Depakote and hyperammonemia

Discussion in 'General Parenting' started by slsh, Apr 3, 2008.

  1. slsh

    slsh member since 1999

    Learn something new every day. ARGH!

    thank you apparently has hyperammonemia (he was admitted yet again last week), most likely the result of Depakote. Why on *earth* it's taken 11 years for this to happen is beyond me, especially since his doses have not been messed with in the last year or so and blood work has been done and normal up until last week (to my knowledge - I may need to start requesting copies of the actual results just to feel confident that they're staying on top of it and actually *reading* the reports - but hopefully a change in placement is in the tubes anyway because... well, anyway).

    Hyperammonemia (HA) has the potential to be very dangerous (coma). Found several references where it can be related to valproic acid (Depakote).

    I have a call in to psychiatrist - apparently they were confirming and rechecking ammonia levels (typical psychiatric hospital - minimal communication and I wasn't pushing it because... it's just become so routine). She told him that they may be looking at switching mood stabilizer (lithium is out), so I'm madly researching. I have a lot of questions for her, but most importantly I want to know if they checked this when he was inpatient in 2/2008, specific blood test results, and also if this could possibly be responsible for his pretty severe downturn in the last month. HA does depress CNS stuff... so I have to wonder.

    thank you said she mentioned trileptal, which completely flipped me out. Maybe I'm just an old dog and not adjusting well to change.

    Anyway, in addition to Depakote levels, CBC, and LFTs, apparently routine blood urea and blood ammonia tests would not be an unreasonable request.

    Edited to add: The really good news is that thank you is with it enough to have understood what he was being told, got enough info for me to at least have a clue of what was going on *and* to be able to research and get my questions in order for when psychiatrist calls. Thank goodness the kid really *is* a smart cookie, and I think he's also got the beginnings of some good self-advocacy going on, too. 'Bout time - I'm tired, LOL. ;)
  2. KateM

    KateM Member

    We have experience with this! I'm running out the door now and will write more later. Is he showing any signs of HA -- lethargy, confusion, etc? If not, he may have had a false positive test, which happened to my son. His level was 330!-But no signs, so we repeated the test. Next level was 80.If plasma is not frozen, ammonia levels can rise in the blood sample, apparently.

    Also, there is a supplement called Carnitor (prescrition strength carnitine) that can prevent HA when taking Depakote.
  3. klmno

    klmno Active Member

    Wow! I'm glad you caught this before it became more serious!

    Could you elaborate a little on symptoms and why the level was ok then got too high, if you know?

    Also, just wondering why lithium is out?

    difficult child is currently on lithobid and depakote er but I am expecting some changes soon- I don't know the extent yet though.
  4. Wiped Out

    Wiped Out Well-Known Member Staff Member

    How scary!! I hope they find a mood stabilizer that will be helpful. Good for thank you on doing some self advocacy.
  5. slsh

    slsh member since 1999

    LOL, Kate - sorry, had to laugh. Lethargy and confusion are thank you's baseline. Only things I know for sure are that he's been sliding deeper into depression for ... gosh, I don't know, several months? So, he's been sleeping more, which is really his standard MO for anytime he's depressed *or* anytime he's avoiding stuff (pretty much 24/7/365). Confusion... really hard to get a feel for that because his thought processes are pretty goofy to start with. I think more delusional than usual would be a better description, which could also be part of the escalating depression. But absolutely, one of my questions for the psychiatrist is going to be could the HA have played a part in this admission.

    klmno - lithium is out because it fried his thyroid years ago. He was on it about 8 months and developed a goiter that was *humongous*. He just was able to come off Synthroid last year finally. Endocrinologist was at one point talking about a partial thyroidectomy it was so big. Because of his age and because we're facing a very real possibility of him being in a situation in about a year or so where medication noncompliance is a probability, I'm not willing to put him on a medication that could cause serious physical problems (the thyroid) if/when he decides to quit all medications altogether. I'm not sure why the ammonia level is out of whack now - it could be just one of those things. I also have to wonder if he's been cheeking medications and OD'd, though I would think there would have been other signs. I don't know - he's a mess and I wouldn't rule anything out as possible. Since they caught it this admission, I would think they checked it in 2/2008 as well, but I will be quizzing psychiatrist. I always ask about CBC, LFTs, Depakote levels, and drug screens, but I've never asked specifically about ammonia or urea.

