What Jilly said. Thinking of you and hoping for the best.

Thank you, Everyone. Things are continuing to trend well, though no diagnosis or much of a lead on one, yet.

gsciencechick, they did test for mono. Thank you, though.

I will update at the end of the day ❤️.

Relieved for you and boy Z.

Just seeing this now. Hoping your son continues to heal and the cause of his illness is discovered. Sending my best.

Zal, I think of you, your family, and your son often. I hope and pray things are moving in the right direction.

I am sorry for not updating yesterday as promised. It was a very long day. He is improving, though no diagnosis seems forthcoming. Waiting on more tests, but the handwriting is on the wall, if you ask me. That all the terribly frightening things are almost all off the table is great. But the concern for me is finding out we should have chased things harder instead of accepting the, Be happy, this looks like a one off, or it looks like Gilbert's (I misunderstood and thought we could not have passed down Gilbert's but it is theoretically possible. we can get genetic testing done when he is out of the hospital, but it takes a month.)

His bilirubin is down, but not normal. He is no longer jaundiced. He still has tummy trouble, but that too is moving in the right direction.

He is finally browsing stuff on his phone and playing with the Nintendo Switch, complaining a little about being in the hospital and asking for food. I love all those things. He eats very little (he is so weak he uses a walker to go to the bathroom.)

Your support has been invaluable. I feel such comfort. I cannot thank you all enough. Sending out a giant, virtual group hug. ❤️

Zalco - so glad to hear things are improving and most of the scary stuff is not on the table. Thank you for the update about Gilbert's too as I was going to write a reply on that as I thought my doctor told me the wrong thing as my parents don't have it either. Honestly though I don't know if that is the issue for me or something else random. I always find it so hard when I don't know the reason for something although I do prefer it over something bad. I hope you can at least get some answers vs. no answers at all.

I'm so glad to hear he is improving. I understand your feelings. My illness was never diagnosed; it seems I am a mystery. But I am so thankful it is over and I am almost back to normal (still a few things I can't or won't try to eat yet). I hope he is soon back to normal and home!

Thank you so much for the update, Zee! It sounds positive, I love that he’s playing games, asking for food, and just feeling more himself. Hugs back! ❤️🥰 I hope each new day brings more and more improvement and normalcy (and that you get answers)!

Thank you for taking the time to update us. What an ordeal. Glad he is on the mend!

I am so glad he is doing better. Hoping that some sort of diagnosis is forthcoming in the future after results of all tests are in.

You're one of my most favorite people in the world Z - I'm just glad to hear it's getting better for now anyway. It sounds like it was really bad though and with no real cause....I understand. I'd be pursuing every test option available too.

Poor guy, I know there are other places he’d rather be this weekend. Hoping that every hour contnues to bring improvement. Thank you for taking the time to update. Sending those good vibes your way.

I'm glad you are seeing your son coming back. I hope there is an answer as I hate mysteries. Although life is a big huge mystery so maybe I shouldn't. Sending hugs again and good thoughts for answers and a completely recovery.

It's such good news that he's heading in the right direction toward health. Hope he continues to feel better and better and that it truly is just a one off. We're so advanced with science and health that it's difficult to accept sometimes that the answers might remain unknown.

Zalco - Wishing your son a continued recovery. Hopefully they figure out the cause, if not it may still be fine.

My son was not as sick as yours, all treatment outpatient. Fevers, burning, swelling joints and nausea. They initially thought it was Rheumatic Fever but he never tested correctly for it, he had other strange test results though. DS was under the care of an infectious disease doctor who was determined to figure it out, Dr House II, tons of tests for 6 months. My son's symptoms ceased and and his lab tests started coming back normal. The doctor could not find any other tests to do, my son went back to his normal life. This was in 2019, no problems since. Sometimes it is all a mystery.

While it’s discouraging to not have a definitive answer, I’m glad your son feels a little better. Sending wishes for continued recovery. I’m sure he is ready for all of this to be over.

