kristi28
01-05-2002, 08:34 PM
I am 28 and have been diagnosed with epilepsy since 13.For the past 10 years I have been on tegretol, dosages vary but now on 400mg/day. Recently, I have started considering having kids, but I have always heard about birth defects with tegretol. I went to see the dr. the other day with some general questions about this and he was horrid! he told me I couldn't have kids, DON'T get pregnant, etc. etc. He is a GP, and when I asked him if he had ever had firsthand experience with women and preg. and tegretol, he said no. How nice. I am just sick about this now. I take folic acid everyday, just in case the unforseen happens, but was wondering about a few things...How much folic acid would a person in my situation take? Is my dosage particularily high when thinking about preg.? What about going off for the first trimester-it wouldn't be my first choice, I now experience grand mal seizures and am completely out for 45 mins or so, its not pleasant. I've read a lot of comments from women saying their kids are fine, no problems, but has anyone out there suffered problems? An finally, anyone who has helpful sites, or any information I would love to personally hear from them kri25sti@hotmail.com
Sponsor
Labs-R-4-Me
01-07-2002, 03:29 PM
Go to a epiltologist who can recommend a doctor who has delt with high risk pregnancies before. They can work together to make sure you have a smooth pregnacy and a healthy baby. I don't know all your medical history but if that doctor is saying that due to the epilepsy then you need to change docs. He's way behind the times. Whatta jerk!
Good Luck!
Good Luck!
nanita
01-08-2002, 01:27 PM
hello Kristy:
my name is Nanita. I am 28 years old and I had problms with seizures also but I dont have it right now, O f cours im still taking the TEGRETOL 400 MG A DAY.
in 2000 I've got pregnant and i had a miscarriage.
Last year i've got pregnant and i supposed to be 3 months.
Last week when i saw my obgyn we couldnt find the heartbeat and she sent to me for another better ultrasound. I went today and no heartbeat.
So they have to do D&C
I have been very sad because now there is another lose and i dont know if the TEGRETOL IS CAUSING ME THIS.
I HEARD that many women dont have problem with this kind of drugs but i heard other s that they have problems with preganncies and cannot have babies, My sister that was working in a hospital she told me that she had a coworker taking this medicine and after many attempts she decided to adopt.
I am very sad, terribly sad with a big hole inside me.
I would l ike to have the pleasure to meet you.
you can write me to my e-mail.
if you want
lilianawood@wowmail.com
my name is Nanita. I am 28 years old and I had problms with seizures also but I dont have it right now, O f cours im still taking the TEGRETOL 400 MG A DAY.
in 2000 I've got pregnant and i had a miscarriage.
Last year i've got pregnant and i supposed to be 3 months.
Last week when i saw my obgyn we couldnt find the heartbeat and she sent to me for another better ultrasound. I went today and no heartbeat.
So they have to do D&C
I have been very sad because now there is another lose and i dont know if the TEGRETOL IS CAUSING ME THIS.
I HEARD that many women dont have problem with this kind of drugs but i heard other s that they have problems with preganncies and cannot have babies, My sister that was working in a hospital she told me that she had a coworker taking this medicine and after many attempts she decided to adopt.
I am very sad, terribly sad with a big hole inside me.
I would l ike to have the pleasure to meet you.
you can write me to my e-mail.
if you want
lilianawood@wowmail.com
kimber27
01-13-2002, 01:44 AM
i am 27 and have had 2 kids on tegretol both pregnancy were great. i have also had 2 miscarrages, dont know if they were caused by the meds or not. the doctor prescribed 1 mg of folic acid a day for me. when i asked my doctor about the meds he told me i had a greater chance of hurting the baby by having a seizure and falling while being off meds then i did of taking the meds as perscibed and the baby having deformaties. he said that about 2% of women who are pregnant and taking tegretol actually have problems due to the meds. according to him tegretol is one of the best meds to take while pregnant if i remember correctly phenobarbitol was the best to take but i am allergic to it. when i got pregnant with my first son my doctor did the same thing your did scared me to death, when i walked in to his office he gave me directions to the nearest abortion clinic and told me he already made the appointment. i told him i would get a second opinion and walked out. i was so scared, but when i went to the 2nd doctor he reassured me that he would help me thru it and would do all the neccessary tests to make sure the baby is ok thru the entire pregnancy. the 1st doctor told me my son would never walk, talk and would be mentally retarded. my son is now 7 yrs old plays teeball, does karate, in the first grade speaking spanish and english, and is a great kid. there are days that i want to walk into the 1st doctors office with my son and tell him "look what you wanted me to kill". i hope everything works out for you i know how scary it is.
kimber
kimber
roxanneu
01-19-2002, 12:37 AM
Good news, perhaps...
I went to my neurologist (young, female, and pregnant) who fully understood my concerns about epilepsy and pregnacy. Although I don't take a theraputic dose of Carbatrol (time-released Tegretol), she said there are new drugs on the market that can control seizures with far less adverse effects. Get out the PDR and get a new doctor...check out Lamictal, Neurontin, Topamax, and others.
