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Discussion Starter · #1 ·
Hi All,

What a week, Sarah saw her first specialist on the adult side, she will be 18 on Sunday(can't believe that either). She was a fantastic neurologist, I was actually more inpressed by her than the ones we saw at sick kids. She said that she wants Sarah to stay on tinzaprin at least 6 months and then maybe change to coumadin or warfarin for a blood thinner. She said that even though she had 3 negative APS that doesn't mean she doesn't have it, there are false negatives( Sick Kids wanted her off bld thinners). I was actually glad to here this as I didn't want Sarah to go through another clott (she had a massive brain clott to her sagital sinus). She spent a long time with her and had a good plan.

Then Wednesday Sarah had her seventh and last chemo. Her balance is stable and they were happy with her progress so far. The floor were she has her chemo gave her a send off card,stuffed bear and some block buster gift cards. She saw Rhem and they are going to start her next appt. on imuran and cellcept (anyone have any info to share?) She will be transitioned from this speciality last in June at then go to Toronto Western. They made sure that she was refered again to Toronto general to see Gastro as her colon has been affected by lupus and suffers and been hospitalized with severe consipation. She was also referred again to gyne. as she has her period every other week. They are stumped what to to as they want her off estrogen because of clotts but then how do you regulate them?

She was pretty unwell yesterday.

Today she is at Sick Kids today Neuro Psyc. The testing is all day 9a.m. to 4 p.m. They will see what deficits she has with her short term memory and see then how they can help her. I hope she is not to sick.

Hope to here from anyone with some infor

Sharon
 

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Hi,

I'm really glad your daughter had a good appointment.

And congratulations to her for her 18th! What an achievement:p .

It sounds like a very good appointment. I agree with the doc that negative results to the APS doesn't exclude it, so this doctor sound clued up:rolleyes: . She is probably right about the pill too - it is a risk , and it sounds like it isn't helping her anyway if she is still bleeding every 2 weeks. Hopefully gynae will have some ideas. Some people find the mirena coil works well at stopping bleeding (it has a progesterone core to it), but given that your daughter is imminosupressed and also presumably has never been pregnant, this may not be an option for her. Maybe gynae will consider endometrial ablation? Let us know....

I don't take celcept, but I do take azathioprine. I love it. I'm not as severely affected by lupus as your daughter, but the imuran has really improved my standard of living, and I have no side effects other than a little nausea after taking the meds. It has changed my life, no exageration.

Hope you all have better days ahead,

X C X
 

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Discussion Starter · #3 ·
Thanks Cath,

The merina was suggested, but Rheum was hesitant to introduce a foreign body, also the bleeding during insertion because she is on a thinner. I guess we wait and see. I am to email the Doctor and remind them about this. She had a great 18th birthday and loved my oreo cheesecake.

Sharon

It will be nice to some hair grow back once the chemo is out her system.
 

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18 what a nice age !
Happy Birthday to Sarah!
I am glad your appointment went well.
Good luck with future testings.
 

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Happy 18th to her, and what a great birthday present to be done with the chemo! Thanks for the update, and I hope things continue to improve!

:party: :hapbirth: :party:

sf
 
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