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Posts Tagged ‘doctor’

  1. Opposite Eating Habits

    January 5, 2012 by Michelle

    Our visit in December with the GI & nutritionist was the least painful yet. No blood work was truly a blessing. But, while she did gain weight, it’s still not enough. Then two weeks later we had a well visit and she was down two ounces, and her head shrunk. Ok, her head didn’t shrink, but the nurse at the well visit measured twice, so the last two must have been off.

    Latest stats:

    Age: 19 months
    Height: 2′ 4.75″
    Weight: 17 lb 10.2 oz
    Head Circumference: 17.76″

    Even on the WHO chart that weight puts her below the 3rd percentile line. CDC = 0.03 percentile.

    I was told not to worry about the two ounces, the holidays would have thrown off her eating and with me home from work she was nursing more, a good thing, but maybe less inclined to eat solids (true! She was attached to me more than before I went back to work some days! I think she’d save room to nurse.)

    But all these fluctuations are a reminder that the tools to measure are imperfect, too. And different scales & different people give different results. Still. Bunny’s tiny.

    Eating Schedule Changes

    So big thing from the nutritionist, eat less often. Yep.

    Anytime bunny asks for food, we give it to her. Made sense to us, give her as much food as she can take. But apparently, that may not allow her to get hungry enough to eat enough calories. Eating small amounts all day is how adults loose weight, we have to switch that to help her gain.

    So instead of eating every hour to hour-and-a-half, we’re spacing out more like 2 hours. 3 snacks & 3 meals. Still a lot of eating.

    We’re also trying some new things like yogurt and fruit smoothies (with flaxseed oil whenever I get my act together and remember to buy it.) Plus adding whip cream or cream cheese to her fruit since she’ll eat tons of fruit & the fruit has fiber. (Also still supplementing with fiber.)

    All in all, we’re still just trying to up calories and keep her from filling up on water.

    The Scary Part – Tests

    So the GI’s main thing, more tests. Sweat test to rule out cystic fibrosis (we go tomorrow) and lower colonoscopy/upper endoscopy with biopsy to test for celiac (since blood work couldn’t tell us.)

    I’m a little freaked. The sweat test is the “easy” one. They literally collect her sweat, but they have to stimulate her arms to get it, which involves attaching something to her arms. I don’t quite get all the details, but not looking forward to it.

    Colonoscopy/endoscopy is supposedly quick, but they put her out. The idea of my little girl unconscious like that, scary. That’s why I’m getting the sweat test first.

    Language Explosion

    The cherry on top of all this. Developmentally she’s still ahead of the curve. She’s got crazy amount of words and using 2-3 word sentences sometimes. She can handle directions for 3 consecutive tasks. She’s mastering puzzles. And so much more. But the funniest part is definitely the language.

    So while other kids may outpace her in physical growth, she’s working hard at growing that little brain.


  2. 3 Specialists, But Few Answers

    December 15, 2011 by Michelle

    In the 2-and-a-half months since I’ve written, we’ve had visits with 3 specialists — gastroenterologist, nutritionist, and endocrinologist.

    My delay in writing started after the first two, GI & nutrition, because I felt overwhelmed by the visits. I walked in feeling like I was nearing the end, just a few people to say, “Yep all tests look fine, she’s just small.” But it was the beginning of more stress. We did these visits back to back in what ended up being close to 7 hours between travel, visits, blood drawing, & lunch with no nap. Bunny passed out in the car before I left the parking garage. We both napped about 3 hours once we got home.

    Now, on the eve of follow up appointments with GI and nutritionist, I’m finally getting my thoughts reorganized in a blog post.

    Here’s the quick rundown:

    Early October: GI & Nutrition

    GI actually uses the term “failure to thrive” my heart sinks. Says we have to try to get her caught up by age 3 because it can affect the rest of her life. Good news, head circumference is good, so her brain is growing well. Prescribes a medicine for acid reflux in case that’s keeping her from eating. Orders lots of blood work & refers me to endocrinologist.

    Nutritionist brings to light the fact that bunny being constipated some days could be a huge issue. That tiny tummy only holds so much. If she’s constipated, no room for food & she won’t eat. (this makes much more sense then the “maybe it’s GERD” from the GI, at least to me.) We get tips to add about 30-40 more calories a day, meal time tips, & told to give her a fiber supplement. She also reinforces something I read online, that breast milk will help with weight gain more than whole cows milk. (Though cows milk is ok, too, breast milk is better.) So glad I’m still nursing 2-3 times a day.

