Neurontin

[Guest guest]

Hi Everyone;

I've noticed a few occasions where people have mentioned the use of neurontin for pain. If there's one thing I've really been struggling with lately is whether Kirkland's in pain or not. Many of you talk of migraines and the pain that your kids exhibit. It sickens me to think that Kirkland could be experiencing such pain yet not expressing it. We're constantly trying to figure out whether or not he's uncomfortable. Sometimes we assume pain due to an increase in seizures and automatically give him tylenol before any additional AED's. Often it lessens the seizure activity but sometimes it doesn't.

He had a broken femur for three days in hospital this past July before it was diagnosed. All he did was whimper a little. The only time I've ever really seen him cry in pain has been when an IV site has gone bad.

I talked to his Mito doc about neurontin and she has no probs with giving it to him. I just left a message for our Neuro to see what he thinks.

Can anyone give me some feedback on your experience?

Example: Are the side effects bad?

Is it better than giving constant doses of tylenol?

Do you think it's safe as a maintenence drug even if the patient's not

always in discomfort?

Has it helped seizures? worsened seizures?

By the way, I do value your advice on these issues and so do Kirkland's docs. Often when I bring something new up to our neuro or mito doc, one of the first things they ask is, "What does your group say?" or "Can you get some feedback on this from the mito parents...?"

Thanks a bunch! Would love to hear from you.

luv , mom to Kirkland 3.5 yrs, Complex One, intractable seizures, G-J tube, osteopenia, CVI, autonomic issues, 24 hr O2, severe dev'l delays

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