Back in December, I mentioned that we were going to Travel For Medical Care. Next Tuesday is our Big Day. We will see a new GI and a new Allergist on Tuesday, and hopefully get an appointment with the nutritionist they both use.
We picked doctors in Atlanta, mostly because it seems there are a handful of “Go-To” places for FPIES experts (CHOP in Pennsylvania, these doctors in Atlanta, and – I think – National Jewish in Denver), and we were told that the doctors in Atlanta work really cohesively as a team to offer a more blanket care management plan.
As a side bonus, the Geek’s Dad lives near Atlanta, so, visit Grandpa and avoid hotels and car rentals, too!
In anticipation of these appointments, I went through the arduous task of contacting every clinic, doctor, and hospital the kiddos have ever visited to request their medical records. It seemed wise to have a copy of their records for myself, anyway, and this just lit a fire under the task.
Want to see what the medical records for two such small boys look like?
Yeah. And Mr. Happy’s is the THICKER black notebook. The box is the double copies I had made for the new doctors; obviously, to get on the plane, I’ll be packaging those up in envelopes.
I’ve been trying to sort through exactly what I hope is done and what I hope to learn from these doctors, so I’ll lay it out here for two reasons: one, so I can keep track of this part of their story easier and two, so that in case I’ve forgotten something, one of you can leave a comment to remind me!
For Mr. Charm:
- Is there anything MORE than fructose malabsorption going on?
- Allergy test for rye and peanut, plus anything else they think might be necessary.
- Scope him/test him however necessary. I’ve been told to ask for tests for malabsorption markers like alpha1 anti-tripsyn, calprotectin, stool reducing substances, fats, etc. and inflammatory markers like leukocytes, eosinophils/neutrophils, etc. Also, I was told to ask the benefits of scoping vs. breath hydrogen tests for dissacharide deficiency.
- What does his diet need supplementation for, if anything.
- If he does need vitamin supplementation, what is a good, fructose-free vitamin we could use for him?
- Do we need stool kits, and if so, what do we look for?
For Mr. Happy:
- Is there anything MORE than FPIES and IgE to dairy going on? Rule out any overlapping conditions like EoE (eosinophilic esophagitis), for example.
- Allergy test him for anything else they think necessary.
- Scope/test for the same things I ask them to test Mr. Charm for.
- Ask for stool kits to have on hand in case of reactionary stool, and what we should test for in those instances.
- Find out which blood tests to get during a reaction (like in the ER) and get a revised ER plan/letter specific to Mr. Happy’s needs.
- Find out which labs to monitor here at home to ensure he stays in a normal range.
- Any suggestions for pain relievers we can use.
- Plan of action for food trials: what foods, in what order, and a definitive rule-book for calling safe/unsafe (i.e., seeing slow build reactions, stop and wait 3 days, then re-try or just stop altogether).
- Find out what his poop SHOULD look like!
- Ask about how to handle hospital visits (God forbid) with a child sensitive to corn (IV saline has corn-derived ingredients).
For Both Boys:
- Basically, I want to determine where they are at currently (health-wise), how to get them to the best health possible, and what to look for in case they backslide.
- I’d like to rule out the gray areas and have some definitive answers: “yes, all Mr. Happy is dealing with is FPIES and IgE to dairy”, for example.
- I’d like a game plan in place for how we move forward to keep our boys healthy and help them thrive.
I’ll be honest, I’m not looking forward to watching my boys undergo invasive medical procedures. But I’m going to fight like mad to have them done! I hate the thought of my kiddos in pain/discomfort, but this would be a temporary, short-term agony to help offset long-term, constant unpleasantness. It needs to be done.
Since we’re an airline family, I don’t know exactly when we’re flying out. Sometime this weekend; I don’t want to risk missing the appointments because we couldn’t get on the flights Monday! And I don’t know how long we’ll be gone. If the doctors DO want to do testing, and they want it done in Atlanta before we return home, well, we could be there a week or more. On the flip side, we could be flying home on Wednesday!
So, I don’t know how my posting here is going to go over the next week or so. I’ll post if I can; if not, you know where I’ll be and what I’ll be doing. (I’m a little jealous of the Geek. He gets at least 4 days alone at home – I’ve only had a few hours of alone at home time over the last 2.5 years. <though honestly I don’t know what I’d do with myself if I was at home alone anymore – shh, don’t tell the Geek!>)
Now to pack…ugh. I hate this part! You’d think I’d be better at it, what with being a Flight Attendant, and all. But packing always stresses me out.
Have a great weekend, and I hope I have wonderful news to share next week!