Exhausted And Running In Circles

[tkseeley]

First off, I apologize - I am sure you all probably hear lots of stories like mine and you may be tired of answering newbie (potentially) questions. I don't need much, I just need to hear from those of you who have been through it. I'm so exhausted of dealing with doctors and the unknown that I may rip my hair out. Ok - here's the story (compressed, of course!)

My son has huge - 98% in height and weight - until age 2. Then he just stopped growing. He was never hungry, but I still made sure he ate 3 very healthy and hearty meals a day + 2 snacks. Then the tummy pains started and the behavior problems. He's been tested for all kinds of physical and behavioral problems and every single time everything comes back with "I don't know". He's now 6 (almost 7), 40 lbs, very poor muscle development, doing poorly in school despite having a high IQ, and he's missed several days because the nurse has called saying he's had a bad bout of diarrhea and he's crying from tummy pains.

In august I started pushing the pediatrician to find out what's causing the problems. We tested for every allergy and everything came back negative. I'm not sure exactly WHAT was tested, but he said he was negative for celiac. Stool samples are clean. His bloodwork DID show high EOSOINOPHILs and high liver enzyme. TWO repeat blood tests (3 total over 4 months) showed the same result, so we were referred to a gastro.

The first thing the gastro said was "Celiac" but after looking at the blood work, he said, no. We were told to avoid fructose and sorbitol and keep a food diary. We repeated bloodwork and were to come back in March.

Blood work - EOSOINOPHIL - .71, Carbon Dioxide - 29, Sed Rate - 22. Everything else, including IgA is normal. The doctor says, "Eh, we'll see you in May".

I'm going crazy. I'm tired of cleaning poopy butt, poopy undies, having my 6/7 yr old scream in pain... So I email the gastro and ask if we can just go ahead and go the endoscopic biopsy but he's not willing yet. I got mad and asked him if we were just going to keep repeated the same darn bloodwork that's been the same since August (now 4 times total).

So what do I do? Should I find someone who will do it? Does he sounds celiac-like? Any quick advice would be fabulous. Thanks you in advance!!

[mushroom]

Hi and welcome to the forum.

I am so sorry that your son is suffering, and also that you are not getting much support from his doctor. It is really hard to pinpoint just what his problem might be at this point. Celiac cannot be ruled out but it could be something else as well. I do not understand the gastro's reluctance to do a scope when your son clearly has something going on in there but nobody knows what it is. I am with you that this watching and waiting while your son screams in pain is not the way to go. If I were you and had the option I would take him to a Children's Hospital if you have one in your area and see if you could get a scope for him to both visually examine and take celiac biopsies, and to see what else could be done. Clearly, something! needs to be done.

[raeskids]

I don't know if this will help or not, but my son had elevated Eosinophils in all of his labwork. What other labwork did they run on your son?

[Marlie]

I would ask your doctor for all the labs so you can review them and see what exactly they have tested and google those you don't know to see what they are indicative of if the numbers were too be out of range. I hope you figure out what is making him sick. It's so frustrating.

[SilverSlipper]

Can you get a different gastro? The fact that he has quit growing is a huge flag for any doctor. One approach that I have found helpful when dealing with doctors is to tell them what I'd like for them to do. If I were in your shoes, I'd meet with a new gastro, hand over your copies of labwork, food diary and any other documentation and tell him that you have concerns about Celiac disease and you'd like for him to do a biopsy plus any other tests he feels are appropriate. One thing I did (for a different daughter who had stomach pain) was to video tape the spells of rolling around that she would do when her stomach hurt. It is a very emotionally distressing thing to watch. It was also very convincing that something had to be done. I'd also chart out your own growth chart. Basically you want to put the doctor in a position where he feels compelled to do something, immediately.

Another suggestion, have you tried removing dairy? Sometimes dairy can be really bad for people who are already having stomach problems. It seems to make them worse. It might help relieve some of the pain.