corina Posted April 19, 2015 Report Share Posted April 19, 2015 Hi everyone!For one of my Dutch POTSpals I'd like to ask you all a question. Both her daughters have been diagnosed with POTS and are struggling with fevers. One of them has really worrying fevers and has been in bed due to that for quite some time now (they are working with a PT on keeping her seated several times through out the day to keep her POTS from worsening). So far her doctors haven't been able to find a (the) cause. I think MCAD could be involved but then I'm not a doctor of course and don't have much experience with this. Does any of you experience these kind of (unknown) fevers and could you please let me know what has helped you? Where you able to find a cause? Did you find treatment?On behalf of my Dutch friend and her daughters thank you in advance for taking the time to read and, if possible, help answer her questions! Quote Link to comment Share on other sites More sharing options...
Katybug Posted April 19, 2015 Report Share Posted April 19, 2015 Have they looked into PANDAS and also checked their Ig totals and subtypes for immune issues? Quote Link to comment Share on other sites More sharing options...
corina Posted April 20, 2015 Author Report Share Posted April 20, 2015 Thanks Katie, for thinking with us! PANDAS doesn't seem to fit as both girls don't have any psychiatric issues (as their mum told me!). There are immune issues, one has been tested positive on ANA (non specific according to her doctor) and the other girl has slightly high IgG4 and IgG2 but her doctor isn't concerned (or impressed). Here in Europe (or may be specifically in the Netherlands) doctors are pretty reticent. I feel sorry for the girls (and their mum), it is so hard to have to deal with this and not being understood. Does any of you know of a (US) doctor who is (leading) in this field? So that perhaps they could try get in touch and ask questions and references for treatment? Or hopefully their doctor(s) could get in touch and discuss possibillities to help the girls move on? Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted April 20, 2015 Report Share Posted April 20, 2015 Corina are they considered pediatrics? Under 18? Some doctors will use 21 as the cut off but not many.. Quote Link to comment Share on other sites More sharing options...
Katybug Posted April 20, 2015 Report Share Posted April 20, 2015 Corina,You might send a PM to looneymom about this and get the names of Tyler ' s doctors for your friend. Quote Link to comment Share on other sites More sharing options...
angelloz Posted April 20, 2015 Report Share Posted April 20, 2015 Hello,Feel so badly for your friend. A few thoughts, I have been diagnosed with MCAD but don't run fevers unless I am ill with something else. I also had a positive ANA when I had testing done at the Mayo Clinic, it said this went along with Lupus so I was referred to a rheumatologist. He said there would be more than one type of ANA that showed positive so it was dropped. Wish I could help more! Hopefully they can find a doctor that will want to get to the bottom of it! Quote Link to comment Share on other sites More sharing options...
Chaos Posted April 21, 2015 Report Share Posted April 21, 2015 Hi Corina, Sorry to hear about your friend's daughters. There is a doc in Belgium, Dr Kenny De Meirlier, who has a good reputation for working with people with POTS symptoms but also ME/CFS symptoms. The fevers are very common with people who have that diagnosis as well. I believe his daughter has this condition so he has been very active in research in this arena. This is one link to a short YouTube presentation that he did. There are others on the same page with more info.I have a friend who flies over to Belgium to see him and has been very happy with him. Quote Link to comment Share on other sites More sharing options...
corina Posted April 21, 2015 Author Report Share Posted April 21, 2015 Thanks SO much every one! I will pass your info on! Oh and a big thank you from their mum as well! Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.