looneymom Posted July 16, 2013 Report Share Posted July 16, 2013 Just wanted to let you know that my son's test came back negative for the Autoimmune Dysautonomia Evaluation test. Yea! However, my son will be going to see an endocrinologist/immunologist in August. The cardiologist does believe there is an immune component since my son does not seem to be able to get back up to the level where he was before he got the flu in January. The cardiologist and I discussed medications my son was on before he was diagnosed with POTS and medications that have been used since the POTS diagnosis. Medications that were used to treat the virus before he was diagnoised with POTS are the same medications that were used to treat a sinus infection with a bad croupy cough, and the second round of flu last January. These medications include Predisone, Albuterol, Pulmcort, and that wonderful expensive cough syrup to help keep the vocal tic under control. I never wanted to use all these medications with my son, but I had to keep his chest from getting inflamed or his vocal tic gets out of control. So like the cardiologist, I'm wondering about my son's immune system. It's time to go see an immunologist.The other thing I worry about is the flu shot. The year my son came down with POTS he had a flu shot not the mist. He had always be given the mist before the POTS diagnosis. A question to ask the immunologist.My son is still off his Florinif and his blood pressures are staying up. His heart rate has also been better this week. His Strattera is going to be upped to see if this will stop the tremors. The tremors may be part of an immune system problem or a side effect of medications that he never had before when he was on these medications before POTS diagnosis. However, the tremors started the first time when he had the sinus infection and went away about 4 months later. His tremors came back after the second round of flu and have not gone away yet. The Clonidine at bed time is also going to be raised up to see if this will help with sleep issues. It definitely has helped with the excessive night time sweating. My son's heart rate my also improve with the increase of Clonidine. As for Midordrine, this medication may be replaced with something different in a couple of weeks. Midodrine also has side effects of headache and scalp pain. These symptoms have not improved at all since my son has been off Florinif. I will post later about this new medication.I have made a copy of the post on Immune system testing. I have lot's of questions to ask the immunologist and want several test ran. If you have anything to add to this post, please do. Hope everyone is having a symptom free day. Quote Link to comment Share on other sites More sharing options...
corina Posted July 16, 2013 Report Share Posted July 16, 2013 Thanks for updating looneymom, it seems to me that you're doing a terrific job to get the very best for your son. Hope you will get the answers you need! Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted July 16, 2013 Report Share Posted July 16, 2013 Looneymom:I was just wondering how your son was doing. He is so lucky to have such a great mom who is willing and able to put all the time in that is involved with research, questions for doctors, etc. I hope you get some answers soon. Quote Link to comment Share on other sites More sharing options...
diabeticgonewild Posted July 16, 2013 Report Share Posted July 16, 2013 Looneymom, I was wondering how your son was doing, too.Some sort of definite result will come from your efforts and the testing involved with your son.That is good to hear that the whole autoimmune dysautonomia panel has come back negative. However, AAG is still a possibility, but the immunologist seems like the most realistic step at this point of time. I hope you get more answers. It has to get better. Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted July 16, 2013 Report Share Posted July 16, 2013 With such an awesome mom, your son will be better in no time. Much love for you and your son keep us updated! Quote Link to comment Share on other sites More sharing options...
americaneagle32 Posted July 17, 2013 Report Share Posted July 17, 2013 I know when I was younger the children's specialist in Ohio she took me to see said that flu shots could potentially trigger/worsen POTS/NCS symptoms. She said some people are fine but others are affected. My mom ended up opting for me not to have them. Now that I'm older I still pass on the flue shot because of this. That might be worth doing research. Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted July 18, 2013 Report Share Posted July 18, 2013 Looneymom, thank you so much for posting an update on your son. I had been wondering how he was doing. I'm so glad to hear that the autoimmune dysautonomia evaluation test came back negative.That must have been a huge relief. It does sound like seeing an immunologist is the best next step though as you are still left with unanswered questions about possible immune system involvement. I'm so glad to hear that your sons b/p is staying up and his heart rate has been better. I'm sorry to hear though that sleep and tremors are still such a problem. So distressing I know. I hope the medication adjustment helps. Bless you for being such a wonderful mom and caring for your son so lovingly. Janet Quote Link to comment Share on other sites More sharing options...
davecom Posted July 18, 2013 Report Share Posted July 18, 2013 Keep up te fight. You're a great mom. Your son is blessed to have you. Thank goodness there has at least been some minor improvement. Quote Link to comment Share on other sites More sharing options...
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