can you get used to "E" meds and they not work anymore? - Epilepsy Message Board

gagcas · 01-30-2004, 01:50 PM

Hi everyone. just had a question for ya. when gage was diagnosed with epilepsy in november, he was put on ethosuxamide(zarontin). we found out because he was having horrible temper fits and lacked in concentration etc. he was put on the meds and i noticed within the week that they had subsided and i had a normal 4 year old again. i have noticed over the last 3 weeks or so that he has slowely been getting the anger fits, and irrability, and lack of concentration back. more so this past week. could he just be used to the meds adn they are not working anymore. we are waiting for the EEG results to come back and i have a feeling that it will come back abnormal. im going to have to play round robin with the meds again huh. i called his dr. today to see what we should do but i thought i would try here too, to see if you all have any experience with this happening.

LisaGuthrie · 02-04-2004, 03:17 PM

Hi Jennifer,

Yes, people can get use to the meds. However, my guess is that Gage is going through a growth spurt. I think that was a lot of Jake's seizure issue early on. He was so small (10 mths) when they started that he was always out growing them.

For children the dosage is often figured on weight. Put him on a scale - and let me know. If he has gained call the Dr tomorrow and ask if you can do a slight increase and have blood levels checked at the next appt.

(((HUGS))) It's hard I know, but you are doing such a great job! Keep it up Sweetie!

Lisa and kids

gagcas · 02-04-2004, 06:17 PM

Quote:

Originally Posted by LisaGuthrie

Hi Jennifer,

Yes, people can get use to the meds. However, my guess is that Gage is going through a growth spurt. I think that was a lot of Jake's seizure issue early on. He was so small (10 mths) when they started that he was always out growing them.

For children the dosage is often figured on weight. Put him on a scale - and let me know. If he has gained call the Dr tomorrow and ask if you can do a slight increase and have blood levels checked at the next appt.

(((HUGS))) It's hard I know, but you are doing such a great job! Keep it up Sweetie!

Lisa and kids

hi lisa, thanks for the info. gage weighs 35 lbs. the same as his 1 1/2 year old sister. can you believe that one.

do you mean his siezures came on from him growing and thats what was causing them or that everytime he grew he had one. you kind of lost me on that one

sorry. i havnt noticed any difference in him yet and he has been doing this medicine for a week on friday. i noticed in the other post that you specifically said not to give him dialantin(spelling). what is bad about that one. could you give me some insites on that. i think that was the other medicine the neuro was originally going to put him on but i said the monthly bloodwork would scar him for life. if the zarontin isnt working im afraid that is what she will put him on. i know it affect the kidneys as far as stones and what not(im thinking as she is telling me this, why give it to a 5 year old), but im not that educated on that one. thanks for the help. talk soon.

LisaGuthrie · 02-05-2004, 04:41 AM

Hi Jennifer,

Sorry about losing you like that. I'll try again and I don't have the boss looking over my shoulder so maybe it'll make a bit more sense.

Unlike adults who can maintain a pretty constant body weight over years, children are for the most part on a very slow but stead increase until they reach adulthood. From birth until around 18 months parents often notice very rapid increases. Then the child seems to level out and grow slow - but often the child will experiance short but quick increases in both height and weight.

Jake's Trileptol is figured at 2 milagrams per kelo (sp). So his dosage could be as high as 15 milagrams per day while he weighed 30 pounds.

Jennifer, there is a formula that the Dr uses and I can't find where I've written it down SO please don't quote me on the that! But I think you get the idea!

Currently, he is only taking 12 mlgs per day. The Dr is letting him "grow" through the formula. Meaning that we could increase the dosage another 3 mlg per day if he starts to seize again.

The first several months he was seizing was like trying to hit a moving target. The Dr would increase the meds and he would go for days and sometimes weeks with out seizing - then bam! Here they were again... often this would center around gains of weight. Not so much now that he's leveled off.

So, if the Neuro is figuring Gage's meds based on a weight formula that could be what you are seeing. He has simply grown through the formula that was working for him. If you were able to get control at a lower dosage then you simply increase the med. But, after a while you could reach the maximam dosage recommended for that med.

As far as Dilantin... There are several people on the board who have had great luck with it and were able to gain control. For Jake the levels that were needed to gain the control were to high for his body to tolerate. There can be some pretty scary side effect to this drug. For a person who can speak for themselves fine and dandy... but for a child who can't talk and tell you what they are feeling - I would not encourage any parent to place small kids on it!

Hope that helps!

Love and light

Lisa and kids

gagcas · 02-05-2004, 05:38 AM

thanks lisa that was a big help. now i understand it a little better. maybe that is what is going on. ill have to ask about it. i am positive i wont allow them to put him on the dilantin. it just spooks me and gives me the jeebies. maybe because i dont trust it. will let ya know how it goes.
jen