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    C3 and C4

    Anyone have low C3 and C4? I'm worried we're on the verge of another diagnosis. IgG is the lowest it's ever been since being on infusions (and we tested 3 days after she infused). IgM is now low too. Super bummed.
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    May Thurner Anatomy

    Anyone ever had a finding of May Thurner Anatomy? A has had some significant issues with leg pain, bulging veins, and poor circulation...and in digging through old medical records an MRA noted May Thurner Anatomy. Just wondering if anyone has any experience with this.
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    Not sure what to think. A's ALT and AST have been consistently elevated for over a year. I honestly wasn't worried. Just figured it was her new normal. The Immunologist called last week, concerned because her AST was 60 (norm is 10-30). Had us repeat labs....51. He hasn't called back to discuss...
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    I know CRP is an inflammatory marker. Just don't know if I should be concerned about A's results or not. Her CRP was 5.6 the morning before her appendectomy. We are one month post surgery and it is 14.3. Could this be normal after a surgery or is there something going on?
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    Update for A

    It has been a rough few weeks. We saw the Urologist and ruled out any urinary issues. Somehow the 5 UTIs she was diagnosed with at Urgent Care weren't actually UTIs. Not even sure how that happens. We're going to look at possible GI causes for the pelvic pain, nausea/vomiting. If anyone has any...
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    A was diagnosed with a suspected UTI Wednesday evening. Urinalysis was "suspicious" and obviously the culture takes days. She was started on Bactrim. Thursday morning she started having tremors which are constant and range from mild to severe, even while asleep. Benadryl and Solu-Cortef had no...
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    A is 12 - Update!

    I can't believe A is 12! She's funny, competitive, hard working, talented, artistic, and beautiful. I love that girl! We had her Hematology appointment a few weeks ago and I've been very discouraged. He wants to "watch and wait" which is what we keep hearing. He tested for CMV and Mono and...
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    We have a Treatment Plan!

    We saw the GI in Atlanta this week and thought he was great - very knowledgeable and really educated us about Primary Intestinal Lymphangiectasia. He explained that A does not digest fat properly, so every time she eats foods high in fat she's causing damage to her intestines. We're going to try...
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    We have a diagnosis! (And I'm not crazy!)

    Doctors have a way of making you feel crazy when you take your child in repeatedly, stating how sick she is, but they can't figure out what's wrong. Well today we got a "real diagnosis" and validation that I'm not crazy. A has been diagnosed with Intestinal Lymphangiectasia. This is the cause...
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    Blood Pressure

    A is having her infusion and her BP seems pretty low to me. I realize the medication can drop it some, but wondering how low is too low. Hers was 78/45 then 75/48. The nurse says since she feels fine there's no need to worry. Just curious what your experiences have been....
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    GI Appointment Update

    We met with the GI this week and it was a good appointment. A has been sick a lot the past 2 months and is having 1-2 stooling accidents/week. Not really acceptable, but not the worst she's ever been. Her height (9th %ile) and weight (6th %ile) are good. We did an x-ray to check for constipation...
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    Focal Intestinal Lymphangiectasia

    I mentioned in my other thread that A's biopsy report stated "small intestinal mucosa with focal lymphangiectasia". I seriously cannot even pronounce that, lol. I wanted to start a new thread with the hope that someone somewhere who has experience with this will chime in. CarolinAlaska I also...
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    Ph probe

    A is scheduled for an EGD and ph probe in the morning. The EGD is a breeze, but she's worried about the probe. She specifically wants to know if it will be painful or make her gag. Anyone?
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    Financial Advice

    I received a call from our hospital today requesting that all past debt (around $7000) be paid before A's procedure next week. They also want our portion of the procedure up front (around $900). I wish this was feasible but it just isn't. I told them I could pay our portion of the procedure...
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    We have an ear thermometer but I doubt its reliability. Anyone have one they recommend? I don't want to spend a fortune but it'd be nice to know for sure if A has a fever.
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    Good Appointment!

    A had her Immunology appointment yesterday, and I must say that I truly love our new doctor! She is dedicated to finding a more precise diagnosis for A and has more testing planned (pending insurance approval). She said a diagnosis of "hypogammaglobulinemia" is comparable to a diagnosis of...
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    I figured I would start a new thread in case anyone has an upcoming angiogram so they would know what to expect. That, and I'm sitting here anxious to see my baby! The interventional radiology room is part of the surgery center at the hospital so we knew what to expect as far as check-in. She...
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    Yes, I know it is normal to poop whole corn kernels. But how long after eating corn should you still be pooping kernels? A ate corn on Mother's Day and 2 1/2 weeks later she's still pooping corn. She called me in tonight in a moment of panic over red poo, then remembered she had watermelon this...
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    Second Opinion Immunology Appointment

    We met with our second opinion Immunologist today and I really liked her. She's very matter-of-fact and really seems to know her stuff. Unfortunately our hospital sent A's records via snail mail and the doctor didn't have time to review things very thoroughly. However, she took a very...
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    Had A's 504 update today. Basically just changed her diagnosis and added that I am to be notified of any outbreaks of flu, chickenpox, measles, strep, etc. A is doing well in school so no real concerns. Then we had her GI appointment. She's lost 2 lbs since her last appointment in October. The...