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linzysmith323

terrified to get pregnant

Hello,

My name is Linzy and I am 26 years old. I was diagnosed with Absence seizures when I was 23. I have been on a boat load of medications to control them and now I am on Lamictal which has done the best so far. I have been increased recently because of some breakthrough seizures. My husband and I have decided to have a baby and I am terrified for the health of the baby. My doctor told me that Lamictal can cause cleft lip, palate etc., to the fetus and that I cannot breast feed. I take 125mg of lamictal in the morning and at night. I have always dreamed of having children - healthy children. I would love my child no matter what but doesn't everyone want healthy children, free of defects? I have also always dreamed of breast feeding. I was pretty devastated when my doc told me that I wouldn't be able to breast feed my child. I want to be able to have that connection with my baby. I guess I am just hoping for some similar stories and to know that there are people out there who understand where I am coming from and how much of an impact seizures can put on your life even if they are just absence.

 UPDATE (May 5, 2011): I thought that I would update this thread :) I am happy to tell you all that I am the very proud mother of a happy, healthy and totally normal 9 month old son =) I got pregnant shortly after posting this thread and my whole pregnancy and delivery was completely normal, problem free and most important of all, seizure free!! Towards the end of my pregnancy I did accumulate too much amniotic fluid but it wasn't a worry at all and my water ended up just breaking on its own 2 days after my due date which kicked off 21 hours of labor and 2 hours of pushing, to which I welcomed a very healthy 7lb 14oz baby boy (with the help of the vacuum because he was coming down at an angle and was a bit stuck!). He was pretty jaundice for a while because he ended up getting some of my blood during delivery but that went away within 2 weeks. He does have an undescended teste which is fairly normal in boys anyway and has nothing to do with the lamictal. He already had the first surgery to fix that and is doing awesome. I haven't had any seizures since before I got pregnant which is really awesome since I was having them fairly often. And which is even more amazing seeing as my soon to be ex-husband wanted a divorce right before we found out I was pregnant and wanted one even faster once we found out I was pregnant a week later. I ended up having to move 9 hours away back to my hometown while I was terribly sick with morning sickness. To go through all of that stress and not have a seizure is pretty awesome I think! I was really scared about birth defects and such when I was ttc but now I know how small of a chance those things are especially with lamictal and in the future if I find someone else to spend the rest of my life with I will have no fears about having more children. Thank you all for your support and for sharing your stories! I wish you all the best of luck!

Comments

Re: terrified to get pregnant

I can understand you, to be afraid of medicines, but I think is is not high in%, that things are not allright. .  I have 4 children, all very good and healthy, and I remember that the doctors said that  breastfeeding was alright.  And it was so.  Then I had Tegretol, and I had more medicine than you have.  I sometimes have thought that I was not careful to have 4 children.  But they are all good and clever people, and I have never been worried about them.  Therefore I am very greatful, and they are the best in my life.  I say good luck to you, and don´t be worried. I am sure it will also be the best in your life to be mother. 

Re: terrified to get pregnant

Thank you for the luck :) And congrats on your 4 children! Wow - you are an inspiration.

Re: terrified to get pregnant

Like you, I am terrified to get pregnant. I am taking Topamax 400mg daily and have been seizure free for years. I am ready to start a family but when I talked to my family dr. about it he told me that I should change meds. That freaked me out, I have been doing so well on this one, the idea of having to try out another is scarey.

Also I have been researching the effects of AED's on baby's and that has been a big worry. But I am always inspired when I hear that someone else is finding out good news or is having healthy babies on AED's. Let me know if you hear something good :)

Re: terrified to get pregnant

Hi.  I will for sure post when I find anything out - you as well, please :) I see my neurologist at the end of this month and I have a ton of questions for him!

Re: terrified to get pregnant

Hi everyone - this is my first time actually adding something to a blog on here, so it's new, but I love knowing that there is a support system type deal and answers to questions as well.  My name also is Lindsay, I am also on Lamictal, and I am almost 26 (The similarities are uncanny!).  Anyways, I'm in the same boat as a few.  I'm thinking of possibly trying to get pregnant next year or so however I've been doing so well on Lamictal and frisium.  Haven't had a seizure in 2 years! YAY!!! 've been reading about having to change meds and that's scary.  Also I don't know how soon to try for a baby since I've also heard that with AED's it's harder to conceive.  Anyone have any stories or comments on any of this?? I have also always dreamed of having a healthy baby and wanting that breastfeeding connection (man Linzy we are rather similar).  I'm also hoping for a normal delivery and have also heard of women being healed of seizures after having a baby?!?!?!?

