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Thread: Diagnosed 11-year-old

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    Default Diagnosed 11-year-old

    I'm Ana's mom, my name is Carrie. Ana is my precious daughter. She was diagnosed with Wegener's on Sept 27th, 2016. She just had her birthday a couple of days ago, here on the hospital, and now she's 12. We've been living in the hospital since Sept 24th, so we're going on 5 weeks now.

    The disease has taken 25% of her kidneys and we were fighting for another 35%. Protein in urine has gotten much worse since our arrival. Creatinine also hasn't improved. Tomorrow she will have another kidney biopsy to see if the disease is still actively attacking her kidneys.

    She's had two rituximab infusions so far with decent results. Her MPO antibodies were off the charts and now they are 3 (I'm told 0.3 is normal).

    If the disease is still attacking her kidneys they plan to start Cytoxan. This is very sad for us because she hasn't had a period yet and so they can't save any eggs in case of infertility (I'm told infertility is a possible side effect).

    Is there another powerful drug that would be better than Cytoxan? Should we try IV steroids again? So many questions, so little time, we must move fast.

    Thank you to all who are concerned for my girl. She is the biggest sweetheart you can imagine. So full of love for all. So ready to live life to its fullest.


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    So sorry to hear about your daughter. The only major advise I can give you is before they pull the trigger on Cytoxin, find a Vasculitis Specialist and make SURE that Cytoxin is the only option left.I hope things continue to improve so that she can have an easier battle with this awful disease.
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


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    Some of us found plasma exchanges crucial to our survival and helping save our kidneys too. Is that an option for her? RTX is usually the first choice treatment but it can take awhile to work and then CTX is usally given. But there are some other second line drugs often given for maintenance that might be helpful like AZA, MTX, and cellcept. Use the Vasculitis foundation list for a free consult for her.

    PS Kidneys often can and do some times recover a lot> It took me several years but my kidney function was near normal at last check up.
    Last edited by drz; 11-04-2016 at 01:26 PM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Thank you for your replies! We have done a blood transfusion and an albumin transfusion. Drz, she was given a rituximab infusion & high dose steroids for 5 days via IV after diagnosis, & she's been on daily prenizone (sp?) since. Should she have also gotten Cytoxan at the beginning, since it takes so long for the rituximab to kick in, or maybe one of the other maintenance drugs? I'm thankful she was diagnosed when she was but I wonder how much experience her pediatric nephrologists have with Wegs. They are brilliant, no doubt, it's just Wegs in kids is so rare. My biggest fear, perhaps, is that they will not intervene enough, since this disease is so unpredictably beastly. Thank you again.


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    Hi Carrie, Here's hoping you and Ana get the treatment she needs.

    I have a few suggestions for you:

    1. Ask the nephrologist how many GPA patients they see in a year. If it's a small number, ask them to consult with a Vasculitis specialist or refer you to one (if it's convenient). Cleveland Clinic (where I go), Mayo, Johns Hopkins, and some others in the northeast are good to great and have lots of experience.
    2. Ask your doctors questions about their treatment plan - how do the drugs work, common side effects, how soon before improvement should occur, what to do if side effects occur.
    3. Don't discount odd symptoms. This disease is sneaky and shows up in different ways. If something abnormal shows up, contact your doctor.
    4. Keep records of doctor visits (get a written after visit summary), medications, symptoms (new or different), and lab results (I keep mine in an Excel spreadsheet). Take these with you when you see a doctor (especially a new one).
    5. Before you visit a doctor, write a list of questions and concerns so you don't forget anything - and make sure the doc takes the time to address all your concerns during the appointment. (My docs seem to appreciate my preparation.)

    I was on cytoxan for 16 months at disease onset. Make sure your daughter stays well-hydrated while on it. The metabolates are hard on the bladder. Also make sure she urinates whenever she feels the urge so the metabolates are expelled frequently.

    There are some women of childbearing age that have been on cytoxan who are in this forum. A forum search of cytoxan and fertility should lead you to some useful info.

    Cytoxan and rituximab are the two primary induction therapy immunosuppressants. It seems that azathioprine (Immuran) and methotrexate are better for maintenance. Prednisone is an anti-inflammatory. Its role is to help the patient to feel better. Ask your doctor about the impact of prednisone on your daughter's bones as long-term high dosages tend to cause the body to lose calcium which can lead to osteopenia or osteoporosis. I take daily calcium and vitamin D supplements and have maintained stable bone density.

    Encourage your daughter to be as physically active as she can handle. I hope she doesn't forget to be a kid just because she's sick. With effective treatment and some willpower, she can lead a normal life. It may take some time to get there though.

    Good luck!!
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Thank you for the thoughtful response, Pete. I will truly appreciate your concern and plan to take action on your advice.


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    Welcome to the forum, Carrie, though I'm truly sorry you have a reason to be here. It is especially heartbreaking to hear of one so young being diagnosed and especially having kidney involvement, too. There is someone else here with a young daughter, a little older now, who was dx'd and is doing pretty well. If she sees this she will no doubt respond to your post.
    As for infertility, I have heard of some women who went on to have babies after being on Cytoxan. So take heart, though I know it is troubling.

    Good advice has been given above. If you will tell us where you live or where Ana is being treated, maybe someone will know of a good pediatric nephrologist with WG experience in your area, or other WG docs who can suggest one. WG does seem to manifest a little differently in children, from what I've seen on this forum. Not to doubt your docs, they may be fine. They could have given her CTX initially along with the RTX, but probably had good reasons for not doing so, including the fertility issue and the overall harshness of CTX. If her lab numbers don't improve soon, I'd follow her doc's suggestion to start CTX, along with the RTX, and it might not have to be for a very long time before improvement is shown. Best wishes and hugs to both of you!
    Anne, dx'ed April 2011

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    Thank you, Annekat. I'm getting the sense that we will need to try the Cytoxan, and do it soon. She's laying in the sedation room right now for her second biopsy, but I feel like I can already tell you the disease is advancing again. We will know for sure soon. Thank you again for your help.


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    Hey, I have a daughter with pediatric-onset Wegener's, and am connected with many other parents. I think we can be a good resource for you - I will PM you my contact info

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    Hi Carrie,
    I'm so very sorry your daughter has this disease!
    I feel for you and her especially because I have a 12 year old daughter (but I'm the one with Weg in our family) I'm sure you would switch places with her in a heartbeat!
    The only other thing I can think to add is to ask if she's on bactrim?
    Its an antibiotic but I understand it can have a dual purpose in both fighting off lung infection in immune suppressed patients but also has some sort of role in fighting Weg GPA too. I don't know why that is.
    Has anyone else ever heard or read about that?

    Ill be praying for healing for your daughter and wisdom for her doctors.
    Please let her know she is not alone. Neither are you.
    Sending hugs from your new Weg family.

    Gabrielle
    Last edited by Gab122; 11-04-2016 at 07:53 AM.
    Trust in the Lord with all your heart
    and lean not on your own understanding;
    in all your ways submit to him,
    and he will make your paths straight.
    Proverbs 3: 5-6

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