kjmom Posted June 7, 2012 Report Share Posted June 7, 2012 My daughter has an appointment with the author of this article this week:http://www.ncbi.nlm.nih.gov/pubmed/21087570He seems to know his stuff. I'm hoping he can give us more treatment options, particularly for her GI issues, anxiety and fatigue, since nothing has worked so far. BTW, if anyone wants the full text of this article, I have it scanned. I don't know if there's a way to post it here. PM me and I can send it via email. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted June 7, 2012 Report Share Posted June 7, 2012 He sounds like a truly empathetic, caring doctor!! There were a few sentences in the abstract about caring for POTS patients can be "rewarding", etc. that is not the usual talk I ever hear from health professionals. I'm glad your daughter will be seeing someone with such a great attitude. Keep us updated. Quote Link to comment Share on other sites More sharing options...
kjmom Posted June 7, 2012 Author Report Share Posted June 7, 2012 I totally agree, Sue. I was pleasantly surprised to read that statement. He also recognizes that the treatment process is a long, complicated one and won't give up if the first few meds don't work. That was such a relief to me. I'm looking forward to this appointment. Quote Link to comment Share on other sites More sharing options...
corina Posted June 7, 2012 Report Share Posted June 7, 2012 Goodluck to you and Kayla, hopefully this doctor will have some answers! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted June 7, 2012 Report Share Posted June 7, 2012 he sounds great.As postural orthostatic tachycardia syndrome is underdiagnosed and poorly understood, it is a disease that provides an excellent opportunity to perform researchAn advocacy group should really try to approach graduates coming out of the larger schools LOL Quote Link to comment Share on other sites More sharing options...
kjmom Posted June 7, 2012 Author Report Share Posted June 7, 2012 Hi everyone, This is Kayla. Thank you so much for your replies, I can't wait to find a cure for this dang illness! I have read some of the article and like his positive attitude, ("This experience can be rewarding.") he seems like a good doctor as well. Thanks again everyone! Kayla, 10 Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted June 7, 2012 Report Share Posted June 7, 2012 Good article and good luck!An advocacy group should really try to approach graduates coming out of the larger schools LOLRama - this is exactly what my CFS Doctor said. They are trying (somehow?) to get medical students interested in these conditions. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted June 8, 2012 Report Share Posted June 8, 2012 Funding is often the issue. But some new hot shot would love the challenge. ive spoken to medical researchers about POTS in the past at parties when relatively well and all of them were very interested. its like a challenge to them, but a life for me LOL Quote Link to comment Share on other sites More sharing options...
kjmom Posted June 8, 2012 Author Report Share Posted June 8, 2012 Seeing him (or leaving to) in about a half and hour. I'm anxious, but I bet he's a good doc. Wish me luck!!Kayla, 10 Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted June 8, 2012 Report Share Posted June 8, 2012 Good luck Kayla. Let us know how the appointment goes. Quote Link to comment Share on other sites More sharing options...
kjmom Posted June 8, 2012 Author Report Share Posted June 8, 2012 Hi, it's Kayla's mom We had a great appt...this doctor was so sweet and knowledgeable. He confirmed her POTS diagnosis (her laying to standing heart rate went from 130 to 180!!!) and reassured us that he is in it for the long haul. He is starting with an antibiotic to try and treat possible overgrowth of bacteria in the small intestine then a stimulant to help her extreme fatigue and brain fog. He wants to see her monthly to tweak the meds until she feels better. What a relief to have someone who knows! Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted June 8, 2012 Report Share Posted June 8, 2012 Kayla's Mom:What a relief for you and Kayla to have a doctor who is interested and willing to stay with you for the long haul. I hope things start improving very soon. (I am very impressed with Kayla's updates on her illness - she seems very mature for a 10 year old). Let her know that we will be thinking of her.Pam Quote Link to comment Share on other sites More sharing options...
McBlonde Posted June 8, 2012 Report Share Posted June 8, 2012 So glad to read that you have found an awesome doctor. That's half the battle! Quote Link to comment Share on other sites More sharing options...
kjmom Posted June 9, 2012 Author Report Share Posted June 9, 2012 Thanks Pam!! The doc was very nice, very tall also! He seems to have a lot of meds for me to try, so I'm hopeful that something will work. Thanks for all of the replies! Kayla Quote Link to comment Share on other sites More sharing options...
corina Posted June 9, 2012 Report Share Posted June 9, 2012 Glad you had a successful appointment Kayla and Kayla's mom! Let's hope that your doctor will find what helps you best very soon! Quote Link to comment Share on other sites More sharing options...
kjmom Posted July 2, 2012 Author Report Share Posted July 2, 2012 Hey guys, My doc appointment is in a few hours, but I'm really anxious . I dunno what to do. I know I will be ok at the end, but I'm still super nervous . What should I do? Thanks in advance. Kayla Quote Link to comment Share on other sites More sharing options...
corina Posted July 2, 2012 Report Share Posted July 2, 2012 Sorry I'm late Kayla! I hope your appointment went well and that you weren't too nervous! Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted July 2, 2012 Report Share Posted July 2, 2012 Kayla:Sorry I couldn't answer you sooner. By now you probably are already back from your doctor's appointment. I hope it went well and I hope you are feeling better real soon.Pam Quote Link to comment Share on other sites More sharing options...
kjmom Posted July 2, 2012 Author Report Share Posted July 2, 2012 That's ok! Im actually leaving now! It went great, he got a lot of new meds for me to try once again, mestonon, and two other names I can't remember. Thanks so much for your replies! I'm so grateful for this website! Kayla, 10 Quote Link to comment Share on other sites More sharing options...
kjmom Posted July 2, 2012 Author Report Share Posted July 2, 2012 Ok, I know the plan now: Dr. Boris is upping the riddelyn (it gives me more energy, it's helping!) I'm gonna continue taking celexa, (for my anxiety) And the mestonon (I was on a to high dose before and it made me dizzy) and its a lower dose. Thanks everyone!Kayla Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted July 2, 2012 Report Share Posted July 2, 2012 Kayla:You are an amazing girl!! I'm glad you have a plan now. Hope you are feeling better soon. Quote Link to comment Share on other sites More sharing options...
corina Posted July 3, 2012 Report Share Posted July 3, 2012 I think you have a great doctor Kayla! A great doctor AND a plan must help you get better, you go for it! Quote Link to comment Share on other sites More sharing options...
kjmom Posted July 3, 2012 Author Report Share Posted July 3, 2012 Thank you so much guys! I don't deserve this! The mestonon is actually helping my stomach! I have a good feeling about this "round". I hope all you guys have a great 4th of July! Kayla Quote Link to comment Share on other sites More sharing options...
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