sstephan Posted June 6, 2006 Report Share Posted June 6, 2006 Hi,My doctor is pretty sure that my 18 mo. old daughter is suffering with symptoms of dysautonomia as well. We have an appointment tomorrow with Dr. Todd Davis at Children's Memorial Hospital. He is listed on this website and I was just wondering if anyone else had ever seen him. Her referral was approved for consult only and I get very frustrated with the insurance. My autonomic doc is out of network and I am still fighting with the insurance company for the testing to be paid for. It is such an ordeal.Thank you,Susan Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted June 7, 2006 Report Share Posted June 7, 2006 Susan, I don't have any additional info to add--only my wishes that the appointment goes well. If you feel comfortable sharing, I'm sure everyone here would like to know how the visit goes & how you are both doing. Check in when you can--thinking good thoughts for you both, Nina Quote Link to comment Share on other sites More sharing options...
tiger Posted June 8, 2006 Report Share Posted June 8, 2006 Susan- Just curious who you see for you autonaumic doc. I live in Chicago and need to find a doc. Please let me know. Hope the appointment goes well. Quote Link to comment Share on other sites More sharing options...
sstephan Posted June 9, 2006 Author Report Share Posted June 9, 2006 Thank you for inquiring about my daughter Abby. The appt was okay. Dr. Davis was nice enough- just difficult to understand. Does anyone know anything about childhood dysautonomia? He did not feel as though Abby is suffering from dysautonomia. My ped doc had told me that children can have autonomic problems without actually have familial dysautonomia. However, Dr. Davis said this is not the case. He thinks that my daughter has patent foramen ovale- where a flap has not properly closed in her heart which allows shunting of blood. He said this would not have shown in her echo because it only happens when she is active. We are going to go see a ped cardiologist to see if he agrees. I am not sure what I think. The only good thing is that if Dr. Davis turns out be correct, they really don't do anything for it. I guess it usually closes up on it's own. I was wondering if anyone has children who also suffer from dysautonomia. Is it common to inherit POTS? My father has a very mild case of POTS. Any information anyone could offer would be much appreciated. Quote Link to comment Share on other sites More sharing options...
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