Whirlwind of an Appointment....
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Thread: Whirlwind of an Appointment....

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    Default Whirlwind of an Appointment....

    Alana had her GI follow-up yesterday afternoon. Back in August she had a million labs and stool samples done and though the nurse called when the results came in (they were all negative) we were still supposed to go back and follow-up with the doctor. I assumed it would be a "yep, everything is fine...have a good day" kind of appointment but I was wrong.

    Because all of the labs came back normal the doctor was actually more concerned. She said she was expecting to see some sort of vitamin deficiency or at the very least an abnormally high metabolism. She actually said that Alana's chart was haunting her and she really felt that something was wrong but the tests just weren't proving it. Before this appointment I had finally made peace with the fact that she was abnormally small, but the things she was telling me had my stomach churning all over again. Basically she told me that we don't have a small family (I'm 5'9 and hubby is 6'3), Alana eats a ton of high-calorie foods, and there has to be some reason that she isn't growing or gaining weight. According to their scales she has lost weight since her first appointment there almost two years ago. It was then that she came out with the "failure to thrive" diagnosis. That hurt. I can't really explain it but that is so crushing to hear as a parent. Alana was diagnosed as FTT as an infant and now it seems we're back to square one. She also hinted that her hair loss could be related to the FTT and not ringworm at all (we still don't have those results back yet).

    She explained that there are 2 more tests she'd like to do. If these come back negative she wants to watch Alana very carefully and advised us to see an endocrinologist as well. The first was a Prometheus Lab to test for IBD. If you've never had a Prometheus Lab that is an interesting experience, lol. I was given a box that I had to sign for because the shipping alone was $70. Then I had to play phone tag between my poor hubby who was at work, the insurance company (they won't talk to me because I am not on the policy), and Prometheus. I had to make sure they would cover this lab because it is ridiculously expensive. So while this is going on I'm sitting outside the hospital on a bench with this goofy overpriced box. Finally I got the word that it was approved and we headed upstairs to have the blood drawn. Alana was a trooper (and behaves really well when bribed! lol) and didn't even cry. At this point though we're all tired and cranky and head outside to the parking garage but there are roaring sirens, tons of smoke, and firefighters all geared up and running toward the garage. Apparently a car was on fire in the garage and we had to wait about 45 minutes until they cleared the garage and we could leave. Always expect the unexpected, lol.

    The other test Alana will have done is a sweat test next Tuesday. This is to rule out cystic fibrosis. She's had the genetic testing for it done but apparently that test only picks up the most common mutations and the sweat test is the standard for diagnosing. To be completely honest, the possibility of CF scares me to death. That's all I care to say about that.

    So anyway, not what I expected for this appointment. I'm terrified but optimistic. Alana is still struggling with asthma issues daily but I'm waiting to get the results of these tests before hauling her back to the Pulmo. On a positive note, Madison is doing great and is learning to use her inhaler without the spacer, lol. She's beyond proud!

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    I'm sorry things didn't go as well as you'd hoped. I hope they can figure out what's going on and that it's not anything really serious. I'm glad Madison is doing well.

    Deb ................. DH Norm
    DS Caleb, 13 ...... DS Patrick, 12
    DS Isaiah, 8 ......... DS Thomas, 7

    DD Cherish, 6....... DD Emily, 7\18\13 ....... Ripple, 17
    William, 14 weeks, 4/11/12

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    Posting Addict wishing4agirl's Avatar
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    Wow is all I have to say. Those kind of appt days are exhausting mentally and physically. It is awesome that he is staying on top of things. I really wish I could find drs like that, but they seem to drop the ball as if they don't care all the while saying "yep somethings not right". Sorry had to go off on my own rant. Prayers the CF test is negative because yeah that is scary.

