Tuesday, May 13, 2008

Head in Sand

Ahhh, it's comfortable in here. The sand is nice and cool and it's dark.

There's a world out there? Really? Well, I think I'll just stay in here for a while.

You see, in here Paige isn't doubled over in pain after she eats.

Last year the doctor told us that her gall bladder did not contain gallstones so the pain must be in her head. And, doctors are always right. At least they are while I am in my home in the sand.

If I come out of the sand I will have to fight. Again.


What happens if they do listen to me? What painful test will she need? Is it worse than the pain after she eats. I can keep on trying to be careful of what she eats. Can I do that for the rest of her life? What happens if one day the pain doesn't go away after 30 minutes? Will she need surgery? I don't want her to have to endure another surgery? Which is worse? Pain after eating or surgery?

Thank goodness I don't have to come out of this sand and face this issue.

Can someone tell me how to turn off that little voice that keeps on whispering, "It's time to fight again. Get your head out of the sand"


Christy said...

When you figure out how to turn off the voice, you would make millions. Enjoy you time in the sand even if it is short lived.:)

Anonymous said...

My kid gets tics for 2 days if she eats pepper. So I just cut out the pepper. Why not treat this like a food allergy and have her avoid the source?

Anonymous said...

I know that there are a lot of people who have gallbladder surgery and are "cured" forever. I am not one of them. If I eat certain foods, I am sick sick sick for an hour after the meal. Eating out in public is a calculated gamble. It has gotten better though I had the surgery last August. I would recommend exhausting all efforts to control this through diet. It's worth it, from my vantage point.

Anonymous said...

If she does not get pain if she avoids certin food , cut out that food!!! I am the mother of a preemie with multi. medical problems , if only I could fix something for him by just cutting out the food, I would. My child has had a total of 4 surgerys each time we did everything we could to prevent it. Surgery should ALWAYS be last resort! I say that as a mom and a nurse.

Kellars Mommy said...

Coming from someone who had gallbladder surgery it is not so easy as cutting out a certain food, foods that I once tolerated soon became something that set off a gallbladder attack. I was 27 years old and the dr's thought I was crazy when I told them my gallbladder needed to come out, test after test came back fine. I finally told him it HAD to come out and if I were wrong and ins didn't pay then I'd find a way to pay off that surgery..fast forward to the dr coming in my room as I woke up from surgery and apologized to me, my gallbladder was full of stones and on the verge of falling apart. I'm not sure if you have your gallbladder or if you have ever had a gallbladder attack but it's awful,and if Paige says that she is hurting and you feel it's her gallbladder bless her heart b/c it is miserable! Sadly I still have symptoms from time to time of a gallbladder attack, dr said this was normal in some people...Hope you find answers soon!

Mom to Lilike (2003) Locke (2006) Anjeni (2008) said...

When I was pregnant with Lilike every time I ate I had this horrible pain that made me double over. Also really bad morning sickness. But with my son only a few minor tummy pains and nothing of the pain I had when eating in pregnnacy with Lilike. Im having a girl this time due July 28th 2008And with Anjeni Ive only had a little bit of morning sickness and a great pregnancy besides the constant tiredness, some headaches and being out of breath alot. Im now 29 weeks. Despite taking the same amount of iron tabelts and vitamins in pregnancy with Locke like Im taking now with Anjeni With Locke I had no low iron levels. My iron levels came back slightly low with Anjeni early on and with Lilike my hemoglobin came back at 56 at 35 weeks. Yes I did have trouble with breathing and walking aroudn with Lilike due to my Anemia :( Girls must need lots of iron early on!

Sarah said...

Hey Stacy, I'm so sorry Paige is pain. I know how you feel about the tests and the fight (ugh, don't get me started on the fight) but she could have an ultrasound for her gallbladder and that's noninvasive. Also, what about her pancreas? She might have a digestive issue unrelated to the gallbladder but needs digestive enzymes.. just a thought... for when you want to come out of the sand, and then you can smack me for throwing something at from left field.

Anonymous said...

From Helen Harrison:

I have to agree with Kellar's Mommy.

The pain is horrible (thought I was having heart attacks -- at age 29) and it doesn't necessarily go away with dietary changes or even surgery. There is something called "phantom gall-bladder syndrome" that can take over after the gall-bladder is removed. It's not fun.


