Lisa
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Oh, that's great, so Boston is likely an open door for you!! Wonderful!! Don't worry about the wait! I know it will seem like an eternity but it's not, not really and they do need the time to get together to review her case, so don't get anxious about it. All in good time and in the meanwhile, even though Rylee is so sick, if she were so very sick it wouldn't do any good going up there with her like that and you'd have to wait for your local doctors at Cincinnatti to manage to get her better enough to get there. Which, on that account, I think they should speak with Dr. Castells or Akin and ask their advice as to how they can adjust Rylee's meds.
As to your old posts, I haven't a clue there either! Sorry, perhaps Deborah can tell you the answer to that question.
Lisa
As to the singulair doses, I'm sorry, but there is no way I can give you any help with that! First, I'm not a doctor and I don't know medication levels for children, but second, since this is prescription medication and not over the counter, I can't be telling you any kind of doses and the such. You've got to speak with her doctors about this and let them dose her properly. I think that if they know that this is pretty much standard procedure amongst the authorities with us patients this will help them feel that they are moving in the right direction. So, I'm sorry, I wish I could help you with that.
Look, I know how hard it is to see your daughter suffering! I've got two of my own now and it's hard to see them having to face this disease as well! Yet, you've got to understand that even though she seems so sick to you, what you are seeing are the effects of allergic reacting and if her doctors can give her the proper medications, all of that will calm down and she'll go back to being a normal, bouncy kid again. The medicines are the key, for MCAS does relatively little damage to us otherwise. So, be at peace, she'll get better!!
I suggest you give a PM to Kim Gruba and ask her about Brie for both girls are about the same age. Kim is 9 I believe and she's also an MCAS patient, so this is why I think that you and Kim have a bit in common and can talk things out together and make comparisons.
Lisa
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