AA from Epilepsy Drugs?

[bchenaille]

It pains me to write this post. Many of you know that our daughter Kathryn's AA is in remission. She is doing great and we were having a great summer until last Thursday when my wife called me frantically from the ER and our son Dylan had a seizure. What a punch in the gut!

After several Grand mal seizures in a 24-hour period, the neurologists put him on Dilantin and are suggesting he switches to Tegritol after a month. So now comes the best part . . the number 1 listed major side effect of these drugs? . . . yep . . . Aplastic Anemia. We also asked if they had any idea how he may have gotten epilepsy after all his tests came back negative. Immediately the doctor said it was "idiopathic". I have come to love that word.

Does anyone know of someone who got AA from seizure medication of any kind? We soooo don't want to put him on anything that could trigger AA in our son.

The neurologist seemed to be taken aback by my questioning. Please tell me if my logic is off . . . but if all the experts in the world have NO IDEA how Kathryn acquired AA, then NO ONE can say she didn't get it from some environmental issue (land/home). Therefore, if something environmental "could" has helped trigger her AA, doesn't it make sense that same trigger could cause Dylan to get AA if that trigger still exists? Especially now that he would be on a medication that could cause it?

Bill Chenaille
bchenaille@comcast.net

[Neil Cuadra]

What a shock, Bill! How could lightning strike you twice?

I've never met anyone with AA resulting from seizure medications, but they say that the risk of AA from Tegretol is about 1 in 500,000. Those are long odds but of course you don't want even that low risk if you can avoid it. If Dylan needs medication for epilepsy, is there another anticonvulsant he might take?

Even if there's something wrong in your environment, it's hard to see how it would cause aplastic anemia in one child and epilepsy in another. The known causes of epilepsy and the known causes of aplastic anemia don't have much in common. But of course you end up back at "idiopathic", which tells you nothing. I wonder if the health department could tell you if there have been higher-than-average incidences of either disease in your neighborhood.

When my wife got her AA diagnosis (yes, idiopathic), I asked for a CBC test in case we had both been exposed to the same environmental contaminant. My doctor gave me an odd look when I first asked for the test but I explained why I was worried about the possibility, on top of worrying about my wife. (I passed the tests; they didn't find anything wrong with my counts.) So I know exactly how you feel and how strongly you want to find an explanation that makes sense of this.

[Marlene]

Hi Bill,

So sorry to hear about Dylan. When John was at Hopkins, we met a mother of a 16yr old who was getting a transplant. She had been on seizure med all her life and did get AA. I don't know what she was taking but her mom said it was from her seizure meds. I'm sure you're already checking out epilepsy forums and asking these same questions.

Regarding triggers to disease. I think we all have different/multiple triggers and different organs/systems can be involved. So the same toxin can effect us in different ways. When it's not an acute, extreme exposure, then they have a difficult time assigning a toxin to a disease. However, there's more data out there where chronic, low levels of multiple toxins can disrupt our system and cause disease. And the more I hear about the natural gas drilling taking place in NY,PA, W.VA and Colorado and the effects on the ground water and air, it makes sense that children will be more sensitive to the toxic exposure from the chemicals used in the process and suffer the consequences.

I hope you get this sorted out sooner than later and that Dylan's seizures will resolve.

Take care,
Marlene

[bchenaille]

Thank you Neil & Marlene. I am really hoping we can find another medication that doesn't have such horrible side effects. However, so far they all seem to be very similar. The only thing I have read that would be an alternative is medical cannabis. However it seems it is only a theory without and conclusive clinical evidence.

It also may be too soon to introduce Dylan to Bob Marley and tie dye?

We'll beat this one too! I'll keep you updated.

[fibogann]

Hi friends,

Recently I have been researching into drugs and environmental agents that have been identified as causing aplastic anemia, and like to quote from this medical paper entitled: "Epidemilogy of Aplastic Anemia - a prospective multicenter study" which was presented by several research university hospitals in Spain, as I thought the results will be useful to most of us, especially in the event we can request alternative prescritptions to those drugs or agents commonly prescribed without any thought to its relevance as an AA causing agent when we are sick or ill.

