GingerA Posted November 8, 2011 Report Share Posted November 8, 2011 I have had symptoms of POTS since I was 16 but only got my diagnosis in April of this year. (I am now 37). The thing is now I have a 14 year old son who seems to be having the same symptoms. He started out being tired all the time. I thought maybe he wasn't sleeping but last night he woke me up saying that his heart has "beating out of his chest". OMG! I am scared because he also is very double jointed and is flat footed so I know that the signs of EDS are there too. I haven't mentioned that to him because I don't want to scare him. He has seen what I have been through and he will panic. (Did I mention that he also has OCD?!) We have a doctors appointment @ 11 today but I don't have much faith in doctors. What am I going to do? Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 8, 2011 Report Share Posted November 8, 2011 You have a very lucky little boy. His Mother knows all about dyautonomia. You recognize the signs and know that he needs help. My little boy wasn't so lucky. He ended up missing a whole year of school and almost died before we found help for him. I even gave him a talk and explained that he was emotionally disturbed and simply thought he was sick- that's what his local doctors said. (He loves to remind me of THAT.) I don't mean to make light of your pain and sorrow in making this discovery. My heart breaks for you, but you are uniquely qualified to care and advocate for him. Where did you get your DX? Could he see your same docs? We see an awesome ped at Johns Hopkins, who unfortunately is not accepting new patients; but Julian Stewart in NY is another terrific pediatrician who specializes in dysautonomia.Deep Breathe. You can handle this. For now, extra water, gatorade & salt. My son took 6 Thermotabs a day at the beginning. I found tremendous help from other parents who are raising children with ANS issues. They are a great resource and can be found right here. Coincidentally, another "Ginger from Savannah" DXed my son through a forum (similar to this one) and even directed me to a team at Johns Hopkins that could help him. We are here for you.Big Hugs-Julie Quote Link to comment Share on other sites More sharing options...
GingerA Posted November 8, 2011 Author Report Share Posted November 8, 2011 Thanks JulieI just hate to have him go through this. I got my DX at Mayo in Jacksonville. We have an appointment with his pediatrician in about an hour so I will just get a referral. I need some more test done too so I guess it will be a family affair.So funny about the "Ginger from Savannah". I am only an hour from Savannah myself. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted November 8, 2011 Report Share Posted November 8, 2011 Not to hijack, but, Julie, how is Mack doing at college? Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 8, 2011 Report Share Posted November 8, 2011 He is doing amazing well. I am holding my breath to see if it will last. He's made wonderful friends and they plan to move off campus next year. He's hooked up with the university's disability office should he need help- right now he only uses extended time on tests & the ability to drink water (fluid load) & eat (hypoglycemia) as needed in class.The medical director is aware of his special needs, but Mack hasn't even visited student health services yet. The academic program that he's trying to get into to is VERY competitive. He needs to practically get all A's in order to be accepted. The cards are certainly stacked against him. His health grade from his last visit to Hopkins was 60/100 and his psycho-educational profile lists his global assessment of functioning to be 70/100. Despite it all, he is persevering...The hardest thing for me is managing meds long distance. He went to school with an enormous bin full of pre-loaded weekly pill containers (3 months at a time.) It is almost a part-time job for me to keep those up-to-date . So, to any parents with sick kids, who wonder if their children will ever be able to be out there on their own. YES. It can be done. They can improve to the point of being self-sufficient. Keep the faith. Forgive MY hijacking! Quote Link to comment Share on other sites More sharing options...
bensman Posted November 9, 2011 Report Share Posted November 9, 2011 Ginger,How did your son's appointment go? I hope the doctor was helpful. I know you will advocate for the best care possible!Julie,That is so wonderful that Mack is enjoying college! Quote Link to comment Share on other sites More sharing options...
GingerA Posted November 9, 2011 Author Report Share Posted November 9, 2011 The doc did an EKG and chest xray. They referred him to a cardiologist. But the doc totally dismissed my concerns about EDS and couldn't even pronounce dysautonomia. So. . . . Quote Link to comment Share on other sites More sharing options...
sue1234 Posted November 9, 2011 Report Share Posted November 9, 2011 Wow, I know how disappointing that was. Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 9, 2011 Report Share Posted November 9, 2011 Very disappointing, Ginger- but I can't help but think YOU went through a similar process. THAT helped prepare you for this diagnostic odyssey. My son's primary was of NO help either, neither was the pediatric GI in the closest major metropolitan city. It wasn't till we got to a major teaching hospital that we found ANY confirmation OR help. You would think that your son's doc would be more open given your DX.... Keep fighting, Mama. Your son is a very typical age for all of this to flare. My son went through a huge growth spurt at 12- so he started earlier. Start working on getting the appts your son will need. It is unlikely that you will find local help- unless you are lucky enough to live near a teaching hospital. You can do this. You are uniquely qualified- you have been down this road before. Hugs-Julie Quote Link to comment Share on other sites More sharing options...
GingerA Posted November 9, 2011 Author Report Share Posted November 9, 2011 Thanks Julie! I needed the pep talk! Quote Link to comment Share on other sites More sharing options...
chipper Posted November 10, 2011 Report Share Posted November 10, 2011 My daughter was diagnosed at age 14, after watching me lay in bed and the family talking about me dying for years. She does good now and understands this illness inside and out. When I first saw the signs of dys, it was disturbing, but I hope and pray that prevention will keep her from the worst. We have been patients together for 12 years, and are seeing Dr. Grubb in December. Blessings to you and your son, Mary Quote Link to comment Share on other sites More sharing options...
GingerA Posted November 12, 2011 Author Report Share Posted November 12, 2011 Thank you Mary. I pray that I am reading the signs wrong but I just have this feeling. . . Quote Link to comment Share on other sites More sharing options...
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