Gilbert's ???

[RoseMary1969]

My son has been ill for quite awhile now.  He is 14.  We have been to a few specialist to rule out various diagnosis and still do not have one.  I have been told by a few of his doctors: "Hmmmm, its actually ok that we don't quite know what is wrong, because all the really bad stuff, we would already know."  That is good, however I still would like to know what we are dealing with.
Here is what we are dealing with.
He is jaundice (noticably in eyes and roof of mouth) - unconjegated hyperbilirubinanemia - with higher than normal levels for Gilbert's for over 6 weeks.  Unchanging levels
Weight loss.  10 pounds in 6 months, however good appetite.
Staff infection only on right side of face.  At first, pcp thought it was shingles, but he didn't have the pain normally associated.  No culture taken. - this was 2 weeks ago.  Now having a flare up, starting at his right ear.  Treating this time with a topical antibiotic instead of liquid.
last December, lymph node on left side of neck removed - changes noted but not malignant
mono at age 8 and recurring
T and A at age 5 due to recurring scarlet fever episodes starting at 15 months of age.
He also has just recently been found to have low IGA.  This was discovered when we were at the hemotologist/oncologist.
We are now going to a pediatric GI doctor tomorrow.
I am trying to make sure I am asking the right questions.  Please help.  

[mikesimon]

Hi there,
I understand your anxiety and frustration. I hope you get some answers soon.

Mike

[RoseMary1969]

Hello.
Well we just got the last set of blood results back and his bilirubin is back up and his white blood cell count is low. Dr wants us back in for more blood work on October 10.
Frustration is my feelings as well as anxiety. Seems like we get a temporary diagnosis then it changes. I try to do smart research so that I can be and ask informed questions however I am lost now with the inconsistent results.
I feel that the doctors are missing something - I just don't know what. Agh and scared.
Rose.

[mikesimon]

Thanks for the update Rosemary.
I wish I could offer more and better suggestions. I will say this though. I think we should trust our instincts and not be intimidated by doctors and the complexity of medicine to the point where we don't speak up and articulate our concerns and ask the questions on our minds. And always insist that your doctor explain the situation so that you UNDERSTAND it. I learned this after going along with whatever a doctor told me for far too long. I'm not like that any longer.

Good luck,
Mike

[RoseMary1969]

Hi Mike,
Quick update.  GI doctor believes it is Gilbert's.  She is more concerned with his weight loss, so now we are monitoring his eating habits and going back in 4 weeks.  
His IGA is low, but not what she considers alarming.
I still find all his various illnesses strange - to me - and of course I am just the mom - its too much to not be interrelated.  
Not sure what we will do in 4 weeks, if the weight loss continues or no weight gain happens, not sure what the next step is.  I appreciate your suggestions and will continue to seek answers.

Rosemary

[mikesimon]

Gilbert's Syndrome is considered a benign condition and if it is determined that only his indirect(unconjugated) bilirubin is elevated I wouldn't be too worried about that. Of course, no Mother wants their child to be jaundiced so I understand your concern.

I would want to know more about his low IgA and whether that might be associated with his infections and his overall condition. I would be sure to focus on his weight loss. I have read that deficient IgA can be associated with malabsorption which can result in weight loss. There is also an association with low IgA and gluten intolerance and celiac disease.

It's good that you are having your Son seen by a gastroenterologist because that is the best specialist to diagnose and treat a child with a deficient IgA.

Good luck Rose Mary and please keep us posted.

Mike