My daughter

[_silentkid]

I hope the doctor figures something out. The last time I had really intense abdominal pain, it was acute appendicitis. It could be a number of things, though. Maybe the CT scan will clarify things. Best wishes.

[_Yoda]

Any word on Runtu's daughter?

[_Runtu]

Any word on Runtu's daughter?

Now they're saying it might be her gall bladder. Or stress-related. Or whatever.

Very frustrating.

[_beastie]

Boy, do I know what you're going through. It's pure hell.

I'll just throw something else out there - food triggers. And did they test for Lyme disease?

My daughter had Lyme disease a couple years ago - when Katrina hit I was in the hospital with her, watching her suffer and not knowing why. Lyme disease is a horrible disease and difficult to diagnose because it can cause problems in literally every system of the body, hence, its symptoms vary a lot. My daughter had excruciating headaches - we thought she had meningitis and she had that awful spinal tap done - and stomach pain. She also had other strange symptoms, like chest pain that sounded like pleurosis, but wasn't. And a very high fever. Then she'd have periods of feeling better, only to have the symptoms spike again.

The Lyme diagnosis was tricky, because her first blood test was positive and the second was negative. It is difficult to find a Lyme literate doctor where I live, so I ordered a private test done and traveled four hours to a doctor with a Lyme specialty. He had a pic-line (permanent IV) put in her arm for a month, and it did the trick. He knew enough about Lyme to know that the blood tests have to be interpreted, they aren't reliable enough to just say "yes or no". Symptoms count as much as the test.

Anyway, that is one possibility. Another is the food issues. My daughter clearly recovered from the Lyme, but continued to have headaches and stomach problems (although she had diarrhea more than vomiting, although she did vomit from time to time) This went on for the next year and a half. It affected her school attendance so much we had to put her on homebound. I was taking her to a neurologist primarily, because I thought the stomach issues were caused by the headaches. He thought they were just intractable migraines, but there were some symptoms that didn't match up. On one of my many internet searches to figure out what in the heck was wrong with my daughter, I accidentally discovered something called gluten intolerance (celiac disease). It's more severe than just a food allergy. Anyway, my daughter has always had a strange aversion to eating bread, ever since she was very little. She's never eaten a sandwich in her life. She always claimed it made her sick. That made me want to investigate gluten more, and sure enough, gluten intolerance causes all sorts of gastro problems BUT also can cause migraines. In fact, it is one of the primary causes of intractable migraines. Again, the blood test wasn't clear - positive on some elements, negative on others. Her gastro doctor wanted to prescribe five different meds and called it IBS. She and I educated ourselves on gluten and, on our own initiative, eliminated gluten from her diet. All of her symptoms stopped almost immediately. Since then, she gets a headache now and then, usually caused by stress, or a stomach ache now and then, but she's essentially normal now. And doesn't have to take five meds a day.

I'm just sharing this in the hopes it will give you a useful lead. I know doctors can be practically worthless sometimes. Good luck. You are going through one of the hardest things to experience as a parent. The stress I went through during that period was so intense I was grinding my teeth during my sleep and had to start wearing a retainer to stop it.

[_Runtu]

Thanks, beastie. She's going in for an abdominal ultrasound on Monday. If they don't find anything, they'll send her to Primary Children's to see a specialist.

[_beastie]

I'm going to give you one more piece of advice, and I learned this the hard way. You may already realize this, but I'll say it just in case.

Don't trust any doctor - including a specialist - to really take care of your daughter and figure out what is wrong with her. I'm not saying they don't care. They just don't have the time. Doctors tend to be chronically overbooked, and simply don't have or take the time to delve into one puzzling patient in particular, unless, as previously mentioned, you can find House. I think the reason House is so popular (one of my favorite shows) is because he's an aberration. A doctor whose one job is diagnosing puzzling cases. Most doctors can't or won't do it. If you, or your loved one, has a problem that is not readily diagnosed and treated, you are in for a hard time, unless you are extremely lucky. YOU are going to have to accept that YOU are in "charge", so to speak, of your daughter's case. This does not mean diagnosing and treating. This means keeping track of EVERYTHING - every test that is done on your daughter - GET A COPY OF THE RESULTS for your own files. Be very assertive with the doctors, don't let them overlook or discount symptoms. On top of that, investigate whatever you can - the internet is very helpful, as long as you are careful of sources and verify. Books are helpful, too.

