Whirlwind of an Appointment....

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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.

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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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"Alana*sMommy" wrote:

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.

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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.

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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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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.

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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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Yes, they're still on although I have not seen a new episode in a while. It sounds like the doctor is very thorough so that's good. I hope you get some news out of these tests in one way or another.

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*hugs* about all I can do for you. I too hope it's not CF. Although my nephew was diagnosed with it at 9 due to polyps in the nose -- he displayed no other symptoms. They put him on some meds and now at 13 he's finally more his age's size and a quarterback of his football team. CF research has come a long way. Most assume it's a lung issue -- it's actually pancreatic.

I wait anxiously with you to see what the tests come up with. Smile

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Poor baby.....she's sick again. Her ears are plugged up and she says they ache and she is saying her eyes hurt again. The eye thing I haven't quite figured out unless it is a sinus headache of some sort. She also says her chest hurts and has started coughing again. I'm just sad for her and wish I could do more to make her feel better.

Also, while having a BM today she started screaming out that her bottom hurt. She says it feels like she has to go but nothing comes out and it hurts her. I'm assuming she's constipated? This is definitely new for her because she tends to have the opposite problem. Any suggestions of how I can help her and make her more comfortable?

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I know there's a neck muscle that can cause a headache behind the eye. Do you think that could be it? Maybe try a heating pad on the neck and/or a gentle neck massage?

For constipation, prune juice, grape juice, or dried fruits (prunes, apricots, etc.) and plenty of water.

No suggestions for the coughing, but I hope she feels better soon. Poor girl.

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First round of good news - the sweat test came back negative for CF! Obviously I'm super relieved but at the same time very confused. I'm not sure we'll ever discover exactly "what's wrong" with her, but I'm thankful it isn't this. Still waiting to hear back about the lab test and still don't have the ringworm results either (that one is just getting annoying....Friday will be 6 weeks!).

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What a mystery, though I'm glad it's not CF.

While on chemo meds, and anti-nausea meds (which both make a person constipated) our doctor perscribed Miralax. It's over the counter. We use it daily until he's regular again (which for him is every other day) and then move it to occassionally when he hasn't pooped more than 2 days in a row. We mix it in all kinds of drinks and my son doesn't mind it (he says it doesn't taste like anything)

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Got more news today, although I'm not sure it was the news I was hoping for. Alana's Prometheus Lab came back "positive for inflammation indicative of Crohn's Disease." My head isn't exactly functioning properly right now because I wasn't expecting this. I just got off the phone with the Nurse Practitioner and scheduled an EGD/Colonoscopy for Jan 10th with a pre-op on Jan 6th. The pre-op is necessary because of her reaction to anesthesia the last time she had this procedure. If anyone has any encouraging words or advice I'd appreciate it. I'll check in later but I have a headache and it is family night. Biggrin

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A positive test? I have followed Alana's story for many years. Of all the many things that she could have, Crohn's disease can be managed. If that is what she has, this could seriously help Alana, her growth, her nutrition, and her general health.

I know several people who have been diagnosed with Corhn's disease. All of them have found that alternative therapies have helped them more than traditional Western medicine, not to mention that they have fewer side effects.

I hope that this is the answer. There has been enough messing around and mystery. Answers of this kind will help Alana move forward and be the happy little girl we all know she is.

There is a web page and organization for children with IBD that you could contact here: http://www.reachoutforyouth.org/living-with-ibd.html

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After having some time to think about the possibility of Crohn's and what this means for her I'm scared to death but hopeful. It is nice to finally have an answer because I was starting to think we'd never find one. Once she has the scope to determine the extent of the disease a treatment plan can be discussed. Her doctor is extremely thorough (praise God!) and I'm confident she'll treat the disease aggressively in order to get Alana back on the right track. We've decided not to tell Alana anything until after Christmas. I want her to get through the holidays with a happy heart and no worries.

I do know a handful of people with Crohn's, all diagnosed as adults, and all have experienced different levels of the disease. I'm not sure what to expect with Alana but I do feel like we got our answer just in time. She's really becoming easily fatigued these days and doesn't enjoy going out and doing things that she used to. She doesn't even get excited about dance anymore because she just tires out too easily. It just isn't like her and I miss her bouncing off the walls, lol.

Anyway, I think the shock of hearing "positive" is finally starting to wear off and I'm ready to deal with what the future holds.

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I have to agree with Sarah, I'm glad you finally have an answer and I hope that now you can begin to move forward in dealing with it and treating her. I'm sorry it wasn't the answer you were hoping but it is an answer and you can take steps to help her get better. At least it's not so rare that you don't know what to do.

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The Pedi called yesterday. Alana doesn't have ringworm. Her bald spots have filled in but her hair is still thinning. For now we'll chalk it up to FTT and Crohn's.

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That's another relief...

If it is Crohn's, then hair should come back quickly once she gets some treatment.. and you might be in for a growth spurt!

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Poor Alana is really starting to realize that there is something really wrong with her and I just wish I could hold her and make it all better. About a week ago she started burping, like all the time. At first she thought it was rather amusing but then the burps started becoming painful and we realized she was refluxing. Last night she couldn't get through dinner without burping and gagging continuously and finally vomited.

This morning she is crying that her belly hurts and doesn't want to go to school (a sure sign that she doesn't feel well, she loves school!). If the burping and vomiting continues I'll have to call the doc. I have a feeling this is the beginning of a very long road.....

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"Alana*sMommy" wrote:

Poor Alana is really starting to realize that there is something really wrong with her and I just wish I could hold her and make it all better. About a week ago she started burping, like all the time. At first she thought it was rather amusing but then the burps started becoming painful and we realized she was refluxing. Last night she couldn't get through dinner without burping and gagging continuously and finally vomited.

This morning she is crying that her belly hurts and doesn't want to go to school (a sure sign that she doesn't feel well, she loves school!). If the burping and vomiting continues I'll have to call the doc. I have a feeling this is the beginning of a very long road.....

Ah Tanya, I feel you about the reflux thing. Ben's got it bad. His pedi thinks there's a problem with the LES (lower esophageal sphincter) being weak or not working properly and causing the constant regurgitation. It can be a long road to answers, but there are things that can help the discomfort a great deal. (((HUGS)))

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:bigarmhug: I'm so sorry you all are going through this. I'm so glad you have an answer though. I honestly don't know much about Crohn's. But I can completely relate to it being THE hardest thing in the world to watch them suffer and not be able to do anything about it. Most people don't seem to understand. Every single day at one point or another Eli complains his head, arms, legs, or some part of his body hurts. If he plays like a normal kid the headaches and dizziness get worse. Eli hates the way he feels after so now he tends to play with the kids who are slower. It usually ends up being the kids who are much younger (like Faith's age). In fact two people in the last week have made comments about his ability to keep up because it's quite obvious. I just feel horrible that there is nothing I can do.

So have you learned anything about the Crohn's yet? Are they putting her on meds? Again :bigarmhug: