Discussion in 'General Parenting' started by neednewtechnique, Sep 18, 2007.

  1. neednewtechnique

    neednewtechnique New Member

    Okay, so when my difficult child started taking Lamictal, they WARNED ME about the seriousness of a rash that she could develop on her stomach somewhere between 2 and 8 weeks of starting or changing dosages on this medication. So, when my difficult child came home from school yesterday covered in bumps on her belly, we decided it was time to pay the ER a visit. This is the beginning of week 3 of the medications, so great timing....

    THE ER doctor THOUGHT I WAS CRAZY!!!! He kept going on and on about an allergic reaction to medication happening within 48 hours of taking the first pill, and how she had been taking it too long to be having an allergy. I very politely tried to explain to him that her psychiatrist lead me to believe that the "Lamictal Rash" was NOT an allergic reaction, but that it could have serious consequences if left untreated..... and he still looked at me like I was NUTS and had NO CLUE what I was talking about.

    So he gives her BENADRYL!!!! And that's supposed to HELP after he SWORE it wasn't an allergy?!?! Advising me that if there was some condition that the psychiatrist was aware of that he wasn't, he recommended I try to make an appointment with her in the next "week or so" he said. Well, when the psychiatrist declared the tummy rash a "medical emergency", I am sure she was NOT thinking "have it treated sometime within a week or so"........
    So, FUMING, I called the psychiatrist office this morning, only to discover that she is on VACATION!!! ARGH!!! She already has an appointment with her regular doctor today, so I thought I would discuss this with her, but now there is a new concern, if the psychiatrist isn't available and they take her off this medicine, what will we do??!?!?! She is DANGEROUS when unmedicated. To herself AND to others, so I am wondering if it would be something the regular doctor might be willing to give her something just for a few days until psychiatrist comes back.

    I guess now that I am done venting, my real question is, have any of your children ever developed this "Lamictal Tummy Rash"??? If so, <u>what does it look like</u>, and WHY do they consider it such an emergency??? I read online that untreated it can lead to disability and even death, but it doesn't say how or why!!!!!
  2. CrazyinVA

    CrazyinVA Well-Known Member Staff Member

    Who is on call for the psychiatrist? I would ask to speak to them ASAP. Tell the receptionist at their office what has happened. I suspect a regular primary care doctor won't be as familiar with the possible rash as a psychiatrist or a neurologist would be.

    I did some Googling on the rash, and it looks like it can be anywhere from mild to the more rare, dangerous kind. Try not to panic just yet (easier said than done). She may not have to stop Lamictal altogether, maybe just need to titrate more slowly up to a higher dose.

    Hang in there.
  3. totoro

    totoro Mom? What's a GFG?

    I have read everything from, just monitor it, under psychiatrist supervision, because once you stop taking Lamictal from a true Stevens Johnson rash you can not take it again, to stop taking it no matter what the rash looks like...

    When K was in psychiatric hospital I did see a boy with the rash... he was covered from head to toe in these painful looking bumps, pinkish and redish, like chicken pox only bigger, looked like you could pop them, he also had the effects in his mouth, the ulcers etc... pretty obvious what was going on. We new K did not have the rash, she had marks from going up the dock when swimming which is what we thought, we were just being careful.

    Could it be her clothes, or a reaction to detergent or anything else you can think of?

    Sorry the ER doctor was an @*#&$*@# evenif it isn't you should still be taken seriously!
  4. crazymama30

    crazymama30 Active Member

    my son developed a rash while on Lamictal. Went to doctor (family) and it was hives. Per psychiatrist and family doctor, we stopped all medications untill rash resolved, then restarted Lamictal and have not had a problem since. I believe there is supposed to be a fever involved in the rash. The rash, like Totoro said, are fluid filled blisters. Good luck, and sorry the ER doctor was such a moron.
  5. Jules71

    Jules71 Warrior Mom since 2007

    Try going to google, click on images, then type in Lamictal Rash. You may be able to see what the rash looks like.
  6. neednewtechnique

    neednewtechnique New Member

    He really wasn't trying to put me off, i think he genuinely had NO IDEA what I was talking about. But then at the same time, I found information online today that this is not the first time that has happened. Apparently it is pretty common for the ER docs to blow that off because they are not aware of the connection between that and SJS.