 I am a God believer and have total faith that the fact I've been seizure free for 2 years is due to being completely healed, but you can't be stupid and just go off your meds right away, so I haven't done anything crazy like that, but still I want a healthy pregnancy and such.

 Thanks everyone and thanks Linzy for starting this blog!

Re: terrified to get pregnant

I am now 40 years old and over the last 1 year I am weaning myself off of all seizure medication! Only down to 1 500 mg. Keppra a day. However back when I was on a full dose, I would not even THINK of having a child. Too worrisome. I ended up adopting the sweetest angel from China who ironically enough has made me GRATEFUL for my condition as that is what had me explore other avenues for a family. I could not imagine my life without her and thank God for it. Epilepsy was a blessing for me...

Re: terrified to get pregnant

Smilz,

This is more a comment on your faith in healing. It is possible you have had a miracle, but often miracles come in more conventional ways. IE: the medication is working. Don't stop taking it. Or if you do, do it slowly, make people aware and if you had warnings before your seizures when they used to occur, take heed of them. For me, my miracle is finding a drug that can control my seizures pretty much 100%. I tried several and none woked. I was desperate by the time I tried the last one. Eureka! No seizure in 12 years, but after 18 months off my medication to see if I still had it (since I developed E when I was 8) and it appears I do. It is also possible that I had a drug-withdrawal seizure, but either way I got my miracle. Went back on the meds and my brain settled down again. Almost 4 years since my last seizure. So perhaps you have received a miracle - but it's one that needs caring for, so-to-speak. Those of us with controlled E, are very fortunate. But ALL of us with E, understand how fragile the balance of the body is. So it's perfectly normal to be terrified to get pregnant when you're living with it, or recovering from terrible bouts with it. These are great discussions.

Re: terrified to get pregnant

Hi,

I live in Europe, am on Tegretol CR 400 and clonazepam. I have one of the best doctors in Poland and one of the best in Europe (in Paris, where they specialise in epilepsy).

When I asked about having children both of them reacted the same way: "Yes, of course, why not?". And then both said the same. That I would have to get off of my meds. And it took years to find THE combination and if I do that and get pregnant I will have grand mal seizures for sure. Each grand mal seizure "cuts" the air that the foetus should get, so each of them can potentially cause cerebral damage- and there are thousands of kind of diseases that your kid could get.

If I would get pregnant and stay on my meds, the meds would cause different kind of damages to the baby.

This was their opinion. They would say yes, but if you're ready to have a discapacitaded child.

Now my opinion is: what kind of mother would I be if it didn't bother me to give life to a baby that will have even moe problems than I do? It's not important that I would love him- of course I would- but I won't do something like this deliberately. It's cruel and extremely egoistic.

Now, this is my situation, with different meds and maybe different seizures.

As for breast feeding: you can't take alcohol when you breast feed, you can't eat stuff that your baby might be alergic to, etc. do you think that taking your meds would do him any good?

The reality is cruel and I realize I might be cruel when writing this words. It's just that IF in your case too the risk of a disease is estimated as quite high- would you do this to your baby just for your own happiness?

There are other ways to have children too. And this is what we are thinking about, my husband and I.

I apologise if I don't sound nice to you, it's a sensible subject for me because it hurts not to being able to have what you want.

Best wishes,

 

Ola

ps. I also saw women with epi giving birth to totally healthy children- but my doc would say that they were taking really small dosis of meds.

http://everybodycan.wordpress.com/

Re: terrified to get pregnant

You sound like you are taking your frustations out on me. I understand the risks, and I would never have a child knowing that major medical problems would occur. This is some information I found on this site. I have found more information on the subject and it has been more of the same.

In this study, of 564 women who received lamotrigine alone, 5 instances of isolated cleft lip or palate (not seen as part of any specific syndrome) were seen in the babies. This data gives a prevalence rate of 8.9 per 1000, which means that oral cleft problems may occur in 8.9 of 1000 women treated with lamotrigine monotherapy. This number is 24 times higher than the risk of oral cleft problems seen in babies from the comparison group used in the study.

This same article also states that breastfeeding while on lamictal is not recommended. I never said that I would breast feed while on the medicine against medical advice, I only said that I have always wanted to breast feed. I would NEVER sacrifice the health of a child for my happiness. I am a medic and I do understand the risks. I have three doctors that I have talked with about getting pregnant, my ob/gyn, my neurologist and my family practice doc. I know cleft lip/palate is a risk but it is also fixable with surgery and it happens everyday. When I said that I would love my child no matter what - I meant that I would love my child even if they were born with a cleft lip/palate because that is a risk. Not that I would just go blindly into a situation and decide to have a baby against serious medical problems and if that happened - love them anyway. Like I don't care about anything but my happiness.

