Today's Dx: Failure to Thrive UPDATE pg 4 - Mothering Forums

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#1 of 71 Old 07-25-2008, 09:43 PM - Thread Starter
 
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DS2 (11mo) was diagnosed Failure to Thrive today as well as Developmental Coordination Disorder. He also has craniosynostosis for which he had surgery in February.. that is the time his growth pretty much flat lined. We will have some bloodwork done next week. I really want to figure out what is causing this. It is so scary, FFT.

Ronna
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#2 of 71 Old 07-25-2008, 10:34 PM
 
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What types of testing are being done to find out the cause? You mention bloodwork--genetics?

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#3 of 71 Old 07-25-2008, 11:00 PM - Thread Starter
 
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Here is the list of tests on the order:

Automated urinalysis
Chem 14 (Comprehensive Metabolic Panel)
Serum thyroid stimulating hormone
Plasma ammonia
Blood lactate and pyruvate
CBC with diff and platelet count

She said he cannot eat or nurse for 6 hours prior to testing.

Ronna
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#4 of 71 Old 07-25-2008, 11:42 PM
 
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I know the feeling...Connor was FTT at 4 weeks old, then did okay for a little while (not good, but enough to lose the diagnosis). He finally doubled birthweight at 8 months, then got sick and it took him until 10 months to reach double birth weight again. Now at 16 months (almost 17!) he's finally on the growth charts for height (5th percentile) but still well below the chart for weight.

Oh well. I don't let the drs get me too upset about it. I know that he and I are doing our best, I know that he's still developing normally for kids with his syndrome, so I try not to let it get to me. But it's hard!!!! I refuse to supplement with anything special, in his case, it wouldn't help much anyway.

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#5 of 71 Old 07-26-2008, 12:01 AM - Thread Starter
 
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Yeah, DS2 is 11 months and has not yet doubled his birth weight.
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#6 of 71 Old 07-26-2008, 03:24 AM
 
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My youngest DS was FTT when he was a toddler, and is now again (he turned 6 yesterday). I hope you find some answers very soon!

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#7 of 71 Old 07-26-2008, 04:02 AM
 
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Good luck to you guys. I hope you can figure out what's going on. My second was FTT for a while due to reflux and my youngest is severely FTT at 2.5yrs and only 19lbs. It's tough feeling like you're doing everything you can and seeing no growth.
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#8 of 71 Old 07-26-2008, 09:22 AM
 
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My little guy was thisclose to being diagnosed with ftt. I know how hard it is to even hear that when you are trying so hard and doing your best. s
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#9 of 71 Old 07-26-2008, 10:33 AM - Thread Starter
 
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Thank you all for the hugs and support. It's true I really don't know what else to do to get his weight up. I have increased the fat in my diet, he nurses every three hours throughout the day and twice during the night. He did have swallowing issues until about a month ago, but now he eats mashed foods pretty well so we feed him egg yolks, veggies&potatoes with butter or coconut oil, homemade bone broth based soups, avocados, whole homemade yogurt and raw organic milk. I really can't think of what else we could do? Any suggestions? I really feel like there must be some underlyinig problem or the high fat diet would make a difference, right?

How likely is it for him to have a metabolic or mitochondrial disorder given the fact that he was growing normally for his first 6 months and then slowed way down? Wouldn't we be able to tell from the beginning if that were the case? He was a big healthy baby.. 9 pounds, 21 inches. At 6 months he was 16.4 pounds and now at 11 months he is 17.2 pounds.
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#10 of 71 Old 07-26-2008, 10:46 AM
 
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DD has a malabsorprtive condition as well as undiagnosed gastro issues (EGE, something else, who knows?!) She grew normally for 6 weeks, slowed a bit but still within range to 6ish months, slowed a bit more to 9 months. AT 9 months she was 17 lb. 6ish ounces. At 12 months, she was 17 lbs. 6ish ounces (Might have been 8ish ounces...). Thats when she got her official FTT diagnosis. The condition was there, her body just didn't respond as violently to start as it did at a year. Now she's no longer FTT (I'm hoping for official from ped removal of diagnosis next week!) but she's tube fed a medical formula to 1152 cals a day. At 9-12 months, she was getting already nutrient dense BM to a total of like 1400 cals a day (she was getting well over 60 ounces a day) and not growing. Its how we knew something was really, really up. So yes, he could have been growing normally and slowed over time until he suddenly slowed drastically.
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#11 of 71 Old 07-26-2008, 02:47 PM
 
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Actually, my son with the metabolic issues dropped off the scale at 6 months and his twin (who had been over 2 pounds smaller) passed him up. He started off at 6 lb. 9 oz. compared to his twin who was 5 lb. 4 oz. Meaning for my size and their twin gestation he was a good size baby.

