Ped Gastro in San Antionio/Austin Recommendations PLEASE

[Frische Haus]

Can anyone please share their experience/recommendations for Pediatric Gastroenterologists in the Austin or San Antonio region? Thank you, thank you for any and all input.

I am new to this board and I have had three very negative experiences with a ped gastro doc in Austin. I have a date with another (in the same clinic) a month out. But my Ped Allergist suggested today that I consider the San Antonio region because he had heard that there was a greater pool to draw from down there...

If you want to slog through my son's story, here it is.

My son who is now 3 yrs 4 mos has been having digestive issues (chronic mild diarrhea + complaints of "tummy hurts") since mid-February of 2008. He has had two rounds of treatment of an anti-parasitic medication (Flagyl in Apr and Alinia in Oct)--in spite of having no positive test results for giardia. The ped gastroenterologist in Apr said that she thought he had postviral enteritis--and that while there was no empirical evidence to support treatment with an antibiotic/Flagyl she found some success with it in her clinic...

I followed up with her in April and May because he had no relief from his symptoms. I was told for the third time in May that his problems were "not significant" and "not diarrhea." That he would not have to gain weight over the course of the year because "that is the kind of child she sees in her clinic." And that she did not know how seriously to take "complaints of pain from a toddler unless they were writhing on the floor."

We have been dairy free since February because he has immediate problems when that is reintroduced to his diet. (In May the pediatrician said there was no reason that he should not be able to tolerate milk at this point--and that he did not have lactose intolerance because he was "white," but that I could continue the dairy free diet for another 3-4 months anyway...)

Dosing with the Alinia in Oct (3 day treatment 2X a day) resulted in the immediate restoration of his appetite--but I also noted that on his first day of treatment with the Alinia he consumed no baked goods that day and refused bread. However, diarrhea never improved during this time. Within one day of stopping the Alinia we had an immediate return of his symptoms (he had whole wheat pancakes for breakfast) and within two hours of eating he had complaints of "being sick" and was lying down on the sofa.

The ped's office called that morning and said since I had earlier reported how the Alinia seemed to restore his appetite that we should "go ahead and finish" the bottle. I asked the nurse what I was supposed to do when the Alinia ran out (in another 2 days) because he was having the immediate return of his symptoms and she said to just come back in.

I decided that since he had so much success eating on that first day of Alinia--when he also consumed no wheat. That I would try him on no wheat (still no dairy) when we finished the Alinia. 24 hours after the last dose of Alinia, he had his first normal BM in 8 months. For about 3 days I had relatively normal BM and then his symptoms started to flare up again (I had switched to a breakfast cereal that "CONTAINS MILK INGREDIENTS" and I think this was the source of the return of symptoms.

Because of my seemingly miraculous success on 10/21 of having a normal BM I told the pediatrician's office that I wanted the celiac panel/blood screening done. When I went in for the draw the nurse said she was testing me for IgE/food allergies. I asked her if this was the same as the celiac panel and she said no but she could have it done anyway because the doctor "wouldn't care." We were called into the office on 10/29 and surprise no celiac panel had been run. His IgE came back flagged as being high--though it was not clear why it was so high because it did not show he was allergic to any of the things that they tested for.

I was mad about the celiac and he agreed that it would be a good idea if we did test for it. I said that I had seen on your website that most doctors advised being on a diet that contained wheat for 2 to 4 weeks before testing in order to get an accurate result. He suggested that I go have him eat some wheat that morning and come back in the afternoon for the blood draw. I succeeded in getting him to eat half of a carrot bran muffin at Whole Foods then he promptly fell asleep for 3 hours until it was time for the blood draw.

We get these results back in 5 days. Since we had been no wheat for almost 10 days, I am of course worried that half a smallish muffin is not going to be sufficient to get a reading on this blood test. And my pediatrician sent my husband home at 4 pm with a printout for me about "Chronic Nonspecific Diarrhea (Without Failure to Thrive)."

I completely do not agree with this assessment. In my opinion he has gone from having a little linebacker physique to being the smallest kid in 3 year old soccer class of 20 children. I am so completely angry and frustrated. We have a follow up with a DIFFERENT gastroenterologist Thanksgiving week but she is in the same clinic and is partners with the gastro doc we have already had no success in seeing.

I have two kids close in age. The oldest one has none of these problems. This youngest one has taken to asking me why he is always sick and when I unsatisfactorily respond that I don't know, he responds fatalistically that he will never be well.

Final note, I had tried WF for a few days back in April before seeing the gastro doc the first time and she told me that I was "needlessly restricting his diet" and that I was supposed to put wheat back in his diet. I contacted her the following day after he continued to take one bite and refuse to eat the bread products (it took him 30 min to eat 3 tbs of a bagel)--and she told me over the phone that I was just supposed to keep offering it--this is the way it was with toddlers.

