A day full of unanswered questions

I need to start from the beginning; in Sept Tyler got sick with what we don't know. But in the ER his blood sugars were in the 30's and he was unable to keep them up even with sugar. He was admitted to the children's hospital and released just over 24hours latter. We have since meet with an Endocrinologist and began checking Tyler's sugars once in awhile. Last week Tyler was having his bad day. We came home from ST and he just laid on the sofa. About an hour latter I went to get him ready to have lunch with Brycen, only to find him hot sweaty and very tired. So I checked his sugars, 326 is what I got at first then I got another reading of 276. So I called our Ped, left a message. In the end after a lot of phone calls and another sugar reading of 260's, our ped wanted to see him. We know a few things no he was not getting sick (cbc came back normal), he had sugar in his urine but no Keytones, and we had one confused ped....sigh! She talked with our Endocrinologist and they both felt is was time for some blood work. So Friday morning after dropping off kids to school Tyler and I trucked down to the Endo's office to get paperwork. Turns out it was a good thing Tyler went to bed Thur night with sugars @198 and woke to 176. I was able to speak to Dr Y (Endo Dr) and he put a few more tests on his blood work. I took Tyler to get the blood draw done and what a big boy I have!! She stuck him and he looked at her and said "ouch" and that was it! 5 viles of blood and a good 2wk wait to find out if we have anything or can rule out anything.

So to yesterday we took Tyler to his GI appt, 2hour drive there and back. All I can say is Thank God for a good book! His appt had good points and bad, sad and happy points. He is currently 32lbs and 38 1/3" according to the GI scale, a growth from June when we were there. Dr J (GI Dr) said it could be this or could be that, but always backed it up with it couldn't be this because he has ABC but kids with this don't have XYZ and he does. So it was a 20 question game with no answers. Another Dr to say *He has stumped a lot of Dr's, he is not Text Book*, please please just tell me one thing I don't know about my son.....sigh! A few things he'd like to see. Dr J asked if he could speak to their Endo team up there (sure why not!), he would like to have Tyler go inpatient for a few days run some tests and get Endo involved and have them run some tests, he also suggested we get Nuro involved because of Tyler's tone and fatigue.

We have another appt in May with GI, but once I have his test results from the blood work I am to let him know what they are. Tyler has an appt on Nov 24th with Endo to go over his results and maybe get some sort of plan in place. So right now we are on hold so to speak. We have no answers to what this is, since my child follows his own beat. We have no DX as to what is wrong. So once again we hang in and wait. Not having a DX is hard, not knowing if you are treating him right or not is hard. Just once I'd like someone to say "We found it, we have a plan" but I realize that may not happen for months, years or maybe never! It really does SUCK!