    We decided not to fill the acid reflux prescription, but focus instead on the fiber. With no other symptoms but low weight to go on, we can’t bring ourselves to give her medicine.

    Blood Test Results #1

    I was told to call for results, that they wouldn’t call me. 2-3 weeks later when I still had neglected to call, the nurse called and left me a message. Another 2-3 weeks later I finally call back. Mom fail.

    Results were mostly ok. They still can’t read the celiac panel, but nutrition looks good–except Vitamin D is in a gray area. It’s in the normal range, but the low end of the normal range.

    We increase Vitamin D supplement. I feel guilty about the 4-5 weeks she could have been getting Vitamin D if I had gotten my act together & called a few days after the test. Nurse says if it had been a major worry, they would have called me back more. I still feel guilty.

    Late November: Endocrinologist

    I was feeling okay going into this one. I figure she must have grown since her clothes are looking short in the arms & legs.

    We measure. More than an inch taller! Yippee! She’s lost weight. Only a few ounces, but still, how could she be taller and even skinnier than before? She should have gained, so in my mind it’s almost like more of a loss. The weight for height curve is looking even worse. I haven’t even met with the doctor yet, and I’m stressed again.

    Once he does come in, he says the weight looks like more of an issue than the height. (Height would more likely indicate endocrine related issue, weight, GI.) Also, he notices her soft spot hasn’t really closed in as much as expected at this age, could be delayed related to rest of her growth delay. (My brain flips back to Vitamin D guilt.) He orders blood tests but warns me that growth hormone is hard to test with blood work. There are 2 factors they can test with blood. If both are low, most likely growth hormone deficiency. If one is low and one normal, could be growth hormone could be caloric/nutrition deficiency. Essentially, inconclusive. He tells me it’s obvious she has a good appetite (she nursed almost the entire visit.)

    Guess how the blood work comes back. Yep. Inconclusive option, could be growth hormone, could be nutrition. There’s another more involved test, but it doesn’t sound fun, and he doesn’t think it’s worth it yet. We’ll keep tracking height and seeing other docs, and unless something major happens, we don’t go back for another 6 months.

    Tomorrow: GI & Nutrition Follow Up

    Please have gained weight in the last 3 weeks. Please. Please.

    At one point in the last three weeks I coated blueberries in olive oil and added a touch of whip cream just to increase calories on a food I know she likes. We don’t generally do dessert, but we give her ice cream one night just to sneak in a few more calories. I’m sure this is the wrong way to do it but I’m feeling desperate.

    I’ll know more tomorrow. I doubt I’ll know much, but at least I’ll know her weight.


  3. 15 Months – Still Small & Growing

    September 27, 2011 by Michelle

    Aside from the shots, the 15 month checkup last Friday was easy compared to our last few. Our pediatrician said she’s done all the testing she can and thinks it’s probably genetics (though we still have the specialist appointments next week) so there isn’t a lot left to say.

    Latest Stats

    Height: 28 inches
    1.49 percentile CDC
    1 percentile WHO

    Weight: 17 lbs. 2.4 oz.
    0.14 percentile CDC
    3 percentile WHO

    The printouts from the doctor give me exact percentiles to 100th of a percent on CDC and a plotted chart for WHO. I have to look up numbers on WHO charts so they aren’t as exact.

    The height is a huge jump! She’d pretty much fallen off the chart before. I knew she must have grown since she recently stopped walking under the dining room table after hitting her head constantly.

    Weight is right on track. At least on the WHO charts, she’s stayed right along that 3rd percentile line most of her life.

    So the numbers are in and still low. Until next week, there’s nothing more to do.

    Big Smart Head

    Despite her small stature, this little kid has got a good head on her shoulders. Head circumference is 40th percentile; a healthy size head, without being huge. All the better for that big little brain that has her developmentally hitting milestones they don’t look for until 18-24 months. Dancing, pointing out her nose, ears, and other body parts, and her vocabulary and beginning to string words together occasionally, to name just a few.

    In fact, she’s always been ahead of the curve developmentally. The only real challenges have been skills affected by height. Stairs took a bit long to master, for example. When her peers started climbing down, she still had to jump down each step.

    As long as I have to deal with the extra doctors appointments for her size, I’ll take the pleasure of hearing them tell me my child is quite smart.


