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

  1. #1

    Default Low white cell counts and red cell count with seizure medications

    Hi
    Looking for anyone out there that has or has had low white cell counts and red cell counts being on seizure medications ? would love to hear from you ! Also anyone on the old school phenobarbital ? wanted to know how often you go in for med levels and a full CBC? I was told once when my daughter was little as a baby on phenobarbital that it's every six months? I asked the new neruo and she said no ... ???



    God is life !! Sue
    Life is God !!
    God is good !!
    Last edited by suelove60; 07-28-2013 at 07:37 AM.

  2. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Sue))))))

    Welcome to Brain Talk!

    My sons both experience(d) low hemoglobin (RBC) and Chronic Anemia from Depakote/Valproic Acid/Depakene.

    When my sons have been treated in the hospital, other drugs used in their treatment (e.g. antibiotics, blood thinners) have exacerbated their anemia requiring blood transfusions. Last year, Jon was on Zosyn (antibiotic) and Synthroid (hypothyroid), both of which deplete red blood cells. He had two transfusions.

    Jon has taken a low dose of phenobarbitol since his first seizure at the age of 2. That's 41 years on Pheno. Some years ago, a neuro told me that most AED's break down to pheno in the system. It's one of the oldest drugs, so it's used as a base for the development of newer drugs.

    We do blood levels on Pheno, Depakote, and Dilantin about every 3 months, unless Jon has a seizure, or he seems overmedicated, then we request a blood level. Levels can fluctuate on a daily basis for a variety of reasons, including metabolism. It's good to have a baseline when seizures are under control to know what the therapeutic level is for the individual. My son's levels are typically much lower than the lowest number in the range, but as long as he's controlled on that dose, we consider that his normal therapeutic level.

    Please join us on the Child Neurology forum:

    http://www.braintalkcommunities.org/...hild-Neurology

    Love & Light,

    Rose
    Last edited by Earth Mother 2 Angels; 07-28-2013 at 08:26 PM.
    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.

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    Hi Sue,

    I've had both red and white blood counts along with low blood platlet levels while I was on Depakene. every now and then I still get a low white blood count but my Dr. has now
    put me on Folic acid 1 mg. once a day and since then I have had now problems. I usually get a CBC, check, along with a drug level and liver check every 4 months. Ask the Dr. about
    folic acid this may help. Here's wishing you and your family only the best and May God Bless All of You!

    Sue

  4. #4

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    Hi Sue ,
    How low is low for you ? My daughter was at 1.8 after she got home after her long month stay ... her platelets have been low too 58 , 69 yikes that low .. and of course her red blood is also low ...
    Life isn't good without God !! Sue

  5. #5

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    Hi Rose ,
    So good to know were not alone in all the counting of blood ... I'm beginning to think my daughter is a vampire ( ha,ha,ha )
    I love the Earth mother name !! I have to keep reminding myself that the Lord picked me to care for my daughter while here on earth and that she is just a borrowed blessing ! Yikes that puts tears to my eyes... Today she saw her hematologist and he just told me the same thing that you shared about antibiotics like Zosyn , levaquin , ect... that they had her on while in the hospital could be what is causing her to have Autoimmune hemolytic anemia and this might be what is causing all the breaking down of her red blood cells . So we are heading for a second opinion with a new hematologist still within the same state ,but bigger blood center where big tests can be done . I asked today , how could this all still be effecting her blood being out of the hospital and off all this medication for one month now ? He told me they will run some different tests that they can't run at our home hospital . My daughter has been on phenobarbital since she was 5 days old .. she is on a much higher dose she has had her levels at 70 before and was fine on it .. Not my ideal level ... right now she is running 42.5 to 45.4 this is a great level for her ... after she had Dialysis due to septic shock this summer it washed everything she was taking right out ... Doc had her on industrial amounts of phenobarbital ,but the greatest thing about it was we didn't see any seizures . I thinks IV phenobarbital works better than tabs. !! I wish we could do Iv phenobarbital all the time . She is also on vimpat low dose .
    Life isn't good without God !
    Sue
    Last edited by suelove60; 07-30-2013 at 03:51 PM.

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    ((((((Sue))))))

    It takes awhile for blood cells to recalibrate. When Jon had his low hemoglobin last year from Zosyn and Synthroid, the doc said we should wait several months, before we retested his RBC, allowing time for the cells to recalibrate. And that was his word. And recalibrate they did. Jon's hemoglobin is good at 9.8, although it's below normal. But for him on Depakote, that's an acceptable level.