Sis Sarah said...

Mine went away after surgery. They did an ultrasound first to check for gal stones, they told me that if they couldn't see them they would give me some kind of med, that would start an attack, if it actually was gal bladder realted and they would be able to see it on the test.

For those recommending not doing surgery. Here's the problem. Gal bladders get diseased much like an appendix. The longer you wait, the more diseased they get. You can go from being able to take them out lapriscopically (which is ideal) to having to do it the "old fashioned way" which is really a nasty surgery. If it was me, I'd take the darn thing out if it is causing problems. Also gal bladders can go gangrene if they are allowed to stay in too long, when diseased. That is basically really really bad.

I also went from being able to sort of control it with diet, to basically nothing mattered and it was literally hell on earth.

The only thing I have to stay away from now, is lard, which really isn't that hard. My sister had hers removed and although there are a few more foods she can no longer eat, she is so much better.

Although for adults it may be a good thing to eat a low fat, no fat diet, it is not a good thing for a young girl, who probably could use a few lbs on her not off.

Eating a non fat diet, is really not easy to do. And that is what you will basically have to do to try and keep the gal bladder happy.

Kellars Mommy said...

I too thought I was having a heart attack! I guess I have that phantom gallbladder issue, the 1st time I ever had fish it set me off bad, just depends on the day for me I guess..So you have this as well?

I had that test done, I had to lay in a machine for over an hour and *nothing* happened, 2 wks later I begged and pleaded that it had to come out and all the ultra sounds I had done as well as that expensive test were wrong..Cutting out foods was not an option for me either, I tried...Good point about letting it go on to long and the need for a more invasive removal..

Anonymous said...

From Helen Harrison to Kellar's Mommy:

I can't say any particular food sets off the "phantom" symptoms for me, and it's been years (thank heaven, knock on wood) since I've had an attack -- but they used to end me up back in the hospital.

I understood these attacks could be spasms of the common duct or, in some cases, stones produced by the liver! I think there is also a neuro component, much like the phantom limb syndrome of amputees.

I've been told that drinking warm liquids will help calm down the spasms. I would think that something like valium might also work, but that's just a guess.

I had the old fashioned surgery -- the kind that leaves you looking like you've been run over by a truck or attacked with a chain-saw. And it was as painful as it looked. The recovery and rehab was agonizing -- and I've had lots of other surgery to compare it to.

As for those who say just avoid fat, I think omega 3 fatty acids are fairly critical for all of us, especially a developing child.


Anonymous said...


I recently had my gallbladder out. There were no stones but the test they did to test my gallbladder showed my ejection fraction (how it emptied) was pretty non existent hence the pain I felt. The test was minimally painful (not really and I am a WIMP) This would be a good test to ask for since it is minimally invasive.

Anonymous said...

Take the gallbladder out -- just did mine -- the pain was unbelieveable. Now much better.

terri w/2 said...

Anonymous (May 13, 3:14 said) "Surgery should ALWAYS be last resort! I say that as a mom and a nurse."

How long is she suppose to suffer?Surgery should be considered if she is in pain and it is becoming increasingly difficult to control with diet. My 21 year old just had her gallbladder out - was the nifty lap chole - she was overnight one night, pretty much back on her feet in a few days, with minimal restrictions for 4-6 weeks. As far as all the possible surgeries go (shunts, heel cord lengthening/transfers, baclofen pump, harrington rods) we've had happen d/t prematurity, this one was a piece of cake for us.

Stacey - the gallbladder problems we were told were a direct result of her being a preemie - the surgeon said he's done a ton of gallbladder surgeries on former preemies - something about the gallbladder being sluggish d/t TPN use in the NICU.

Yet another neonatal residual problem that parents should know about.

The Preemie Experiment said...

terri w/2 wrote: "Stacey - the gallbladder problems we were told were a direct result of her being a preemie - the surgeon said he's done a ton of gallbladder surgeries on former preemies - something about the gallbladder being sluggish d/t TPN use in the NICU."

The biggest problem we face here is that there are only 2 options for GI docs.

One is in practice for herself. Our first experience with her was when she told us that all of Paige's constipation issues were our fault because of her diet (before she even ever asked about her diet). When I explained that Paige has been constipated since birth, even when she was on formula (when her diet was controlled), she got upset that we would question her. When she examined Paige she stuck her finger in her bottom without telling her what was coming. This was AFTER we explained that Paige is an excellent patient as long as she knows what is going to be done to her. We left and never went back.

