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Type: Posts; User: Leahc

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    I'm so sorry about the situation that you're in. ...

    I'm so sorry about the situation that you're in. I am fairly new to lupus (almost 3 years). My son was 13 when he was admitted to the hospital in renal failure due to lupus. His symptoms started...
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    My son just finished his infusions of methelpred....

    My son just finished his infusions of methelpred. a few months ago. He did just fine with them. Good luck!
  3. Thread: Allergies???

    by Leahc
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    Hard to narrow down what he'd be allergic to...

    Hard to narrow down what he'd be allergic to without a skin test because we live in the country, on a farm. Last winter he ended up on a nasal steriod, which I don't think worked. We gave up and...
  4. Thread: Allergies???

    by Leahc
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    Allergies???

    So, Monday morning Dylan woke up for school and he was really congested, had a scratchy throat and said that his ear hurt a little. He was outside with family a good portion of Sunday. So I called...
  5. Thread: Time Flies!!!

    by Leahc
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    Time Flies!!!

    Two years ago tomorrow, our world got thrown into this tailspin called Lupus. I can't believe what we as a family has been thru let alone what all Dylan has been thru. We've learned ALOT and...
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    Dermatology appt.

    Tomorrow morning Dylan will see a dermatologist for the first time. His nephrologist wants him to have them check his moles. Is there any questions that I should be asking?
  7. Thread: I'm back!

    by Leahc
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    I'm back!

    Hey guys! Sorry I've been gone for awhile, we've had a busy summer around here. After Dylan's radiothon, we met with his Nephrologist and she kept asking if we realized just how sick he really...
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    When Dylan was released from the hospital in Oct...

    When Dylan was released from the hospital in Oct 2011, he came home on 80mg. He is currently taking 15mg. I'm hoping that they will lower it again but he's doing good so really don't wanna rock the...
  9. Thread: Radiothon

    by Leahc
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    It will be streaming live on two radio stations. ...

    It will be streaming live on two radio stations. They sent me some flyers to put up in our area and I had him put one up at his school. I agree Steve that it will do him good and give him...
  10. Thread: Radiothon

    by Leahc
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    Radiothon

    So a few weeks ago I received a letter in the mail from the childrens hospital that Dylan was in and I thought that it was something about his upcoming labs, but it was a letter asking us to be part...
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    My son has SLE but nobody else in the family does.

    My son has SLE but nobody else in the family does.
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    My son goes to the UW Madison, but he goes to the...

    My son goes to the UW Madison, but he goes to the American Family Childrens hospital there. LOVE his dr's!!! Can't help you with the doctors in the main hospital, but if they're anything like the...
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    Okay, so let me get this straight, you're a...

    Okay, so let me get this straight, you're a natural dark blonde and because you have some "natural highlighting" you are retouching your roots and then putting highlights in? If this is the case,...
  14. Hope your daughter is feeling better. It's hard...

    Hope your daughter is feeling better. It's hard to watch them go through this disease. It can be so unforgiving. My 12 yr. old daughter is due to have her third and final gardisil shot this Monday...
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    That's great news!!!!

    That's great news!!!!
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    Hoping for the best

    Just got back from taking Dylan to after hours. Came home from school with a temp of 102.7. He has had some issues with congestion for the past three months. Did doxicyclin (sp?), got better then...
  17. My son takes 1000mg in the morning and 750mg in...

    My son takes 1000mg in the morning and 750mg in the evening of cellcept. He's been at that dose for just about a year.
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    We're at about 32 degrees here in Wisconsin. ...

    We're at about 32 degrees here in Wisconsin. Talking about the sun setting at 3:30, Rob, when the time changed my kids were getting on the bus in the dark (6:45 am), now it's just starting to get...
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    We have slacked on watching his sodium and going...

    We have slacked on watching his sodium and going into winter is really gonna be tough trying to get to stay somewhat active, but I guess he's gonna have to become more aware of his own life and take...
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    Biopsy results!!!!

    Well, Dylan's nephrologist called tonight to give us the results of his recent biopsy. Very little activity from the lupus and the TMA, his kidneys have really taken a beating. He was so sick in...
  21. Thread: Biopsy

    by Leahc
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    Well, after an extremely long day, we are finally...

    Well, after an extremely long day, we are finally home! Biopsy went good. No issues! His labs were good before hand. WC 5.1, creatinine 1.72, platelets 212, hematocrit and hemoglobin were both...
  22. Thread: Biopsy

    by Leahc
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    Biopsy

    Hi everyone!!! Hope all is well and wishing you all happy holidays! So, on Monday Dylan will have his third renal biopsy. This one will tell us ALOT!!! He has had good labs for the past 6 months...
  23. Thread: Lupie Hair

    by Leahc
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    Saw this post and had to jump in. I'm a stylist,...

    Saw this post and had to jump in. I'm a stylist, and as for your hair breaking off, you need protein. It'll strengthen your hair and keep it from doing that. I've been a stylist for 17 years ans...
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    Dylan had his infusions yesterday and while they...

    Dylan had his infusions yesterday and while they were waiting for pharmacy to tube it to day treatment, I asked about it cuz thats what he gets, methelpred, but his is a big bag of it and not in the...
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    Doreen, I just read your post about chemo. Dylan...

    Doreen, I just read your post about chemo. Dylan also did chemo and they finally quit that about Jan. and switched him to celcept. He takes 1000mg in the a.m and 750mg in the evening. He seemed...
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