I know it hurts to not be able to have what you want - I live it. I would be considered a high-risk pregnancy so that my doc could do a 3D ultrasound early on to check for cleft abnormalities. I was never told that I can't have children because I take lamictal - just that there are precautions and a higher percentage of children born to mothers who take lamictal have cleft lip/palates.

I intend on talking with my neurologist about my med and if there are any options as to a different med that would be safer while I am pregnant (and one that I could breastfeed on).

I merely posted on this forum to talk with people who are going through the same thing and may have advice or just a similar story. Not to shoot me down or treat me like I am a moron and a "cruel" person. Maybe you were trying to give some advice or "support" somewhere but I felt as though you were attacking me.  I am not on here to argue nor to have a debate - I just wanted to clear my side up if there were any misconceptions.

Re: terrified to get pregnant

You see, knowing all the things that you posted in your reply, it seems like you know what you are doing. It just didn't seem in the post- this is why I reacted so strongly and even apologised in case I misunderstood you.

The written word is so easy to get misunderstood since I don't know your tone of voice, etc I don't know you and you don't know me. I didn't try to put my frustration on you either. I'm over with my frustration. What I will always try to argue with it's people who want to have children no matter what, just because they want, they should, or they don't have any other purpose in life. You don't seem like any of these people- and you did a little bit in the original post, which was quite short and lacking some information.

Each case of epilepsy is different- you take different medication, you have different seizures and therefore the risks are different. As I told you, I was also shown by my neurologist many cases of women with epi who had perfectly healthy children.

From what you tell in your reply I also can say that you will probably get pregnant and have this beautiful and healthy baby that you dream of, as most of people do and I wish your dream to come true.

To finish I would like to add- something that I had forgotten before- is that I was told that I wouldn't get a natural birth (I would have to have a C section) and also that I would have to be admitted in the hospital as a high risk pregnancy patient (I was told that by a third neurologist).

So if you can, just get a second opinion from a neurologist.

Take care and good luck! : )

Ola

http://everybodycan.wordpress.com/

Re: terrified to get pregnant

I take clonazepam (monotherapy) for my epilepsy and never wanted kids, always worried about not wanting to subject a child to what I went through when I was a kid and not wanting to be on meds while pregnant.

I now DO want a kid (singular) and while it may be hard, I want to plan around getting off my meds before the pregnancy. 

Olga, I do understand where you are coming from. Especially with clonazepam. This stuff works for me like nothing else did and if I were to have a seizure while off the meds, I would get the warning (I'm lucky). Lamictal didn't do anything that I am aware of - but who's to say it did not work. I also understand the comment about selfishness and the possibility of passing on E or a defect due to taking meds. But all pregnancies have risks. All people want their kids to be healthy and free of defects. And unless it's a running theme in the family, I would think the chance of passing on E to your child would be as likely as a child developing something else due to two different sets of genes coming together to bring about a mutation - which does happen too. 

This thread has been very interesting to read and is allaying many of my fears about being epileptic and being bitten by the biology bug (no, not the clock about to expire! lol). 

There is no necessary reason I would pass my E on to my child. My parents and their parents and the parents before them never had it. 

For anyone wanting kids that have E, all I can suggest is (because I'm thinking about it too) look at reality, look at how you have to adapt (changing or stopping meds), job, transportation etc. Kids are a sacrifice anyway (in my opinion). They might be a gift to some, but they also entail a lot of self-sacrifice and putting someone else first. Adaptation and change comes with ANY child in the family - healthy or otherwise. 

The people contributing on this forum are thinking. They are not blind. Many are terrified. I'm not terrified...just trying to figure out my wee juggling act to bring a once abhored idea - I DID NOT WANT KIDS (now dreamed of) to fruition so that the child prospers and the family is not strained. The mere idea my body tells me to have a kid is my notion that there's a child-spirit out there that thinks I might be a good parent  (even though that is a real scary thought to me).

Re: terrified to get pregnant

Do not think that just because you have epilepsy you should not get pregnant , i have always had uncontrollable E & before i fell preg they were 4 grand - mals a week plus complex partials then when i fell preg i was seizure free for nine months & i had my son and then a couple of weeks later they were back with vengence the seizure were back to being regular , it becamme a standing joke i should be pregnant permamnt LOL but it works diff for everyone .

Re: terrified to get pregnant

That is funny, I have only heard of women having more seizures while pregnant. I really appreciate your comment. Like I have said before - it is very comforting to know you aren't the only one and to hear stories with great outcomes.  

