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Thread: Low white cell counts and red cell count with seizure medications

  1. #11

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    Rose what a blessing you are on here and so full of information!!
    You are right about the Prednisone!! I was told for every pill she has taken each one takes 14 days to get out of her system that will be over 420 days to get out ... Long shelf life! Hematology knew I wasn't happy about starting it, but not good to keep getting blood either. Amy's was needing blood two to three times a week after she left the hospital.

    Amy is using Prednisone for: Autoimmune hemolytic anemia (AIHA) is caused by antibody-induced hemolysis (the premature destruction of circulating red blood cells); usually idiopathic, it is also associated with infection, lymphoproliferative disorders, and autoimmune diseases.
    Amy has been tested and retested for all the things that (AIHA) can be caused from and all tests come back neg. Prednisone is one of the first things they try to help reverse what is happening with the destruction of circulating red blood cells.

    The next step is to try a IV medication called Rituximab destroys both normal and malignant B cells that have CD20 on their surfaces, and is therefore used to treat diseases which are characterized by having too many B cells, overactive B cells, or dysfunctional B cells. We had no time to wait she was losing blood fast she was down to 6.1

    I always say you give to one side of your body that is in need just to take away from the other side of your body that is just as needy ... I feel this cycle all the time with her seizure medications. I just keep telling Amy's Doctor that God just has a really good plan for him in solving Amy's health case and that he pick him just for Amy!!
    God doesn't cause our sickness nor our illnesses because he is so loving, kind and gentle!!!

    Amy gets plenty of fresh fruit drinks and fresh fruit too!!! It’s the veg. that I can’t get her to eat. Cottage cheese I love it she does not . yogurts she loves but not in her drinks. And drinking we always stay away from soda I'm a water drinking and so is she but she love the G drinks !! drinking is never the problem :)

    Thanks for reading and listening I feel I have found a new friend!!

    Life isn’t good with out God!
    Sue
    Last edited by suelove60; 08-03-2013 at 08:48 AM.

  2. #12

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    Hi Sue
    Thanks for the information the unfortunate thing is my daughter is Allergic to all seizure meds we have tried her on the ones that would even maybe work for her she gets a reaction ... and oh yes we had to stop many of them because they were lowering her white counts and platelets she was down to 1.0 white count from a seizure med called ONFI (clobazam) we thought it might work because it's in the family of Clonazepam family,but we had to stop it cold turkey while she was in the hospital. Right now I'm happy that what she is on controls most of her grand mall seizures however she does have seizures all night long in her sleep ... Ask me how I know this ? I sleep with her
    Life isn't good without God !!
    Sue

  3. #13
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    ((((((Sue))))))

    My son is 43 years old, so I've acquired a ton of information and experience through him and his brother, not to mention many of my family members and friends. I share what I know, and I try to understand what I don't know.

    When you make a fruit smoothie, you sneak in some veggies (green leafy), and she won't taste them. Does she like spaghetti? Toss some veggies in the skillet if you use meat, or in the sauce. Disguise the veggies to make them more palatable.

    I guess the Prednisone is the result of being between a rock and a hard place. Has the doctor discussed other options? If not, don't hesitate to ask what other approaches are viable.

    You have found a new friend, and so have I! That's the beauty of Brain Talk. Now, come on over to the Child Neurology forum and make some more friends!

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  4. #14

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    Hi Rose,
    For what reason is your daughter being given Prednisone?

    Autoimmune hemolytic anemia a rare disease:
    Autoimmune hemolytic anemia (AHA) is a group of conditions where a person’s immune system destroys their red blood cells (RBCs). These rare conditions occur when antibodies—proteins that normally protect us from viruses or other infections—attach to a person’s own RBCs by mistake. Amy has had 8 blood transfuses and this is just a temporary fix as is the prednisone.

    They have my daughter on prednisone for autoimmune hemolytic anemia: Diagnosis is made by a positive direct Coombs test and she has tested four times now positive with one Blast happening in that test causing them to do a bone marrow biopsy. Finding on the bone marrow were NEG. for any kind of cancer. Praise God!


    AIHA causes maybe:
    Idiopathic that is, without any known cause
    Secondary to another disease, such as an antecedent upper respiratory tract infection,
    Systemic lupus erythematosus or rheumatoid arthritis or a malignancy, such as chronic lymphocytic leukemia
    Associated with receiving a drug

    She also has a enlarged spleen
    Splenomegaly is a condition that occurs when your spleen becomes enlarged. It is also commonly referred to as enlarged spleen or spleen enlargement.

    The spleen is a part of your lymphatic system. The spleen helps the immune system by storing white blood cells and helping in the creation of antibodies. The spleen is found on the left side of your body, below your rib cage. It is responsible for filtering antibody-coated bacteria, reprocessing old red blood cells, and recycling the iron in the hemoglobin.

    Your spleen is extremely important in your body’s fight against infection because it is the source of your white blood cells. White blood cells protect your body from bacteria and infections. The spleen is usually about the size of your fist, but when enlarged, it can become much bigger.



    And how long do they intend for her to stay on it?

    Short term they were hoping that the prednisone with help reverse her body from hemolysis. It’s one of the first drugs used to try.

    She loves smoothies and I can get her to drink many!! She loves her fresh fruit and well a few vegetables carrots and corn, tomatoes and potatoes and salad. I think I have her pretty covered and need to stop worrying so much. The problem now is she wants to eat all the time!!! Yikes ! Drinking is not a problem either
    Thanks for reading and listening Rose may God bless you !! forgive me I just saw that this has a second pages lol so I'm sorry for repeating myself
    Life isn't good without God !
    Sue
    Last edited by suelove60; 08-04-2013 at 07:50 PM.

  5. #15

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    Yesterday was our Milw. visit with hematology... I was very disappointed ...boo... we talked about everything that I already knew.. Now that it's over I'm not sure why I was even excited to go?? And drive in all that traffic!! , But God knew why!! He knew I wanted records !!
    I was able to get Amy's IUC records for free ... shhh normal cost 1.00 $ a page !! it was over 300 pages That is crazy . I had Amy with me and she was sweet talking the ladies and the women behind the desk said I will print them for you at no cost .

    Important stuff in the records we drove for yesterday telling me that Amy had hemolytic anemia in 2006 and no one ever told me and she had sepsis and we were never told me ... I was told it was a bad infection from pick line .. so a little more information to share with Doc. when we see him on the Aug . 13 2013 and she also had an enlarged spleen then in 2006 that I was never told about ... So this mean pictures for the Doctor to compare with !!! Blood counts are coming back up red was at 11.4 and white was at 5.4 super great news!! her body id still eating away her red counts so the next step is to do IV for four weeks . rituxibam . Thanks for reading and listening !!
    Life isn't good without God !
    Sue

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