    Yes, IV of any drug has a greater efficacy than oral administration. Levels are usually higher with IV meds than oral meds. I'm not familiar with Vimpat, but some of the parents on Child Neurology forum are, so please stop by our CN forum and introduce yourself.

    Sepsis takes a major toll on the body's system, and recovery can take a long time. I know this from my own personal experience with sepsis, as well as my sons' experiences.

    How is your daughter's nutritional status? Her caloric intake per day? Vitamins/minerals, etc.? Nutrition is critical to healing, as well as to metabolism of medications.

    Hope you get some helpful information from the second opinion.

    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.

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    Hi Sue,
    It was a few yrs. ago when my white blood count and platelet level were really low so I can't remember the exact numbers. I do know that my platelet level was so low that my neuro
    admitted me into the hospital because he thought I was bleeding interally. I felt fine I just noticed I was more tired than usual. After a few days in the hospital and cutting me back on
    the Depakene I was okay, later on the neuro took me off the Depakene and put me on Diamox in it's place and it works great. Here's wishing you and your family only the best and May
    God Bless All of You!
    Sue

  8. #8

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    Hi Rose , I think she is on the road to recovering from the sepsis , but eating is still a challenge when it comes to protein shhh... she doesn't know this I sneak in a little protein into her drink every now and than and she has never been a big vegetable eater either ...She takes Vitamins and frolic acid .

    The steroid (prednisone) they have her on makes her want to eat all the time. UGH.... My wish is that she could walk again, but I'm really glad she can't right now that she can't, or she would eat me out of house and home lol

    For sure it will be a meeting before she heads back to work. Also have to find away to make sure work gets her plenty to drink during the day. Her kidneys shut down when she had septic shock her spleen are still much enlarged and her liver is still healing.

    It will be only a month that she has been home from the hospital ,but really we have been back to the hospital the whole month of July for lab doc. visit's and units of Blood . She wants so badly to go back to work and I want that more than anything for her too but with all of her counts being so low and her immune system is so weak
    .Going back to work with all of her special friends like her, I’m thinking not a good idea yet and neither do her doctors.


    I think this trip is going to be a good one and I am looking forward to it ! the sooner we can get her off the prednisone the better .
    Life isn't good without God! Sue
    Last edited by suelove60; 08-01-2013 at 11:35 AM.

  9. #9

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    Hi Rose , I think she is on the road to recovering from the sepsis , but eating is still a challenge when it comes to protein shhh... she doesn't know this I sneak in a little protein into her drink every now and than and she has never been a big vegetable eater either ...She takes Vitamins and frolic acid .

    The steroid (prednisone) they have her on makes her want to eat all the time. UGH.... My wish is that she could walk again, but I'm really glad she can't right now that she can't, or she would eat me out of house and home lol

    For sure it will be a meeting before she heads back to work. Also have to find away to make sure work gets her plenty to drink during the day. Her kidneys shut down when she had septic shock her spleen are still much enlarged and her liver is still healing.

    It will be only a month that she has been home from the hospital ,but really we have been back to the hospital the whole month of July for lab doc. visit's and units of Blood . She wants so badly to go back to work and I want that more than anything for her too but with all of her counts being so low and her immune system is so weak
    .Going back to work with all of her special friends like her, I’m thinking not a good idea yet and neither do her doctors.


    I think this trip is going to be a good one and I am looking forward to it ! the sooner we can get her off the prednisone the better .
    Life isn't good without God! Sue

  10. #10
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    ((((((Sue))))))

    Prednisone compromises the immune system. It can take weeks after the Prednisone is stopped, before it's fully eliminated from the system. For what reason is your daughter being given Prednisone? And how long do they intend for her to stay on it?

    Would your daughter enjoy smoothies? If you have a decent blender or food processor, you could combine a variety of fruits and veggies to make drinks for her. Toss in some yogurt or coconut milk. Raw, whole food is the best source of nutrition, and smoothies are an excellent, expedient and tasty way to have it.

    Does she like cottage cheese? That's a good source of protein, which our hospital dietitian recommended for Jon (but dairy congests him).

    If she becomes bored with drinking plain water, you can add a teaspoon of juice to flavor it. I would go with unsweetened juice, as she should avoid sugar. Squeeze a fresh orange into some water. Also, for her kidneys and bladder, I suggest cranberry juice, which keeps the pH balanced in the bladder and battles bacteria. Or a snack of cranberries.

    It's difficult to be patient, when recovering from a long illness. If she can find things to keep her busy or interested during her recovery that might help. Perhaps chat on the phone with her coworkers or friends. You might remind her that waiting until she is fully recovered means a less likely chance of relapse.

    Sending up healing thoughts and prayers~

    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.

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