Consultation w/ Dr. H

After e-maling back and forth with Dr. Harwood, I made an appointment to discuss things further.  I had the consultation today to address some of the concerns and get the ABQ GI appointments rolling since they won't call me back. The med techs were sad that I didn't bring Pacen (It was right during his lunch time at daycare) They were excited when they pulled his file for the day that he was going to be coming in haha! Here's how the consultation went...

Dr. H wants to do more Cystic Fibrosis testing just to be 100% sure that it is ruled out. Most CF kids have respiratory issues, and there are a very very very few that have only GI issues, he said the sweat test was supposed to be done when he was in the hospital in December, but it never was at all and the GI was supposed to order it. It is just a little electrode that sits on his arm and collects sweat over the course of 1-2 hours, non invasive and outpatient. Easy Peasy. Let's add another trip to El Paso.

Next, he also wants to get the biopsies taken and feels that Hirschsprung's Disease is still on the table because the Barium Enema isn't the way to diagnose it. He feels it is a very likely issue, but also the only way to fix it is surgery. He says if HD is what the biopsies show, then it will be a small section of his colon that needs removed, even if it is only 1-2cm in length, and that will be a complete fix to his constipation issues. Our next appointment in El Paso with the GI is 18 Oct. You can read more about Hirschsprung's Disease HERE.

It is probably not an allergy OR malabsorption since he does not have diarrhea and other side effects that both would show, plus his weight is awesome!

The special needs program called Exceptional Family Member Program (EFMP) takes about 6 weeks to be approved but sometimes sooner if the case allows. I applied today. And then we can be reimbursed for the 2400 miles of travel and missed meals that we've already paid for ourselves. Hopefully we will be paid out by the end of the year.

He has no explanation for the poop cycles that P has going from applesauce, to play dough to diarrhea to nothing to play dough when his med dosage is consistent. It might just take the tweaking of dose, but as long as he is comfortable then we are going to leave it for now. 

Dr.H gave me a big hug before I left, he is really rootin for P to get better and be off all of the medication.

And we got a note for P for daycare, he has reacted to melons 3 times now with hives and a rash. Like we needed something else to add to his med file?

That is all I can think of off the top of my head, I might think of more later that we talked about, but these were the high points.