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1.03.2012

RAGE-A-HOLIC.

 It's sad I haven't even had the time or patience to post any of our Christmas pictures.  Instead, I've been dealing with a crazed and psychotic toddler...thanks to his medication.  It's only gotten worse...and he's been spending most of his time in his crib!  I talked to his neurologist and they want to wean him from Keppra (I love how understanding and compassionate they are by the way!  They felt horrible because they know what this drug does to adults & children.  A lot of teens/adults become suicidal on this drug, so I can only imagine how Cole is feeling).  BUT, they want to add another medication (Trileptal/Oxcarbazepine).  I am not a big fan of putting him on another medication...in fear that he might start seizing again.  It TOTALLY freaks me out.  I don't know what I would do if he started seizing again because we put him on another med.  But, I also can't let him feel the way he is on Keppra.  I thought our days of dealing with medications were behind us :(   I HATE THIS!  ...however, today he has been 50% better with his anger...I gave him B6 & vitamin D this morning and I wonder if that what helped.  They say adding B6 with Keppra helps, although it's never proved to work for Cole when we tried it last.  However, I always supplemented him with Vitamin D everyday...until I went back to work & that is about the time that he started becoming angry.  So, I am going to see if Vitamin D does the trick (please pray that it does!!!).   I am also getting his Vitamin levels drawn to see what he is low in. 

OK, now I've got a few questions...
1. have you tried Trileptal with your child: if so, can  you tell me how your experience was?
2. if you have special needs children: what vitamins do you think work the best (I was looking into Kirkman- SuperNuThera, it super expensive...but everything for Cole seems to be & if it works for better behavior and better cognitive results I will use it...but wanted to see if anyone knew anything about it or other vitamins you recommend.
3. I am going to get his blood drawn for: Vitamin levels and allergies lgE & lgG....is there anything else I should check for or advise in this area?

Thanks!

9 comments:

  1. Levi was on Trileptal for a year and a half...the only reason, we switched was because it wasn't fully controlling his seizures...but neither is the Lamictal he is on now. I have to say that besides the lamictal, Levi was the happiest on the Trileptal. We had a good experience with Trileptal...and hopefully you will as well.

    Super Nu Thera is a great choice. It is pricey...but I think you will find after 3-6 months, once vitamin levels have stabilized, then you can switch to a less expensive one like Child Essence...or something else...there are lots out there. We order from a site called "Ourkidsasd.com"...use the coupon code "FREE" for free shipping. Also, if you have a TACA group nearby, they send in quarterly orders to kirkman and get the stuff at a 30-40% discount. Sometimes if you call Kirkman, you can buy stock that is going to expire in the next few months...if you use it right away, then it is no big deal...but you can buy it discounted which is nice. We have used many brands so feel free to ask about any other ones.

    Allergies are great to test for...I have found though that even though Levi didn't show positive for Dairy, he is very reactive to it (throws up within 20 minutes)...so you also have to go off observations. We had significant behavior improvements after taking out allergens and going as organic as the budget allows. We have been lucky to live in a town with an outdoor farmers market on Saturdays...we get most of our produce from there or Trader Joes.

    Hope that helps :)

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  2. One last comment...Vitamin D is awesome...it is the precursor to Serotonin, so when levels are low, you can feel super lousy...when Vitamin D is supplemented...it often makes the person feel A LOT better. We supplemented high doses (5000 I.U. - love the drops for this...1000 i.u. per drop, and they are tasteless) for about 6 months...until our kids levels stabilized...now they get whatever is in their food/multi vitamin.

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  3. The first medication Jace was on was Trileptal it worked until his head drops started which I think was inevitable. The only side effect I saw was Jace ate a lot and chunked up! But this could have been from him trying to relieve his reflux (medication or maybe seizure related?)......I'm not so sure we were in a high dose or not but I can tell you I saw no behavioral stuff with Trileptal. I'm so happy they are looking into another medication for Cole! I know it'll work! God is getting him on a path off that med!

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  4. My son was on trileptal for 3 weeks and he broke out in horrble rash and the medication was stopped. He started keppra and it made him crazy. We played with keppra for a whole year. My son 5 yrs old was even regressing to the level of a two yr old. when Keppra was removed he got alot better. He is now on banzel and has a VNS implant and is doing great.

