Waiting & What's Next ...

So the whole reason all this came about is because over a 6 month period of time I noticed dylan was gaining weight. Now keep in mind because of his sensory issues he only eats yogurt cereal bars and puffs. In the past 6 months dylan gain 38 pounds ( as of last week). We went to a nutritionist which to me was a total joke. I understood what she was saying with cutting back but considering what he eats there's not a lot to cut back on. So I talked to his pediatrician thinking he has a thyroid issue which wouldn't be to far fetched my in laws have problems with that. So we did your basic blood work.

     Dec14 2013

    Dec 7 2014

   Nothing could prepare me for the next month of a roller coaster ride with his lab work and trying to understand what it means.

   Keeping in mind that the only thing I was certain of was that my 4 year old is 68 lbs and that is very alarming. 

  I keep saying by the time all this is done I'm gonna be a doctor with out a degree. I'm not sure how people did it before Google ... Google is now a best friend of mine. So here are his first set  results that came back abnormal on December 1st 

WBC 14.7 - high

MCV 71- low

MCHC 30.8-low

RDW 17.5- high

Platelets 628- high

Lymphs 7.7-high

Monocytes 1.2 - high

Eos1.0- high

Cortisol 24.4-high

  There are a lot others that came back high and low. However he did not have diabetes or a thyroid issue.

  At this point this pediatrician called me and said everything came back normal but his cortisol is very high she was refering us to Hopkins. She called me on a Friday afternoon. I heard from Hopkins Monday morning, they wanted to see Dylan on Friday.  My gut feeling was ok something isn't good if they want to see him this soon.

 We met his endocrinologist Dr. Beckwith-Fickas. Can I just mention how great I think she is? She is beyond good with dylan and really explains things well. I will never forget she said to me #Do you know why you are sitting here so soon?" I said well I know looking at his labs something is clearly wrong. 

  She said there was a concern about his weight gain and his cortisol level. And she said at this point he could have Cushings Disease/Syndrome or ROHHADS. So we had to do more lab work. She reassured me saying this is not a dietary issue this is clearly a physical issue. 

  So on December 18th we did more lab work. Here are the abnormal results. Now this time we gave Dylan Dexamethasone the night before so  that way we can find out if he had cushings or not. 

MVC 68 - low

MCH 21.3- low

RDW 16.8- high

Platelets 898- alert

Cortisol .9- low

Prolactin 44.5 -high

C-reactive protein 5.1 - high

With these labs we can rule out cushings.

  The doctor called the Wednesday before Christmas letting us know his prolactin is elevated and there was a possibility he could have a pituitary tumor but we still couldn't rule out RHHOADS. 

  My heart sank. I did ask if he had a tumor could it make his platelets this elevated she did say yes. 

From there she ordered an MRI of the brain.

  I was a hot mess to say the least. I never wanted so badly for my kid to have a tumor. To me it was yes this sucks but it's fixable. And the good doctor also ordered more labs and repeat of last ones. 

  At this point in time I'd also been getting notes home from school that Dylan is randomly hitting kids. This is not my Dylan. He has been on Tenex for his ADD issues and it's been working great but now suddenly by the end of December school was saying no kids can walk past his desk without him hitting them. 

  And I know you are thinking just talk to the kid and see what he has to say as to what's wrong. If it were only that simple. Dylan is mentally only 2 and a half. And he is considered non-verbal. If it were that easy Id gladly sit and talk with him.  

  Still is seems like we've got more questions then answers....