Re: terrified to get pregnant

 

I was in the same boat that you are in. I was/am on lamictal while I was pregnant.. I was concerend, so when I talk to my doctor I told her that I was not done having kids, she did tell me that there were some downfalls but very very minor ones.. I was on lamictal while I was pregnant, and I had a very healty set of twins. After I my first child I was concerend about breast feeding as well, my doctor to me that there was no harm.  Both of my doctors told me that it would be fine because while you are carrying the child they are recieving a very small amount of the medication, and they would recieve the same amount if you were to breast feed.  

Re: terrified to get pregnant

Thank you..I really appreciate you sharing your story with me. It makes me feel better to know that there are people out there that have gone through the same thing and are living it everyday just like myself. Congratulations on your babies :) I am going to ask my neurologist about breast feeding because I think that it is so important for the baby.

Re: terrified to get pregnant

I agree with you on that breastfeeding is very important, I was unable to atfirst because i didnt know with the drug in my system. After my first child was about 3 days old I had talked to my doctor and that is when he told me that she wuld recieve the same amount wither way(me carrying her or breastfeeding), although after that she wouldnt take so I was unable to breastfeed with her..

Good Luck to you

Re: terrified to get pregnant

So...I went to my neurology appt.  I recieved good news :) I am going to type out the questions that I asked and the answers I recieved:

-What are the risks of taking Lamictal while pregnant?: He said that there is a 5 out of 100 chance of the baby having a cleft lip/palate.  The biggest worry though is that I would have a tonic-clonic or grand mal seizure which could cut of the air supply to the baby.  He said as long as we check my lamictal level every month - everything should be fine.

-as far as breastfeeding: He said that what his other patients have done is breastfed/pump before they take their medication. Which doesn't help much in my case because I take my med twice a day...So I told him about the research (tons of it ) that I have done as far as the baby getting a higher concentration in utero because I would be taking a higher dose while pregnant and then put back on my regular dose once I have given birth...he said that there are always risks but that the benefits may outway the risks..so really I didn't get a clear answer but it is something I suppose we will have to "wait and see" about.  I have thought about it and maybe what I will do is breastfeed before I take my evening dose and do formula the rest of the time. he said this would be an option as well as just breast feeding the few days after birth. so we will see about this.

-I asked about precautions to take while pregnant - he said just to check my levels every month

-3D ultrasound - I will have a 3D ultrasound because I will considered a high risk

-folic acid or other vitamins - he said that I need to take a prenatal vit (of course) and to make sure that I am getting 80mg of folic acid a day.

-c-section?- I would only have to have a c-section if there are complications - but he thinks things are going to fine as far a the seizures are concerned so the only need for a c-section would be other complications.

- could the baby have seizures or maybe down the road? - he said that it was a possibility but that there is no way to tell. another thing we would have to wait and see about.

SO - I got great information... and I feel quite a bit better. He made me feel as though everything was going to be fine and there wasn't this need for me to be so nervous and worried. my doc said that I am doing very well right now and he didn't want to see my back for a year - unless I become pregnant.  I have been going every three months.. So I hope that someone out there gets some comfort or ideas of questions to ask their neuro or even answers from this!

Re: terrified to get pregnant

I agree with you, I am 33 and scared of getting pregnant.  I am on Lamictal as well I take 200mg in the morning and 200 at night, and it has worked the best so far as well also.  I am afraid to bring a child into the world and it some type of birth defect,  But I would still love it just as much.  I tell myself If god wants me to have a child he will make it happen if not then I wasn't meant to have a child.   But I can totally relate to your scenerio completely.

Re: terrified to get pregnant

I was worried that I sounded insensitive by saying that I want my child free of birth defects - it kind of sounds as though children/people with birth defects are not important or unwanted. But that isn't the case at all - and it is nice to have someone who understands exactly what you mean. I just know the cruelties of other children in school and even adults and it would break my heart for my child to be made fun of and/or have low self esteem because of the defect you know? But just as you said, I would still love them just as much and would be just as excited  for having that child and equally proud. Thank you for commenting! Good luck with everything.

Re: terrified to get pregnant

I've been on Topamax 100mg for 6 years. It controls my seizures well, but I was scared to get pregnant because of the increased chances of birth defects. We were using birth control religiously but Lily just wanted to be born. I had nine very scary seizures, one right as I was about to get into the bath tub. Another in a nail salon on the day of my baby shower. She is turning three in May and is health and beautiful. There is nothing wrong with her. There is always going to be a chance something could go wrong, would you love your child any less? Like my husband likes to say 'No risk, no reward.' Good luck. -laura