I will also say that I greatly increased Andrew's fat. He was eating way more calories than he needed and still not growing well. (He did grow some).
Turns out he can't metabolize fat. He also lost skills over time.

My point is that with unknown issues that could be metabolic in nature I think you want to keep the diet not heavy in any thing--fat, protein, carbs. You want balance.
Yes, I think there is an underlying issue or it would make a difference. I wish I knew what it is.
One thing: is there a family history of short/tiny people? Because kids can go to their genetic predisposition around 6 months too.

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#12 of 71 Old 07-26-2008, 06:38 PM
 
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I have an FTT daughter, 19 pounds at 21 months. We know that she has an endocrine disorder which makes it difficult for her to grow, but we still don't have a handle on why she won't gain any weight, and we've had this diagnosis for about a year now.

We've been through the tests you'll have. The 6-hour thing was rough, especially since they hadn't ordered the correct lab apparatus and we had to wait another hour and a half for it to arrive. You will definitely want someone else there to hold your LO before the test because it will be very hard for you not to nurse. Also, make sure the nurse or whoever is performing the tests is really top-notch. They are very, very easy to mess up.

FTT is such a hard diagnosis (is it even a diagnosis or just a description?), for a couple of reasons. Every time I see those letters scrawled across something my heart skips a beat, it's just so harsh! I think doctors look to the parents to increase foods, supplement with formula, etc., and these things may or may not be helpful, and it can devolve pretty quickly into a kind of blame game. If it were an issue of providing more food, it would be so simple to solve! I hope your doctors are supportive and helpful.

Here are some of the things we've done: acupuncture to increase appetite and absorption, hemp oil and omega oils (my primary concern is brain development), getting on a schedule of meals and snacks so that she's not snacking all day, which is not a great pattern for weight gain (but I don't know that I'd introduce that kind of schedule at 11 months). I also ignored everything they told me about breastfeeding, especially since the doctors all contradicted each other all the time. I did try a SNS when she was about a year old to increase calories, and it was a bad idea. Not only was it a total pain (and mothers of newborns who do it have my total admiration), but it just meant my daughter nursed for shorter periods of time because she got full faster.

Please feel free to PM me if I can be of any help. Good luck!
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#13 of 71 Old 07-26-2008, 07:57 PM - Thread Starter
 
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Originally Posted by sbgrace View Post
One thing: is there a family history of short/tiny people? Because kids can go to their genetic predisposition around 6 months too.
No history of short/small people. Most of our family is in the 5'5"-6'2" range.

And it is not just his growth. His skin hangs on his torso and although he has chubby cheeks and legs he has old-lady-like arm flab and thin wrinkly skin on his abdomen. His legs are even starting to look like that up at his hip joints. His muscle tone is low and he has the gross motor skills of a 7-8 month old.

I really hope these blood tests show something. What exactly do I need to do to make sure these tests are done right the first time? Do you think they could do the one(s) he needs to fast for first so he can nurse while they do the rest? I can't imagine how light headed you'd get with a blood draw after not eating for 6 hours!

Thank you all so much for your help and understanding.

Ronna
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#14 of 71 Old 07-26-2008, 09:31 PM
 
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We scheduled the testing for first thing in the morning, so I nursed at about 2:00 and then not again. If they'll "let" you nurse depends on the technician, I imagine...if you've had tests done before, and there's one you like, I would request that person. I assume to get to this point you've been to the dr's a lot before, and now is the time to call in any favors for that first appointment and the good technician. DO NOT GO ALONE. It is too difficult to deal with a baby you can't soothe by yourself.

