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UPDATED: Sun, 11/05/2006 - 4:24am

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edhryb
edhryb

Tried to Get My Daughter Off Dilantin - Need Help

My daughter had partial seizures, initially misdiagnosed as benign epilepsy. For weeks they happened more frequently until they were coming every 15 minutes in the hospital when they were finally stopped with Dilantin and Depokene among other meds. She's now 6 and was seizure free for 2 1/2 years with Dilantin only. Our doctor suggested trying to take her off her meds to see if she outgrew the seizures. A few weeks into the weaning, she started to have small episodes. We got her fully back on Dilantin, but we can no longer stop the episodes, This morning she had a full, five second seizure just like 2 1/2 years ago. Now the doctor says that sometimes medication will no longer be effective after you try taking them off it!!!! Why I wasn't warned of this risk I do not know. Anybody have similar issues and suggestions? I'm terrified we're heading down the same path again.

By edhryb at Sun, 11/05/2006 - 4:24am | 830 views | 4 comments

Recent Comments on this Discussion

Your body can get immune to meds. But I was always told, that when taking off and going back on your body will get immune all over again but in time. As our bodies change we may not have the same effect as you did in the past. But your daughters body didnt change. FOr she got off and on very quickly.

Usually a doctor wont take you off when they think you grown out of epilepsy until they are about 18 or so.

I would get a second opinion, for this doctor doesnt sound like he knows what he is talking about.

best of luck
lisa
http://health.groups.yahoo.com/group/epilepsyapproach/

angel_lts

Thanks. I actually did get a 2nd opinion and both docs suggested trying to get off the medication. They said that once you pass 2 years seizure free, there's not much statistical advantage to waiting any longer with partial seizures. We also had a couple of clean EEGs. I'm just wondering if she's going to have to go back a two meds or change to a new one now. I know Dilantin is on old drug but she was tolerating it very well and not showing any side effects. I just want to get back to the point where I don't have to watch her every minute of the day looking for signs of a seizure. We have a doc appointment on Nov 17th and hope to get her blood levels checked before that.

- Ed

edhryb

Well, of course she can have seizures when your body is so immuned to a drug and then going off of the med.
Yes it could be possible the levels were a bit low at the time too.

Remember taking Dilantin for a length of time, can cause bone loss.

*Long-term side effects
Some other side effects only appear after a person has been using

Dilantin for a number of months or years. They are usually related to taking high doses. The most common ones affect appearance:

overgrowth of the gums
excessive hair on the face or body
acne
coarseness of facial features
Overgrowth of the gums (gingival hyperplasia) is more common in children than in adults. It can be reduced by vigorous brushing, daily flossing, and regular visits to the dentist, who may recommend additional treatments. If Dilantin is stopped, the gum problems won't get worse, and in some cases will go away within a few months.

Long-term use of Dilantin also has been found to cause weakening of the bones. Bone disease is even more likely if a combination of seizure medicines is used. People taking Dilantin should exercise, take vitamin D supplements, and eat foods rich in calcium. Some non-food sources of calcium, such as Tums and Os-Cal, reduce absorption of Dilantin. They can be used but should not be taken within about 2 hours after taking the Dilantin.

Some people who take Dilantin for several years may have damage to the nerves in their legs. Faulty reflexes can be seen in a minority of this group.

Damage to the part of the brain called the cerebellum may affect others who take Dilantin for a long time, especially if they take high doses. Damage severe enough to produce significant problems is uncommon, however.*

best of luck to you
Lisa
http://health.groups.yahoo.com/group/epilepsyapproach/

angel_lts

Believe me, I've read up on all the side effects. Dentist says all is fine so far on the gum issue, but I know I would need to increase dosage as she gets larger. Not sure what choice we have though. I guess other options are Trileptal, Topamax and Lamactil? I've read bad things about all of them. Once she is seizure free, we'll probably try to move her to one of those. Just a different set of side effects. My only hope is that treatment options improve over time, giving her some other options.

edhryb