Thanks everyone
Long day (aren't they always when you have a big appointment?) and just getting settled in to sort my head out about it all. First off, the Paed is AMAZING!!!!! We're not crazy, he confirmed that and he's got us on the path to get some things sorted out with E. Unfortunately he's taking a year off starting in July to specialize but he's passing his patients on to the other Paed he shares an office with and he said they are like minded and have the same views on allergies. He said she is aweseome and smarter than him so we're happy with his confidence in her. He said in cases like E, both of them would likely choose the same route of testing and treatments if possible to treat. So we're happy with that.
Within seconds of describing the weight loss E endured while bf'ing and the symptoms she exhibited then, he said right off Milk Allergy. We went through her history and she's got some big red flags that this needs to be investigated further. What's more is he confirmed that I did the right thing by going on an ED. I can't even describe how good it felt to hear that after having another Paed imply that I wasn't bf'ing properly. We went through all of her triggers and symptoms and looked at our family histories. We went over what we know for sure and there is a definite concern about wheat.
He advised against cutting ALL wheat as it hasn't been confirmed and it's such a huge thing and we're already incredibly frustrated trying to feed her. We discussed testing for Celiac and the amount of false negatives the blood test gives and the only way he said to confirm it is through a biopsy of her intestines while under GA. Where this is so invasive, and she's thriving he's leaving that up to the allergist. Dh and I aren't prepared to do anything that invasive until all other avenues to figure her out have been exhausted.
We've got a referral in to a Paediatric Allergist and should get in within a couple of months
But he's recommended us to a guy that doesn't like doing RAST blood tests because of the false negatives it gives. So it'll be a scratch test and that's what we wanted so yay
I mentioned that E was on a daily dose of antihistamines and he said right there it would discredit the results of the previous RAST we had done. He seems so knowledgable and so proactive on getting E some help. We did discuss the differing opinions that allergists have but his position is to try to get all of the info before deciding what's affecting what. He agreed that E right now has a build-up in her body and that would likely explain why she's so sensitive ATM.
She likely has asthma
He explained how to use her inhalers properly and gave us a regimen to follow as soon as she gets a sniffle to help her out when she gets a cold. He did say that her coughing could also be due to her sleep apnea but more likely an asthmatic thing.
She is also exhibiting breathing reactions to something she's exposed to and it's likely food. We're thinking wheat right now and possibly dairy though she did it tonight after having a chicken nugget that was breaded and I didn't get all of the breaded stuff off. But sometimes the breaded stuff contains milk so not 100% sure. But we did have to discuss anaphylaxis after that due to our concerns with breathing problems as a reaction to food. TBH, that part does scare me a lot. I know she doesn't have anaphylactic responses to anything she's been exposed to so far, but there are a lot of other high risk foods she's not tried yet so my imagination does wander
Thankfully the testing will shed some light on that.
We're going to do some stool samples to check for blood and one of the more common parasitic infections he's seen just to rule it out. He doesn't believe she has a parasite as this has gone on for almost two years and nobody else in the house has it, but just to be safe and it's not an invasive test he wants it run.
After her breathing episode during supper she had a bout of diarrhea and it burned her and now has a bleeding bum
. So things are still quite built up after having her on bottles all day yesterday. I'm thinking of doing meat strips for her tomorrow, rice and oatmeal with blueberries as it seems to firm things up for her. At a loss really as there are so many things that are triggering her and she's tantruming because I'm denying her food. This is where it's hard.
So we're finally heard. We have a plan to help her. It's going to take some time and we're left for the next couple of months to figure this out still but we have someone who WILL finally help us. I just need a plan to help her little body balance out so she can get some relief from these tummy upsets and the diarrhea.
Any thoughts would be greatly appreciated