Hi all,
We had a appointment with Rheum. yesterday at sick kids for those who remember us.(Daughter 18 has CNS Lupus affecting the brain,APS, and other sle symptoms)
We had a ultrasound first to check her uterus, she has periods every 2 wks, could be from meds maybe the anticouagulant or antiseizure meds? They are thinking a IUD with progeston we are being referred again to Gyne to sort this out.
She is severely consitpated again, last hospital stay she had 16 enemas and how many litres of peg-lyte through a naso-gastric tube. The meds they had her on (low dose of peg. flakes same as you would have to empty colon for colonoscopy and mineral oil which she chuggs) I put my foot down and had forwarned them I must have a plan this has gone on too long(since August). They realize this problem has slipped through the cracks and G.I. was called and now I have a contact. They gave her medicine to take over the weekend and then if that doesn't work to call them on Sunday and they will admit her for a clean out and start over again! At least it is on March break so no school missed. She has just got back to school from being away since last spring. She takes 2 subject and is home in the afternoon.
Rheum, seems happy with her Lupus progress. Cyclo was done in Feb. she is starting to grow a bit of hair back. She has lost most of her CNS symptoms except for the typical Lupus symtoms such as fatigue and sore joints, headaches etc. All this is looking good for now. They lowered her prednisone to 20 mg. and is starting her on a low dose of Cellcept for three days with a gradual building up.
We are to see Rheum in May----I can't believe they said May we have been on the road to sick kids so often. If only we could get her GI and Gyne issues in check things seem to be looking up, finger crossed.
Sarah is doing well in school, knock on wood, and is back to her little job at the grocery for a few hours just on the weekend. She was so dreadfully ill this summer what a difference the months have meant we are very blessed.
Wish us luck
Sharon
We had a appointment with Rheum. yesterday at sick kids for those who remember us.(Daughter 18 has CNS Lupus affecting the brain,APS, and other sle symptoms)
We had a ultrasound first to check her uterus, she has periods every 2 wks, could be from meds maybe the anticouagulant or antiseizure meds? They are thinking a IUD with progeston we are being referred again to Gyne to sort this out.
She is severely consitpated again, last hospital stay she had 16 enemas and how many litres of peg-lyte through a naso-gastric tube. The meds they had her on (low dose of peg. flakes same as you would have to empty colon for colonoscopy and mineral oil which she chuggs) I put my foot down and had forwarned them I must have a plan this has gone on too long(since August). They realize this problem has slipped through the cracks and G.I. was called and now I have a contact. They gave her medicine to take over the weekend and then if that doesn't work to call them on Sunday and they will admit her for a clean out and start over again! At least it is on March break so no school missed. She has just got back to school from being away since last spring. She takes 2 subject and is home in the afternoon.
Rheum, seems happy with her Lupus progress. Cyclo was done in Feb. she is starting to grow a bit of hair back. She has lost most of her CNS symptoms except for the typical Lupus symtoms such as fatigue and sore joints, headaches etc. All this is looking good for now. They lowered her prednisone to 20 mg. and is starting her on a low dose of Cellcept for three days with a gradual building up.
We are to see Rheum in May----I can't believe they said May we have been on the road to sick kids so often. If only we could get her GI and Gyne issues in check things seem to be looking up, finger crossed.
Sarah is doing well in school, knock on wood, and is back to her little job at the grocery for a few hours just on the weekend. She was so dreadfully ill this summer what a difference the months have meant we are very blessed.
Wish us luck
Sharon