I might schedule the urinalysis at a different time. How is he supposed to pee when he'll be a little dehydrated? That test is tricky as well, unless they are going to hook him up to a catheter.
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#15 of 71 Old 07-26-2008, 09:57 PM
 
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No history of short/small people. Most of our family is in the 5'5"-6'2" range.

And it is not just his growth. His skin hangs on his torso and although he has chubby cheeks and legs he has old-lady-like arm flab and thin wrinkly skin on his abdomen. His legs are even starting to look like that up at his hip joints. His muscle tone is low and he has the gross motor skills of a 7-8 month old.

I really hope these blood tests show something. What exactly do I need to do to make sure these tests are done right the first time? Do you think they could do the one(s) he needs to fast for first so he can nurse while they do the rest? I can't imagine how light headed you'd get with a blood draw after not eating for 6 hours!

Thank you all so much for your help and understanding.

Ronna
Another thing to look into would be genetic issues. You have a lot of markers for genetics and/or metabolics. The best way to make sure they are done right the first time is go somewhere where they do them a lot. Where are you located? Maybe someone can recommend a good doctor near you.

Lactate needs to be taken with the tourniquet off or before the tourniquet is placed if I remember right. I think it is an on ice one too. Ammonia draw has to be put on ice. The lactate is the one most often messed up. But if you go to a place where they run a lot of them it should be fine. http://www.labcorp.com/datasets/labc...o/sc014500.htm

http://www.umdf.org/site/c.dnJEKLNqF.../Diagnosis.htm My son had the blood/urine tests recommended for all patients for his initial testing and they were all fasting tests. This was for metabolics. Genetics is less involved in terms of just blood tests and fasting wouldn't be needed. I don't know as much about genetics as we're metabolic stuff but I mention because of the craniosynostosis along with the other things.

Did you notice any other changes after the surgery other than growth? Did he have the low tone and developmental coordination disorder (what is that?) before that point to the same degree?
I ask because my son went under anesthesia and after that things went downhill fast. There were issues before but they became worse after. Turns out he had a metabolic condition and the anesthesia or something else connected to the surgery was hard on him metabolically.

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#16 of 71 Old 07-26-2008, 10:05 PM - Thread Starter
 
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No, I have never been to this lab. I'll try to find someone to go with me. I also need help with my older son.

So if I have never been to this lab before, how do I make sure the tests are done right (ie one of them is s'posed to go on ice and has to be done just right for the results to be accurate). I do not want to have to repeat these labs.
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#17 of 71 Old 07-27-2008, 11:41 PM - Thread Starter
 
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Thank you sbgrace for the links and info. Very helpful.

We have decided to travel out of town for the labs since I have little trust in the hospital system in our small town. So we will go to where they know what they are doing. I talked to a very nice woman from there tonight. She was very nice and patient with all my questions and took the time to look up anything she didn't know off the top of her head. I feel good now going to that lab to get the tests done. She said it would be about 10cc's of blood. That sounds like a lot! And after not eating for about 6 hours! Poor baby. I'm afraid he'll pass out. I'm glad I called, though cause they have to make sure they have the right equipment for the lactate and pyruvate test.
Sorry to just barge in this forum with all my questions. I'm so worried this will be something that might shorten his life or he'll need meds forever. Or that we will have to go through tons of testing before we figure this out. I just want my baby to be okay. I want him to start growing and being able to chase his big brother around like he wants to.
Alright. I've got to stop my obsessive googling and get some sleep.

Ronna
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#18 of 71 Old 07-28-2008, 12:44 AM
 
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I couldn't read this and not post. Just wanted you to know that I said a prayer for you and your LO tonight. Hugs!
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#19 of 71 Old 07-28-2008, 03:55 PM - Thread Starter
 
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So we have an appointment tomorrow morning for bloodwork. We will have to drive an hour to get there. Please send your comforting thoughts to our baby, Ezzy that he won't feel too hungry and the phlebotomist, Mary, will be good at what she does.
Thank you all. I know our experience pales in comparison to the difficult things some of you amazing mamas have been through with your children. Thankyou for your understanding and comforting words. It is nice to hear that I should trust my instincts. IRL people seem to just want to tell me to not worry, they're sure he's okay... it's probably nothing.. That totally makes me question my gut and wonder if I'm a hypochondriac
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#20 of 71 Old 07-28-2008, 11:07 PM
 
