Daughter with EDS
Posted: 19 April 2016 05:52 PM   [ Ignore ]  
Total Posts:  1
Joined  2016-04-06

This is all so new to me.  I have never posted on a forum…never needed to.  Almost three years ago my daughter, now 15, started having mysterious pain that just got worse and worse.  Thankfully almost a year ago we moved near a Children’s Hospital and saw a geneticist and she was diagnosed with EDS.  Unfortunately it’s been a down hill slide since.  She’s had bones slip, ER visits, and now terrible stomach issues.  We just heard about PP and NAC from a new acquaintance who also has a daughter with EDS.  We were so excited to try it and jumped right in.  We’ve had to stop because her stomach issues have exploded; uncontrollable bm’s, cramping, gas, bloating.  The bad thing is that two ER doctors read an xray and told us she was constipated so they had us give her dolcalax and then miralax.  I think her stomach is in complete rebellion.  She takes Celebrex for pain, Zoloft for anxiety, and Prilosec for acid reflux and stomach upset.  Now they have her on bentyl as an anti-spasmodic for the colon and flagyl for a suspected overage of bacteria in the colon.  It’s been a week and it’s not working.  We started the PP again, one per day, three days ago.  So far, no change.  My questions are these:  How long do we give the PP to work?  Does anyone else have these terrible stomach problems and what have you done to fix them?  How far do I let the doctors go in looking for what the problem is?  She is 15, 5’7” and now weighs around 105 lbs.  She is wasting away and I’m scared to death.

Posted: 25 April 2016 05:57 PM   [ Ignore ]   [ # 1 ]  
Total Posts:  1418
Joined  2011-04-19

I’m so sorry for your daughter’s suffering. I remember when my kids were so incredibly ill—it was terrifying. Please know recovery IS possible. I wonder if Zantac could help? It helps with inflammation in the gut. Generally, diarrhea stops, then constipation sets in (not because Zantac causes constipation, but because the diarrhea is often masking the underlying constipation/gastroparesis). When the constipation returns, then it is a great time to begin Parasym Plus (2-3 capsules first thing in the morning). Some stool softeners may be in order if constipated (Parasym Plus can’t trigger a bowel movement if she is trying to pass a brick, if you get my drift). This can be important when people are on medications that cause constipation. wink Fingers crossed for you! Please keep us posted.


Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

Posted: 27 April 2016 09:14 AM   [ Ignore ]   [ # 2 ]  
Total Posts:  3
Joined  2016-04-27

I don’t have anything that severe, but I watch my diet VERY closely. I do have short bouts of tremendous, double over cramping, so I empathize with your daughters pain. You don’t mention anything about the foods she’s eating. If it were me, I’d find a clinical nutritionist to see if she can’t find relief that way. Meds are always my last resort. Solve the problem not cover it over. Gluten free is the best place to start when it comes to intestinal/stomach issues. Wishing you both the best ❤