Gavin’s appointment went pretty well

We met with Gavin’s pediatrician this morning.  It’s been almost 2 years since Gavin’s been to his pediatrician.  I know that sounds bad but Gavin’s goes to all his specialists and between all of them, there hasn’t been a need to get to the pediatrician. 

Our pediatrician happens to be really amazing and he knows that Gavin’s being cared for by a bunch of other doctors.

Anyway, we got him brought up to speed. 

The major concern right know is the weight loss.  There are a few possibilities right now being considered.  His metabolism may be cranked up too high as a result of his autonomic dysfunction. 

Vitamin deficiency has been tested for and ruled out.  All his labs from last week came back normal. 

Celiac Disease has been raised as a possibility. 

If you remember, that was a concern awhile back.  Actually, it was a concern about 3 years ago this month.  It was the blood panel that his gastro had done, that identified Gavin’s primary immunodeficiency…. The blood work had come back negative for Celiac Disease, however, Gavin’s pediatrician pointed out today that if Gavin’s IgA was low at the time of the test, the results are basically worthless. 

Truthfully, we never pursued Celiac Disease after we found out about the immunodeficiency because that was a huge friggin deal and it took priority. 
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After that, it’s been one major problem after another with Gavin’s health. 

We have to get back in to see Gavin’s Gastroenterologist. He’s since moved to the Cleveland Clinic so we’ll have to make the trip. 

Essentially, we are going to have to hurry up and wait

Our pediatrician is going to go over all Gavin’s records and formulate a plan of attack.  There are labs that he wants to have done but he wants to make sure they haven’t already been done. He knows Gavin’s fears and he wants to get everything done in one shot, so we don’t have to out him through anything more than we have to. 

For right now, we have to increase his caloric intake and see if he can at least maintain his current weight. 

Gavin’s not due for blood work for about 3 weeks.  We’re going to use that time to figure out what tests need to be done.  As far as the weight loss is concerned, there’s no immediate danger, at least that we know of. Honestly, this plan seems pretty reasonable to me and I’m comfortable with it. 

Our pediatrician is very conservative and very thorough.  Gavin’s in good hands. 

This site is managed almost exclusively from my Samsung Galaxy Note 3. Please forgive any typos as auto-correct HATES me. 😉



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Lost_and_Tired

doGFREEright thanks

doGFREEright

Lost_and_Tired left a message on your blog. Ur mention of celiac caught my eye, not 1 to be feared – it could hold lots of answers 4 ur fam

Nikki Costello

Not sure about the US but in the UK they prescribe nutritional drinks (milkshakes) that have 200 odd calories in per drink, that would save you needing to spend money to increase his calorie intake and he wouldn’t need to eat more, just drink the shakes in between meals (they’re lactose free – well the ones we get are)

doGFREEright

tumbled on your twitter post & found your story. Please please consider celiac for Gavin AND the rest of your family. All of the symptoms you described for your children and your wife are possible symptoms of celiac or non-celiac-gluten-sensitivity. Celiac is not a disease to fear, it’s controlled by diet! 3 million in US have ut but 90% go undiagnosed l. My son nearly died from dramatic weight loss (10lbs in 2month at age 20months) caused by celiac crisis – which doctors did not recognize!! but once it was discovered (unfortunately I figured it out before the doctors), it turned out that celiac/gluten had been making my whole family sick – migraines, bipolar, etc. I’d push for testing ASAP. It may not be the answer but if it is (or at least part of the answer) life will start improving. Feel free to contact me on Twitter @doGFREEright I’d be happy to share what I’ve learned. Good luck!!

doGFREEright

Stumbled on your twitter post & found your story. Please please consider celiac for Gavin AND the rest of your family. All of the symptoms you described for your children and your wife are possible symptoms of celiac or non-celiac-gluten-sensitivity. Celiac is not a disease to fear, it’s controlled by diet! 3 million in US have ut but 90% go undiagnosed l. My son nearly died from dramatic weight loss (10lbs in 2month at age 20months) caused by celiac crisis – which doctors did not recognize!! but once it was discovered (unfortunately I figured it out before the doctors), it turned out that celiac/gluten had been making my whole family sick – migraines, bipolar, etc. I’d push for testing ASAP. It may not be the answer but if it is (or at least part of the answer) life will start improving. Feel free to contact me on Twitter @doGFREEright I’d be happy to share what I’ve learned. Good luck!!

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