MilkyWay

Hello- I found your post interesting. I have POTS and my oldest son who is 20 was DX when he was 16 & now my younger son who is 16 was just diagnosised. My older son was involved in a study at Cleveland Clinic. Part of the study had to do with genetics & Dysautonomia, Dr Thomas C Chelimsky, MD & his wife were in charge of study. I was told by the Drs that puberty (change in hormones) maybe the reason both boys starting having symptoms at the same age. We are still hoping the boys syptoms will lesson as the get older. There are times when I ask "why me, why do I have to have all these illnesses" then when my oldest was sick I was asking "why him" but I did figure out why me- so I would know what he was feeling & how to help him. It took over 7 years for me to get diagnoised & it only took weeks for my sons, plus they did not have to go through as many test or trial medications. I wish you & your family the best.

I can relate to your frustration, in our house we have 3 POTS patients ~ myself, my 20 year old son Chris & my 16 year old son Nathan. I have had POTS for apx 20 years, my older son has had it since 2009 his junior year and my younger son just started having symptoms in Sept.he is a sophmore. I have multiple health issues along with the POTS. When my boys first started having symptoms & they were in & out of the hospital the stress would cause me to go into a flare up which would put even more stress on my husband. There are a couple things I would like to recommend 1st is advice my older son gave me when his brother started having symptom ~ he told me to keep Nathan in School as much as possible even if it is only 1 to 2 hours a day & to try to stick with his normal routine as much as possible, 2nd make sure you take time for yourself (like when you took your walk) you need to destress so your daughter does not feel that she is causing stress for you (if she feels guilty her symptoms could worsen) I did want to mention your daughter may need to have her medications adjusted I have been able to stay on same med & dose for awhile now, but Chris has had to have numerous adjustments which the Dr warned us may happen due to his age & changing hormones. I wish your daughter & your family best of luck on getting back on track.

I have numerous Diagnoses including: POTS, Autoimmune Disorder, AV node re-entry tachycardia (which was ablated), irritable bowel syndrome , chronic inflamatory disorder, there are others but my latest is Reflex Sympathetic Dystrophy Syndrome (RSD) it is also known as Complex Regional Pain Syndrome. I have had apx. 18 surgeries for varies reasons, I currently am getting sympathetic nerve blocks which are helping to alleviate symptoms of my RSD. My 20 year old son was diagnosed with POTS in 2008 he was involved with Dr Chelimsky study on the link with dysautonomia & the affect on GI. In Sept 2011 my youngest son started having symptoms of POTS we are trying to get him in with Dr Grubbs (which is who my 20 year old & I see) but since it takes sooo long to be seen be him he is being cared for by U of M cardiologist.