Hugs. Our prayers continue.
I’m so sorry @TiaG. I hope catching it early will help minimize the impact it has on your family’s lives.
My thoughts are with Samson. I hope the treatment starts working quickly. He’s so lucky to have such wonderful, attentive parents who caught the symptoms early.
So sorry to hear that! Hopefully he recovers quickly
I can imagine he hates that. Not being able to do these basic things is already awful for adults, I can’t imagine what that’s like for a little boy who is supposed to play and run around freely.
Dear @TiaG, I just spent a couple of hours reading up on it. I see a good number of hopeful aspects:
There is a relatively small number of young kids included in the present studies, so the lingering deficits documented in many patients may well not be characteristic of younger kids, who typically recover much faster of similar types of problems
Seizures appear to be an early sign specifically for very young patients (the younger, the earlier the presentation). This is a very good sign because it means you probably caught it very early on
Low percentage of relapses compared to similar diseases.
He is clearly getting top notch treatment (his present treatment is the one typically recommended by most sources as the first line), and his diagnosis (a difficult one) was very swift, which is indicative of a very good team.
Do be aware that there are mainstream second line treatment recommendations if no improvement is seen. I am hoping that, because he is so young and was caught so early, you may well avoid the whole psychiatric side of the disease. If you do get into a bit of it, it appears important to deal with psychiatrists who have experience in the disease and who are involved early on, in a well coordinated care team: this tells me that, if you notice increasing signs ( what only his parents can see) you may want to insist on having a psychiatrist with the right background attending as well early on. There is mention in the literarure that high potency antipsychotics should be avoided.
We all, including Kaelan, feel miserable that we cannot provide any help from here. Let us know if you want help in some specific research while you are kept busy at the hospital.
May God bless him and protect him and all your family.
I’m so sorry to hear this, @TiaG. It sounds like you are getting the best care, and I hope for the best outcome possible.
You will do the best you can. You’re so educated and informed about diabetes, and on top of Samson’s care. You’ll do the best you can with your resources. And you’ve got a cheerleading team here to help in any way possible. Send the word if we can do something to help. I know there are folks (myself included) who are either in the Bay Area often or from the Bay Area who could lend a hand. Need your bathroom cleaned or your lawn mowed or flowers delivered or really most anything, let me know.
We all send our love and support your way.
You and your family have been on my mind, and weighing heavily on my heart, since you posted your initial thread. I sincerely hope that you’ve been able to get some rest and that Samson is comfortable and dealing as well as can be expected to his current environment. I hope you guys were able to have some simblance of a Thanksgiving.
My heart truly hurts for Samson and his mom and dad.
As always, thinking of you all every moment of every day.
@ClaudnDaye, you read my mind again… and said it better again… But I’ll still second it. I was also thinking of Samson and your family this morning and hope this finds you all well.
@TiaG I am just catching up with these posts and wanted to let you know that Samson and your family are in my heart and thoughts. I am sending love and strength your way - Jessica