Update to allergist visit
webMistress0609
member
I'm going to start this post with a positive. I love the allergist we see. He spends a lot of time talking through symptoms, causes, solutions, other solutions besides those, what the best first course of action then 2nd then 3rd is, etc. etc. He doesn't just ASSUME anything or talk down to us or try to say it's our fault b/c we night nurse & cosleep.
Most importantly he gave me hope today that there is light at the end of the tunnel even though all news isn't good.
I've been really worried about Ari's increasing number of allergies - we're adding to the list, not taking away, & he's almost a year old. Doc says that's actually not horrible, a lot of kids with multiple allergies will have them come & go over the first 4-5 years of life & that's normal.
Second, he thinks there's a strong possibility that Ari has Eosinophilic Esophagitis (EE) & not reflux. I'm still wrapping my brain around what that is but to put as simply as I can w/ my limited understanding, it means he has inflammation & over concentration of Eosinophilic white blood cells in his digestive system (esophagus particularly). The symptoms are very similar to GERD but are not relieved with standard GERD treatment & have a food allergy component. Increasing food sensitivity & delayed reactions that are hard to pinpoint are common symptoms too. He can't make that dx, only a GI can, & we still have not heard of a cancellation. We're slotted for late Sept still. Good news is he has a good relationship with our GI so they can work together - our GI told me she regularly refers to him b/c he's the only one around who does the atopic patch testing. Unfortunately dx'ing EE means endoscopy which is more invasive testing & I'm wanting to save Ari from more tests. But if he has to have it then we'll deal with it.
Third, we discussed his recent reactions & were able to have more skin patches placed today. Normally we would've had to wait till at least next week but he wanted to get it done ASAP since we're dosing w/ Benedryl left & right, so he had them prep everything while we waited. Since the prick testing wasn't helpful at all last time we totally skipped it. We had 11 patches placed - he basically tested several things that we suspect could be it & even a few that aren't normally allergenic but that we eat often, like apples. He did not have a patch for coconut so we'll have to food challenge that, but he said to hold off till we see our results Friday.
I asked about the food additive in the hummus & he said its more likely to be the chickpeas. I thought they weren't allergenic but turns out they are a soy cousin, if you will, since they are also a legume. This makes sense b/c his reaction was similar to soy - screaming and/or medium level whining all day & night, bright red hives all over, diarrhea. He's been eating hummus & I've been eating that plus chickpeas for quite awhile with no issues, but that's always been how it is - he's great, then he's not.
Patches will be removed Thursday, checked Friday. Hopefully we don't have too many positives, but hopefully we also get some freaking answers.
Re: Update to allergist visit
awww poor you and poor ari
while I'm sure the (possible) new diagnosis must be scary, I'm sure it would be nice to be treating something that HELPS rather than chasing your tail around the reflux thing. What is the treatment for EE?
Do you need another sling to come visit and cheer you up? LOL
I hope they can get you in earlier for the GI scan, I'll keep my fingers crossed for you.
I am sure this is all so unnerving, but think about how much more you DO know now, and how you'll be able to save Ari lots of misery by getting a good diagnosis early on. I have a chronic ailment that wasn't diagnosed until I was 19 years old. I could have had a much happier adolescence if I had been aware of what was wrong years before.
And FWIW, I have a good friend whose son is allergic to chick peas as well. The kicker is that she is Middle Eastern and throws chick peas into just about every dish she cooks. She was beside herself when she realized her son was allergic.
Ugh! I had just responded in the other thread - that grad I really loved sold before I could reply to her counter offer! I'm so pissed! It was so beautiful. Oh well, I'll keep looking. There's a sky blue out there too but it's long - 81". My SBP is 78" & hits me at the knee. I'm not even sure I should try a grad but I've got the bug now.
I agree with chasing tails though. The treatment is either eliminating all foods that he's allergic too (which means we'll have to be super vigilant about new allergies that crop up & not listen when docs blame teething when there are no effing teeth & sh!t like that) or a straight diet of only Neocate, no solids or BM at all, which is not really ideal for a toddler, nor for a kid who is used to solids & BM. Neocate tastes like sh!t according to the GI doc we saw & lots of older kids won't take it so they have to have a feeding tube. Fvck that, I'll live on chicken & rice before I do that. I'm also not into shelling out 300-400 a month for formula. Just sayin'.
if only you liked pink! LOL
Yeah I'm Jewish, so chickpeas are a staple here too. DH isn't but loves Jewish & Middle Eastern food & it's fairly easy to do allergen free. Or so we thought...
I don't blame you. Hell, you've given up so much already and come this far... DD refused to drink Alimentium when we started thinking she had a dairy allergy- I wasn't planning on pumping at work, and was going to supplement with formula, but she wouldn't drink it.
I've been following your story as a lurker, but since I've decided to come out of my lurkdome and start posting more I just wanted to say that you amaze me and Ari is incredibly lucky to have such an awesome mom.
I know too many people who would just take the first "answer" they got and stop searching for a real solution. I hope you find a solution soon and have something positive come out of this whole experience
.
You are amazing.
I'm so sorry.
I keep hoping someone will cancel with the GI for you, poor little Ari needs it.
Lots of hugs!
Thank you. I just want every day to be a good day for my baby. He can be so happy one day & then another we're just keeping him from being inconsolable.
Not sure. We won't know until we get in. From my research last night, if there is significant improvement with dietary changes, some GIs won't scope b/c it's fairly invasive. And if there are no symptoms the tests can be inconclusive. But this is just reading on the internet, so who knows. I hope he doesn't have to have the test.
Good luck. I'm basically living on chicken and rice right now while we try to diagnose all of DS's intolerances. DS seems to have a severe soy intolerance and I avoid all legumes -- all beans, peas, green beans, chickpeas, peanuts (family history anyway), lentils, etc. It's amazing as I do more research about soy and discover that it is in EVERYTHING, including some of the tea I was drinking. It's awful. I admire your dedication. I hope you get some answers soon and see some relief.