Zalco, is there a way you can get a second opinion? Your son seems to be on the upswing but it would be great if you can find the actual cause. I don't know how one goes about getting a second opinion when the patient is in the hospital. Hang in there, things do look promising.

Glad to hear things are improving-- hope they continue in that direction. Love to you and your family!

Answers are nice, but progress is best. So glad your son is on the mend.

Good news, hopefully you will start to decompress, maybe relax or even sleep a bit!

Oakley, Thank you for suggesting a second opinion. Aside from consulting various specialists, we were fortunate to have easy access to second opinions at the hospital where he was and we sent his chart to be reviewed by specialists elsewhere.

So wonderful that he's home!

Oh, good news that he is home. Hope he is back to himself soon, and that you get more info on what happened.

He must be so glad to be home; only you could be gladder. Onward and upward.

So happy to hear he is home. Hopefully, he continues to improve and you all get some answers soon. 🧘🏻‍♀️

So glad to hear that hes’s home!

What happy news! Thrilled he’s home and hope every day is better. ❤️❤️

Glad he is home.

That is good news. I'm sure he feels so much better being back in his own bed, And maybe now you can relax a little. Hopefully his stomach issues subside too.

Oh, wonderful news! It must be such a relief to your family to have him home! I’m so glad to hear he’s recovering, and I hope you get some definitive answers about his recent symptoms.

You must be so relieved to have him home. That's such hopeful news, and I'm glad you have resources to find some answers.

Pancreatitis? I had the same symptoms about a year ago.

Susan, thank you for the suggestion, that was ruled out. I am sorry you went through that.

Hi Zalco, glad he is home. Scary experience and so awful that he has been so weakened. I am assuming/hoping they are ruling out Celiac.

Such good news that your son is home! Hoping his recovery continues and his issues are resolved soon.

Hey, my friend! Just wondering how your son is doing?

I hope he’s feeling better. 🥰

Also sending my best and hoping that your DS is on his way to recovery!

Such a scary time! Wonderful news to hear he is home. Bless you all.

Great that he is home! I hope that he heals up well and thoroughly. Hugs to him. Hugs to you and your family as well. It is quite something what family and friends go through when a loved one is sick.

Hello Everyone, Thank you so much for your continued concern and good wishes. I can finally say the boy is almost totally better. Up until a few days ago, he was still feeling pretty tired and would get cramps in his intestines if he ate a proper meal. Now he is mostly back to normal energy and can eat properly, though he needs to put on weight. He was always on the skinny side, but after an entire week of practically no food, he is 6'5" and 150lbs.

Local, I don't think Celiac Disease was ever under consideration. He was seen by GI and Rheumatology. Neither of those found reason to check on that. I will keep Celiac in mind should we have any future trouble.

In the meantime, he will be tested for the Gilbert's gene next week. The results take a while to come back. I will let you know how that turns out.

PS I discovered through my son being seen by a rheumatologist, that if your fingers bend back away from your palm, you have hypermobility and that is not normal. I thought people like my husband whose fingers stop rigidly at their palm were the weird ones!

I’m so glad he’s doing better! ❤️❤️

Everyone who just looked to see if your fingers bend back away from the palm raise your hand … 🙋‍♀️

Mine bend back. I thought everyone’s did.

How much bending are we talking about? Mine go just past vertical, but not by much.

I put my palm on the wall just to make sure I could actually see what I was doing. Mine bent back about the width of a finger and a half from the wall.

Mine did the same. In the interests of scientific research I just had my husband do it and his fingers went back only about half as much as mine did, but still off vertical.

ETA: just did some reading, and (emphasis mine): "Normal range of motion for these joints should be 90 degrees in both flexion and extension, sometimes a bit more."

I am so glad that your son is home and is feeling better!

Great news, Zalco--thanks for this update!

This is such good news!