One of the things that helped me the most, each time one of my kids (or me) faced a puzzling health problem, was to find a discussion board with people who discussed that problem. There are scads out there. You may not hit upon the right board with the right problem right away, but when you describe what's going on, chances are that SOMEONE on that board has had some experience with it and can point you in the right direction. This is how I, with some help from my doctors, recently figured out what in the heck was wrong with me. That helped me to figure out what kind of doctor to go to in the first place. I first went to one kind of board, because I saw about the problem on one of those health TV shows about odd health conditions, and thought, hey, that sounds like some of my symptoms. So I found a board that discussed it. My symptoms didn't completely match, though, and they were able to point out why, and then a few said, hey, but you know, your problem sounds like THIS one instead. So I went to a board for THAT problem, instead. Again, my symptoms didn't entirely match, but someone there said, hey, you know, try THIS problem. That last one was the one that eventually unlocked the whole puzzle.

It takes time and is irritating, but in the end, can be very helpful.

[_Yoda]

Any word on Runtu's daughter?

Now they're saying it might be her gall bladder. Or stress-related. Or whatever.

Very frustrating.

Runtu,

I was just thinking about this today. It very well could be gall bladder disease. I went for months before they discovered what was wrong. It was right after I had my baby, and I was having symptoms very similar to your daughter's. I don't know why I didn't think of this before.

Actually, one of the nurses suggested an ultrasound because the doctor was at his wit's end trying to figure out what was causing the pain.

If it is gall bladder, the ultrasound will show the gall stones.

The good news is, they have drastically improved the gall bladder surgery from when I had it done. It is very non-invasive now, and only leaves a small scar. I think you are in the hospital overnight at the most.

[_Jersey Girl]

Any word on Runtu's daughter?

Now they're saying it might be her gall bladder. Or stress-related. Or whatever.

Very frustrating.

Not wanting to get into your daughter's personal stuff so I'm just going to make a few random comments. Please do not comment on any of this, if you did and I were your daughter I'd be really ticked with you!

with regard to to gall bladder disease. Gall bladder attacks are excruciating. The pain typically radiates up into the shoulder and makes you think you're having a heart attack. Trust me, I know.

Back to the "touchy" stuff for your daughter. If she is using oral contraceptives for example...to clear up her skin, regulate her cycle or to prevent ovarian cysts from acting up...she has an increased chance of developing gall stones. I know this for a solid fact.

Do not reply to any of the touchy stuff, Dad! Just some food for thought...maybe your doc is on the right track after all.

Liz is absolutely right about the laproscopic surgery. I had it myself. If you would like to know more about that pending the ultrasound (gall stones will show up on that), feel free to PM me here.

[_Jersey Girl]

Any word on Runtu's daughter?

Now they're saying it might be her gall bladder. Or stress-related. Or whatever.

Very frustrating.

Not wanting to get into your daughter's personal stuff so I'm just going to make a few random comments. Please do not comment on any of this, if you did and I were your daughter I'd be really ticked with you!

with regard to to gall bladder disease. Gall bladder attacks are excruciating. The pain typically radiates up into the shoulder and makes you think you're having a heart attack. Trust me, I know.

Back to the "touchy" stuff for your daughter. If she is using oral contraceptives for example...to clear up her skin, regulate her cycle or to prevent ovarian cysts from acting up...she has an increased chance of developing gall stones. I know this for a solid fact.

Do not reply to any of the touchy stuff, Dad! Just some food for thought...maybe your doc is on the right track after all.

Liz is absolutely right about the laproscopic surgery. I had it myself. If you would like to know more about that pending the ultrasound (gall stones will show up on that), feel free to PM me here.

[_Runtu]

OK, it's about 1:30 a.m. Sunday morning and I just got back from Primary Children's. We took my daughter up there on our doctor's recommendation, as she seemed to be worse today (I suppose her lying face down on the floor in her room was probably a sign she was worse). They took some blood and did all the tests they could think of, and they all came back normal. The doctor there said she was completely baffled, but my daughter was so severely dehydrated she said she thought it best for her to stay so they could rehydrate her. They are going to have a gastroenterologist see her in the morning, and she'll probably get an endoscopy.

I'm home, and my wife is with her at the hospital. I'll be back up there in the morning.

Thanks for all your kindness and support.

John