Decision to concieve at 36 being diagnosed with Nocturnal Epilepsy....

[Jnash23]

Hi There,
I was diagnosed 5 years ago after a cluster of 40 Nocturnal Grandmal Seizures in a row and admitted for 5 days in hospital. After coming to I was also paralysed on my right side for 48 hours which was touch and go...
I have come through that now and had no seizures since (5 years) as I am medicated by Lamictal 300mg twice daily and Topomax 100mg twice daily. I do suffer from slight anxiety, panic attacks and mild depression and weight gain which is a battle in itself.
My husband and I are thinking of trying for a child but I am 36 and my Neuro has told me my risks of my age alone are higher and he doesn't really want to change my meds for us to even try.... I feel like we have been robbed of our chance to even try for a child and it has upset us so much. (I know that I need to look after myself too)
My question here is - Are they any other couples in a similar situation that have been given other options? We just feel like our chance has been taken from us without any other options been discussed and it's so frustrating...,
Thanks for reading - any feedback would be greatly appreciated - lots of love♥

 

[Porkette]

Hi Jnash,

Welcome to CWE! I understand how you feel yrs. ago I was taking Depakene along with mysoline (primidone) and my Dr. told me it was to risky to have any kids because the child would be deformed or have spinal befida do to the meds. We also looked into adoption and they wouldn't let us adopt a older child because I couldn't drive which was wicked to me.
Today I work with over 200 kids at my job as a teacher aide so I got over it. My best advice to you is to get a 2nd opinion from a good neuro especially if epilepsy runs in the family. I wish you the best of luck and May God Bless You and Your family.

Sue

 

[Nakamova]

Hey Jnash, welcome!

Agree with Sue, it can't hurt to get a second opinion, especially from an epileptologist who specializes in women's issues and can potentially collaborate with your OB/GYN.

There are risks:
Topomax is associated with an increased risk for cleft lip/palate. To put it in perspective: In the general population, approximately 1 in 1,000 infants is born with CL/P; the risk in a Topomax-exposed pregnancy is 5 in 1,000. (also C/LP can easily by fixed w. surgery)

Lamictal is considered to be among the safest seizure medications for the developing baby. A concern is that its clearance rate tends to be sped-up by rising estrogen levels. Since estrogen increases during pregnancy the Lamictal dose may need to be boosted to compensate. And then after delivery the Lamictal level would need to be accordingly reduced. This means that the pregnancy needs to be closely monitored.

An experienced specialist can go over these kinds of risks and concerns and help you to make the decision that is right for you.

 

[valeriedl]

My father loves children and I feel that he was robbed of the chance of being a grandfather because of my epilepsy more than anything else.

When I asked my neuro about having children he didn't tell me 'Yes it's ok to have them' or 'No it's not ok'. He explained that some of the meds I'm on could cause birth defects and if he were to take me off of those meds it I might have more seizures which could also cause problems with the child. He told me it was my decision of what I'd want to do. I decided I didn't want to have children and had a hysterectomy to make sure there was no chance I would get pregnant.

My sister in law also has epilepsy. I'm not sure how many meds she's on and what they are and how often she has seizures. She told me that she hasn't decided if she wants to try to have children yet. If she doesn't then my father will not be a grandfather at all.

 

[CrunchyFrog]

I have nocturnal epilepsy and am medicated (Lamictal) and have a healthy 3 year old. I was considered high risk and had extra antenatal appointments. I also was instructed to take extra folic acid. My childbirth experience was not pleasant and my husband nearly left the hospital without a wife or child, however the complications had nothing to do with epilepsy. I had 3 partial seizures while in labour, because of stress.
My pregnancy was pretty drama free, I had terrible morning sickness, but nothing abnormal.
We planned the pregnancy and asked advice, we were told that there is a greater risk of problems when on more than one medication and that the risks associated with not being on medication (having seizures while pregnant) outweigh anything else. Given the statistics, even though there is an 'increased risk' of some abnormalities like cleft palate, the numbers are still low.
Get a second opinion, you'd need to be monitored and make sure you look after yourself, because pregnancy hormones can trigger seizures and obviously individual circumstances differ greatly, but it can be done.

 

[Sabbo]

Hello. I have Simple Partials & Complex Partials. I've had the Simple Partials since childhood, the Complex Partials began about 16 years ago. I have 2 healthy sons--a 10 year old, and a 17 year old.
Here's what's funny--I was on birth control when I became pregnant w/my older son! At the time, I was on Dilantin--300mg/day & 1mg folic acid. During my second pregnancy I was taking both Dilantin (340mg) & Topamax (400mg) because I had started having Complex Partials. During both pregnancies, my neurologist raised my folic acid dose to 4mg, & monitored my blood levels more closely.