The 2nd option is a group of GI docs. We have seen both of them. One is impossible to work with. During one exam he was ranting about having to leave Florida because of "all of those damn Mexicans." The other doc flat out told me that her gall bladder is fine because she doesn't have gallstones. He said that preemies do not have GI issues, even though I brought him a few studies.

My next step is going to have to be traveling a few hours to a different doc. Ugh.

anonymous wrote: "Why not treat this like a food allergy and have her avoid the source?"

I wish I could. Unfortunately Paige is very underweight and doesn't eat many foods.

Right now she is even reacting to salad dressing. Her worst bout of it was after eating bread that she was dipping in olive oil. She laid on the couch for an hour after that meal.

Anonymous said...

Has Paige ever had her alkaline phosphate and bilirubin levels tested?? My former 23 weeker who is 2.5 now had elevated alp and bili levels while in the nicu get this he was 33 weeks adjusted at that time and he had two massive gall stones. the ony symp at that time he had was clay coloured stools and thank god we had wonderful neos and they figured it out with a lot of scaning and contrast testing and the dtones were removed lapro. He still sees GI once in six months but his lab look wonderful and he seems to be thriving.

Anonymous said...

Stacy, you have a background in insurance--go "out of network" (and perhaps out-of-state) and employ all the lingo needed to get Paige a proactive doc. Come back to the midwest, to Marshfield or Mayo or Children's Memorial in Chi-town. Say you NEED at least one
2nd opinion----because you DO!

You were ready to get your head out of the sand, or you wouldn't have written!!! Get militant!!
You can rest again later!

Chris and Vic

Kate K. said...

Regarding Anonymous (May 13, 3:14PM said), "Surgery should ALWAYS be last resort! I say that as a mom and a nurse."

While I think that some people are all too quick to jump on the surgery/medication bandwagon, the problem is that when there are gall bladder pains, there really isn't a cure other than removal. Certainly one can "try" to manage it through diet, but so many things can trigger a gall bladder attack, if the gall bladder has already shown signs of being faulty. For my sister-in-law, even lettuce would set her off. For me, it was soy. For my mom, it was meat.

After I had a gall bladder attack that landed me in the ER 5 years ago at the age of 29, I investigated some holistic options. I was not (nor currently am) afraid of surgery, but I wanted to explore other options. I discussed the possibilities with a resident who was willing to entertain various solutions. Basically, it came down to the fact that if my gall bladder was loaded with gall stones and those gall stones were expelled from the gall bladder and got stuck in the biliary duct, I would be in serious trouble. One can do without the gall bladder; but the biliary canal is needed (it is the tube down which bile from the liver travels to reach the intestines). So I ended up getting the laparoscopic surgery.

My sister, who had her gall bladder removed at the age 21, ate a low fat diet before her gall bladder went bad. She is and was slender at the time. She was unable to manage it through diet. She does feel that she cannot digest fats as well as she did prior to having her gall bladder attack. But I don't think that there were really any other viable options other than removal.


I'm so sorry to hear that your daughter is having to deal with this. And, I'm so sorry to hear that you are having to deal with doctors who don't listen.

Having a preemie has been a real eye-opener for me. I can't believe how many people have medical degrees but can't seem to use their brains in a logical fashion when confronted with patients. A GI making judgments about a patient before even asking about the patient's diet is just so dumb. How is it that these people are able to practice medicine?

Sadly, this is the state of American medicine. Many doctors practice medicine but really aren't curious about the human body and certainly aren't patient-focused. And the number of doctors who don't stay on top of the current literature is scary.

My parents are friends with a prominent ER doctor in our town. They've been telling him about my frustrations with the doctors and residents we've encountered. Their friend said that he wasn't surprised that I was more up-to-date on the literature than a lot of the doctors. Apparently, a lot of them don't read much after medical school, which is fine...when a patient doesn't need treatment.

The Preemie Experiment said...

Chris wrote: "Stacy, you have a background in insurance--go "out of network" "

I wish I could Chris. Our state has a serious problem right now keeping any pediatric specialists. We only have 2 peds neuros, 2 peds endos, 3 peds GI's, etc. And, we have quite a large Children's hospital.

