pugszhill

This is just what he told me. I don't necessarily believe or agree with it all either. Personally I think each person is different and no two pregnancies are the same with anybody. I think each person with POTS needs to evaluate themselves and their extremes of POTS and do what they feel they can handle. I sometimes wonder if I could handle a pregnancy cause of the severity of my POTS and even afterwards if I could care for the child cause somedays I can barely care for myself. Then I will have a length of time when I feel a tad bit better and think ya I can do this cause I'll adjust as the baby grows and therefore my energy will increase slowly with the needs of my child. Sometimes after being with my 3 adn 4 year old neices I am totally worn out but have to remember I wouldn't be thrown into that energy and need level right off, you'd grow with your child and gain strength and energy slowly. I just wanted to share what I was told recently not that I was agreeing. Janette

Dr. Grubb also dx me with EDS Stage III. I have gone to several docs in Ontario who have said I am borderline EDS. I always have been very flexible and double jointed so I very well could have it. Stage III is a mild form and the better one to have of all the stages. If oyu do have it it's something you've had since birth so I look at it this way...I've had for 30 years and managed ok without knowing so now that I have been dx I try to just go on the same way cause I managed this long. It's nice to know but things don't change really cause you can't just develop it, if you have it you've had it since birth, you're born with it, it doesn't just appear. For me it added a missing piece to the puzzle but didn't change my condition after being dx with it. Nothing has changed since med wise or health wise just made things clearer for me. Janette

I live in Ontario and I also have POTS. I have been seeing doctors in Hamilton for 12 years now. A new doc named Dr. Carlos Morillo just came from Columbia and he is very up on POTS. He and Dr. Grubb have trained together. I also go to Dr.l Grubb and have for 4 years now. As for being dx I had ot go to Vanderbilt University in Nashville. I tried to get dx for 9 years in Canada covering all of Ontario and was told I was nuts and everything else. Finally OHIP (provincial health coverage) paid for me to go for testing and be admitted for 1 week to Vanderbilt. I was dx in 4 days. That was the best thing I ever did. They advised me to go to Dr. Grubb and even though I have doctors here they aren't as good at treating POTS as Grubb is. They take his advise and treat me in between visits and fill scripts but that's about it. Grubb is my leading doc and the head of all my docs up here and they all look towards him for help. I had a negative experience with Dr. Shondorf. Dr. Morillo in Hamilton is the only doc on Ontario and mainly Canada that is up to date on POTS. Feel free to email me if you would like. Janette

This is also a topic I have been concerned about. I am about to be married in April and we want children also. I had an appointment with Dr. Grubb last tuesday and we discussed this topic. He told me he has helped 300 POTS patients have babies. He told me there is only a 20% risk of passing this on to our children. He also told me the first trimester Id be the sickest, the second I'd feel good and the third I'd feel bad again and that most POTS patients are put on bedrest for the last 4-6 weeks of their pregnancy. He also told me I could stay on all my meds except my Dilaudid which is a pain med. I'd have to try and decrease it or switch to something milder. I'm on midodrine, propranolol, zofran, digoxin, eprex, dilaudid, and a few others that aren't a concern at all for other reasons. I just had my second pacemaker surgery and lead replacement in Novemeber and he alasostated that he asks POTS patients to be stable to for 1 year before trying for children. He did mention that everyone's "stable" is different. If your health stays in the same shape for 1 year that is your stable. I am going back in November to see him and discuss this again cause at that point I'll be ready to start trying I hope. He told me to not "not try" because of thinking i'll be worse afterwards cause he said just as many POTS patients get better or stay the same as get worse. So basically since I started seeing him 4 years ago he has helped 200 more people have babies and is better informed of what to expect and the risks. He said we all are high risk that try to have babies and that they monitor us very closely throughout the pregnancy. Also during labour they can give us meds thru IV as needed cause after we deliver he said our bodies change instantly right there and they can monitor us and give us things we need thru IV to help us quickly. He also said jsut as many have babies naturally as C-Sections. Hope this helps a bit. Not sure if I answered any of your questions but I jsut talked about this with him on tuesday so it's still fresh in my mind. Janette