    I found a couple of case studies of hyperammonemia but of course they were worst case scenarios involving coma (but successful reversal and full recovery). The one was a woman on Depakote for affective disorder and part of the conclusion of the case study was that early symptoms of HA can mimic what you would see as a person on the manic side of things gets therapeutic on Depakote. "This case illustrates the danger of interpreting changes in mood and behavior that are due to hyperammonemia as a therapeutic response to valproic acid in treatment of a patient with hypomanic symptoms." Guess it's a rare case of where the hoofbeats actually *could* be a zebra.
  6. smallworld

    smallworld Moderator

    Sue, sorry this is happening to thank you. In your shoes, I'd request all lab reports from the last year as well as have the blood test repeated. You can't be too careful in a situation that affects both phsyical and mental health.

    If the mood stabilizer has to be switched, you might want to research Lamictal. It is weight neutral and has a low side effect profile. As long as it's titrated slowly, the risk of rash is significantly decreased. I have two kids who have done very well on Lamictal (and we're thinking of putting our third on it).

    Hope things resolve quickly. Hugs.
  7. susiestar

    susiestar Roll With It

    I am so sorry. I hope it is a false positive. I think it is wise to consider the possiblity of non-compliance when arranging things, esp in an older teen.

    Way To Go thank you!!! on getting enough info and being able to relay it to you in a timely manner so you can get on top of htis!

  8. timer lady

    timer lady Queen of Hearts

    Well, Sue.....seems it's just another day in the life, huh?:stalker::stopglass::bigsmile:

    So when is our spa outing weekend - didn't we plan on next weekend? :bath: I'm pretty sure our doctor's prescribed it & that insurance would cover the entire weekend!

    Seriously, I'm glad Tyler was enough on the ball to get you this information & hoping that it clears up quickly. I, too, wonder if this may have contributed to thank you's downward spriral of late.

    Take care, my friend. :flowers:
  9. KateM

    KateM Member

    Sue, as I posted earlier, we've had experience with this. My son was on Depakote from 3rd to 10th grade without having an ammonia level done. Then, we switched docs (from neuro to psychiatrist). New doctor orders routine ammonia level -- it's elevated;son comes off Depakote.

    For the next 3 years, we tried different medications with varying effectiveness and side effects, but nothing helped son with mood stability and handling frutration as well as Depakote. Some medications tried: trileptal ( increased ADD symptoms and caused concentration/memory problems),lithium ( worked well with Lamictal, but not on own), Lamictal (sleep problems), as well as AP serquol and ,later, resperidal (weight gain and constantly hungry).

    I was researching any possible way son could take Depakote again and found some medication abstracts discussing how Depakote can cause an L-carnitine (amino acid )deficiency and this in turn causes the HA. Although L-carntine supplements are sold over the counter, a prescription strentgh is needed. The medication is called Carnitor.Here is some info from the presribing info -Additional Information
    Once a medicine has been approved for marketing for a certain use, experience may show that it is also useful for other medical problems. Although this use is not included in product labeling, levocarnitine is used in certain patients with the following medical condition:

    Carnitine deficiency that results from treatment with valproic acid

    My son has been back on Depakote since August (with the Carnitor) with great results! His ammonia level has been followed every 2 months. After being fine for 4 months, it suddenly shot up to 330 -- but psychiatrist said it must be a lab error. Son was retested and level was 80. His last level, 2 weeks ago, was 60.

    So, if you feel Depakote is the best medication for your son, talk to the doctor about Carnitor supplementation.
  10. SRL

    SRL Active Member

    Good luck with this, Sue. I'm glad someone was actually enough on the ball to pick it up.

    Spa weekend prescribed by doctors and covered by [email protected]!!!!! You must have a frequent flyer plan with your insurance! :)
  11. KateM

    KateM Member

    Sue, how is thank you doing? Any medication changes? See my post above for our experience with this. Hope all is well!
  12. slsh

    slsh member since 1999

    Thanks for asking, Kate. We're weaning off Depakote while adding Tegretol at the same time. He's also on a minute dose of Geodon because psychiatrist said that it can help with bipolar folks who tend to hang out more in the depressed end of things. She was very much against ADs (much to my relief).

    Rechecking labs again today and if all is good, he will be discharged tonight. The next big hurdle will be making sure TLP follows up appropriately. I did talk with TLP psychiatrist yesterday and he was concerned about followup as well. Guess I'll just be emailing thank you's case mgr daily.

    thank you actually sounded *much* better last night and was very consciously using some positive self-talk. Hallelujah!