Re: terrified to get pregnant

Hi,

When I got pregnant a couple of years ago my Dr changed my meds from Tegretol to Lamictal because he said that, although there were still risks, they were less on Lamictal. He kept a close eye on me, regular scans, folic acid etc. As I saw it, I could take the drugs and risk birth defects or not take them and risk having seizures and hurting baby when I fall.
My Dr didn't tell me I couldn't breastfeed, in fact he thought it would be a good way to wean the baby off the meds! As it turned out our wee one had serious problems when he was born (nothing to do with the epilepsy or drugs) and didn't wake up for the first 5 days so I wasn't able to breastfeed anyway.
I know it must be a really tough choice to make (ours was unplanned so no need to think about it!) My thought are with you either way.
Bronwen

Re: terrified to get pregnant

So..I found out today that I am pregnant! I am excited but still a bit worried. I have a sonogram in about 4 weeks.  I wondered how long it would take me to get pregnant - I stopped my birth control in the middle of september, had my period in october and popped up pregnant now. So it happened really fast.

Re: terrified to get pregnant

Hi there-

I am a 35 y/o female who recently had my first baby in July. I was first diagnosed with epilepsy at the age of 10. I was on phenobarbital for four years and then slowly weaned off of it. I didn't have another seizure until age 28, and I was quite frustrated, because nobody could explain why I went so long without one, and then suddenly began to have them again. Four years later, I experienced one while alone at my house. That was in 2006. I had one last fall right before I got pregnant, and just had one last Tuesday evening. I began taking Keppra during my pregnancy, and it was the first medication I had been on in a while. I previously took Tegretol, but it caused extreme drowsiness, and since I knew I wanted to get pregnant, I took myself off of it with my (then) neurologist's blessing. After the one last year, I switched to a new neurologist. She saw me often during pregnancy, but for obvious reasons, we could not do an MRI or EEG. My baby was born perfectly healthy, and most babies born to epileptic moms are, you will probably just have to have frequent ultrasounds, but at least it will give you reassurance that all is well. I'm just glad I didn't have the seizure while pregnant. I think I know what triggered last weeks (I am currently taking meds for bipolar, which I was diagnosed with after suffering from severe postpartum depression, and I think since lemictral is also an anti-convulsant, it may have had a reaction to my Keppra), but I am awaiting word from my current neurologist.

GL with your pregnancy, I'm sure things will turn out fine :-)

Re: terrified to get pregnant

WOW! So I read what Ola wrote...what a joke. Ok, I have epilepsy, and I have also worked in an OB/GYN office. Now, I was high-risk pregnancy with both my children. I was on Depakote with my daughter, I only had one seizure, and that was right before I found out I was pregnant. I had pre-eclampsia, and I was getting Ultrasounds, and stress test constantly to monitor the baby. Blood work as well. They did induce me, and even though she came out 7lbs, she had to stay in the NICU, just because her lungs weren't totally developed. 11 days later we got to bring her home, and today she is 7yrs old, the only thing wrong with her is she has food and seasonal allergies.

 My son, this time, I was on Lamictal. I had 3 seizures while pregnant with him, and one right after I had him. Again, high risk pregnancy, Many ultrasounds, and stress tests. Induced delivery. Same thing NICU for 9 days. But also born over 7lbs. He's 3yrs old now! And NOTHING is wrong with him!

You can have your own family, and be epileptic. Have your significant other switch feeding times with you, so you can get some sleep at night. DON'T miss any of your medication!!! And you'll be just fine!

 Victoria

Re: terrified to get pregnant

I was on Tegretol for my two!  First one, I had a generalized seizure at 6 months, then fine.  The second baby we moved from west to east coast.  At the time, I was having my babies they told me I could breast feed!  I had a minor problem.  I had inverted nipples.  The Neurologist said you tried, make it easier on yourself and I gave my babies Neutramagen.  They both had colic!!!  Now they have a lot more products on the market.  Get plenty of rest!  That was the key for me! I wasn''t grumpy and I didn't have a seizure!

They are teenagers. One is applying to college right now. My youngest is a freshman in high school.  The first baby I was attentive for any abnormalities and he had a slow reading comprehension.  My daughter did too. When I talked to friends and neighbors they did not take medications their children had similar problems. 

I am very grateful for the challenges I have received!  I wish you the best!

Re: terrified to get pregnant

I had baby on lamictal 400 mg and  I was nursing him as well. Dont be afraid so much. Your dosage is not so big and lamictal is safest drug to have babay on. My son is perfect. I was taking 5 mg of folic acid at a time as well to prevent malformations. My doc told me that some lamictal goes to milk but baby had  meds in him when I was preggo  so it is better to breastfeed him. And  he also told me to breastfeed before i take my meds and dont give milk to a baby 2 hours after I took them when  concentration in milk can be highest.

Im preggo again 19 weeks now but on zonegran. Lamictal did not control my seizures to well after baby so I had to switch. I wish I had this baby on Lamictal.

