Hi. I'm online and happy to answer your question today.
I'm sorry to hear about all the difficulties your daughter is having. As a father of 5 myself....3 of them daughters, I know what you are going through.
Thank you. It's difficult to get any information from my daughter in reference to symptoms as she has very limited speech, MD visits are stressful for her.
Since you have already gone to two different doctors with no lasting solution, I think you should consult with an allergist. You might even want to take a bigger step and head to a large University Teaching Hospital. This is what I did when my middle daughter had strange GI issues that my local colleagues really couldn't figure out.
I can image that they would be...and this may be one of the reasons that her doctors and just trying the first thing that comes into their mind and not really, it seems, getting to the root of the issue....
. At an institution like that you could be evaluated and treated by a team of sub-specialists who are at the cutting edge of their respective fields. The best thing about these large teaching hospitals is that consultations are available with Professors and leaders in their field by just walking a few steps down the hall.
The Mayo Clinic in Rochester, Minnesota is an excellent example of just such a place as this. That being said there are many excellent teaching hospitals all across the country and I am sure that there is one near you.
I took my daughter to the Mayo clinic and problem that had been going on for 6 months was diagnosed in 3 days and she was better in a week....
I don't think I would stress your daughter by going back to these same doctors....
I was hoping for a quick fix, as simple MD visits are daunting, but unfortunately not possible.
A quick fix would be nice and if that was to be the case with this current issue the therapy these doctors have tried would have cleared things up. And I agree -- a visit to a large medical center would be even more stressful for your daughter than a visit to a private office......but, hopefully the additional stress would lead to a final solution.
Since the prednisone helped it is most likely an allergic, or some other sort of systemic immune response, issue....but since it is coming back now that the prednisone is being tapered the root cause has not been addressed...as you know.
And it seems like you are going to need a MD that can think outside of the box and spend the extra timed needed with your daughter to figure things out. Places like the Mayo Clinic are great at that sort of thing.
Sorry I can't give you a quick and easy solution here using chat.....
But, as a parent, I can tell you that I have walked a short distance in your shoes.....although my daughers issues were, on the whole, not as severe as what you are dealing with on a daily basis. You are to be commended :)
We live in NY so have access to medical institutions. And no it's not easy being green. Thank you
I trained in NYC and lived in the Village for a number of years. I wish you and your daughter the best.
I hope this information was helpful for you. But I do work for tips so I want to make sure you are happy with me before rating me. If you have another question on this or a related issue feel free to fire away. And please let me know if the rating system gives you any troubles. Thanks in advance, Dr. Rick MD FACS