I went to my neurologist (young, female, and pregnant) who fully understood my concerns about epilepsy and pregnacy. Although I don't take a theraputic dose of Carbatrol (time-released Tegretol), she said there are new drugs on the market that can control seizures with far less adverse effects. Get out the PDR and get a new doctor...check out Lamictal, Neurontin, Topamax, and others.
kellyha
02-02-2002, 08:11 AM
I take Dilatin and I have 2 children. The Dilantin is not working anymore so I have to get onto Tegretol. I am 31 years old and my Dr. suggested that I have my tubes tied because of the side-effects of Tegretol. I have been very upset about not being able to have anymore children. I was very angry that someone could tell me that I could not have anymore children. I just read what you wrote and now you have helped me. Thankyou! What I would suggest is that you find another Dr. because your Dr. sounds very MEAN, to put it mildly. I know what I said doesn't help you but you have really helped me!!!!!!THANKYOU
Phyllis63
04-02-2002, 05:59 PM
Hi,
I read your message and want to tell you that I have a healthy and beuityful daughter who is now 13 years old and is normal in most ways. She does have a learning disablity, but I believe it is a genetic defect due to my e-husbands problems. He has all the same problems, but worse. Even if she has developed this from my taking Tegretol I wouldn't have changed anything. We all take chances when getting pregnant. I had a very blessed pregnacy and I also breastfed her. She is the joy of my life.
Now I am 38 yrs old and thinking of another child my husband & I of 7 yrs are thinking very strongly of another child. We are doing well now and things are very happy. I still don't know if we are going to decide to have another one or not. But, I am not going to let my epilepsy stop me.
My nerologist said not to get pregnant again either. But I think he isn't the only doctor out there. I am seeing my ob next month and my husband and I are going decide after that. Good Luck. Happy family!!
I read your message and want to tell you that I have a healthy and beuityful daughter who is now 13 years old and is normal in most ways. She does have a learning disablity, but I believe it is a genetic defect due to my e-husbands problems. He has all the same problems, but worse. Even if she has developed this from my taking Tegretol I wouldn't have changed anything. We all take chances when getting pregnant. I had a very blessed pregnacy and I also breastfed her. She is the joy of my life.
Now I am 38 yrs old and thinking of another child my husband & I of 7 yrs are thinking very strongly of another child. We are doing well now and things are very happy. I still don't know if we are going to decide to have another one or not. But, I am not going to let my epilepsy stop me.
My nerologist said not to get pregnant again either. But I think he isn't the only doctor out there. I am seeing my ob next month and my husband and I are going decide after that. Good Luck. Happy family!!
Phyllis63
04-02-2002, 06:05 PM
Originally posted by kristi28:
I am 28 and have been diagnosed with epilepsy since 13.For the past 10 years I have been on tegretol, dosages vary but now on 400mg/day. Recently, I have started considering having kids, but I have always heard about birth defects with tegretol. I went to see the dr. the other day with some general questions about this and he was horrid! he told me I couldn't have kids, DON'T get pregnant, etc. etc. He is a GP, and when I asked him if he had ever had firsthand experience with women and preg. and tegretol, he said no. How nice. I am just sick about this now. I take folic acid everyday, just in case the unforseen happens, but was wondering about a few things...How much folic acid would a person in my situation take? Is my dosage particularily high when thinking about preg.? What about going off for the first trimester-it wouldn't be my first choice, I now experience grand mal seizures and am completely out for 45 mins or so, its not pleasant. I've read a lot of comments from women saying their kids are fine, no problems, but has anyone out there suffered problems? An finally, anyone who has helpful sites, or any information I would love to personally hear from them kri25sti@hotmail.com
I am 28 and have been diagnosed with epilepsy since 13.For the past 10 years I have been on tegretol, dosages vary but now on 400mg/day. Recently, I have started considering having kids, but I have always heard about birth defects with tegretol. I went to see the dr. the other day with some general questions about this and he was horrid! he told me I couldn't have kids, DON'T get pregnant, etc. etc. He is a GP, and when I asked him if he had ever had firsthand experience with women and preg. and tegretol, he said no. How nice. I am just sick about this now. I take folic acid everyday, just in case the unforseen happens, but was wondering about a few things...How much folic acid would a person in my situation take? Is my dosage particularily high when thinking about preg.? What about going off for the first trimester-it wouldn't be my first choice, I now experience grand mal seizures and am completely out for 45 mins or so, its not pleasant. I've read a lot of comments from women saying their kids are fine, no problems, but has anyone out there suffered problems? An finally, anyone who has helpful sites, or any information I would love to personally hear from them kri25sti@hotmail.com
dayna5
04-02-2002, 09:09 PM
Hello,
I was also on Tegratol when I was pregnant for my forth kid. On my other pregnancy's I refused to take meds but because my seizures were so out of control before pregnancy, my doctor insisted on me staying on Tegratol. I was on (I believe, since it was 6 years ago,) 2,000 mg which concerned my ob. I had ultrasounds every month to watch for problems and at about 6 months had a level 2 ultrasound and genitic counciling which scared the crap out of me. The councilor told me how many problems there could possibly be on Tegratol. I flipped out and almost yelled at my OB. He told me that was their job to point out the possibility of defects and there was probably not any damage...and if there was maybe a earlobe would be a little smaller. (yikes!!)