It is always a risk. Even for healthy women. You have 2 options. Live your life and enjoy it or be scared of everything what life can bring.

You be ok. Just take your meds, take a lot of rest, eat good food , a lot of folic acid befor you get preggo and you be ok.  Lamictal is best to get preggo on. Talk to your neurologist.

Re: terrified to get pregnant

Linzy, I wish you and your husband all the best in life, and hope you have as many happy, healthy children as you wish for! You have done your research (plenty of it too), you are prepared to take the precautions advised and you genuinely want the best for your family! Epilepsy should be a part of your life, but not your entire life! You have the right attitude so go for it! Positive thinking, look after yourself and you will all be fine!! Wishing you love, happiness and good health for the future! You are an inspiration!!

Lisa

Re: terrified to get pregnant

wow. reading your post made my day:) I am going through so much drama right now - i needed that! Other than the drama...I am at a constant level of excitement! I find out what this little blessing is in march! I can't wait. and everytime i hear the heartbeat my heart just melts.

Re: terrified to get pregnant

I just joined here tonight having googled info and this came up. I had to sign up to recommend a book - medications and mothers milk by thomas hale. Most specialists air on the side of caution, but this book details almost any drug you can think of - including herbal and pain killers and how long they are in your system, the risks, any cases studies, puts them on a 1-5 scale in terms of safety. I breastfed my daughter for 16 months thanks to learning so much from this book. Hope that helps. Best of luck( and  hope you're still reading as i know you posted a while  back).

Re: terrified to get pregnant

I am going to look up that book for sure. I never thought of even looking for a book about it..Thank you so much :)

Re: terrified to get pregnant

I also joined tonight, just so I could let you know a little bit about myself.  My family includes 3 beautiful daughters, all conceived, born, and breast fed while I took between 800 and 1000 mg of Tegretol daily.  The closest we have to a birth defect is my middle daughter that possibly has spina bifida occulta.  Basically, she has a vertebra in the middle of her spine (about where her bra strap will be one day) that is pushed forward.  From the outside, it looks normal.  If you run your finger up her spine, you feel the dent.  That's it.  They are 11, 9,  and almost 7 years old.  They are healthy and smart.  Not a cleft to be found.

Re: terrified to get pregnant

Thank you for your post! It is always wonderful to hear from people who know what your fears are and what you are going through. Congrats on your 3 wonderful daughters. what a blessing!

Re: terrified to get pregnant

My husband and I are trying to get pregnant, and I am scared too. I am taking Neurontin, Lamictal, and Trileptal to help control my seizures (simple-partial and complex-partial.) I still have 10-13 seizures a month, but they are short. My thinking is that I will take whatever comes my way...if my child is born with a problem we will deal with it. I want healthy ones too...but God won't give me more than I can handle! Good luck to everyone who is dealing with this!

 

Re: terrified to get pregnant

I wish you all the luck in the world! This is a very scary time but yet one of the most exciting times too. I remember being bummed because all I wanted was to be excited But I felt like I had to be worried too..you are right though, God doesn't give us more than we can handle. I truly believe this. And that is what you have to rely on, faith! Whatever happens is/was meant to be. Good luck and remember to keep your head up and be happy!

Re: terrified to get pregnant

First of all, I can truly sympathize. I am on Depakote, which all my research shows is the WORST seizure drug to be on if pregnant. I am almost 31 years old, been married two years, and want to have at least one child! I am so frustrated, but sometimes I think you just have to do what you feel is best. I have tried about 8 other drugs and nothing else works for me! I am on a fairly low dosage of the drug, 750 mgs a day, but there are still greater risks. I truly understand your fear. It is not wrong to want a healthy child. I certainly do and I think we all do! However, there are risks involved when you have epilepsy and there are risks involved because of medication for epilepsy. I am simply trying to put my trust in God concerning this and do what I feel is right for my husband and I. It is quite a struggle and scary, but you will get through it. I wish you the best.

Re: terrified to get pregnant

Thank you for your well wishes! I wish you all the best as well. I am actually 37 weeks pregnant and anxiously awaiting the arrival of my little man! I have had many ultrasounds and have happily found out that he doesn't have cleft lip. As far as any other birth defects; it is just a waiting game, to see if he is developmentally sound. I am worried, but have put my trust in God and have found comfort in the fact that everything happens for a reason. I haven't had any problems with my seizures while pregnant what-so-ever. I truly hope that this good luck continues :) you have to remember that getting second and third opinions from other doctors is always an option and folic acid along with other essential vitamins can truly help and do wonders! Good luck with whatever you decide and always keep your head up! It is truly amazing what being a happy person can do for you as well!

