Ernie Posted October 9, 2011 Report Share Posted October 9, 2011 Hi my friends,We are just back from seeing Dr Julian Stewart at the New York Medical College for a week of autonomic testing with my son.We are more than satisfied with that Stewart and his team. We got the diagnosis written black on white, school recommendation, treatment plan and much more.It was really worth the money, the time and the energy to go and see him.This week we are meeting with the school director and nurse to organize my son's accomodation (now that we have the documents that prove he has POTS).Dr Stewart is very kind and knowledgeable.Thanks for your support :D :D Quote Link to comment Share on other sites More sharing options...
lieze Posted October 9, 2011 Report Share Posted October 9, 2011 That's awesome news! Quote Link to comment Share on other sites More sharing options...
juliegee Posted October 9, 2011 Report Share Posted October 9, 2011 I KNOW how you've struggled with this. Congratulations, Ernie!!! It is heart wrenching to see our kids sick, but even harder to see them NOT get the treatment (medical/educational/social) they so desperately need. Unfortunately, a proper DX is an essential first step. Hugs-Julie Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted October 9, 2011 Report Share Posted October 9, 2011 That's great news! Can you tell more? Did he have any ideas about what was causing the POTS or recommendations for treatment? Quote Link to comment Share on other sites More sharing options...
janiedelite Posted October 10, 2011 Report Share Posted October 10, 2011 Yes!!!! That's so great! Quote Link to comment Share on other sites More sharing options...
kclynn Posted October 10, 2011 Report Share Posted October 10, 2011 Yes, Yes, YES! Finally! So glad you can now get on with the business of helping your son feel better. Will Dr. Stewart and his team be available to you for continuing treatment? After what you have been through I suspect your other Drs. will still be resistant no matter the reputation of any Dr. They are just to full of themselves. I hope they will be available to you. Quote Link to comment Share on other sites More sharing options...
Ernie Posted October 10, 2011 Author Report Share Posted October 10, 2011 Hi,Dr Stewart offered a follow up treatment to my son because we can't find any pediatrician in Montreal. His hypothesis is that our form of POTS is inflammatory because when he gave an antiinflammatory to my son his body behave better. He prescribed an antiinflammatory, nadol, procrit, compression hoses and cymbalta. We have to try each treatment one at a time so that we can see if it is working. He already gave the script for the BB.So now we have to find a doctor that is willing to work with him and prescribed the medication that Dr Stewart suggested.I will be seeing a new PCP for the whole family so maybe he will be willing. Quote Link to comment Share on other sites More sharing options...
corina Posted October 10, 2011 Report Share Posted October 10, 2011 glad you found the answers you're looking for ernie. hope your son will start feeling better soon! Quote Link to comment Share on other sites More sharing options...
Ernie Posted October 10, 2011 Author Report Share Posted October 10, 2011 Hi Corina,It's nice to see your face. You look young. It did not imagine you like that. It's funny our we think of someone and when we see them we have a nice surprise.I hope you are doing well. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted October 10, 2011 Report Share Posted October 10, 2011 I'm so glad you were finally able to get help for your son Ernie. That's great news. Quote Link to comment Share on other sites More sharing options...
corina Posted October 10, 2011 Report Share Posted October 10, 2011 thanks ernie! after starting octreotide last year i'm doing much better. not well enough to start working but able to go out by myself most of the time and enjoy life. i even started photography lessons lately! hope your son will be doing much better now that he's on a treatment plan!take care,corina Quote Link to comment Share on other sites More sharing options...
Ernie Posted October 11, 2011 Author Report Share Posted October 11, 2011 Hi Nina, Thanks. It took me a year of hard work to get there. Quote Link to comment Share on other sites More sharing options...
Ernie Posted October 11, 2011 Author Report Share Posted October 11, 2011 Hi Corina,I am so happy for you and your family that your are doing so much better. What a victory! Quote Link to comment Share on other sites More sharing options...
sandymbme Posted October 11, 2011 Report Share Posted October 11, 2011 Good news indeed! I was just explaining to some friends last night how fortunate I was that I got diagnoses with my initial diagnosis of POTS in about a year, that it was actually record speed. They were shocked when I explained how many people suffer for decades with resistant doctors, poor care, and misdiagnoses. I know so well the sense of relief when finally it all adds up, and you have a treatment plan and HOPE! I can only imagine it would be even greater for your child. Congrats!Sandy Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted October 26, 2011 Report Share Posted October 26, 2011 Great to hear and interesting information. Quote Link to comment Share on other sites More sharing options...
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