Diagnosis: Crazy

From just two weeks old…we have gone from “colic” and giving gas drops to “genetic metabolic disorder” and giving CPR.  And, it has been a long 5 months in between all of that.

Honestly, I will admit that it got to the point that I was so adamant on an explanation…a diagnosis…that I lost sight of what was really important…Caleb doing well….feeling well.  I wanted to know, understand and fix it….as. soon. as. possible.

I honestly pursued that with such a vengeance and obsession that I couldn’t tell which way was “up” anymore (although, hopefully you understand that if your kid has or had stopped breathing on more than a handful of occasions…you, too, would pursue it relentlessly…so don’t diagnose me as crazy…yet  ;))

Anyway…Caleb was scheduled to undergo anestesia and 3 biopsies tomorrow and for the past week I’ve had a bad feeling about it that I just couldn’t shake.

In short, I got to thinking….How did this all begin, anyway?

It started out with lactose intolerance misdiagnosed as severe acid reflux and Prevacid treatment which he responded negatively to which resulted in another hospitalization and diagnosis of Sandifer’s Syndrome and in those hospitalizations learned that he has elevated liver enzymes and is neutropenic (very low white blood cells that fight off infection).

Then, in an effort to rule out liver disease-they ran a test for Organic Acids-which showed whacked levels of certain acids that lead down the path of genetic metabolic disorder…

Which lead the GI doc to order more blood and a bunch of biopsies to rule out any other possible reasons…

and by this time I felt like I was spinning around in circles going to one doctor’s appointment or a lab or getting results or catching urine or Googling something or talking to someone or trying something else….

But in these past 4 weeks…when you LOOK at Caleb…he seems fine.  Like a normal, healthy, happy baby.

So I went back to where it all began and realized if we simply would have have received the correct diagnosis of lactose intolerance from the very beginning and treated it then…we. would. never. know. anything. else. because Caleb….CALEB hasn’t shown us anything else.  One doc said “If you put anyone under the microscope Caleb has been under…you’d find that half of us probably have a mild metabolic disorder” or at least-we’d all find something wrong.  And that’s all we’re running around chasing at this point…labs…not symptoms…

As of now…Caleb is healthy, happy and what we are doing works for him…so, call us crazy but until that changes we have decided to put a stop to all of the digging.  My own “digging” included.  As much as I want to know for certain what everything means…I don’t need to know if it is at Caleb’s expense…and unless HE shows us more or a direction to pursue….I do not think any more blood draws, labs, biopsies, anesthesia, etc. are in his best interest.

It is my prayer now that Caleb never reveals more…that unless we draw his blood or collect his urine-we’d never ever know there was anything wrong…and that the things we are doing continue to help him and he gets better and better with every single day and  we don’t have another set-back and (hard to believe I am going to say this) that I never know what is is/was.

Although if this metabolic madness is what causes him to need to eat all the time….pray that it tames itself in the middle of the night…sheesh {yaaaaawn} 🙂

Thank you for your prayers, kindness, love, support and encouragement.   I pray this is the last “Caleb Update” unless I am just telling you he is walking….oh crap…I guess he cuts teeth next….ugh. 🙂 j.k.  Let the (real) fun begin!

xo

 

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2 Comments on “Diagnosis: Crazy”

  1. the mrs. says:

    What was it that caused him to stop breathing, because I thought that was the major issue. BTW, Wren is dairy free, too. Yippee! 😉 She was so unhappy for the first month of her little life. I thought about Caleb and what you were dealing with *often*.

  2. Bon-I sent you an email but to reply for other who read this and are concerned…I believe that the “not breathing episodes” that occurred in the first 9 weeks of his life can be attributed to the fermentation of the lactose build up in his colon. The pressure and pain were excruciating and it causes big problems.
    I cannot make sense of the one 4 weeks ago and trust me….that is enough to keep the “digging” going…but there is simply nothing we can do until it happens again and we collect his blood and urine then to get ammonia/acid levels…so we just pray and hope it doesn’t. That is all we can do.


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