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  5. Heather- I'm so glad your son is finally doing well...these meds are scary and frustrating!!!

    Alaina- I started doing the Vitamin D...he's about 50% better behavior wise...I am going to wait at least one week before I decide to do the med switch!

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  6. My son also started on Trileptal and it controlled his seizures for about 5 weeks. We didn't notice any real side effects except maybe increased appetite. When my son started having seizures again, his doctor added Keppra. We did not notice any improvement in seizure activity but we did notice a drastic change in personality and mood. Keppra made my son extremely emotional. The smallest frustration turned into full blown rage within 10 seconds and then ultimately led to sadness and sobbing. It was aweful. We contintued to increase the Keppra levels because his seziures were still uncontrolled. Eventually he was at the maximum therapeutic dose for both Trileptal and Keppra and the two together were making him very groggy. We made and appointment with our neurologist and he agreed to wean Luke off of Keppra. As soon as we did that, his seizures started to decrease in number and severity however he was still having at least one per day. After describing Luke's seizures at an appointment, one of the resident neurologists suggested Lamicatal. Luke's doctor prescribed Lamictal and that did actually work to control them. He has now been seizure free for 6 weeks (knock on wood). On Trileptal and Lamictal, Luke has become a super happy (albeit busy) child and his problem solving skills and language have improved dramatically. I hope your son does well on Trileptal and I don't think you should worry about Trileptal side effects the way you need to with Keppra. Best wishes in the New Year!

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  7. My son was on Trileptal for a while and we saw no improvement with his seizures. It was later that we found out that he has Dravet syndrome and that drug actually makes seizures worse for Dravet childen. He was put on Keppra with other meds and it has helped a lot. We recently started to wean keppra and his vocabulary had probably tripled. I have heard that keppra makes it hard for language development so that was why we wanted to wean. We have been weaning slow at a 1/4 mil down per week. New Years eve my son said Mom for the first time in his life. I have waited almost three years to year it and it was glorious. I hope it is helpful to you and wish you all the best!

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  8. adforsyth- yay for your son Luke! (yes, knock on wood!) I REALLY hope he continues to do well. I am also glad he's not on Keppra anymore and that you were able to find a good combo for him! Thank you so much for your comment.

    Jensens- You have NO idea how GREAT that is to hear that you son's vocabulary tripled (actually you probably do!). I've never known that Keppra can suppress vocabulary etc...I've heard other meds can, but now that you and the other lady who posted before you said your kids are better not on it, it makes me anxious to get him off of it (slowly of course!). Now I've got something else to look forward to! And how FREAKING AWESOME is that...your son said "mom" for the first time...it bring tears to my eyes. I hope he continues to do well!

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  9. hi, you dont know me but i've been reading your blog as my daughter has intractible epilepsy (due to tuberous sclerosis) and we are now about to schedule her for pre-op testing. I just wanted to mention that we use a lot of supplements for various things for Audrey and wanted to suggest checking out the website www.autismcoach.com. The supplements have been very helpful. My daughter does not have autism, but I've found there's a lot of overlap of things going on in the brains of those with both epilepsy and autism. We give Audrey a multivitamin powder from there that has everything in it that i had researched would help her. the price i think is good too. High doses of antioxidants, Vitamin D, B vitamins, Magnesium, adequate zinc, free of copper and iron that tend to be too high in kids with epilepsy and autism.... She also has a specific supplement called "behavior balance"...which is mostly B vitamins and magnesium. But the multi vitamin powder has all the same supplements plus extra, so i buy that one. We also give her liquid Carnosine, as she is nonverbal and it has been shown to help with speech, and with impulse control as it works in the frontal cortex where those areas are processed. She began saying several new words the same day she started taking it. She is pretty happy most of the time, but occasionally we deal with her hitting or screaming when she doesnt get her way...these supplements seem to help. I dont know much about SuperNuThera other than reading that that was what Jenny McCarthy gave her son Evan, LOL...anyway wanted to share our experiences with supplements.

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