Talking To The Doctor Tomorrow...help

[kjmom]

My DD has been on Florinef for almost 2 weeks and her doctor wants to catch up by phone tomorrow to discuss her progress. She feels somewhat hungrier and has a bit more energy, but otherwise she still feels lousy. Her belly pain still persists. Should she be feeling better by now if the meds are helping? Are there any other meds that I should ask about?

Also, I've been researching Ehlers-Danlos and she seems to meet the criteria for the hypermobile type. I plan to ask the doc about this as well...would this change the course of treatment?

Thanks in advance!

[Dizzysillyak]

Did her doctor look closely at her stomach pain ? Was she evaluated for parasites, etc ? If she's been on antibiotics a good probiotic should help.

Did you change her diet to see if it helped ? Many of us have food intolerances whether it's gluten, dairy, soy,

dyes, caffeine, etc etc .. Most of the people I know feel better on whole unprocessed foods.

Hope she feels better soon. Tc . D

[kjmom]

Yes, she's been extensively evaluated for stomach issues before POTS was diagnosed, since we thought it was solely a GI issue. She's had ultrasounds, CAT Scan, MRI, endoscopy/colonoscopy, gastric emptying, etc. She's had every blood test for Celiac, allergies, bacteria, etc. and all came back normal. Diet and probiotics don't change her pain.

[Dizzysillyak]

That's good that she's had a thorough workup. Fwiw, my dd had all those tests about that age and then she started her menses so we all

understood what was happening. Diet changes wouldn't have helped my dd either. Well for that anyways.

fwiw, testing can't catch food intolerances and allergy testing for foods can be off. Did you put her on a the elimination diet where all possible intolerances are eliminated at once ? This really cuts back on cytokines and allows healing.

Hope you get to the bottom of this. No ten year should be sick. Tc .. D

[kjmom]

Thank you. It's been a very tough road. She's been out of school since December and is missing her life. She doesn't seem to be close to getting her period yet, so I guess that's one less thing to worry about. Her weight loss has probably further delayed that as well.

[Christy_D]

My son's also started out as GI problems. While he still suffers from severe nausea, doxepin has taken away his stomach/abdominal pain. My son took florinef for over two years and it only took away dizziness.

Perhaps ask about doxepin.

Christy

[kjmom]

Oh thanks, Christy! I definitely will.

[jpjd59]

My daughter also experiences abdominal pain and has had every gi test imaginable, all results coming back normal. We just have come to the conclusion that it is part of her POTS symptoms. You might want to ask the doctor is the pain is caused by a blood flow issue (either pooling in the abdomen or not enough blood in the abdomen).

[kjmom]

If it is a blood flow issue, how do they treat that?

[jpjd59]

I wish I knew what to do if it is a blood flow issue. We are still trying to figure out the same thing. Right now my daughter is trying to drink 3 liters of liquid a day and increase her salt intake as much as possible (since she has been unable to tolerate meds). Hopefully the doctor will be able to give you some advice.