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Discussion Starter · #1 ·
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
 

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WOw - sounds pretty good all in all.

As for her periods coming every two weeks, I would say a likely suspect is anovulation (no ovulation can lead to no periods - OR it can lead to a period every 2 weeks). I would be sure to inquire to her rheumy about that.

Hopefully the GI doctor will come up with a good solution. I'm very glad you are getting all the specialists involved that need to be.
 

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Hello Sharon, Yes, I remember you both. Glad to hear it is a little better. Hope your Daughter is over the balance problems she had and glad to hear the hair is growing a bit.
x Lola
 

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I am gald things are going well for you. I have been think of you as I also have CNS Lupus. We have chatted before about treatment. The Cyclo seems to have worked for you which is fantastic and to get the prendisone down is is wonderful. Remember to take one day slowly at a time and to rest often.

Best wishes
Peta
 

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Discussion Starter · #5 ·
Thanks everyone,

I just can't believe she was so ill and now she some normalsy to her life. Today she said her ankle is quite swollen, I guess she will live with those bumps, but lupus will always be a part of her life. She is a real trouper and today she was off to Toronto with a friend to go shopping. She just wants to be a normal teenager.

Sharon
 

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I'm so pleased your daughter is getting some normality into her life.
You must have wondered sometimes if it would ever happen.

Congratulations and hats off to you both for weathering this storm together.:foryou:
Take care
 

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Discussion Starter · #7 ·
Thanks BigSis,

I guess I will never what will happen next, started the cellcept yesterday low dose. Gosh, it has been quite a year.

Sharon
 

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Im very pleased to hear that your daughter seems to be responding so well to the treatment:) Thank you for posting and updating us.

I hope Sarah goes from strength to strength and that 2007 soon becomes just a bad memory:hug:

Take care of you as well
Lots of love
Joan:rose:
 

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Hi there,

Nice of you to come back in and tell us how Sarah is doing. I think about her often having CNS myself and just the thought of such a young person going through all that is heart wrenching.

I am so glad that things seem to be settling down for her. It unfortunately takes some time with brain issues as you now realise :( I hope that she is uplifted by the fact that she can now start to do some things that have been impossible for her last year. It does make you appreciate the small stuff, a simple outing or shopping trip can cheer you up no end.

May things get better and better for her. You are a great Mum and have been and continue to be a good advocate for her health :foryou:

love
Lily
 

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Hi Sharon,

Yes, I too remember you both and I'm really happy to hear that things seem to have stabilised a bit.

I truly hope this continues and that the longterm treatment plan allows her to live as normal a teenage life as possible.

hus to both of you and many warm wishes,
Katharine
 

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Sharon,

I am so glad to hear how much better your daughter is doing. Have the gyne issues started since the cyclo? either way you might need to push the doctor to figure it out and not let them just blame it on the disease or the treatment for the lupus. I totally understand your frustration on the GI side of things. I have other GI issues but somehow my combo of meds keeps my bowel movements semi normal which they shouldn't be. There are medications available to keep things moving.

I imagine she was in sheer joy at going out with her friends and feeling normal. I experienced some "normal" things in the past few months that I hadn't been able to do in almost 5 years, it was very freeing for me.

Take care,
Karen
 
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