Stopping AED's for Absence Seizures, diet changes to controll seizures

[Erika]

Hi, I am new. My 7 year old has absence seizures and a thalamic glioma. Since school is almost over, I am considering stopping his AED'S and changing his diet. Anyone with experience with this? I assume I need to taper off the meds. Neuro isn't very supportive, but my kid has been on 4 meds already, and seizures aren't completely controlled. Since I put him on a gluten-free diet a few months ago, my husband and I were discussing that we think he is having less seizures, and is making strides in overcoming balance and coordination issues.
Neuro's only want to prescribe meds, and the side effects are severe for my son. Both his younger brother and myself are gluten intolerant, so we think its worth a try. We are planning on eliminating milk as well, as he has had an ongoing problem with constipation and encopresis.
Since we don't have the support of the Neuro, does anyone know a how to taper off Topamax and Lamictal? Will he be at risk for having a tonic clonic? I have heard that this can happen.

 

[Nakamova]

When tapering off a seizure medication it's good to keep the neurologist in the loop. A responsible doctor will give you instructions for how to do the taper (even if he doesn't support your decision).

Generally speaking, "low and slow" is the safest way to do it. This means tapering in small increments, with at least a two-week stay at each level to allow the brain to adjust. It's possible that you could go faster, but going as slow as possible is more likely to minimize any withdrawal side effects. At minimum, you don't want to taper off any faster than you ramped up.

Topamax and Lamictal don't affect one another's absorption rates, so you don't need to worry about that aspect. You might want to do just one drug at a time so it's easier to keep track of the dosage schedule.

 

[Kelly]

Maybe you could do the diet change first and see if that along with the meds control them completely. Is this possible? Hopefully someone here knows that answer. If so then once the seizures are controlled then if you still want to you could slowly get him off his meds one at a time like Nakamova suggested.

Good luck and I hope it all works out for you and your family.

 

[Zolt]

Kelly has a good point, start the diet first. Also have the docs done the usual, ct, mri, eeg on him? I know the hate for drugs, but my hate for seizures is worse, so i take them. Definitely ask for another doctor if the one you are seeing is not very helpful.

Good luck and make sure he is safe during your trials. I was on Lamictal (lamotrigine) and that did not help me whatsoever, it made my seizures worse. It's definitely a drug you need to ween off gradually. I haven't had the other one, but always go slow with meds.