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Vicc · 09-07-2007, 05:59 PM

Hi Andrea,

I hope you’re not so upset with me about my remarks regarding Ali’s physician that you will simply reject anything I have to say out of hand. I’ve been called blunt and uncompromising and don’t totally reject those characterizations, but I think I would have tempered my words a little had I known of this relationship: I try not to be willfully hurtful.

I am very vigilant against intimations that personality has anything to do with such a clearly physiological disorder as they open the door to a blame the patient attitude, and shift the focus from treating the disease to fixing the patient. Additionally, we tend to blame ourselves for a mistake that led to this disease, and some will withdraw even further if they think their personality has any portion in this.

Anyway, you wrote: My other worry is the possibility of long term effects stemming from the use of drugs which are not registered for use in children. I honestly don’t know enough about Lyrica to talk about why that might be, but Lyrica is just the latest in a series of medications used to treat seizure disorders, and its predecessors have been commonly used with children, so unless there is something specifically known or suspected about giving it to children, I suggest that the absence of this specific testing probably isn’t ominous.

The greatest concern about using drugs with children is that they could affect future development, and that particular danger seems quite low with Lyrica, since it’s a refinement of previous drugs that have been shown to be safe with children.

I went to Medline Plus and looked for contrasts between Lyrica and gabapentin (one of the first of this class of drugs), and found the most striking thing is that gabapentin (GP) is described as treating seizures during epilepsy while Lyrica (Ly) is intended to treat neuropathic pain; yet both appear to have the same mechanism of action: supplementing GABA that is naturally produced by the body.

In my thread Facts you may not know about RSD, I talk about what natural and artificial GABAs do and how they modulate the sort of burning pain and allodynia we suffer. Few, if any chemicals work as well as their natural counterparts, and all have side-effects. This is amplified in the use of GABAs to modulate pain, since they body is already producing enough of them. They just aren’t being adequately delivered where they’re needed in the case of neuropathic pain.

This means that the brain is getting too much GABA when we take these drugs, and they dramatically slow the brain down; leading to physical, cognitive and emotional disturbances. Fortunately, GABAs are neurotransmission inhibitors so they pretty much just slow the brain down, rather than act upon it in more complex ways that could affect all sorts of chemical interactions, and thus present greater potential risks.

As the father of four and grandfather of eight, as well as a former mental health professional (psychiatric social worker), I can assure you that mood swings are common among pre-adolescent and adolescent children. As a person with RSD, I know the pain, disability, and isolation imposed by this disease significantly affect our emotions. 12 year old children have few life experiences to draw upon when confronted with all of this.

GABA drugs (and their additional side-effects), could exacerbate these problems, and you are rightly concerned with this and should carefully monitor her emotional state, but if they have a significant effect on her pain and if her mood swings don’t get too extreme, I would continue with it if it were my child. You are the best judge of that.

I may disagree with her doc about the role of psychological factors in RSD, but I think it best to trust him when it comes to selecting dosages (with feedback from you and Ali, of course), rather that ask advice from others. I trust he knows when to seek advice from other professionals with possibly greater experience in treating children with this disease.

Also, medications side-effects often diminish over time, so unless they appear to be severe, I would try to be patient and wait to see how efficacious Lyrica is with your daughter.

I don’t know who makes Lyrica, but it is probably not one of my favorite pharmaceutical companies: I have no favorites, preferring to dislike all of them equally. It’s true they do produce drugs that help countless people, and that research is enormously expensive, but they are also run by price-gouging, greedy people whose primary goal is to become multi-billionaires. They seem to be very successful at that.

I share your hope that Allison will soon recover, but until that happens, pain relief is so important that other concerns (but not obvious dangers) need to be secondary considerations…Vic

As I was about to post, I noticed Joan’s reply. I think the information she offered may be useful, but only if contrasted with similar information about other drugs in this class, and the bottom line is still what it has always been: Do the benefits outweigh the risks and side-effects?