The Burgdorf Family Blog: If you're goin' to San Francisco....

Well, we finally had Harlan's "Specialist" appointment at UCSF. I wish we actually saw an FPIES specialist, though. He was a very nice young man, and I could tell, he would be very helpful if he actually knew anything more about FPIES then what he has read in some medical journal articles. It was a fear of mine that this would happen. I have discovered through this process, and watching my sister go through it with my nephew Tyler, that when your child has a rare condition (in Tyler's case, Angelman Syndrome) , you become your own expert and advocate. Our pediatric GI was incredibly receptive to everything I shared with him, and even thanked me for the new knowledge pertaining to FPIES. He was very quick to admit that he was not sure how he could help Harlan, other than to perform a scope of his intestinal tract, both upper and lower and take biopsies of both. Harlan would be given anthestia and would be completely out for the procedure which would take place in the operating room. Of course, I imediately teared up. The thought of my little boy with a tube down his throat for breathing while laying on some brightly lit table in a cold operating room scares the crap out of me. I am sure it would anyone. At this point, we are unclear as to wether we are going to go through with it. They will not really find any new discoveries, other than inflamation and vulli damage consistent with other FPIES kids. It wil not help treatment, or determine which foods he will and will not react to, it can simply lead to peace of mine that he infact displays further evidence that he was properly diagnosed (which I know, he was). I would love any advice on the matter...especially to anyone else out there that has had a scope performed on them or their children.

Another big concern I wanted addressed, was what Harlan is supposed to eat after he turns one (I can't believe how close that is). He can't drink formula forever! The doc sent in some dietitian's, who also admitted they had never seen an FPIES patient before. They did show me, and even gave me a few samples of what Harlan should switch over to at a year. It is the same enzymatically hydrolyzed formula, as his current Nutramigen, but it is "more age appropriate". It is more like a Pediasure, but it is called Peptamen Jr. To my dispair, it is NOT any cheaper than his current bank breaker formula now, it is arguably even more expense (sigh). Oh, well...not much we can do about that. I just refer to Harlan as my million dollar baby...and maybe one day, he will become a millionaire and will support his mom and dad. One can dream, anyway.

We did make the visit a family one, and to Elle's luck, Santa was visiting the hospital the day we were there. She even got a stuffed animal from him (we all know how much she needed one of those), and apparently she was very receptive to him ( I was in the room with the dietitians during this). Last year, she cried and wouldn't even attempt to sit on his lap...so I was so pleased, to know this year would be different. After the appointment, we went to Pier 39 for lunch and some sight seeing fun.