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    Angela, this doctor is very thorough and I trust her. She doesn't want to worry me needlessly but she gently let me know that she thinks there is an underlying cause for the FTT. I've always thought in the back of my mind that there was some mysterious thing plaguing her but no one can seem to find much besides asthma and allergies. Even the Pedi, whom I love, now chalks everything up to "Alana being different." Even her asthma is atypical. She rarely wheezes, but instead gets this unrelenting cough that produces massive amounts of mucous, sometimes bloody. The albuterol now gives her little relief and somehow she still has a stuffy nose despite being on 2 nasal sprays. Her Pulmo doesn't seem overly concerned because she isn't wheezing. Nevermind that she's frequently short of breath and coughing hysterically. Some days her face is ghostly pale with these awful black and purple rings around her eyes. She's so tiny that even a size 5 "super skinny" skinny jeans were too big in the waist and she's almost 7. She wears size 2T/3T underwear! Now I had a small rant of my own but I feel better! lol

    Anyway, I'm thankful for this doctor even if she turns out to be wrong. Better to rule things out than let something serious go undiagnosed. She seems to genuinely care about Alana and I'm grateful we found her.

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    Posting Addict wishing4agirl's Avatar
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    Quote Originally Posted by Alana*sMommy View Post
    Some days her face is ghostly pale with these awful black and purple rings around her eyes.
    The coughing up blood would seriously concern me. And the above describes Eli EXACTLY! I for the life of me can't figure out what they are from. I've thought of the typical allergies, etc. but why would they just start all of a sudden when he's had allergies forever?

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    She sounds like Isaiah. He's back up to 37 lb. now, and he's 7 years old. He can only wear pants if they have super stretchy elastic all the way around, and even some of them fall down on him. Has her doctor considered putting her on 1.5 Pediasure? Have you tried bulking up the protein to see if that helps her gain weight? Do you think she could be hypoglycemic? I had reactive hypoglycemia for awhile, and the more carbs I took in, the more weight I lost.

    Deb ................. DH Norm
    DS Caleb, 13 ...... DS Patrick, 12
    DS Isaiah, 8 ......... DS Thomas, 7

    DD Cherish, 6....... DD Emily, 7\18\13 ....... Ripple, 17
    William, 14 weeks, 4/11/12

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    Mega Poster betsy0040's Avatar
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    I'm so sorry but I hope these tests bring you some results, even if it's not the result you want. I can imagine it must be frustrating. I will be thinking of you on Tuesday.
    Elizabeth & Jamie - 7/17/2004
    Joshua - 11/23/2008, breastfed for 17 months!



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    We've tried Pediasure and Boost, neither made a difference. We've added extra butter and oils to her foods, increased her snacks, and given her larger portions. We've done high calorie, high protein, and high fat. Despite all of that she somehow manages to lose weight. It is baffling because some days she eats more than I do!

    Thank you for all of the kind words, prayers, and positive thoughts. I would love some answers, but at the same time these particular answers could be very dark and scary. Regardless, we're going to enjoy Thanksgiving and take one day at a time.

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    Mega Poster betsy0040's Avatar
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    I won't say I know what I'm talking about but I've watched a few episodes of Mystery Diagnosis and other medical shows, could she have some kind of disorder where she isn't able to absorb the nutrients/fat/calories? I don't know of any per se but I do know they exist, I'm sure I saw a case like that on one of these shows. Does it feel like you are your own case of Mystery Diagnosis? It sounds like it.
    Elizabeth & Jamie - 7/17/2004
    Joshua - 11/23/2008, breastfed for 17 months!



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    Does that show still come on? I love that show! But yes, sometimes I feel like Alana belongs on it, lol.

    She was considered FTT as an infant but other than having terrible diarrhea she was a healthy baby. The chronic hives started right around her first birthday but oddly enough all allergy tests came back negative. The diarrhea and bloody stools have been off and on since birth but everything GI related has been normal since school started in August. The chronic cough started when she was 4 and that's when a blood test showed eosinophilia. More recent blood tests have been normal, so the high eosinophils was attributed to allergies and asthma. She also had one test show low albumin but recent tests were also normal. Her most recent allergy test showed she was allergic to molds, grass, weeds, almonds, tomatoes, and citrus. PFTs showed asthma which led to the diagnosis despite no asthma attacks (she's had 1 since) and no wheezing. And of course she's always covered in bruises. The glands behind her ears are always enlarged like hard little marbles. She has constant nasal congestion and frequent sore throats yet we're always told that her throat isn't red or swollen. The recent hair loss may be ringworm or may be something else entirely. And now she's FTT again! Oh me....oh my.....

    But.....I'm happy to report that Alana did have a good day today though. The cough seems to be gone, for now. Her energy levels improved and I was reminded how blessed we are to have her.

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