Re: terrified to get pregnant

I can totally relate and appreciate everyone sharing their story. It makes me not feel so alone.
I will be 32 y/o next week and currently I am trying to get pregnant.
I was diagnosed with JME at the age of 14 and have had seizures on and off since then. The longest stretch I've gone without a seizure was 5 years. I switched from depakote to lamictal a few years ago and since I switched I've had 5 seizures. Currently I've been seizure-free for a little over 1 year. I am taking 250mg of lamictal twice a day and 4mg of folic acid
As much as I want to get pregnant, I've struggled with the decision because of course like everyone else, I want to have a healthy baby. My husband and I have given it a lot (years!) of thought and ultimately decided we wanted to try. We are hoping for the best and going into it with the understanding that there is a risk. Trying not to scare myself and stay positive. It's so great to hear stories from women that have been pregnant while on seizure medications and their babies/kids are doing well.
I wish you all the best of luck.

Re: terrified to get pregnant

I am 27 years old and I completely understand your worries.  I have had epilepsy my entire life.  I was on at least 5 or 6 different medications in my life time. Currently, I am on Lamictal and have many concerns when it comes to starting a family.  I believe (although this has not been proven) my seizures are brought on by my hormones. I had one when I first started my menstration cycle and also after I have taken some sort of birth control.  I have seizures every 6 yrs faithfully (it doesn't matter which medication I am on). I am scared I will have a seizure during the pregnancy and more afraid of having one while I am giving birth.  My doctor also told me Lamictal is the safest AED to be on while trying to conceive.  I still have a difficult time with this though, because if god forbid, something is wrong either mentally or physically with my child I will blame myself for the rest of my life.  I know having epilepsy is not my fault directly(or even indirectly), but I do kind of blame my father and his side of the family.  I know there is nothing they could have done to prevent it. I battle myself all of the time about starting a family but I really want to have a baby. Alternatively, I could always adopt a child but I would want one of my own flesh and blood. Ultimately I am just going to put it into the hands of God.  He has the final say in everything no matter what medication I am on.

Re: terrified to get pregnant

Hello dhodle :) I know exactly how you feel, I was just there myself. I was so worried about getting pregnant and about having seizures while pregnant and during childbirth. I also knew that if my child were to have disabilities I would have a very hard time with it because I too would blame myself. I just want to tell you that my beautiful son was born on the 25th of July, 2010. He is very healthy and growing everyday. No cleft palate or lip (which is what I was worried about). I didn't have any seizures at all my entire pregnancy. I haven't had any since having him either. And to boot, my husband decided he wanted a divorce right before we found out I was pregnant and wanted one even faster once we found out! I had to move 9 hours back home and leave my two stepsons whom I had helped raise since they were 14 months old.(they are 7 yrs old now) Talk about stress!!! So, to go through all that and be seizure free was especially lucky. I can tell you I was scared to death that I would have a seizure or that something terrible would happen to my baby or that I would have a miscarriage from all the drama..but none of it happened. I thought as positively as I could have, was as happy as I could have been, took prenatal vitamin with extra folic acid, and put it into Gods hands. And now I have a beautiful baby boy :) The only issue I had was that I had too much amniotic fluid accumulating towards the end. but it wasn't a big enough problem for the doc to do anything about and in the end my water broke on its own kicking off labor :) So,  you are right. Just do what you feel is right for you and put it in Gods hands. I hope everything goes well and you are as blessed as I am :) Motherhood is an incredible thing and I am so glad to have made the decision to have a baby. He is my life now and I can't imagine a day without him! Good luck :)

Re: terrified to get pregnant

You could always ask a good friend to be a surrogate mother for you
Bobbie M. Taylor

Re: terrified to get pregnant

First off I  can only tell my story...

I just done have a daughter on 10-16-10.  at 34 weeks.  I have Primary Generalized Seizures, with absence, grand mals at night, but in the third trimester my seizure got out of control, I was finding my self pass out in my food! I was in the hospital for 6 weeks pioir to her being born...so the nurses caught all m seizures. we were trying to up my dosage of topamax from 200 (2 a day) to 300( 2 a day) to adding many add ons.  we final stop with topamax 300 2 ( a day with depakote er 500( 2 a day) I still breastfeed by pump, because Addison is to small to take by breast and the NICU has rule about  skin to skin... if you have more questions just ask.. and get your  meds levels check monthly..the baby will suck the meds right out of you!!!

 

Stephanie

Re: terrified to get pregnant

Im a 29 year old female who has complex partial seizures. I am on Keppra XR 3000mgs a day, and Carbotrol ER, 1200mgs a day. Im also a mother to three beautiful little boys. Ages, 6, 5 and 4 yrs old. I was told by my dr two things as a teen... 1) I have PCOS and I would never be able to have children of my own. 2) With having Epilpesy, If I ever got pregnant, my baby would come out with birth defects.