    I am just worried that we will end up having to hospitalize her to keep her safe or to get her on some different medications until the psychiatrist returns.

    She has a 24-hour crisis team, which has a Clinician on staff, but there is NO ON CALL psychiatrist for her, so no one to prescribe her another medication to replace the Lamictal with, so if I stop giving it to her she will be UNMEDICATED for this whole week, and I guess that this doesn't even really build up in your system to even be able to carry you through a few days without it, it only lasts 26 hours in your system. And without medications, she can be dangerous, to herself and to others, so I have concerns about just stopping it until she can be seen NEXT week!!!
  7. busywend

    busywend Well-Known Member Staff Member

  8. neednewtechnique

    neednewtechnique New Member


    I don't know WHAT I WOULD DO WITHOUT YOU!!!! You always come back to everything with such a SIMPLE SOLUTION THAT MAKES SUCH GREAT SENSE, but somehow it involves something that I NEVER EVEN THOUGHT OF!!!

    This is one of those moments where I want to slap myself in the forehead and say DUH!!!

  9. Steely

    Steely Active Member

    The really dangerous, life threatening rash, is from Stephens-Johnson syndrome. I would call back the ER doctor and tell him that this is what you were worried about - and ask him if he thinks she has the symptoms of this.

    My psychiatrist said that any rash that developed would warrant discontinuing the medication immediately, because stephen johnson, once developed is irreversible, and usually fatal, and she would not want to wait to guess about "what kind of rash" it is. That is her version - but she was totally hesitant about starting the medication to begin with - so I know she is overly cautious. None the less, I think if you cannot get a hold of psychiatrist, and the ER doctor is still clueless even after you discuss this with him again - then I would go to your local psychiatric hospital. They can admit her and watch her medically, as well as help her titrate off the Lamictal safely, and start something else.

    So sorry you are going through this!
  10. neednewtechnique

    neednewtechnique New Member

    Well, I called the Pharmacist, and he offered a pretty decent suggestion that might be worth a shot if her regular doctor will agree to it, and he said he would try to help me convince her. He suggested that Lithium is supposed to work on Bipolar 1 in the same manner that Lamictal works, and that if she would be willing to prescribe a week or two worth of this medication to get her through until the psychiatrist comes back, he would talk to her on the phone and try to come up with a comparable dosage between the Lamictal and the Lithium so that she was medicated about the same. He said that with something like this, the dosage may not be perfect, but it would at least help get her through the "crash" of coming off the Lamictal and the week that she would otherwise be unmedicated. He said that he would hate to see her go without anything and have the "crash" cause her to have a psychotic break that would land her in the hospital, especially since the Lamictal has been working SO WELL. I read somewhere while I was looking up the medication someone said that if they WERE going to develop the rash, they would rather get it right away before the medication starts to work, so that they don't know what they are missing! I tend to agree with that, because now that we KNOW it works and works well, and she might have to stop taking it, its a little disappointing!!!!
  11. flutterbee

    flutterbee Guest

    Sorry the ER doctor was such an idiot. The rash to be concerned about is an adverse reaction to the medication, not an allergic reaction. Hospitals have computers. That ER doctor needs to learn how to use one.
  12. totoro

    totoro Mom? What's a GFG?

    Stevens-Johnson syndrome: A serious systemic (bodywide) allergic reaction with a characteristic rash involving the skin and mucous membranes, including the buccal mucosa (inside of the mouth). The disease is due to a hypersensitive (allergic) reaction to one of a number of immunologic stimuli including drugs and infectious agents. Abbreviated SJS

    This is from Medicine Net... so who knows what or why the ER doctor was thinking... maybe he wasn't!!! Interesting... I check K every day...

    one other thing I read under SJS is that the cause is stopped (Lamictal) and patient is treated with Corticosteroids...
  13. timer lady

    timer lady Queen of Hearts

    I've had the rash you are referring to from the lamictal (prescribed for my seizures). It's called Stevens-Johnson syndrome. For me, I had the rash on my entire body along with a high temp. It was a medical emergency.