But, I do plan on going out of state. She has a cold right now and I want to wait until it is over so nothing else can be blamed on her symptoms. Although I am wondering if the worsening of her symptoms could be the result of the gallons of mucous she is swallowing.

The Preemie Experiment said...

Kate wrote: "After I had a gall bladder attack that landed me in the ER 5 years ago"

I have thought about bringing her in to the hospital during an attack. Her pain is real and quite severe at times. But, by the time we would get to the children's hospital (45 minutes away) the pain would most likely be completely gone. At the very least it would be barely noticeable to her at that point. It seems to only last 30 minutes or so. I have even thought about taking her out to a restaurant near the hospital and feeding her olive oil (always sets it off). But the issue seemed to have gone away for a few months and we all forgot about it (easy to do when you are dealing with other medical issues).

Kate K. said...

Stacy said: "But, by the time we would get to the children's hospital (45 minutes away) the pain would most likely be completely gone."

When I had my first attack, it lasted over an hour. Then, I just felt discomfort for a couple hours after. I had a few subsequent mini-attacks before I had surgery (they were short, but not full-blown, sword through the abdomen kind of attacks like the first). I was "lucky" in that when I went to the ER, it was late at night, so I only had to wait an hour to see a doctor and the doctor on duty recognized the symptoms as a gall bladder attack. I had to wait there over night until the ultrasound person came on duty in the morning.

It was officially diagnosed from the ultrasound. But the interesting thing was that the ultrasound showed a stone or two. When my gall gladder was removed, it had 23 stones (some created by the surgeon as I was told the gall bladder was almost one huge block of stone that he had to chisel away at). I was very fortunate in that the surgeon continued with the laparoscopic rather than deciding to opening me up (which would have been much quicker for him, but would have meant several weeks of recovery for me).

The nice thing about the ultrasound is that it doesn't hurt. Nice, non-invasive procedure. If the ultrasound shows gall stones, then the GIs will be more amenable about the surgery. The problem, of course, is that if the ultrasound technician isn't very good, s/he might miss the gall stones and mistakenly assume that there is no problem (when there is one).

I empathize about the ER waiting time issue. When I've taken my son to the ER/Urgent Care, the wait has sometimes been 5-6 hours.

Chelcie said...

I'm not sure if this will be helpful, but...

When I was younger (maybe about Paige's age, but definitely younger than 12), I used to experience the same sorts of problems with certain foods.

I remember we used to put mayonnaise in chili because it was always made super spicy and the mayonnaise cooled it down. I'm not sure what other foods made me feel bad, but definitely, this would cause me to get really bad stomach pains.

Perhaps because I couldn't articulate what exactly the pain felt like or because I couldn't properly say where the pain was, my mom used to think I must be starting my period. Not the case.

Eventually, we did see a doctor about this problem and I was diagnosed with having crystals in my gallbladder after having an ultrasound. The doctors said they could "zap" them out with a laser in a non-evasive procedure if the problem continued to occur. And if that didn't work, they could remove the gallballder.

I don't know whether or not the crystals dissolved themselves, but we changed what I ate and the problem gradually subsided. I don't experience the pain anymore with anything that I eat, so maybe I grew out of it, as well.

Also, you can help reduce the occurrence of gallstones (and I'd assume crystals as well) by drinking a lot of water and making sure you're well-hydrated.

I hope some of this information helps! And I also hope Paige feels better.


Stacy said:
"The other doc flat out told me that her gall bladder is fine because she doesn't have gallstones. He said that preemies do not have GI issues, even though I brought him a few studies."

This is just something I've wondered about for a while since I've started reading your blog and I'm sorry if this comes out in an offensive manner, but please know that I mean this in the most non-offensive way and that I am genuinely curious to know the answer.

What if the problem is not a complication of being a preemie and is just a problem that she has? That she would have had even if she hadn't been born preemature? How do you separate the "preemie problems" from the "non-preemie problems?"

Sis Sarah said...

I don't know if this is a possibility. But when I needed mine removed I first was seen by our reg physcian, who sent me to radiology. When they saw the stones (and if needed we could of gone farther with testing and they induce an attack to see what it was doing, if stones are not the problem) and I was referred to a surgeon. I never saw a GI.

I wonder if you could see what the ped, could arrange.

And I know several that are on tpn and it has ruined there gal bladder.