Christy_D Posted April 5, 2012 Report Share Posted April 5, 2012 We got back from seeing Dr Afrin yesterday, appointment was Monday. My son does have MCAS and we are starting treatment of Claritan and Pepcid twice a day. Hopefully this will help his POTS since that is so severe. The doctor spent a long time with us going over his entire health history. We got there an hour early and got taken early for our appointment. We give him and his nurse 2 thumbs up!The doctor says his POTS is a result of the MCAS so maybe by treating the MCAS the POTS will improve. The doctor also gave us two prescriptions for anti-nausea medications that other doctors we have seen have not known about to prescribe even though I inquired about them. We are trying phenergen(sp?) first and if that doesn't help we will try Ativan.When the doctor scratched my son's back there was a deep red line that remained for several minutes. I had tried this test on him at home, but tried it on his arm without that result. The doctor also believes that the trigger for all of this was an absessed tooth my son had in the third grade that made all of his lymph nodes in his body swell. My sons health started going down hill in the fifth grade. While he doesn't have proof of this, he thinks this is the cause. Quote Link to comment Share on other sites More sharing options...
futurehope Posted April 5, 2012 Report Share Posted April 5, 2012 I'm happy for you that you are getting answers. I'll be seeing Dr. Afrin myself at the end of the month. He's sounds knowledgeable and personable and caring. Quote Link to comment Share on other sites More sharing options...
corina Posted April 5, 2012 Report Share Posted April 5, 2012 Glad to hear that you are getting answers ChristyD, I admire you for working so hard to get the best care for your son! I hope his health will start to improve. Quote Link to comment Share on other sites More sharing options...
issie Posted April 5, 2012 Report Share Posted April 5, 2012 Christy,Glad you got the DX - don't stop now - go ahead and check on the EDS too - there is a strong connection between us with that. I have all three - MCAD, POTS and EDS - I also have autoimmune things to complicate it even more.Issie Quote Link to comment Share on other sites More sharing options...
Monstrosity Posted April 5, 2012 Report Share Posted April 5, 2012 Keep us posted on your sons progress. Quote Link to comment Share on other sites More sharing options...
Katybug Posted April 6, 2012 Report Share Posted April 6, 2012 ChristyD,SOOO happy you were able to get this diagnosed. I know you have been searching and searching. Maybe between treatment with the right meds and learning what triggers your son, you will get the GI issues under control. Quote Link to comment Share on other sites More sharing options...
anaphylaxing Posted April 7, 2012 Report Share Posted April 7, 2012 Wow, so glad you found some answers. I hope his health improves! Dr. Afrin sounds wonderful Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted April 9, 2012 Report Share Posted April 9, 2012 what was the actual test that proved he had it? Just the scratch on his back? Quote Link to comment Share on other sites More sharing options...
Christy_D Posted April 9, 2012 Author Report Share Posted April 9, 2012 RichgotPots,Based on the symptoms he presents, the scratch on his back and his entire history the doctor is confident mast cell is playing a part. He did take 12 viles of blood and did a 24 hour urine test. Those results won't be in for some time. Also, the fact that he has had positive results with doxepin in the past which has anti-histamine in it. For MCAS, sometimes the blood and urine tests can come back negative and still have mast cell issues going on. Christy Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted April 9, 2012 Report Share Posted April 9, 2012 RichgotPots,Based on the symptoms he presents, the scratch on his back and his entire history the doctor is confident mast cell is playing a part. He did take 12 viles of blood and did a 24 hour urine test. Those results won't be in for some time. Also, the fact that he has had positive results with doxepin in the past which has anti-histamine in it. For MCAS, sometimes the blood and urine tests can come back negative and still have mast cell issues going on.ChristyDoes he have bad breathing problems? Quote Link to comment Share on other sites More sharing options...
Christy_D Posted April 9, 2012 Author Report Share Posted April 9, 2012 Nope, he doesn't have breathing problems. He does frequently get itchy but without a rash. Quote Link to comment Share on other sites More sharing options...
issie Posted April 9, 2012 Report Share Posted April 9, 2012 Christy,You inbox for PM's is full.Issie Quote Link to comment Share on other sites More sharing options...
Christy_D Posted April 9, 2012 Author Report Share Posted April 9, 2012 Issie,I deleted some messages, so there should be room available now (I guess).Christy Quote Link to comment Share on other sites More sharing options...
DoozlyGirl Posted April 10, 2012 Report Share Posted April 10, 2012 Congratulations Christy,Glad to hear your appointment went well and that you like Dr Afrin. I see Dr Afrin next month. How long did you schedule for your appointment and testing? Do you have any tips or advice as I prepare for my appointment? Please keep us posted. Lyn Quote Link to comment Share on other sites More sharing options...
Christy_D Posted April 10, 2012 Author Report Share Posted April 10, 2012 LynDr Afrin spent about 1hr 45 minutes with us. We arrived early and were taken early, I don't know if that is always the case. Right after the appointment my son had to do blood tests, same building and floor the doctor is on. Don't take any NSAIDS 5 to 7 days before the appointment, I don't know why but it was asked at the appointment. Then the next morning he had to do a 24 hour urine test. The urine had to stay cold, so we bought a styrofoam cooler and filled it with ice to transport it. He was adament about keeping it cold.So our appointment was on Monday, and we left South Carolina first thing Wednesday morning after turning in the urine collection. I brought a copy of all my sons records, all medications he has ever taken for POTS and why he no longer took them, and a health history. He went through everything thoroughly.Christy Quote Link to comment Share on other sites More sharing options...
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