How Did We Get Here, Anyway?

It occurs to me that our reason for having WG on a gluten free diet is no where on this site. A lot of you know the story, but for those who don't, here it is.

The summer before WG turned three she got sick. The symptom we noticed most was her thirst. She was guzzling water. Knowing that doctors like hard data we started tracking her intake to see if it really was a problem worthy of a phone call. She was drinking up to 80 oz of water a day. We would put her to bed with a full sippy cup and she would drain it and cry for a refill in the middle of the night. We called the pediatrician's office and were advised to cut her off or offer her alternatives like fruit or popsicles. We were also told that since it *was* summer and we *do* live in the South drinking a lot of water was not necessarily an abnormal thing. It was not unreasonable advice.

We tried to limit WG's intake. That lasted exactly one day. First she screamed when I wouldn't refill her sippy cup and then she got creative. I caught her drinking from the cat's dish. Later I saw her headed for the toilet with her cup. What goes in must come out. WG was also urinating A LOT. She wasn't potty trained yet and I would put a fresh diaper on her only to have to change her clothes five minutes later because she had peed through the diaper.

The pediatrician did a diabetes test. It was negative. The pediatrician ran some other tests which showed some abnormalities in her kidney function. At that time we were refered to a pediatric nephrologist as well as a pediatric endocrinologist.

The pediatric nephrologist was a jerk. His nurse was a jerk. I wasn't wild about his office staff either. He ordered the tests that showed her wonky kidney functioning to be repeated because, in addition to the excessive peeing, WG had a pattern of diarrhea followed by constipation. He told us that would skew the test results and that we needed to bring her in for labwork after she had had normal bowel movements for at least 3 days.

Nearly a month later this is the conversation I had with his jerky nurse:

Nurse: "We are waiting on WG's lab results. Why haven't you had her labs done? This is really important."

Me: "Well, the doc said the first results were skewed because she had diarrhea. He said to wait until she had normal bowel movements for three days before having the labs drawn. She has not had normal bowel movements for three days in a row yet."

Nurse: "You really need to have her blood drawn."

Me: "Well, I can bring her in, but she hasn't had normal bowel movements for three days and I'd really hate to have to repeat this test for a third time. What would you like me to do?"

Nurse: "She needs to have normal bowel movements for three days."

Me: "Okay, but then you're going to have to wait awhile because I don't think she has had three days in a row of normal bowel movements her entire life."

Eventually we got the labs drawn. I think we were "blessed" with three days in a row of constipation and I decided to define that as normal to get the nurse off my back. These labs still came back somewhat abnormal but the pedi nephro dismissed them and us. I was not sad. Of all the docs that WG has seen he is the only one that I knew I could not work with on a regular basis. He has gotten rave reviews from other patients, by the way. We just had a complete personality clash.

The pediatric endocrinologist was not a jerk. I actually liked her a lot. She tested WG for a bunch of things. WG tested negative for all of them.

Finally she said, "I notice that there is a family history of mental illness. Excessive water drinking can be a sign of schizophrenia. You did mention she has terrible temper tantrums. Do you think there is a possibility that WG could be schizophrenic, bipolar or OCD?"

We were a bit stunned that someone (and someone who was NOT a mental health professional) would postulate that our 2 year old was schizophrenic. I think our answer to her was something along the lines of, "No, we don't think that's a possiblity. Perhaps in 10 years or so we might consider that, but not right now."

Our pediatrician (whom we completely adore) was a bit stumped at that point. She sent us back to the GI doc that WG had been seeing on and off since birth. She had been talking to him about WG and he suggested that the excessive water intake was actually due dehydration from her chronic pattern of constipation / diarrhea. He tested her for Celiac Disease and made a follow up appointment to find out the results.

Around that time a friend and I had decided to give the South Beach diet a whirl. I don't short order cook for my family, so WG and Tim were basically eating what I was eating: lean meats, fruit and veggies. Grains were minimized.

