mensah medical -- IL area

[smartyjones]

this medical organization in IL apparently works with pryolle and methylation issues -- anyone have any experience or knowledge of? please PM if more comfortable discussing.

thanks!

 

http://www.mensahmedical.com/Seminars.html

[PowPow]

do not know anything about them-- except they are going to be near you and near me in the next few weeks...

are you going?

[MomWithOCDSon]

Smarty --

 

I don't know anything about them, unfortunately. But I did want to say thanks for posting this once you happened upon it. I've been looking for an integrative or biomedical practice locally that felt "right" for my family, and this is another opportunity. Chances are, if they're lecturing in your area soon, you may "meet" them before I do. If you do, please post or PM and let me know what you think. I'll be sure to do the same if we decide to schedule an appointment.

[PowPow]

MomWithOCDSON-

have you considered the pfeiffer institute near Chicago?

I am not sure where you live- I always thought PA- but now I see it says midwest!

pfeiffer

 

They come to my area once a year- your area, too, smarty

We may try to see them- or even go out there to see them.

[MomWithOCDSon]

MomWithOCDSON-

have you considered the pfeiffer institute near Chicago?

I am not sure where you live- I always thought PA- but now I see it says midwest!

pfeiffer

 

I did look into Pfeiffer a few years ago, but at least at that time, they didn't seem to have anyone well-versed in OCD which is what we thought we were dealing with at the time, and the most tenacious of DS's PANDAS behaviors. I realize the biomedical approach may still have been helpful, but I was then and remain now in search of that group that will treat my whole child and not just bits and pieces of him!

 

Perhaps I should look into Pfeiffer again, but I'm also interested in this Mensah group now; they specifically cite OCD as one of the conditions of which they're knowledgable.

[LNN]

Dr. Bill Walsh (who these guys seem to be in synch with) has written a new book http://www.amazon.com/Nutrient-Power-Heal-Biochemistry-Brain/dp/1620872587/ref=sr_1_1?s=books&ie=UTF8&qid=1339328122&sr=1-1&keywords=nutrient+power

 

or you can order it directly from the Walsh Institute

http://www.walshresearch.mybigcommerce.com/nutrient-power-book/

 

In the current issue of Latitudes Online, he gives a synopsis of his current thinking.

 

Also, here's a link with presentations given by Walsh in the past. I looked at the Behavior Disorder presentation and it had some interesting points http://walshresearch.org/MedicalConditions.asp

 

and here is a video on the Walsh site by Dr Mensah http://walshresearch.org/Video/FeaturedVideo.asp?var=http://www.youtube.com/watch?v=IAs0cKQcxvI?version=3&hl=en_US&rel=0&var2=Dr%20Albert%20Mensah%20On%20Mental%20Health%20At%20Outreach%202010

 

I hope these docs pan out - sounds promising!

Edited June 10, 2012 by LLM

[smartyjones]

i'm going to the info session tomorrow night -- let me know if anyone has thoughts of some questions

[MomWithOCDSon]

i'm going to the info session tomorrow night -- let me know if anyone has thoughts of some questions

 

So Smarty -- Do tell!! What'd you think? Anything revolutionary come to light?

[Dedee]

Oh yes.....I am so interested in hearing how it went. This is the first I have heard about this group. I have recently learned that all 3 of my PANS children have MTHFR mutations and all the mutations are different. One is C677t heterozygous, another is c677t homozygous, and my third is compound heterozygous c677t / A1298. In addition my daughter was just diagnosed with pyroluria and I suspect one of my other children has it also. I just came back from Florida from an appointment there. Dr. M was out of town but we saw the assistant director who is awesome as well. Their recommendation was for us to see a genetic counselor. They were very interested in the results and wanted us to send the results from our entire family and are considering adding MTHFR to their routine blood panel. However, when it came to recommendations for treatment....really nothing more than I already knew. They offered a prescription for Deplin but said she needed to do more research and would call me back.

 

So, what I am getting to with all this is to say that I desperately need an informed experienced provider to guide my treatment for my kids. I realize I would most likely need to travel. So if anyone of you all utilize the services of this group please let me know how it goes. We go see a LLMD in July, so I am hopeful for at least some guidance at that time.

 

Nancy, do you think you will end up making an appointment? PM me if you do and give me some details.

 

Thanks everyone! You guys are awesome!

 

Dedee