Tummy Troubles

Yesterday was a reminder of something we tend to struggle with - tummy troubles! One of the things that is so hard about EDS is that while you suspect that something is related, often there isn't a study yet to prove it. So, while lots of people who suffer from Ehlers-Danlos Syndrome will report that they have problems with chronic constipation and acid reflux, there isn't real solid proof that this is being caused by EDS. Of course, logically it makes sense, since both the intestines and stomach are made from connective tissue, but that isn't good enough to prove it. So, in the meantime we treat these symptoms with my daughter not knowing if it's going to be for her whole life (suspecting so) or if there is some small chance that someday things will start settling down.

Yesterday she had tummy aches off and on throughout the school day. They actually had started the night before. Part of me wonders if it was in part due to the adjusting back to being in school after a long break, and on top of that doing extra work with the OT and PT for evaluations. I wonder if her body was just more fatigued and that caused it. But again, I can't know that to be a fact, even if in theory it makes sense. So, we just dealt with it.

Since I was in her room half of the day volunteering I was able to let the office know that unless she got sick or started a fever to just let her rest. I hate doing that, but if she came home everytime she had an ache or pain she wouldn't be at school that much. The best I can do is acknowledge her pains, and try to lessen them. I thought the resting time was a good way to do that yesterday, so that's what we did. She made it through the day, and got a decent amount of work done.

Today she slept in really late - I think she must have gotten about 13 hours of sleep. Hopefully that will help get her feeling a little better again. I'm crossing my fingers tomorrow she sleeps like that too!


Anonymous said...

I also suffer from EDS with hypermobility. I sometime have stomach trouble. It seems to come from my back... the vertebra are moving and touching the nerves. as soon as my back is better the pain disapears...
Can also come with extreme tiredness... I don't remember being really sick as a child though. My hands looks like your daughter's

Hope this help


Anonymous said...

I've read so many of your posts, and your story sounds so much like ours. My 14-year-old daughter was also recenty diagnosed with EDS Hypermobility Type. She knew when she was 2 that there was something wrong, but it took years to find out the answer. I know now they don't generally diagnose EDS until after 5. As she got older, the focus was on "fixing" the dislocations/instability problem, but it wasn't until surgery number 5 (this year) that they suggested we go to genetics again. She is a 9th grader now, but has not been in PE since elementary school. It was clear in 1st grade that there was something "wrong". In middle school, she had 5 operations for chronic knee dislocations and ankle instability. In terms of mobility (i.e. walking), she's doing quite well now. Last August, I got her tested for food allergies, and found out she was allergic to both dairy and wheat. Aside from all of her absenses the last couple of years for her surgeries, she missed MONTHS with vomiting, diarrhea, etc. We found out a couple months that she also has Celiac Disease, so she is now completely gluten-free & dairy-free. The doctor told us that auto-immune dissorders go hand in hand, and EDS and Celiac are both autoimmune. My daughter is doing really well right now. Still no PE, running, etc, but compared to the last few years, doing so much better. If you have not, I would encourage you to find out about Celiac too.