So anyways we went in and saw Dr V yesterday. Sam's weight was down six pounds on her scale since december. I knew that he was losing weight but I had no idea how bad it was. He looked ok to Dr V. She said he was "fairly hydrated", and that I needed to continue to push fluids. He did have some swollen lymph nodes so we know that there is definitely an illness going on, but she wasn't able to find anything, ears throat, sinus' etc. So now we are just praying that he will get better, this diarrhea will go away, and that he will start eating again.
We are also trying to get a second opion through Mass General Coordinated Care clinic, which apparently is a whole group of specialists who meet together as a team to determine your care. So if you see GI, hematology, immunology, and endocrinology like Sam, those four specialists would have meetings to discuss your child and determine what the best plan was. And then when you go into appointments they are all there, so you don't have several separate appointments. So we are hoping to get in there very soon. Please pray that God opens the doors for this to happen. For now enjoy this super old pic of my handsome boy. I just haven't taken any recent this week, and I am just plain old worn out. This week has really been tough for me, and I have been struggling with feeling alone. But isn't he just gorgeous?
1 comment:
You must be at your wits end! Doctors can say such silly things sometimes.
Ivy had alot of the same symptoms. I think it has alot to do with the immunological side of things. having said that, she was tested for coeliacs and while it came up negative, there were some markers. That was enough for us and we switched her onto a gluten and lactose free diet. (We already knew about the lactose).
It's not perfect but oh my goodness, it diid help alot.
She still has loose bowel movements but the bleeding and the weight loss and the stomach pain all largely went away.
I'm not saying this is the answer for your Sam (because I really, really hate it when people give me advice when they don't know the whole story) but perhaps, something you might consider for you little guy.
Also; I read somewhere that the gut is often affected by a deficient immune system and also in auto immune diseases, many have found that cutting out gluten and wheat has helped, despite a negative coeliacs result.
I hope you get answers soon and no more brick walls.
Brick walls are no fun when you are constantly banging your head on one.
Hang in there, friend.
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