Prayers & hugs on the way.
Many docs don't have the best bedside manner. I have found that I often worry about lack of information, the rushed way things are conveyed and of course, I expect the worst. Usually it is not the worst. I hope that is the situation for you.
Peace.
Hugs and prayers from here, too. I hope it isn't serious.emerald - I hope everything turns out okay, and that Mason is alright.I'll say a prayer for Mason. I know how worried you must be. Try to get some sleep so you will have enough energy for tomorrow.
I know this is probably the wrong spot for this, but it really isn't autism related at all.
Just me needing to talk. Mason has been having some problems at school, one of them is napping. I called all his dr's just because I wasn't sure if this was phyisical, behavioral, related to epilepsy, etc. So to eliminate some things his neuro sent us to have lab work done. Well turns out Mason's ammonia levels are elevated. She says this is sometimes a sign of liver damage. And because Mason is on a seizure med that can cause liver damage we now need to have further testing done. She wanted us to drive down to Children's Hospital tonight and start testing, and of course I can't even get a hold of my husband, (what good are cell phones??) So I asked her if it would make a difference if it was tonight or tomorrow morning...she said no, if we come in right away tomorrow, it won't make a difference.
I'm trying to tell myself this is nothing, but the urgency in their voice is kind of scaring me...I asked if this is something that is long term or treatable, and the only answer she gave me is "we'll talk about all of this tomorrow." So now I have that pit in my stomach--I'm sure you all know what I'm talking about.
So anyway, thanks for listening. Wish us luck tomorrow. I will keep you all posted.
Wow, I really hope it turns out to be something more minor and I can imagine how you must be feeling! Keep us updated on how everything goes. Ill be praying for all of you.
I am so glad that he does not have liver damage. I do hope you get someSo they want to give it a few days and retest the ammonia levels.
I asked if it is normal for someone to have elevated levels that just go back down and she said no, but she wants to see if they go up in a few days. Then she said she would recommend us to another doctor if they get higher. I asked if they go down do we just leave it alone and she said yes. If they go back down there isn't anything to worry about. That kind of confused me too, but I guess she is right. What can we do, if they go back to normal, I guess.
I did ask if the hospital up here might have screwed up the test somehow and got a false reading, and she said no because they did redo the test down there today also. She also said there was a mineral supplement we could start him on, but she thought it would just be better to wait the few days and redo the ammonia test first...I also asked if he could have somehow gotten into something that contained ammonia and that might be the reason and she said no too...that it's a different kind of ammonia testing that they were doing...can't really remember all the details about what she said, but I just remember her saying he couldn't have drank anything with ammonia and gotten the reading he did...so I guess that's a relief.
I guess the plus side is, it's not liver damage. But I just hate this waiting thing...I swear I already have an ulcer from all the worrying I do all the time, but what else can I do, right? And Mason did have a good day today. He got a little wild here and there with all the waiting around we had to do, but we took him to the playground for a little while and took him to the caf. to eat french fries, twice...the only food I know I can give him at any given moment to distract him for awhile, lol.
So that's where we are at now...not much of an update, but it's definitely better than bad news!! Thanks again for all the support everyone!
Im happy to hear his liver is ok, what a relief! Thats strange that they dont know whats causing it tho, that must be hard wondering whats going on. His doctors sound like thier on top of things so thats really good. I hope you guys get some answers soon and keep us updated
Luckily when dh got home, he was able to get a hold of a few ppl from work and let them know he won't be in tomorrow so he can go with us! I hate going to the dr's alone, he is so much better at asking the right questions. And not to mention I hate driving in bigger cities!
Donny's Mom--Mason takes Depakote too, for his seizures. I'm kind of thinking that if something is going on, that it can't be too serious right now, because he did just have his normal labs done, and I think it's the ALT test that checks the liver and that came back fine a few weeks ago. I am kind of thinking if something was really wrong it would have showed up on there too...but this is just my deduction of things. I also was doing a little google and found that sometimes these raised ammonia levels can cause disruptive behavior! We have definitely been having more disruptive behavior than norm!
Now that I have spent the night worrying about it, I'm just wondering what they are going to do with the Depakote. We have started him on new seizure meds but are nowhere near the dosage we need yet, for seizure control. Not that the Depakote was doing much anymore, but I'm sure it helps more than no meds. UGH!
Okay, enough worrying for the night...the morning will be here soon enough! Thanks again guys for all your prayers!! You all mean so much to me!
Oh wow - I am sooo thrilled his liver is fine !