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Momma's intuition is given to us for a reason. It's good that you are following yours. Even if these tests don't come back the way you are expecting them too, they will rule out these things and lead to a better understanding of what is going on. Let us know how things go tomorrow!
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#21 of 71 Old 07-29-2008, 03:40 PM - Thread Starter
 
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We are back from the lab, and it went better than expected. The drive there went well and he never made much of an indication that he was hungry. They did have to stick him three times and by half-way through the third time he was very upset and screaming. At first they were afraid they had not been able to get enough blood, but then when the lab got it they said it was find. Yay!
So, now we just have to wait for the results. That is going to be really hard. But I'm glad the whole thing went fairly well. I nursed him through the last part of the blood taking, which helped just a little bit.
So now we wait.....
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#22 of 71 Old 07-29-2008, 05:25 PM
 
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My 4yo has DCD which is also known as dyspraxia. It can definitely play a role in feeding and gross motor issues. If you find therapists that are well versed in dyspraxia, it can make working on the physical issues easier as there is a different way kids with DCD tend to learn best.

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#23 of 71 Old 08-05-2008, 11:25 PM - Thread Starter
 
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UPDATE:

I called our Dr. yesterday because I noticed some lymph nodes in Ezzy's groin area that I had not felt before. I could even see them bulging under the skin (he is skinny). So they set us up for an appointment today. I wanted to make sure they had all his lab results from last week, so I asked the nurse to check. I then called the lab where he had them done to make sure they had been sent. Then I called the Dr's office back and left a message for the nurse that the lab had sent the results.. call me back if you still don't have them. No call.

So we go today. No weight gain in the last 1.5 weeks. The Dr. said she feels like his lymph nodes are within normal. She pulls out the blood test results and explains away all abnormal results by saying he was crying during the draw, or that he must have been fighting a virus (asymptomatic). She said she thinks his delays might just be because he has to wear a special helmet for his craniosynostosis. (Ezzy's surgeon disaggrees, but evidently the ped doesn't care) She wants us to meet with the PT from early intervention to get her opinion before we decide if we need to do anything else. She felt like metabolic and mito issues were ruled out based on the blood test results. I brought up that the lactate/pyruvate is not always accurate in showing mito issues, and she said "well, being a generalist, I am not able to keep up on the recent literature of rare disorders" So, I was in shock and the Dr. just walked out of the room and that was it.
So I got a copy of the blood work before I left and asked them to mail me a copy of his whole chart.
Then when I am almost home (1.5 hour away) I realize that we never went over the urinalysis! So I call from DH's work (I had to go there to pick up DS1) and ask the lab to fax me the results. I then had to go home. When I get home and look at the results it shows there were abnormally high levels of ketones and bilirubin in his urine! So I call the Dr. and find out that they never even had the urinalysis results! Even though I was told they were successfully faxed on the 29th.
Anyway. So, I will personally fax the urinalysis to the ped in the morning so she can see them. I can't imagine she will say nothing is wrong with DS1 with ketones in his urine. If she does, she's a quack.

So here are the numbers of what was abnormal about his labs. Please give me your wisdom, wise mamas:
Chem 12:
TCO2: Low 13 (normal 17-28)
Anion Gap (calc): High 18 (normal 5-15)
Creatinine: Low 0.4 (normal 0.8-1.3)
AST (GOT): High 42 (normal 0-37)

Lactate&Pyruvate:
Pyruvic Acid: High 0.17 (normal 0.08-0.16)
Lactate: Normal 1.1 (normal 0.6-3.2)

CBC
Platelet count: High 413 (normal 150-360)
Lymph: High 77 (normal 46-68)
The absolute lymph was within the normal range, but just barely 6.9 (normal 2.5-7.0)

Thyroid Stimulating Hormone was normal 2.66 (normal 0.6-6.5)

Ammonia was normal 54 (normal 18-72)

So anyway. I feel so stuck right now. I am not sure what to do. I know there is something wrong with my baby, and the more I read, the stronger I feel like it is some time of metabolic or mitochondrial issue that was exacerbated at the time of his surgery due to all the drugs that his little body could not handle. I get so pissed that my Dr. doesn't seem all that concerned. You can see my baby's ribs! His skin sags on his body and he is behind developmentally. I don't get what she wants to see? Seizures? Regression?

