So many people have been asking about Jackson's health. Some are coming to the story late, and it's a long story. I have decided to move everything here for those who are curious. For those of you that don't know the "history", this is the place to start. It will be brief, but informative. (I hope)
In July Jackson was taken to the ER when our Family Doc thought he might be having an appendicitis (due to the pain he was in on his right side). Instead we would discover he was in DKA (Diabetic Keto-acidosis), his liver was enlarged, liver enzymes were slightly elevated, and his electrolytes were low. We are admitted over night. The DKA was cleared and we were sent home late the next day. Everything chalked up to Diabetes and a need for better control. The Endo appointment at the start of school would show that control had improved.
Over the next few months we would watch him go through what I can only call a cycle. Approximately every 5 weeks we would go from "perfectly normal", to "sick". At first it lasted about 24 hours, then 48. It left as fast as it came. He would start to experience more and more heartburn. As the Endo's (Diabetes Docs) were not overly concerned, Family Docs and Hospital Docs wouldn't be either. So meds were just given to treat the heartburn. They would quickly become ineffective. We would still be told that better diabetic control was needed and all would resolve itself. However we were seeing the opposite, as he got control, his symptoms would get worse. We were mostly managing symptoms at home at this point.
Fast forward to November, the week before Thanksgiving. Symptoms have changed. While weak in an "episode", now he is dizzy and can't walk without assistance. It's almost as if he is "drunk". He went to bed fine, and woke in this condition. Blood sugar is fine. Pain has increased. "full" feeling has his refusing all food, and having trouble drinking. He looks so bad we go to the ER, where we are admitted over night. This time the bounce back doesn't come as quick, and he still seems "not quite right".
The week before Christmas I would need to go pick him up from school. He left fine that morning, and a few short hours later he was in the nurses office. We would have to wheel him out in a wheel chair to my vehicle. I stopped home, grabbed a few things, and took him to the ER. He is in DKA again. This made no sense in regards to his blood sugar. They get an IV going, with insulin, and his blood sugar would drop like a rock and "poof", the ketones are gone. Finally someone listens when I say there is more going on than Diabetes. Something is causing him to be SICK. Ped Doc runs a A1C, and it's amazingly at 7, which shows he has really improved his control, and proves what I said, it was not out of control blood sugar causing DKA and that something else is going on alongside the Diabetes.
At this point...since July, he has had multiple ultra sounds, a CAT scan or two and a MRI or two. (it's all kind of a fog). The liver has always remained the same. Enzymes are always a bit off, and electrolytes are always low. We have an appointment to see a GI in Lincoln, but can't get in until the end of January. A Doc in our family practice had a Upper GI test run, in an attempt to start what the GI might when we finally get in. It that shows irritation, which is no shocker due to the amount of heartburn he has been having.
The Ped Doc at the hospital orders a stomach emptying test while we are in the hospital. Sure enough, it comes back showing he is emptying slowly. She calls the Lincoln GI to see if there is anything that can be done at this point, maybe even move up our appointment...something. Not only do they not move up our appointment, they DROP it claiming they didn't know his age. (which is not true, because this Doc who originally called them, and I had told them initially...anyway, that is mute at this point.) We are devastated. The Ped Doc is angry and knows he needs seen. Bless her heart, she calls and gets us worked into the schedule at BoysTown, with one of their Ped GI's.
We see him the Monday before Christmas. He is amazing! Looks at all his records, asks questions, examines Jackson himself, and talk some more. He runs some new blood work, has an ultra sound done right then, and wants us to set up a colonoscopy and upperendoscopy. He wants to "see" what is going on and grab some biopsies to check for things like Crohns and Celiac.
After the blood work and ultra sound we leave only to get a call 15 minutes later asking if we can come back. BT GI wants a different picture of Jackson's belly. We hadn't left town yet, and weren't far away so headed back. The next day they call and tell us blood work is basically the same, but that over all looks good and they have ruled out some other things. I don't know what all those "things" are, and at this point it is mute. The ultra sound shows he has a gallstone, but that it is on it's way out. None of the other scans had showed this, and this was why they had us come back. They state it is "on it's way out" and should pass no problem. The order a 24 hour urine test. It will come back showing his Kidneys are ok, and there is no Wilson's disease with them. He has a extended MRI scheduled, and that shows that the gallstone is gone, liver status hasn't changed, everything else looks good. (All of this happened in 2 weeks time)
Two days before the scopes, 3 weeks from our last visit, we are back in the ER. Same symptoms, ER Doc doesn't listen to us when we say to call BT GI before doing anything. ER does all the same tests as before, blood work shows possible appendicitis, scans show it is fine...again, but they discover his liver has grown again. At this point I throw a fit and they FINALLY call the GI. At this point, the BT GI calls the GI Liver clinic in KC to get us an appointment down there. We go ahead with the scopes were we discover he has the H Pylori bacteria, and where Crohns, Celiac, lactose intolerance and other things I am not sure of are ruled out. WHEW. A medicine regimen is started on the bacteria.
Just a few short days after the results are in from the scopes, we head to KC. The BT GI told us o expect a liver biopsy. Despite the fact that BT had sent ALL of Jackson's records, and received confirmation of receipt of 31 pages of them...the Liver GI can't locate them. He doesn't do a biopsy stating he "knows what he will find" and it's going to be related to is diabetes. He wants to wait and see if we have any more "episodes" and is confident we wont because he is sure the H Pylori is the cause of them. A very frustrating and disappointing visit.
However, as Jackson take the meds we start to see his youthful vigor come back, his coloring looks good, we even see his 16 year old attitude return. Finally, are we at the end??? Was this pesky bacteria truly the cause of it all???
On the last day of his meds, Jackson wakes up symptomatic. Robert takes him to the ER in Omaha (Children's). Hydrated and sent home. He is out of school the next day (Friday). Monday we go to the BT GI. He is shocked to discovered KC Liver Doc did not do the biopsy. After a long talk, reviewing everything again...BT GI feels that we really need the Liver Biopsy. So we will be going back to KC. Date as of this writing yet unknown. A new med was started to try and help manage pain and relax the whole gut area, just to see if it wont help with symptoms. BT GI is very curious what Endo's will say later this week as we have an appointment.
Stay tuned...