  4. Blood Tests Inconclusive – More Tests to Come

    August 11, 2011 by Michelle

    After 3 phone calls in 5 days from my pediatrician (love that she’s giving us this much attention) I know very little. I’ve been up and down as she’s told us the results are mostly good but after consulting with others given us more things we need to test.

    Thyroid, blood count, and liver function were all good. However, her Celiac panel and Metobolic panel each had something that we’ll have to look into further.

    Disclaimer: The following is a summary as I understood it when it was explained to me and is unique to our situation. If you are in a similar situation, please speak with your own doctor.

    Celiac Panel – Low IGA

    The baseline IGA level (a type of antibody) was on the low side which apparently makes it hard to interpret the rest of the panel. According to the pediatrician, children with low IGA usually also have other symptoms such as chronic ear infections, which Baby Bunny doesn’t have. So it could be a fluke, but we’ll have to run this blood test again in a few months. Celiac faqs.

    Metabolic Panel – Low CO2

    Her CO2 levels were a little below the normal range. Apparently low CO2 could indicate Renal Tubular Acidosis (RTA), a disease of the kidneys. We’re doing a urine test to rule out this uncommon cause of slow growth.

    GI & Nutrition Consult in a Month

    With an inconclusive Metabolic panel, the pediatrician went ahead and ordered a Gastrointestinal and Nutrition consult. Those were difficult to schedule, but after half-an-hour on the phone I managed to get them back-to-back on a Friday morning in September. I’m grateful to have them scheduled finally so I don’t have to think about them for a while.

    I’ve included links for more information on both of the possible diseases, but I have not looked into either extensively because it is not worth it! I’m doing pretty well not freaking out, so why worry myself with details of diseases she might not have? The tests can rule things out, eventually leaving what I believe in my heart to be true, she’s perfectly fine.


  5. Doctor Orders Tests – Daddy Gets the Dishes

    July 23, 2011 by Michelle

    16 lbs. 6.4oz – I win the bet and am dishes free for the weekend.

    Of course, as predicted, our pediatrician went ahead and ordered a round of blood tests to test for Celiac, thyroid conditions, kidney function, and some other things I don’t remember. (Which is good so I don’t obsess over it.) Her reasoning, rule out the medical causes before we can say she’s just a petite baby and will catch up.

    But the reason for these tests is not so much weight, she told me, but the height, which has dropped off the curve a bit more, and isn’t in line statistically with my and my husbands adult heights.

    Personally, I have to say I’m not as concerned about the height either, just watching my Baby Bunny over the last year, she tends to get pudgy, stretch, pudgy, stretch, so depending on when the doctors visits land, the curve could be way off.

    WHO Growth Charts Drastically Change The Picture

    One HUGE revelation at this visit, is that her weight is not quite as dire as we thought. The lactation consultant at the last breastfeeding support group I attended tipped me off that the CHOP Care Network had recently added the World Health Organization (WHO) growth charts to their computer system, however, the default is still the US Centers for Disease Control (CDC) growth charts. (Read more about pediatric growth charts.)

    So, when we plotted her Friday, she was 0.21 percentile, a drop from the 0.35 percentile on the CDC charts. Then, at the end of the visit, I remembered and asked about the WHO chart – which is much more accurate for breastfeed babies, with a click of a button, we went from a view of dropping off the chart, to a perfect 3rd percentile curve on weight. Phew. Where were these charts 6 months ago?

    Though as I mentioned above, even on the WHO charts, there is a length drop, hence the testing. If I can find the time, I plan to download the software from WHO to do some of my own plotting.

    Other Notes from this Visit

    At the last visit, Tom (hubby) accidentally left every weight check slip from support groups I had saved for her baby book. Turns out, the pediatrician had saved them! She’s a mom, too, and figured I’d want them. Hooray!

    The pediatrician is NOT concerned about breastfeeding as a problem. She told me her 2-year-old still breastfeeds and is a beast. So grateful for a pro-breastfeeding doc.

    If the blood tests come back normal, next steps are GI and nutrition consult. I’d actually love a nutrition consult anyway, but apparently they are tough to get without the blood work and a GI consult first.

    Docs and nurses agree, watching my tiny tot walk around the office is just plain adorable. 🙂

    Dishes, Dishes, Dishes

    So far Tom’s honoring the bet and doing the dishes. Of course last night he got off easy. We ordered pizza because it was too darn hot to turn on the oven. Tonight & tomorrow, I need to come up with some complex, multi-dish meals.