"Exposure to drugs and environmental agents

Out of the 235 cases with exposure data, 67 cases (28.5%) had been exposed to drugs or toxic agents.

Forty-nine (20.8%) cases had been exposed to the following drugs which have been reported to be associated with aplastic anemia:8 allopurinol (n=9), indomethacin (n=9), gold salts (n=9), sulfonamides (n=9), butazones (n=6), carbamazepine (n=5), ticlopidine (n=4), chloramphenicol (n=3), penicillamine (n=3), methimazole (n=2) and clopidogrel (n=2).

In addition, 21 (8.9%) cases had been exposed to toxic agents: insecticides (n=8), benzene (n=6), and other solvents (n=10) (http://www.icf.uab.es/aplasticanaemia)."

I underlined carbamazepine because this appears to be prescribed commonly for epilepsy and bipolar disorder and perhaps it is good for us to be alert to its use.

This paper was accepted for publication in Dec 2007 and made use of data from France, Spain and Thailand.

Regards,

Peter

[Neil Cuadra]

Hi Peter.

I was surprised to read that chloramphenicol, known to cause aplastic anemia, is still used to treat meningitis and other ailments in some countries. Perhaps there are cases where drugs like this are used with full knowledge of their dangers and an assessment of the risk, when no better treatment is available, but my concern is that in some cases they may be prescribed with a lack of information about the potential side effects.

If you run into information about when and where chloramphenicol is still used, please let us know.

[Marlene]

I remember reading about its use in food to prevent spoilage. This was a few years back( 2007?) and was mostly crab and shrimp imported from China. I guess they used it to kill/retard the growth of bacteria. I think they use anti-fungals also. Seafood goes bad quickly and I guess this is a quick way to overcome poor farming/processing of farmed fish products. It is not legal to use it that way in the USA but then I don't know who monitors the imported foods (or even our fish farms) for it 100% of the time.

Here's a more recent contamination in honey:

http://elizabethely.com/2010/07/11/a...mported-honey/

[Candy S]

Dear Bill, It pains me that I am replying to this post....yes, my daughter acquired SAA after taking Lamictal. Like you said, almost all the seizure meds have the ability to reduce blood counts.

I should have logged on here a year and a half ago...but I was busy with my daughter and posting on CaringBridge. First of all, everyone has a seizure threshold...what sets off one person from the next can be very different. My daughter had her first absense seizure on 9/22/08. After she produced two more (which were more like myoclonic seiuzres) they started her on Lamictal. YEAH, you got to love that word idiopathic!!!!!!!!! I hear it all the time.

After finally working up to the required dose of Lamictal and the seizures did not go away....they sent her for a blood test to make sure her kidneys looked okay before trying another medication. GUESS WHAT -- that was December 17, 2008 and all her counts were DOWN.

By January 27, 2009, my 15 year old daughter was diagnosed with Severe Aplastic Anemia. Needless to say the seizures took a back seat! She went through her first round of IST in March of 2009 with no response. She went through her second round of IST in October 2009 with a partial response.

I am happy to say (after being in and out of the hospital so many times between the SAA and seizures) they finally got her seizures under control in December of last year. So, we have been on Keppra (2000 mg.) a day for that....I can't even begin to bore you with all the drugs we have been through.

As of today, she is seizure free, and transfusion free since March of this year. Her counts are OKAY. They don't think her platelets are going to get any better - she hovers in the 50,000 range. She just started her senior year at school after being out for 1 1/2 years.

We continue to look for her bone marrow match - since we don't have one. We go to UCLA, but also are seen at the NIH.

Good luck to you. I would be happy to answer anything you may want to know.

This little blurb below (in blue) is out of date...I will need to figure out how to fix that.

[Neil Cuadra]

Originally Posted by Candy S

This little blurb below (in blue) is out of date...I will need to figure out how to fix that.

Candy,

Click here to edit the message below your posts, which is called your forum signature.