WG started to get better. I mentioned to my mom that the GI doc was testing her for Celiac Disease and my mom told me that quite a few people in our family have been diagnosed with Celiac. With that knowledge, we took WG off gluten completely. Quite simply, she got better. She stopped seeking out water. The dark circles under her eyes disapeared. Her tantrums significantly diminished. She gained some weight (which was a good thing!), and she had normal bowel movements for the first time in her life.

Thinking that maybe we were seeing results because we were desperate for answers, we added gluten back into her diet to see what would happen. Her symptoms returned full-force.

At WG's follow-up GI appointment, we were told that her tests for Celiac were negative. She does not have the Celiac gene. Can she eat gluten? Absolutely not. Her pediatrician and her GI docs have said that she needs to stay on the gluten free diet as long as it is beneficial to her.

The gluten free diet has also been beneficial for Tim and I, but that is a whole other post!

appt updates

WG had two doc appts this week.

Her four-year-old well check was Tuesday. She's around 39 pounds and about 43 inches tall (3 foot 7) which is tall and slim. So, par for the course. WG has been an amazon since birth. Her pediatrician looked at her feet and said, "Those feet are big enough for a six year old!" That's my girl!

We talked a lot about her sensory issues. Sensory Integration Disorder seems to be the trendy dx of the times. Like ADD/ADHD, it's a tough call. Certainly the disorder exists, but when does quirky cross over to disfunction? Preemies especially seem to have sensory issues. This has been a battle in one way or another with WG since birth. She has always been funny about her feet, which makes sense since preemies are subjected to several heel pricks every day. When the child refuses to put their feet on the ground (in WG's case as a baby) it clearly crosses over to the problem area. You can't learn to walk if you won't put your feet down. The issues right now are related to her perception of (or more accurately, lack thereof) pain. Well, that's my biggest concern, at least. I'm scared silly that sometime she will have some sort of infection and we will have no idea until things get serious because she doesn't experience pain the way most of the population does. WG's also a very physical child: spinning, leaping, hanging upside-down, in-your-face. The dare-devil stunts coupled with the lack of natural consequences pain-wise is a frightening combination. Does this cross the line from normal quirky four-year-old behavior? I don't know. It causes stress in our home, which is why we talked to the pedi about it.

We also talked about speech, learning, eating. The pedi, at least, seems glad that she's still GF. Her own daughter has celiac so she has done a lot of research into it lately and realizes that going GF can greatly benefit many many people, not just dx'ed celiacs.

WG had another follow-up with the GI doc today. Mostly routine. She is still constipated so we're upping the Miralax to twice a day and staying the course with the Prevacid. (BTW, the discount card worked but it took 4 Pharm. Techs at Walgreens a good 20 minutes to figure out how to do it. Hopefully now they know and it won't be a production every time she needs a refill!)

A good resource

WG is taking Prevacid for reflux and whatever else is going on in her tummy. We have pretty good prescription drug coverage, but it's still a $30 copay every month. Add to this that she is taking two other GI meds and it gets expensive quickly.

A friend tipped me off that Prevacid offers a "frequent buyers" program of sorts. If you sign up on their site, they will send you information about prevacid (of course) as well as an instant rebate card that takes $25 off each refill. No forms to fill out each month, you just give the card to the pharmacist and get the discount. We got WG's card today just in time because she needs a refill.

Here is the URL to sign up for the program: https://www.prevacid.com/offers/landing.aspx I put in WG's information (name, age, etc) which was strange because she's only four, but it seems to have worked. I have no idea if Prevacid will spam me or send us things in the mail, etc, but honestly, for $25 a month in my pocket I don't really care!

Endoscopy follow up

WG had her follow up with the GI doc today. In a nutshell, nothing new. All the allergy tests came back negative, she tested WG again for the celiac gene: also negative (again), nutritionaly she is also doing okay. The biopsies just confirmed what she saw: irritated, angry, enflamed GI tract.