(The allergist sd today that the IgE test results were clinically insignificant--and that I needed a gastro doc for his issues. )

[aklap]

Hi Frische,

Welcome to the board! Sorry to hear of your crappy [but all too common] experience.

I'm running short on time, but for doctors, you might look thru the TX support group websites. Many times they will list docs - if not, I'd connect someone from that support group to see what they say.

Lone Star Celiac Support Group, CSA #51 Dallas Fort Worth - http://www.dfwceliac.org/
San Antonio Alamo Celiac (GIG) - http://www.alamoceliac.org/acaboutus.html
Houston Celiacs (CSA#25) - http://www.houstonceliacs.org/
Dallas ROCK - http://www.dallasrock.org/resources.htm
North Texas (GIG) - http://www.northtexasgig.com/
Brazoria County Celiac Support Group - Gulf Coast Celiac (GIG) - http://brazoriacountyceliac.bizland.com/
Lubbock Celiac Group (CSA) - http://www.geocities.com/lubbockceliacgroup/
San Antonio Celiac Connection for Kids (ROCK) - http://www.kidceliac.com/
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[nancw]

You are a smart Mom. Keep searching until you find someone who will listen, because this particular group of docs is not listening to you.
_________________
Nance

gluten, dairy, soy, rice, yeast and 99% grain-free

[Frische Haus]

Thanks for the feedback. I've heard a couple of good recommendations for the gastro doc that we see Thanksgiving week so I am just going to keep that appt.

But I am compelled to relay the call from the pediatrician's office that I received a couple of hours ago...

A delighted lab tech called me this morning and said "everything's clear!"
I think I replied rather bitterly, "that's just great."
And she said, "he needs more wheat in his diet" and then laughed (truth).
I pointlessly pointed out to her that this is the first time he had had normal BMs in 8 mos since he's been WF/DF. She elected not to respond. So, I said "thanks for your help" (probably rather insincerely) and hung up.

The only thing I have to go on is that the celiac website said that they have to be on wheat for 2 - 4 weeks prior to bloodwork (which was not the case prior to the lab on 10/30). This means I will start giving him wheat on 11/11 (and then dairy on 11/18--just in case it's just lactose intolerance) so we can get ready for the 11/25 gastro appt.

Perhaps the 2 rounds of Alinia cleared a parasite that did not evidence itself on the labwork. And the Ped's office can feel free to treat me with disdain and sanctimony.

But if they are idiots, they shall feel ashamed. (11 of the past 15 days, my son has been completely symptom free.)

[aklap]

How frustrating!

There is no standard when it comes to the amount of gluten or the duration. 2 - 4 wks may not be enough. Take a look here: http://forums.glutenfree.com/topic5591.html

Be aware that kids < 5 years may not produce enough antibodies for accurate testing.

It sounds like you are on the right track!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[Frische Haus]

Al,

OK, I checked out the link and read info at the referenced source. So, it would seem that the best thing to do is just wait and hope I have a good visit on the 25TH. And if she wants to do a gluten challenge then she can monitor it. Barbara

[nancw]

Another thought - have you requested copies of test results for your own files? When any medical professional tells me "everything's fine" or "all clear", then I really want copies.
You should get copies and take them to your next gastro appointment.

My gastro (who is said to be one of the best) failed to notice something significant on one of my results, which I found on my own because I requested and received copies of my test results.
_________________
Nance

gluten, dairy, soy, rice, yeast and 99% grain-free

[Frische Haus]

We had our gastro appt today with the new doc. She spent WELL over an hour with us. Very humane. I made my husband go too. He brought in a nice graph, which he had made, that clearly illustrated my son's lack of weight gain over the past 8 mos.

We left with a bag of stool specimen collection kits. And she wants us to continue with no gluten and no dairy (though introduce the hard cheeses). We go back late January.

She wasn't ruling out allergies to wheat and dairy despite our having made a couple of trips already to the pedi allergist--she sd that the skin test is a very crude method of determining sensitivity. (Though we also had a blood draw for food allergies which was negative.)

On NANCW's suggestion I had brought all of my lab tests. And she observed that our Pedi had failed to order all the celiac panels that she normally tested for (but wanted to hold off on more bloodwork on him till later until she had ruled other things out).

I just fell incredibly relieved to have a doctor who is not out of hand dismissing our concerns. And she was much more attentive to my husband's crummy family history of colon cancer (and other cancer and etc...).

Also she never said anything negative about her partner. In fact, she never said anything whatsoever about our previous treatment--though she questioned us extensively about our care to date. In the end, that seemed to be saying something after all.

Thanks for all of the support. I feel like we have a specialist who is in his corner and I am very relieved. (The emoticon is at my 3 yr old's request...)

[aklap]

Hey Frische, thanks for the update!

It sounds like you've got a doc that will listen and work WITH you to help get some answers.

If/when your doc decides to run the celiac panel, she will probably ask you to put your son back on gluten for 6-8 weeks prior.

Good luck!!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[cardine45]