More generally, you and others can click My Settings at the top of the page to get to the area where you set your forum signature, your profile information, your forum options, your email address, etc.

[Candy S]

Dear Neil: FOUND IT! Thanks for the help. Candy

[clairekim]

Hello,

This thread is more than a year old, but I figured I will reply as I can relate to this. My wife was recently diganosed with Epilesy about three years ago. She was initially put on Dilantin but was withdrawn after seeing reactions (rashes) from it. They put her on Keppra XR. We've been taking this med for more than 2 years now... 1000mg a day. It's been somewhat helpful in controlling her seizures (she had couple of grand mal seizures in this period, which doctors say is due to her missing her medication). She had contiunous aura's (prelude to seizure), so recently we decided to increase her dosage from 1000mg to 1500mg. We were taking this dosage for about a month but didn't see any improvement. We decided to take it back down to 1000mg. Shortly afterwards, we strated seeing bruises on her leg. After couple of months, we decided to see the doctor. She was then diagnosed with SAA. I told the doctors about this medication change, but no one seems to believe that this is due to Keppra. The odds of having these 2 symptoms (SAA + Epilesy) is probably 1 in several hundred billions.... are you kidding me?

She had her first ATG last week and still taking Keppra on top of all her AA medications. We are watiing for her platelet count to go up to the level we can tak the risk and take her off Keppra. These medications may help control seizures but they can do some damage elsewhere.

If you have any questions, feel free to call 201-621-2390.

[evansmom]

Sorry to hear about your poor wife.

As far as I know, and Bill, the thread starter is certainly more versed in this area than I, epilepsy meds can and do trigger aplastic anemia. What I find very confusing is treating drug-induced AA with immunosuppression (ie ATG). I'd like to understand how a reaction to a medication causes immune-mediated AA that we can treat with ATG? Why can't withdrawal of the offending medication and time take care of this (I do realize that seizures would re-occur and that's not appropriate either)?

Perhaps Bill can add some input?

[Lbrown]

Maybe the meds work by screwing up the immune system in the first place? But yeah, ATG seems a bit much when possibly changing meds might help.

Deb

[julieluvsmarco]

my daughter was just diagnosed with aplastic anemia june 2011 prior to diagnoses she was a healthy 6 year old.she had petit mal seizures (staring spells that last less that a secound) and was put on dilantin and soon was weened off because of rashes.then she was put on lamictal and her seizures went away they decided to up the dose slightly and within a week she bruised all over her body and had bleeding gums.a week later she was diagnosed with AA.the number one side effect of lamictal is AA.doctors dont seem to believe the AA is linked to it. They switched to keppra and was on that for a few months and i slowly weened her off it myself.i believe thats what caused my daughters AA. So far shes been off keppra for 4 months with no seizures and before she would miss a dose an right away would have a staring spell seizure.I am happy i took her off it i dont need any more side effects from medications.In my heart i believe lamictal is what caused her the AA.

[clairekim]

Hi Julie,

Our doctors also won't say for sure if the Keppra was the problem for my wife, but I am 99% convinced it is. Did your daughter fully recover from AA after she was weened off her Keppra/Lamictal? I pray she did. That's surely an indication that the medication was the main culprit.

We are waiting for her PLT count to move up to the point where we don't need to get transfusions. At that point, we are going to take our chance and ween off from this horrible medication.

Thanks for your feedback.
David Kim

[julieluvsmarco]

Hi clairekim,

unfortunaly her counts didnt go up after being weened off the lamictal they started atg on july 2011..soon after she was put on keppra 250 mg for one month and on sept 2011 i slowly weened her off myself and shes been seizure- free and her counts hold steady for a few weeks im hoping her counts will soon come up..

[clairekim]

Hello Julie,

Hope her counts come up soon. I understand that it could take months though.... hang in there.

My wife was on Keppra XR 500mg, twice a day. Since the AA diagnosis, we cut it down to one 500mg per day. We haven't seen any increase in her seizure actitivies from it. As soon as her PLT count goes up, we are going to cut it off completely. Who knows what complications we will get from taking Cyclo + Keppra.

Good luck!