Well, December 2003, I learned i was three months pregnant. I was on the pill at the time, trying to get my menstrual cycles in order. Little did I know I was pregnant! Something one morning told me to take a test. I then learned I was three months along. Our first baby came out perfect, nothing wrong. We then had our second son in May 2004, just 10 1/2 months after having our first son! He came out perfect too! And our third baby boy, was born in November 2006, and like the other two, he came out with no problems as well. I was on both seizure medications through out my pregnancies and all three of our little boys came out normal and healthy. As long as you get good healthcare with your dr, and follow everything they tell you to do, you shouldnt have to worry at all. :)

Re: terrified to get pregnant

Your dosage isn't very high so I don't think you have much to worry about.

 

 

"And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away" - Rev 21:4

Re: terrified to get pregnant

I can only add to the people who have said, go for it!

I have had epilepsy since I was 14 and have been on 300mg of Dilantin a day. I had one Dr. tell me I shouldn't even consider getting pregnant unless I changed medicine. Dilantin is a category D drug. However, I had been on Dilantin for so long, I was afraid to change or go off an had lots of anxiety over it. I got a second opinion and found a wonderful Dr. that would work with me. I then found a wonderful high risk OB -- you should do the same. They will take more ultrasounds and catch and potential problems early. Plus, your medication might need to be modified along the way, due to hormone changes, etc.

I have been blessed in having 2 wonderful children who are now 3 and 6 years old and just perfect.

Find the right Drs. and you will be fine. Good luck!

Re: terrified to get pregnant

Thats  great  well Ill be  24 yrs old in  2 months.......There  changing my medication to topamax... because  i was on carbatrol for 10 yrs........ before  that i  was on 

  • Tegretol  since 2  yrs old Ive been with my  partner for while  now.... we are wishing  for  a  baby but he has  twin everywhere....
  • Re: terrified to get pregnant

    Twins are only passed through the females, but only fraternal twins are inheritable. Identical twins can be had by anyone because they are a fluke of nature
    Bobbie M. Taylor

    Re: terrified to get pregnant

    I don't know if you still have concerns regarding getting pregnant, but I thought it might be nice to hear from someone who gave birth to 3 very healthy babies without difficulty.

    I had my first seizure at 19, (Grand Mal) I was prescribed Tegretol and took it for over 20 years.   During my pregnancies I did everything necessary to prevent a seizure and fortunately did not experience any.  Each labor lasted over 26 hours, but my babies were healthy and weighed in at  8.5lbs, 9.5lbs and 10.2lbs!

    My babies did not experience any side effects from my medications and I did my best to breast feed them, however...with such large infants, it was very difficult to keep them happy, so I quickly put them on formula.

    My children are now 28, 26, 22 and still very healthy, showing no side-effects from any of the medications I took during their pregnancy.

    Should you have any specific questions you would like to ask, please feel free to contact me.

    Lot's of Luck

    Shelly

     

     

    Re: terrified to get pregnant

    Hi Shelley,

    I'm interested to know what sort of dose you were on with the Tegretol. I'm 26 years old and doing my research into pregnancy. Some GP's have got me a bit scared but it makes me comfortable to hear your story. I have been seizure free for ten years because I had brain surgery but am wondering whether I should try to take less of the medication.  I take 500mg in morn and 600mg at night. Did you take a similar amount?

    Cheers,

     Anna

    Re: terrified to get pregnant

    I have had grand mal seizures since I am 13, I am now 26. I have a beautiful, healthy 2 year old son and while I was pregnant I was taking Lamictal, I started with 200mg in the morning and 200mg of lamictal and 300mg of zonisamide at night and by the time I had my son, who I breast fed for 6 months, I was up to 350mg of lamictal. As long as you keep getting your blood levels checked and work closely with your neurologist and obgyn you should be fine. I am currently 15 weeks pregnant and I plan to breast feed again and so far my lamictal has been increased 100mg. you may be worried but its worth the risk. i hope that things work out for you and your husband, Good Luck!!

    Re: terrified to get pregnant

    I about 2 yrs ago had a beautiful son who ended up having a partial clelf palete which they fixed  they for the longest time told me not to have kids well I didnt breast feed because of the worry and they said it wouldnt be the best thing I was monitored by a specialist and the birth went great he now is my life  I have tried alot of different meds I do get warnings and when that happens I dont hold him to make sure he is safe and along with his dad everything is going wonderful but if you have the right support and handle things ok you can do it I did and we are doing great

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