Connective Tissue Disorders/uc And Pots?

[Aquadiva]

I have read some posts of people who also have these disorders along with POTS. My daughter was diagnosed with UC about a year and a half before being diagnosed with POTS. I actually think that it was the anesthesia from one of her scopes that brought on the POTS. The same day she had a scope it all started. Anyway, she also has a LOT of aches and pains in her back and neck, and has had costochondritis that took forever to get rid of. I have felt all along that she has some connective tissue problem, but they just contribute it to her UC. I also wonder about fibromyalgia or CFS. There is no doubt she has POTS, as her tilt table test showed an increase of 50 bpm, and her UC has only been able to be controlled by IV medication every 8 weeks, but I think there are still missing pieces to the puzzle.

Can any of you share with me your experiences with figuring it all out? I hate to keep putting her through appointments and tests, but am also tired of watching my teenager being sidelined from her medical conditions that I feel we may be able to treat.

I get so tired of her ped. thinking maybe she is just over-doing it, or has a virus, or it is a gloomy time of year, or she doesn't want to go to school, etc. She is a 4.0 student, plays varsity and JO volleyball, is a junior in highschool and attends Community College, plans to go to a 4 year college, med school and become a radiologist. She LOVES going to school and just wants to be a normal kid. Although, she realizes she won't ever be "normal" again, she wants to be as normal as she can.

One thing that is so frustrating is that even some dr.'s don't realize how disabling POTS is! Some just think it is something you need to put up with. I don't agree, if there is a treatment available, it is worth a try. Life is too short to be miserable if you can help it!!

Thanks everyone!

[bkweavers]

I too, am sick of doctors who think this is just a inconvenient type of illness. My daughter, Liz is almost 14 yrs. old and has been ill for 3 years with POTS. For the past 2 and 1/2 yrs., she's been unable to walk, sit, or stand without assistance due to her dizziness. I'm tired of people in general who know us say "Well, at least it's not cancer," like that's suppossed to make me feel better! For some reason with illnesses in which people don't look sick, comes very little compassion. I'm not sure why that is.

I wish I could give you some help on your questions of CFS or connective tissue but I can say that I hope and pray you do find the answers you need to help your daughter lead the best life she can. It's not easy to be an advocate for your child but keep it up and keep pushing the doctors to get your daughter the right meds and help she needs.

Brenda

[Aquadiva]

I too, am sick of doctors who think this is just a inconvenient type of illness. My daughter, Liz is almost 14 yrs. old and has been ill for 3 years with POTS. For the past 2 and 1/2 yrs., she's been unable to walk, sit, or stand without assistance due to her dizziness. I'm tired of people in general who know us say "Well, at least it's not cancer," like that's suppossed to make me feel better! For some reason with illnesses in which people don't look sick, comes very little compassion. I'm not sure why that is.

I wish I could give you some help on your questions of CFS or connective tissue but I can say that I hope and pray you do find the answers you need to help your daughter lead the best life she can. It's not easy to be an advocate for your child but keep it up and keep pushing the doctors to get your daughter the right meds and help she needs.

Brenda

Wow, that is a long time! What have you guys tried in hopes of some relief? My daughter was really dizzy when first diagnosed, but this round, it is more fatigue/concentration.

[dakota]

I'm sure I don't have anything new that you haven't already heard, but I just can relate to you with my 15 (nearly 16) year old daughter who has POTS. I am just today filling out a massive amount of paperwork to have her evaluated for Ehlers Danlos, which was recommended by the cardiologist who did her tilt table test. I feel that my daughter also developed POTS following surgery. After her first surgery in July 08, she had some symptoms of POTS but was still functioning enough to attend school. Directly following her second surgery in April 09 (which was must less of a major surgery than the first one), she really got hit full force with POTS symptoms and no longer is able to attend school. I know a lot of people with EDS have GI problems and I wondered about that as a possibility for your daughter.

As far as treatment goes, I definitely know what you mean. I hope that something new will come along that will help my daughter, only we haven't found out what that might be yet. The last med (norpace) we tried landed her in the ER so I'm not necessarily so eager just to jump right in and try something new! But it sure would be nice to find something.

The last time we were at the primary care pediatrician, she said that blue/purple feet were normal for tall people! Thank heavens for my daughter's cardiologists who don't think that is a normal part of life.

Best of luck to you, aquadiva, and to you Brenda. It's really not easy to sit back and watch your child go through all this, wishing there was something you could find to help her through it.