On August 13, 2014 we went and saw the Infectious Disease Doctor, it was a very long 2 hour visit with two Doctors. We went over Lilly's Medical History and it was concluded that they felt Lilly has no infectious disease.
The Doctors felt that other then Lilly's high ANA (inflammation Levels) she is a healthy kid, she has an obvious Auto Immune Disorder, but nothing they would consider as a serious condition at this time.
They did suggest a few things...
Based on Lilly's reoccurring Strep infections and her very large tonsil we should see a ENT, we should consider having her tonsils removed to prevent her from further strep infections and also this can clear up some of her other symptoms... such as her not sleeping well at night and tummy aches.
See a GI doctor to have her stomach checked out. Look into Auto Immune disorders in the Stomach area.
See a Dermatologist about the loss of pigment on her skin on her thigh, they felt it was most likely a fungus that caused this and gave us a medicated cream to put on for the next month.
Keep seeing the Oncologist / Hematologist and hope he will find out what type of Auto Immune Disorder she has....
Ok so David and I are soooo done with all these doctors appointments and tests, Lilly is sooo done with all of this too. So this is what we have decided to do...
We will see the ENT (ear nose throat) Doctor and have him look over Lilly's and get his opinion. If needed we will have her tonsils remove.
We will see the GI Doctor and get his Opinion on what is going on with her tummy.
We will see the Neurologist next month to see what the results are from the Blood test and Urine Test and what his opinion is.
Finally we will see Dr. Waseem (Hematologist/ Oncologist), he has already decided to slow down and give Lilly a break, so we will do follow ups every few months.
After all of the above, if we find an answer then GREAT!!! If not we are going to stop and give Lilly a break!!
I am working from home and Logan and Lilly will be home schooled, David and I have worked really hard at keeping Lilly away from sick people and have been able to keep her from getting sick so often. She is still having joint pain that we treat when she has flair ups.
So that's where we are at this point, still no answers... frustrated that Doctors tell us something is wrong but they cant figure out what it is...
The Doctors felt that other then Lilly's high ANA (inflammation Levels) she is a healthy kid, she has an obvious Auto Immune Disorder, but nothing they would consider as a serious condition at this time.
They did suggest a few things...
Based on Lilly's reoccurring Strep infections and her very large tonsil we should see a ENT, we should consider having her tonsils removed to prevent her from further strep infections and also this can clear up some of her other symptoms... such as her not sleeping well at night and tummy aches.
See a GI doctor to have her stomach checked out. Look into Auto Immune disorders in the Stomach area.
See a Dermatologist about the loss of pigment on her skin on her thigh, they felt it was most likely a fungus that caused this and gave us a medicated cream to put on for the next month.
Keep seeing the Oncologist / Hematologist and hope he will find out what type of Auto Immune Disorder she has....
Ok so David and I are soooo done with all these doctors appointments and tests, Lilly is sooo done with all of this too. So this is what we have decided to do...
We will see the ENT (ear nose throat) Doctor and have him look over Lilly's and get his opinion. If needed we will have her tonsils remove.
We will see the GI Doctor and get his Opinion on what is going on with her tummy.
We will see the Neurologist next month to see what the results are from the Blood test and Urine Test and what his opinion is.
Finally we will see Dr. Waseem (Hematologist/ Oncologist), he has already decided to slow down and give Lilly a break, so we will do follow ups every few months.
After all of the above, if we find an answer then GREAT!!! If not we are going to stop and give Lilly a break!!
I am working from home and Logan and Lilly will be home schooled, David and I have worked really hard at keeping Lilly away from sick people and have been able to keep her from getting sick so often. She is still having joint pain that we treat when she has flair ups.
So that's where we are at this point, still no answers... frustrated that Doctors tell us something is wrong but they cant figure out what it is...
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