Anyhow, my son did come out "normal". No problems with him whatsoever. Now the only thing is he does have alot of special needs. (learning disablity) I sometimes blame the tegratol because his learning "speed" is extremely different than all my other children. Now, I know kids develop at different rates and all my kids did develop somewhat different but Billy (my "tegratol" son, lol) is experiencing alot of trouble. And also, honest, there is no proof that the medication is the blame for his disabilities...I am just a mom who feels really guilty and feels responsible for indangering him.
I know I am rambling quite a bit, but it still upsets me. I feel like I consciously gave him medicine that could have "damaged him". On the other side though seizures (I think) are dangerous for the baby. I think the biggest thing is you should do the risk/risk outcome. What would be more dangerous for your baby. Are you having terribly active/constant seizures? Without your meds, are you able to control your seizures? Are there any other meds that are safer?
I feel really bad for taking the medication while pregnant. On all my other pregnancy's I took myself off of all meds on my own. I also have TLE, so I don't have "seizing" seizures so I feel like I can handle my seizures...I just hate them and get very confused. So if I had grandmal seizures, I think medication would be less of a danger than seizures...but that is only my opinion, which I have no medical experience to even say that statement. (I want to make sure no one takes that opinion as fact...just a regular person who has/hate her epilepsy)
Talk to your doctor, talk to different doctors. My neurologist came out and told me I had to stay on meds but I was his concern, not my baby. And also, don't deny yourself of the pleasure of having children. Lord knows I have five and they are wonderful and physically healthy and active...and funny...I could go on. Anyone could have learning disabilities and even if it was caused by the tegratol, who knows what damage my seizures would have done to him while I was pregnant. (I was having three or more seizures a day at that time...totally out of control)
Good luck and take care...what also isn't good for a pregnancy is worrying. I am sure only good will happen for you and worrying very rarely changes the outcome of any situation.
dayna :angel:
I was also on Tegratol when I was pregnant for my forth kid. On my other pregnancy's I refused to take meds but because my seizures were so out of control before pregnancy, my doctor insisted on me staying on Tegratol. I was on (I believe, since it was 6 years ago,) 2,000 mg which concerned my ob. I had ultrasounds every month to watch for problems and at about 6 months had a level 2 ultrasound and genitic counciling which scared the crap out of me. The councilor told me how many problems there could possibly be on Tegratol. I flipped out and almost yelled at my OB. He told me that was their job to point out the possibility of defects and there was probably not any damage...and if there was maybe a earlobe would be a little smaller. (yikes!!)
Anyhow, my son did come out "normal". No problems with him whatsoever. Now the only thing is he does have alot of special needs. (learning disablity) I sometimes blame the tegratol because his learning "speed" is extremely different than all my other children. Now, I know kids develop at different rates and all my kids did develop somewhat different but Billy (my "tegratol" son, lol) is experiencing alot of trouble. And also, honest, there is no proof that the medication is the blame for his disabilities...I am just a mom who feels really guilty and feels responsible for indangering him.
I know I am rambling quite a bit, but it still upsets me. I feel like I consciously gave him medicine that could have "damaged him". On the other side though seizures (I think) are dangerous for the baby. I think the biggest thing is you should do the risk/risk outcome. What would be more dangerous for your baby. Are you having terribly active/constant seizures? Without your meds, are you able to control your seizures? Are there any other meds that are safer?
I feel really bad for taking the medication while pregnant. On all my other pregnancy's I took myself off of all meds on my own. I also have TLE, so I don't have "seizing" seizures so I feel like I can handle my seizures...I just hate them and get very confused. So if I had grandmal seizures, I think medication would be less of a danger than seizures...but that is only my opinion, which I have no medical experience to even say that statement. (I want to make sure no one takes that opinion as fact...just a regular person who has/hate her epilepsy)
Talk to your doctor, talk to different doctors. My neurologist came out and told me I had to stay on meds but I was his concern, not my baby. And also, don't deny yourself of the pleasure of having children. Lord knows I have five and they are wonderful and physically healthy and active...and funny...I could go on. Anyone could have learning disabilities and even if it was caused by the tegratol, who knows what damage my seizures would have done to him while I was pregnant. (I was having three or more seizures a day at that time...totally out of control)
Good luck and take care...what also isn't good for a pregnancy is worrying. I am sure only good will happen for you and worrying very rarely changes the outcome of any situation.
dayna :angel: