York are you> coming from? We used to live in NY and considered> moving back for the school tied with > Carbone, but hubby can't find work there and we> would have to live with my mother-in-law. It just> wouldn't work out I'm afraid! > > There is also a DAN doc in Cleveland Dr.> Demio, and a doc in Meadville PA who is on the DAN> board, he does chelation- Dr. Piersel. There> may be more, others on this board will know. My ped> isn't involved with any of our bio-med treatments> for our son, but he listens and seems sympathetic> although I don't think he fully understands or> believes in what we're doing. > > What exactly did you do in New York as a> "pioneer" We are in desperate need of more parents> like you. I have met very few who are doing bio-med> or ABA in this area. Our Organization is called> TEAM To Find a Way. Actually, Dr. Vinci-Khoury was> one of the original directors, but she was> overloaded with other obligations and we didn't get> much momentum going, There was also a problem with a> conflict of interest. As and organization, we can't> tell parents about one specific doctor. She is a> wonderful woman and I told her that we will be> recommending her to parents as a choice among docs. > > > Sorry I'm so long winded...> > > ----- Original Message ----- > From: Cochran > > Sent: 3/18/2006 7:51:15 PM > Subject: Re: [ ]/was: Hello,> I'm returning to Ohio with my autisitc son -> resource info requested.> > > Hi ,> > I know of Dr. Vinci-Khoury and Dr.> , sorry can't remember her last name, who> are dan! drs in warren/youngstown. Anybody else? > Whom do you see, if I might ask?> > > ----- Original Message ----- > From: rmaher1969@... > > Sent: Saturday, March 18, 2006 6:37 PM> Subject: RE: [ ] Hello, I'm> returning to Ohio with my autisitc son - resource> info requested.> > > Kim,> Welcome back to Ohio. I know of a few> DAN! docs locally (warren/youngstown) but, otherwise> I don't know of many sympathetic Peds. BTW, are you> still feeling pioneerish? We are opening an autism> center here in Trumbull County and we will need> parent's === message truncated ===

[Guest guest]

Laurie,

No hard work really. Didn't know she could read until we were in the car going down Mahoning Avenue when she was 2.5 and she informed me that there was a place we had passed that you get tatooes! Imagine my surprise. After I went back to the sign and she read the whole thing, I asked her why she didnt tell me she could read and she gave the expected response of "You never asked me."

Did your boy who read early have trouble in school, academically? When he learned to read, did he progress with his reading to this level by kindergarten? What did they do with him? Did it cause problems in school for him?

Yes, I agree, when they are that cognitive, many people discount there could be anything amiss. That was part of our problem when we went to Akron Children's Hospital, with both pediatric neurologists. But I thought they would know that a lot of kids on the spectrum were hyperlexic, as she is.

Maybe we should have taken her to Cleveland for the second evaluation.

About Dr. DeMio, he was involved with the Shoemaker case, maybe you heard something about it, so think he raised his fees. I know even in the A-M group they were posting about it, making sure everyone knew he was involved. Yes, please let me know what the $465.00 covers. How much you want to be that that is just his consultation fee?

We are going to see a dr in the summer who takes our insurance. Good dr, recommended to me by Andy, but he is around Philadelphia! You only have to go once, but still!

Anybody know where you can go to get a really good assessment of all of their developmental skills? I was unimpressed with Akron, of course. I don't want to go to anyone I know, for obvious reasons. I don't want a psychologist, necessarily, but maybe a developmental psychologist or child developmental expert.

I did see your tests on A-M, but I don't know how to decipher them, wish I did. There is a dr popplewell on the A-M list, maybe you could post with his name in the heading. You didn't hear that from me.

Good luck, Laurie,

----- Original Message -----

From: Laurie Kowalski

Sent: Monday, March 20, 2006 11:34 AM

Subject: Re: [ ]/was: Hello, I'm returning to Ohio with my autisitc son - resource info requested.

,Congratulations on all of your hard work!!! My sontaught himself to read at about 2.5-3 years old. Hewas and still is unbelievable on the computer. Heloves to research his favorite toys on E-bay! Gosh, Ihope he never gets ahold of my credit card numbers!!!!Unfortunately, these things delayed our believingthat he was on the spectrum. But----once we figuredit out we tried everything to help him. I still thinkthat the chelation is a big part and I am continuingwith that. Also---from your other post, Dr. Demeiocharges $465.00 at the first visit. I am not surewhat that includes. We took Charlie to a MetabolicNeurologist at the Cleve. Clinic last summer and heran about $9,000.00 worth of tests (we are stillpending with our insurance)I have posted these resultson the group but no one seems to wantto answer me. I am very worried because some of hisamino acids were really off---i.e. Methionine was a 0!I have a call into the neuro., but maybe he didn'tknow how to interpret them??? Anyways, I think partof Demeio's fee may be lab tests. I'll let you knowonce I go.Laurie