beacuse I believe in the power of prayer.. i need your help

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by far one of the most pathetic pics i have of Ethan but it shows his tubby tummy.

Hey AshleyB....I'm so happy that Ethan's now home with his family!

I can feel your pain & have a good idea of what you are all going through right now!
- My little girl, started running a ridiculously high temp when she was 6mths old, wouldn't feed, went jaundiced & convulsed in her sleep...We spent 3 days going too & from the doc's and were told that it was "just" a slight fever & not to worry!
On the 4th day, we decided that enough was enough as we hadn't managed to get any fluids into her for nearly 24 hours, so we rushed her straight to the hospital...Where after extensive test's they broke the news to my wife & myself that she had Mengitis...Both the viral & bacterial!!! :(

We very nearly lost her.....But with the love & dedication of the nursing staff, friends & family, she pulled herself through! :D

Thankfully, she was given the "all clear" within 4 months of diagnosis & baffled all of her specialists!

As for the possibility of Crohn's or Colitis, I have been suffering from Crohns-colitis for nearly 13 years now....And the medication for it has vastly improved over the years.

You are all in my thoughts and prayers & I hope they find, treat & cure whatever it is very soon!

Love to you all!

Steve. ;)

wow steve.. on both your and your childs account! thankyou for your input, you put alot of hope and light into the situation. were hoping to find out once and for all what is "wrong" with him and get on a path of fixing it.. hopefully these next two weeks will go quickly!

Sorry it was a bit long winded hun...I just wanted you to know that miracles do happen.....And to NEVER give up hope!!!! ;)

X

Ethan spent another four days in the hospital from last wednesday to sunday night... it started with swelling, ulcer on his tonsils and a fever as usual. They chose to run a battery of tests on him while he was there that ruled out ALOT of big conditions so for that were thankful!

Here are a few pics of what all has been done and one really silly one... if nothing else this time they were able to run some much needed tests on him that had been put off in the past due to his high fever. Ill leave out the drama crappy stuff of blown veins and stuck feedings tubes and give you facts lol.. its too exhausting to type out everything thats happened this time around.

He wouldnt drink the golightly stuff for his colonoscopy and endoscopy so they put a feeding tube in to give it to him that way..
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then he got a spider man mr potato head and tried the glasses on for size lol
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I have the photo results of his scopes and will post them when i get them upstairs.. for now they are in the backpack in the car.. his pathology came back too and everything in his GI is normal, there is no signs of crohns, colitis or celiac which is great!

They ordered the gallium scan which involves them injecting radioactive molecules into his blood stream and waited 24hrs to do that scan and then repeated it at 48hrs. this test was to show us if there is a collection of WBC (aka infection) anywhere in his body
night-night ethan
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secured to table
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scanning
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cool results! (left anterior/right posterior)
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they tested him for more various outrageous things such as
HEP A & HEP B?
rat bite fever (which was negative) the dr totally pissed me off with that one but :roll: whatever i loved rubbing it in her face when she told us it was negative!

and now they want to do another TB test which we denied.

the rest was pretty standard (A&A, CRP, CBC, exc)

the A&A test came back positive but everything else was normal.. as a recap, he does NOT have crohns, colitis, celiac, strep, rsv, flu, hep a & b, no rat bite fever and a negative gallium scan that tells us there is no infection in his body.

The drs wanted to go ahead and diagnose him with an immune deficiency not otherwise specified but we have to get all his doctors to believe that before they will diagnose him with it. He had an appt this morning with infectious disease dr who took another look at him (She saw him 3xs while in hospital) she did another sample of his ulcers in his throat too. she now feels he may have something call PFAPA Syndrome which is periodic fever blah blah blah. It explains why hes fine one day and the next has a raging fever, it also explains the cronic throat/tonsil infections too (ent was planning on removing tonsils if the throat/tonsil infections contined).. it does not however explain his failure to thrive. he still has a ton of appts in the next couple weeks and hopefully by the middle of may we will have a diagnosis.

April 25th- Dr Singer- ENT-(discuss surgery- will be 4th x he will be "under" grrr)
April 30th- Dr Benke- Genetics
May 5th- Dr Carro- Immunology
May 8th- Dr Rivas-Chacon-Rheumatology

Bless his little heart! :(

I s'pose on the up-side, at least they've now totally ruled out a lot of the nasty's....I just hope they pin down & treat the problem soon!

Thanks for the update hun! X