[JoDes]

My 15 yr old daughter has RSD. She never had GI issues prior to this diagnosis. She was dx with Gastritris just recently, but her current doctor is shoving us away because he will not make any further suggestions or find out why she continues to have abdominal pain besides continuing Omeprazole 20 mg capsule once per day. I'm looking for a gastroenterologist that is comfortable with RSD and GI issues in the Philadelphia area. Any suggestions would be helpful?

[LIT LOVE]

Originally Posted by JoDes

My 15 yr old daughter has RSD. She never had GI issues prior to this diagnosis. She was dx with Gastritris just recently, but her current doctor is shoving us away because he will not make any further suggestions or find out why she continues to have abdominal pain besides continuing Omeprazole 20 mg capsule once per day. I'm looking for a gastroenterologist that is comfortable with RSD and GI issues in the Philadelphia area. Any suggestions would be helpful?

I would suggest trying Dr. Hooshmand's 4 F's diet and see if it might reduce some of her issues.

[catra121]

Originally Posted by LIT LOVE

I would suggest trying Dr. Hooshmand's 4 F's diet and see if it might reduce some of her issues.

I started this a couple months ago now and it does seem like it has helped. Much better than the Nexium ever did at the very least. And at the worst...I'm just eating better. The only real negative is that now that I am on this diet I cannot eat processed or fast foods like I used to because now THOSE make me feel ill (which is probably not really a negative as it means I am less inclined to "cheat").

[alt1268]

may I ask what other medications she is on. Most medications out there cause gastritis.

[JoDes]

Of course, the other medications that she's taken are needed for other medical issues. They are Atenalol for Postural Orthrostatic Tachycardia Syndrome (POTS), which is a disease where your blood pressure drops and your heart rate increases when changing positions or standing for a long period of time. In her case, she gets out of breath from going up and down the stairs, dizziness occurs when bending or looking up; and these all cause her heart to race rapidly. She could only stand for 5 mins. and her heart increases by 25-30 bpm in such a short time. She also takes Cymbalta for the intense pain from RSD and Vitamin D because her level is low because her bones are brittle from the RSD.

[catra121]

I am very very sorry to hear what your daughter is going through. It is fairly common for those who suffer from RSD to develop GI problems. I do not live in that area so unfortunately I cannot recommend any good docs in that area for this particular problem.

I was diagnosed earlier this year with gastritis and esophogitis...both of which were new to me and I never had problems prior to getting RSD. They had me on Nexium for a while but in all honesty it didn't feel like it did anything to help me with the GI problems I was having. I believe my problems though were the result of other symptoms that I was having from the RSD (namely the nausea, dizziness, and vomitting). Since we have (finally) gotten those things under control the GI problems seem a lot better.

Did the doctors have any ideas what might be CAUSING the gastritis? Perhaps if they could narrow down the cause then they could more effectively treat the problem. I know that doesn't help much if the current doctors you have are not really providing the quality of care that your daughter needs. This is unfortunately WAY too often the case for those of us who suffer from RSD...and I can only imagine that doctors may take the complaints of a teenager even less seriously than those of an adult (this shouldn't be the case but if my memory serves me correctly from my times as a teenager I think it probably happens all too often).

Many people with RSD also suffer from gastroparesis...is this anything that has been discussed with the doctors? I don't have experience with it myself, but I know many people with RSD suffer from this as well. Hopefully one of them will pop in here with some more specific information about it and the treatments. If your daughter has this and it is undiagnosed then the treatment for simple gastritis (simple...HA...yeah right) may not be enough to treat the real problem.

Again...I am so sorry to hear that your daughter is suffering with this on top of RSD. I hope that you are able to find the answers you need and I hope that you find a compassionate, good doctor who can help your daughter to get the relief she needs.

[JoDes]

Thanks for your concern of my daughter's needs. I'm aware of quite a few RSD sufferers that also have Gastroparesis, but her doctor did not diagnose her with this, he just said she has acute gastritris. At this time, I'm searching for another doctor, hopefully, one that is comfortable with RSD and GI issues. Unfortunately, I'm limited to funds because I'm not able to work because of my health issues, and the only doctors that may be able to help her are out of state or within PA, but do not accept her health insurance. Her current doctor basically decided the medication that he's prescribing is enough to help her condition, and choices not to follow through with anything further.

[catra121]

Originally Posted by JoDes

Thanks for your concern of my daughter's needs. I'm aware of quite a few RSD sufferers that also have Gastroparesis, but her doctor did not diagnose her with this, he just said she has acute gastritris. At this time, I'm searching for another doctor, hopefully, one that is comfortable with RSD and GI issues. Unfortunately, I'm limited to funds because I'm not able to work because of my health issues, and the only doctors that may be able to help her are out of state or within PA, but do not accept her health insurance. Her current doctor basically decided the medication that he's prescribing is enough to help her condition, and choices not to follow through with anything further.

I'm very sorry to hear this. It doesn't sound like your current doctor is doing anything to really help ease your daughter's pain and discomfort. Sounds like she is going through a lot and it is terrible for someone so young to have to go through that. I hope you find someone soon who can help her.

In the mean time maybe trying the change in diet would be beneficial to her. No guarantees...but it's worth a shot. The 4 F's diet has been good for me. If the gastritis is the result of some of her other problems, then maybe you need to look into seeing if there are any treatments that can help get those symptoms under control, which may in turn help with the gastritis.

Just as a side note...has she had any issues with the Cymbalta? I know it made me VIOLENTLY ill when I started to take it...I consistently got sick 30-45 minutes after taking it. Or has she started any other medication around the time she began to have the gastritis problems? There are usually other medications that can be tried that maybe she would do better with that would have less side effects. Or sometimes it's the combinations of meds. Has she tried Lyrica or Neurontin instead of the Cymbalta? Lyrica worked the best for me and I didn't have any stomach problems when I took it. Neurontin is supposed to have less side effects than some of the others (though unfortunately it gave me personally no relief).

RSD caused the dizziness, loss of balance and coordination, blurry vision, increased heart rate, and blood pressure problems for me. Has she had these problems before or just after she got RSD? I only ask because these are not all symptoms that are typically linked with RSD, but can occur as the condition worsens because of the malfunction of the sympathetic nervous system. If the root cause of some of these problems is the RSD itself then maybe there are other treatments which may help get those things under control. Since I went on Clonidine patches (a treatment I read about on Hooshmand's RSD Puzzles and took in to my doctor) this has helped tremendously with the dizziness and blurry vision. Just something to think about, particularly if other treatments are not controlling the other symptoms.

Good luck to both of you.