Please give me any insight you might have. Is it really possible that I am just driving myself crazy and this really is nothing?

Ronna

Also, here are his growth charts:
Weight
Height
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#24 of 71 Old 08-06-2008, 12:41 AM
 
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if you get the brush off again, get copies of all the medical records and tests, an search/hunt down any dr who will listen...... on the phone mention the ketones in the urine. you could also try the ER if you are worried and cant get anywhere
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#25 of 71 Old 08-06-2008, 12:58 AM
 
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So here are the numbers of what was abnormal about his labs. Please give me your wisdom, wise mamas:
Chem 12:
TCO2: Low 13 (normal 17-28)
Anion Gap (calc): High 18 (normal 5-15)
Creatinine: Low 0.4 (normal 0.8-1.3)
AST (GOT): High 42 (normal 0-37)

Lactate&Pyruvate:
Pyruvic Acid: High 0.17 (normal 0.08-0.16)
Lactate: Normal 1.1 (normal 0.6-3.2)

CBC
Platelet count: High 413 (normal 150-360)
Lymph: High 77 (normal 46-68)
The absolute lymph was within the normal range, but just barely 6.9 (normal 2.5-7.0)

Thyroid Stimulating Hormone was normal 2.66 (normal 0.6-6.5)

Ammonia was normal 54 (normal 18-72)

So anyway. I feel so stuck right now. I am not sure what to do. I know there is something wrong with my baby, and the more I read, the stronger I feel like it is some time of metabolic or mitochondrial issue that was exacerbated at the time of his surgery due to all the drugs that his little body could not handle. I get so pissed that my Dr. doesn't seem all that concerned. You can see my baby's ribs! His skin sags on his body and he is behind developmentally. I don't get what she wants to see? Seizures? Regression?

Please give me any insight you might have. Is it really possible that I am just driving myself crazy and this really is nothing?

Ronna

Also, here are his growth charts:
Weight
Height
Creatinine, lower is better, it means the kidneys are working well. If it's high, that's when you want to get concerned. Also, the platelets at that level are not going to concern a doctor.

One thing to remember is that all labs have a different reference range so any figures that are just barely out of the normal range are typically ignored. Not saying that's the right way to handle it necessarily but it seems to be common that unless the value is significantly out of the normal range or over a period of time is slightly outside the normal range, doctors don't seem to care. Then you have values that may be elevated but unless it's tied with other symptoms and lab values it's deemed insignificant.

It sounds like your doctor should have taken more time to go over things for sure but it doesn't look like anything is horribly wrong.
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#26 of 71 Old 08-06-2008, 01:22 AM
 
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Low creatinine CAN signal muscle disease or muscle wasting. But in this case, the range is an adult range. .4 is normal for a child his age.

The pyruvate is signficant. ANY elevation in pyruvate is significant AFAIK.

You need a specialists help.
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#27 of 71 Old 08-06-2008, 01:32 AM
 
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The anion gap is a bit high. The low Co2 is significant IMO too.

FWIW, my son's pyruvate is .22 and no one has batted an eye. And he's seen real famous specialists.

I agree it sounds like something is going on.

Nicole, mom of 3. Mitochondrial Disease.: Epilepsy
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#28 of 71 Old 08-06-2008, 01:39 AM
 
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Anion gap is high especially if it does not include potassium. Plus, his lactic acid is not elevated with a high anion gap which is indicative of more complex issues.

And specialists often disagree, just so you know.
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#29 of 71 Old 08-06-2008, 01:48 AM
 
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Was this all looked at by a regular pediatrician? Have you guys not seen a GI for starters since the main symptom is lack of weight gain? A pediatrician isn't going to know much about what these results might mean.
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#30 of 71 Old 08-06-2008, 01:50 AM
 
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Originally Posted by my3peanuts View Post
The low Co2 is significant IMO too.
It definitely may be and I hate to sound like the doctor but that can be affected by the circumstances of the blood draw. We've had several CO2s come back low for this reason and when we re-drew they were normal.
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