    An allergic reaction can happen at any time during treatment - doesn't necessarily happen immediately. I was on a medication for over 7 months before my body decided it didn't like this medication & I was allergic to it. Once my body decided that though, again it became an emergency.

    As you acquire the knowledge (through many experiments in terror), you will begin to recognize this stuff.

    I hope you find an appropriate substitute until psychiatrist is back from vacation. by the way, did she leave an on call doctor to contact for emergencies?
  14. neednewtechnique

    neednewtechnique New Member

    Well, if it makes any difference, the bumps are NOT fluid filled, at least not yet, but the Pharmacist also mentioned that the reason it can become such an emergency is because sometimes the first couple days it is so light it is unnoticeable, and it is sometimes day three, when it really kicks up, before anyone notices. So I am with some of the psychiatristS who have said there is NO REASON whatsoever to "hang around and wait" to see what the rash is from, because by then it could be too late. And since she DID notice it on the first day, it might give us the rest of today and tomorrow before it turns nasty, if that's even what it is. I am not sure that it is, because it doesn't look like anything that nasty to me, but like he said, it can go a few days unnoticed......

    The pharmacists comment about the ER doctor not knowing what I was talking about what "well, that doesn't surprise me, you should have had him call me at home, I would have given him a piece of my mind". Then I mentioned that it was 2 in the morning, and he said "even better, I reserve my BEST attitude for clueless doctors to when I am awakened in the middle of the night".

    He said to come see him after she goes to the doctor today and he will give her some "really good stuff" for the itching....
  15. Steely

    Steely Active Member

    WOW - I want your pharmacist!!! I am not sure mine even speaks! :laugh:

    Good luck. I would not wait for a second either!
  16. smallworld

    smallworld Moderator

    Do you have a dermatologist who can evaluate the rash?

    I personally would be worried about substituting Lithium for Lamictal. You can't just go to a therapeutic dose of Lithium without titrating up carefully. You also need blood draws with Lithium to determine therapeutic dose. Furthermore, it takes 6 to 8 weeks at a therapeutic dose to see full efficacy.
  17. Lothlorien

    Lothlorien Active Member Staff Member

    Sounds like a wonderful pharmacist! I don't think our pharmacists would go through the trouble he's gone through. I'd think I'd have to make something yummy for him.
  18. CrazyinVA

    CrazyinVA Well-Known Member Staff Member

    I'm not sure I'd make the switch to Lithium, either, without a psychiatrist involved. I can't believe there is no doctor on call for this crisis team, that is nuts! Have you talked to them about the problem? A dermatologist is a good suggestion, as well.

    I read a couple of articles in my googling that indicated many doctors are now not necessarily stopping Lamictal altogether upon a rash (if it's mild), but simply reducing the dosage until it goes away, and then titrating up more slowly.

    There definitely seem to be a lot of opinions on the rash and what to do, if it's "mild."
  19. busywend

    busywend Well-Known Member Staff Member

    All I will say about what to do at this point is, go with your gut instinct.

    Many pharmacists get no interaction with their customers, but that is not always the way they wish it to be. My friends husband is a pharmacist and he loves it when his customers consult him. That is what he went to school for - to know and understand the drug. Not to count pills. Most pharmacists have their time taken up by counting, recounting and health insurance issues. Such a waste of so much knowledge!
  20. jannie

    jannie trying to survive....

    I would call the 24 hour crisis team again for the psychiatrist's office. Someone should be able to see you tomorrow--I'd be scared to stop the Lamictil without confirming it's the bad rash--Maybe call the hospital--let them specifically know your question -- there has to be someone qualified in the hospital to determine if its the Stevens'rash--It is a hospital--one bad doctor doesn't mean they are all bad--Someone needs to comfirm this for you--

    Sending hugs--