SO, the game plan for now is to finish the carafate, stay on prevacid and add miralax for the next month for constipation. WG is horribly constipated. Who knows if this is due to her tummy woes or if it's due to the prevacid / carafate. Constipation is a side effect of both drugs.

The doc asked if WG was having any stomach pain. I told her that it was hard to say because WG has a very high pain tollerence and would do just about anything (including lie) to avoid having to go to the doctor. Also, as our friend pointed out to me, WG has had so many chronic tummy issues that she probably doesn't know if she is in pain.

WG will see the GI again on August 21. She has her four year (!) well check on the 19th, so an appointment filled week for her. I was dissappointed that we were put on a short leash (three weeks between appts). I was hoping that she would get a three month window before needing to be seen again. Her doc is concerned about the constipation (WG is bleeding with BM's) and also thinks that an emptying study may still be in her future, so three weeks it is.

Endoscopy update

WG's endoscopy went well. Here are the results in a nutshell:

* The pancreatic rest is not causing a blockage (YIPPEE!!!!!!)
* She has damage to her esophagus from GERD
* The lining of her stomach is inflamed
* The tissue of the upper part of her small intestine is inflamed and friable (which I understand to mean brittle)

The results of the abdominal ultrasound and barium swallow were normal, which we figured. They didn't show anything last go-around either. We won't know the results of the biopsies or the allergy testing until her follow-up appointment which is July 22nd. In the meanwhile her GI doc has added carafate to the prevacid. She also mentioned that she thought that WG's stomach might not be emptying as it should. Tim and I would concur with this since there are times that WG vomits in the morning and her dinner from 12+ hours before is completely undigested. There is a good possibility that an emptying study is in WG's future.

WG did pretty well with the whole thing. She freaked out when they did her vital signs at check in and then again when they were ready to take the tape off her hand to take the IV out after the procedure. She recovered swiftly from the anethesia and was very anxious to get her "huey-huey." She's back to running around and being herself this afternoon. Tim and I, on the other hand, are beat. Neither of us slept well because we were anxious and then we had to be at the hospital at 6:45am. Tim is currently napping and WG and I are about to join him.

The other shoe...

WG is having some health issues again. When she was somewhere around 6 months old she started vomiting for no apparent reason. At it's worst she would vomit 15 to 20 times a day. When the gastroenterologist did an upper endoscopy he found the cause. WG has a pancreatic rest, which is basically a volcano-shaped mass of pancreatic tissue that has grown on the inside of her stomach. Many people have pancreatic rests and never know because they never cause problems. The unique thing about WG's rest is it's size (it is huge) and it's placement. At the time it was causing a blockage and her food couldn't always pass through. We took a "wait and see" approach hoping that as she grew the blockage would lessen and the vomiting would stop which is what happened.


About two months ago, WG started vomiting again. For various reasons (in the interest of not making YOU puke I won't be graphic) it is obvious that something is not right in tummyland. She saw a different gastroenterologist (her usual GI doc is on vacation) who decided that it would be a good idea to see what is going on with the rest. WG had an ultrasound and barium swallow and will undergo another upper endoscopy scope tomorrow morning. While she is under for the scope they are also going to take blood for extensive food allergy testing.


Tim and I are going okay. We've sailed these seas before.... We are being proactive with trying to figure out what is going on this time instead of waiting until she is throwing up nearly every meal. She is also not a frail little baby anymore. WG (finally) has some heft to her. Right now she is at the 95th% for height and the 75% for weight. When we went through this the first time she was around the 98th% for height and the 30th% for weight. There is more wiggle room before panicking about weight loss this time. WG has been a real trouper through it. She did very well with the first round of tests. I don't think she knows what's going on tomorrow, just that she is headed to the hospital and that when she is done (and is up to it) she will get to go pick out a "huey-huey" aka a hula hoop. WG has wanted a huey-huey all summer.

I will post an update when we know more about what is going on. We have always conferenced with her GI directly after the upper endoscopy so I expect that will be the case tomorrow.