We had the GI appt. today

He examined her and talked to us for a long time. At this office they do all of the initial appts. in the presence of a psychologist so she was there, too. After looking at her records, talking to DH and me, and examining her, he said he thinks it’s one of two things: extremely short segment Hirschsprungs, which essentially would mean it’s right at the rectum and a very small segment of the colon, or a severe food allergy. He said he’s leaning towards a severe food allergy that makes it hard for her to tolerate formula with any milk or soy protein in it. He said that if he’s right and that is the problem she’ll have to take prescription formula. Unfortunately, that means he has to get hard proof of the allergy for our insurance to cover the formula. After talking to us for a long time and the psychologist doing some comforting and convincing, we agreed to let him schedule a suction biopsy, colonoscopy, and endoscopy for Monday morning. I went back and forth on it and finally DH convinced me to agree to it so we can find out once and for all what’s wrong and get treatment sooner rather than later. He said that if she has a food allergy like he thinks she has he will see evidence of it in the stomach and colon because there will be inflamation. He also said this will let him rule out conditons such as reflux, inflammatory bowel diseases, and ulcers.

They gave us two cans of EleCare formula and two certificates to send in for two more free cans. According to the can EleCare is “an amino acid-based medical food and infant formula suitable for infants and children who cannot tolerate milk, soy, or protein hydrolysate formulas.” That will get us through until we get the test results and can get the formula using our insurance instead of paying for it out of pocket. Considering one 14 oz. can is $35.00 that would be a good thing! I’m really nervous about Kaitlin having those tests done but I also don’t want her to keep suffering. I also realize that you’re talking about two problems that can get way out of hand if they’re not treated. I have been advised to have a bag packed so that if they keep her overnight for observation after the biopsy I can stay with her. Apparantly he often does that with his really young patients.

We are praying that this is a case of unusually severe food allergy and not HD. One thing the dr. told us is that children with HD will poop rather explosively when a rectal exam is done. He seems to think that the fact that Kaitlin does not poop when a rectal exam is done is indicative that she probably does not have HD. Is he right about that? Do children with HD have an explosive (his word, not mine) bowel movement when a rectal exam is done?

Thanks so much for the information and help you’ve provided. I appreciate it!

I did not have to deal with any of the formula issues with my son, so I have no feedback for you about that. My son was breastfed. I can tell you that he never had explosive bowel movements after rectal exams though. So, just because your child does not have explosive bowel movements after rectal exams, doesn’t mean he/she doesn’t have HD.