CO2/Potassium Blood Levels

[Anonymous]

This week we found that our son Christian, 14mos old, 16.92lbs, 30inches had his initial blood work at 4 months and they showed some abnormals – but they were never followed up on. The carbon dioxide levels were low and the potassium levels were high. Guess the combination of the two can be a treatable metabolic disorder that doesn’t allow for adequate weight gain.

Does anybody know anything about this or have heard of it before? Why wouldn’t it have been followed up on? Why would it have taken 10 months and my asking why abnormal was ok to 4 different doctors to review it? Who/what kind of doctor deals with metabolic disorders?

I am just so frustrated and confused. We are going for follow up blood work tomorrow.

Again sorry for so many questions.

[Anonymous]

OMG, how frustrating Laura! Hailey also had a metabolic workup and had several things come back abnormal… several high amino acids, high lactic acid, and very high oxalic acid. These things can also be indicative of metabolic disorders. High oxalic acid usually indicates kidney stones or at the levels that came back in Hailey’s blood, kidney failure. But she didn’t have these things, so hopefully that is somewhat reassuring to you.

Before I answer some of your other questions, as we’ve talked to our ped about it A LOT, I was just wondering how you found out what the results were, and who told you that the two can indicate a treatable metabolic disorder that prevents weight gain?

We were told that it’s not uncommon for various things to come back either high or low in the blood, especially in babies, and especially in babies who don’t eat properly. The concern is when they come back either SO high or SO low that they get flagged. When they’re flagged it means that they are unusally high or low and usually follow up or repeat testing is done. In our case, when repeat testing was done, some of the things that came back high the first time, came back high-normal the second time, or within normal limits.

We were also told that sometimes things are high or low, but in no discernable pattern. So several items might be off, but when you look at them together, they don’t fit the pattern for any specific metabolic disorder. I don’t know about the combination you mentioned- low CO2 and high K+ .

There are doctors who work specifically with babies and children who have metabolic disorders (Our ped happens to be one of them). They are called pediatric metabolic geneticists. There are usually one or two on staff at children’s hospitals. They are experts in analyzing patterns in blood work and working to treat any metabolic issues.

If I were you I would go back to your ped (or whoever ordered the tests) and further discuss your concerns. They may be able to put your mind at ease. Good luck to you. I wish that you and poor Christian could get a break. Please keep us posted.

s&h’s mum2006-6-20 21:43:11

[Anonymous]

Laura ~ It is important to understand that if you are looking at a report from a lab that shows a high or low level that it may not be considering the reference range of a child. I contacted a lab at one time because I was concerned about something and was told that quite often the reference range on lab reports are those of an adult and that there aren’t always reference ranges of children available. I found that the Ped and Ped GI weren’t aware of this. Hailey had a supposed low IgA level at one time according to her lab report and after doing some research and discussing that research with her Ped GI, we found that her IgA level was actually appropriate for her age. This was after the Ped GI had me completely freaked out because of his concern over her extremely low IgA level. I also agree with Lori about babies having low and high values in the blood just because. We’ve seen this with Hailey as well, generally the tests are repeated for a period of time to see if the low or high value persists. I would definitely seek out the help of a specialist to get the most accurate information. Good luck and I hope you get some answers soon!

[Anonymous]

It first triggered when I received copies of the medical reports and the lab results were in there. I asked each doctor independently – can you explain to me why “abnormal” is ok. They just blew me off and said – babies ranges are different.

Now with that being said, why is it that the 4th doctor became alarmed…because the pattern of weight loss/feeding problems and such have presented for so long? I don’t know.

I have done some research and the “metabolic” disorder sounds like it is called renal tubular acidosis. It is hard to diagnosis as CO2 is a gas and can be read wrong given the age of the blood. The potassium can also be read wrong as the blood may be broken while shaking or during the draw itself. It does in half of the cases go away by kindergarten and easily treatable with a bicarbonate type product. The markers for this are high or low co2 and/or high/low potassium. A child presents with feeding problems, poor weight gain, vomitting, episodes of dehydration.

He will have the blood tests again – hopefully today and if the markers are still there – then we will have to see a specialist, I think.

This is just so frustrating. Thanks for your help.

[Anonymous]

Sorry I don’t have any advice or knowledge on this topic but just
wanted to pass along support – I hope you get some answers soon.

[Anonymous]

Laura

UGGH don’t know… some of Matthew’s bloodwork came back with abnormalities (Lori, funny some of the same ones you mentioned) but our ped said it was OK (in spain) and then we just had another blood test here and everybody said that everything looked good.

Did anyone do bloodwork before Gtube surgery? I know that Matthew had at least 4 blood tests done before and while in hospital and i know that we asked and they said all was fine…

[Anonymous]

They did NOTHING. No presurgery blood work or anything. His only blood tests were in Aug when he was 4 months old. Yet another thing I wonder about – why did they do surgery without it? I thought it was a routine thing? They did it with my cat even.

GRRR

[Anonymous]

Hi Laura,

((((HUGS))) & sorry you are having to go through all this. That is the worst…waiting & not knowing. I hope the labs were drawn this week & you’ll know ASAP what (if any) is the next step.

I agree with what all the other moms said…lots of times it can appear elevated but only b/c the reference range is not for the child’s age, & also an abnormality once is not always abnormal. Diet, whether the child was crying during the blood draw, if they were sick, etc. are all factors in lab results.

That being said, I am glad the docs are retesting & examining this a bit closer in light of Christian’s symptoms. Emma has had neurological & other health issues her entire life. Her first acylcarnitine profile came back abnormal (but not a big concern to docs…at the time) then she was ill & had a lot of abnormal results (also an ‘anion gap’ which is co2 & potassium, maybe others I can’t remember…sorry), plus elevated liver enzymes. All of those combined with her symptoms then led her geneticist to want a thorough metabolic work-up (beyond the usual metabolic labs–all of which Emma had had & were normal). This led to a biopsy last month & the docs now fairly certain Emma has a mitochondrial disorder.

So, while in most cases elevated or low levels don’t mean a problem, they need to be looked at with regard to the patient’s history. I hope the next round of labs is normal. If not, find a GOOD metabolic geneticist.

Take care.

[Anonymous]

Sorry to hear they did nothing… well hopefully with the new lasbs you will get some answers and i am praying they turn out OK.

[Author]

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