surgery not always best, botox can be harmful!

[admin]

http://www.stjohn-clarkptc.com/html/paul.htm
we took our child to this man who invented this form of therapy today. he helped with his range so much i am shocked. our md feild has no clue how to help bpi. i am seriously advising anyone considering surgery or botox to check this web and read about nst. i have been to texas, miami, philly, and this man has helped us more in his one hour than all these bpi specialists combined! i had my doubts before our session. but, once i met him & saw his results i do not think i am going to another bpi specialists ever again. i know this will be critized but for those people who can look out side this medical experimental box will really benifit! i hope i can save another child from aggressive approaches to bpi.

[admin]

It sounds like you are sold on this treatment. Is this a massage therapy that will provide long term results? Can you elaborate on what actually was done to your child during this visit? Has your child had any surgeries for this injury? Thanks for sharing.

[katep]

If it truly produces better results, it will catch on, and it won't only be performed by one center.

Sorry... there is too much abuse of the internet for marketing already. I personally will never take my recommendations from anonymous posters on an internet message board.

Kate

[admin]

We are in a lawsuit and that is why. and this therapy is not only done at ONE FACILITY he INVENTED the therapy and has taught at duke,north carolina, john hopkins, ford clinic. he intergrates massage and orient methods b/c he was a medic in the green bret in veitnam. there are so much he has done that i could fill a page. anyways, he helped with our range of motion today. more than anyone so far. so we are going to cintinue with his therapy. i am a mom trying to help other parents who want to know some other treatments instead of surigical intervention!

[admin]

Dear Null, I am the same guest above, and I APPLAUD YOU FOR SEEKING ANY INTERVENTION THAT YOU CAN FOR YOUR CHILD'S INJURY...THAT'S WHAT BEING A GREAT PARENT IS ALL ABOUT!!!!

[admin]

How old is your child and did he have an obpi? How many times do you need to go?

[Tanya in NY]

It sounds like this treatment is mainly for pain. Thus far (thank goodness) our daughter hasn't experienced pain unless she fell or postop.

I applaud you for making this information known on this website, afterall, that is what the forum is for is to help others and support them. That being said, I am happy with our choice to have had surgery for Amber once. This treatment that you suggest would not have addressed our daughter's issue. I'm glad it seems to have thus far addressed your child's issue.

Keep providing resource information for all of us to view, but please be sensitive to those who have chosen other routes of treatment for their children and as adults. This is quite a sensitive issue that many have spent months upon months of research and heartache before coming to their own personal decisions.

Tanya in NY
Amber's Mom, ROBPI, 3 years old

[Lizzie]

I am sorry, Tanya and Katep, but it is for you to respect without critism or objection what the originating Null wrote, particularly with regard to the UPBN Policies over these Boards.

I too have gone through the difficult decisions for my child -- completely by myself. In my opinion, Null is obviously on the same path that we all have travelled. She too is struggling to understand what is best for her child. When I read Null's words I immediately identified with her because I have also in my journey had an appointment with a medical professional that very much altered my direction as to my child's care. Null is just expressing her comfort, and her new knowledge. She isn't claiming to be a doctor, she has made a discovery as a mother.

There is not one day that goes by that I doubt and wonder whether I did the best thing for my child. But I do take one-day-at-a-time, and I take every new bit of information with the same commitment. I read these posts to learn, yet I do not take personal offense to the discoveries and prehaps momentary glories and comforts of another parent, even if their path is in contrast to my own.

Lizzie

[katep]

Lizzie,

I do respect alternative therapies and sharing information here. But many posts seem to cross over into blatant advertising, and that makes me uncomfortable *especially* when the post is anonymous. Personal "testimonials" are an advertising standard, and this board is very susceptible to abuse in that regard. At least in advertising, there has to be fine print at the bottom saying "actual statements portrayed by actors" or somesuch thing. There is nothing like that here, so I will continue to take such anonymous "recommendations" with a grain of salt!

Kate

[Lizzie]

I also really want to urge Katep, Tanya and others to recall the history on the Forum. I have been a registered member of this forum, granted under different names, for about three years, and much has changed in that time. We have resolved and dealt with many dilemnas. Primary vs. secondary, then Dr. Nath suddenly performed a secondary on an infant that was due for primary: that moment was very influential to me. I have read dozens of postings with regard to the outcome of the mod quad and then with the right surgeon, then with more and more mod quad successes it seemed like I had learned the best route and with the best doctor. I am reading much about behaviorial problem associated with the child of BPI, prehaps soon we will learn a direct correlation. Then a young and successful BPIed adult jumps in and asks what the fuss is all about as we as parents to younger BPI affected children worry and worry every day. And now Null proposes, and she sounds very educated and has obviously done alot of research that the Integrative Neurosomatic Therapy may actually be very effective.

The best thing about the UBPN is its history, and the way that we are participating in that history. Let's now not lose or discourage every bit of those things that have contributed here.

Having said that I did visit the site http://www.stjohn-clarkptc.com site. Randy Clark has no rigorous medical credentials or affiliations, and is rather back-handed with regard to insurance coverage. Thus, I personally would never explore his work as an option for my child.

Lizzie