Thank you for the replies. My daughter, Kendall is 17. I know I don’t have head circumference info…I guess I could get from pedi, will check on that. I love what Dr. Francomano said about diamox, unfortunately my daughters dr here in SA doesn’t feel that way! It’s too bad the doctors we have finally found are so far away. What’s the problem with Texas!? Sadly after all Kendall has been through we still do not have support here at home. Kendall has seen several hematologists. She has mild abnormalities that lean towards a clotting issue, but nothing definite. I still think there is something there and hope to get her worked up with a more EDS knowledgeable hematologist some day soon. BTW one of her complications following her neuro surgery in November was an unidentified internal bleed. led to a hemaglobin of 2.3, thanks to God she miraculously survived this. I guess this scares people away from anticoagulating her!! She is being checked for type IV but she really doesn’t fit that mold. Oh – also seeing neuro-opthamologist next week. We met her while in hospital. Thankfully she was able to validate what I had been telling the hospitalists all along – you don’t need a swollen optic nerve to have high pressure. I’m printing info on EDS eyes to take on this appt.
Dr. Diana, I’m curious how could you no longer need diamox? What changed? Kendall is taking 250mg twice day. We made the same mistake of increasing it too, I also learned it was the acidity causing it not to work, not that she needed more. The problem for us is, here at home I’m just a mom that has spent the last 4 years trying to figure all this out. When we meet doctors that have no clue they just aren’t comfortable with a mom giving them advice on how to treat their patient. Then, when I finally convince them to contact our out of state doctors they just don’t buy in to all these theories.
One more thought…Kendall at one time was on 3-4 liters of fluids daily, I really saw this helping. Unfortunately her TX doctors don’t buy into this treatment either! We finally convinced them to try a liter a week. I see she needs more but I don’t think we’ll get there, instead she ends up in the hospital every couple of weeks. Dr. Diana, what’s your take on IV fluids for dysautonomia symptoms?