Hi Linda I finally got around to joining. We have been busy with the web site...trying to get it up and running. We should have it completed by Christmas...I...
Hi Heather et.al., Glad you are joing us. Having this message board is awesome for me after years of isolation. It was just three short years ago that I was...
Hi to all of you, This has been another trying week. Tara called me Sun. evening to ask me to take her to the ER. She has 102 temp, little blood pressure ...
Hi Linda, I'm sorry to hear about Tara being sick. I hope she gets better very soon and that her medications work. Dr. Maclaren should be able to help her....
Hi all, I don't know why I haven't posted yet this question!! I have hypoparathyroidism, Addison's, and pernicious anemia. Recently, since switching to my...
HI Linda, I am so sorry to hear about Tara and her stay in the hospital. What do you mean by C-Diff? I know how hard it is to stay positive. I will keep her in...
Hi Julia, Tara's doctors like her calcium to be between 8.5 and 9.5. Higher levels can cause calcification of the kidneys, a problem Tara already has from the...
Thanks, the information got me thinking. We did increase my steroid dose (prednisone though) to 7.5 mg/day which is equivalent to 30mg/day of cortef. Maybe...
Sorry I haven't posted or responded to all of your questions. Been feeling down lately. Vicki, you asked about C-Diff. That is an abreviation for a longer ...
Hi Linda, Sorry you're feeling under the weather. I haven't been to my endocrinologist yet - I will see her in January (early in Jan.). I was on 5 mg of...
Hi Julia, IVIG is a solution of globulins containing antibodies normally present in adult human blood. The theory , as I understand it, is that because Tara...
Hi Everyone, My son's cornea specialist has suggested we travel to the NIH to see the doctors there for his eye condition. We will also see Dr. Winer ...
Hi Vicki, I wish you and your son well and hope the NIH can be of help to you. I have never taken Tara there although in retrospect I think I should have and I...
Hi Linda, Thanks for the well wishes. I do hope they can help Ryan with his eye problem and give us new info concerning his APS. How is Tara doing? I hope she...
Hi Vicki, When are you taking Ryan to the NIH? Does it take a long time to get an appointment? Do you need a recommendation? Were you also refered to a...
Hi Linda, Ryan has appointments Jan 8&9. It didn't take long to get in. We could have gone earlier in December but Ryan had to finish his finals for school....
Hi Vicki, Becky has seen Dr Winer for 4 1/2 years and been getting PTH. We are about 2 hours away from NIH depending on traffic. Dr Winer and her nurse Karen...
Vicki, Did you ever use the cyclosporine A eye drops on Ryan that Dr Cheri Deal spoke about in her e-mail to me? I forgot to ask in my earler posting. Susan...
Susan, Ryan has tried cyclosporine drops. I am not sure if they were cyclosporine A drops, though. I will have to check with his cornea specialist. Thanks, ...
HI Susan, We are anxious to see Dr. Winer, as well as the eye doctors at the NIH. I am glad to hear you like them so much. We are not sure yet where we will...
Hi Everyone, I have a question for you. Becky has had a persistent cough and started having a sore throat a few days ago. The cough has been a problem at least...
Hi Everyone, We are back from our visit to the NIH. We saw Dr. Winer and she was very nice. She suggested Ryan reduce his cortisone level, change to ...
Hi Vicki, I just recently saw my endo and asked her about my steroid dosage (prednisone) which is now at 7.5 mg (and has been that for a while) - I asked her...
HI Julia, Thank you very much for the info. Your endo sounds as if she in on top of things. I know Ryan's endo here in Houston thinks Prednisone is a better...
Hi Vicki and Julia, Tara takes 30 mg. of hydrocortisone a day and alternates between .75 mcg. and 1 mcg. of Rocaltrol (Vit. D) daily. Ususally she doesn't ...
Hi Linda, Thanks for the information. I wasn't sure how much cortisone Ryan should be taking. So, Tara doesn't take any calcium supplements unless she has...
Hi Vicki, I was going to take Tara to the NIH before we found Dr. Maclaren. As far as calcium supplements I just realized that she does take a Viactive bar...
HI LInda, Yeah, the crazy thing is, my peds endo (i have a different one now) had me on 1.5 mcg of roacaltrol without any calcium supplements for most of my...
Hi Vicki, Yes you are right - you do only absorb 500mg of calcium at a time. That's interesting that he was on so much calcium! That's a lot of "hoarse"...
Hi Julia, Yes, they are "hoarse" pills and he is not fond of taking them. I am glad we were able to see Dr. Winer and get the dosage reduced. Take care, Vicki ...
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