breastfeeding with E

[ericdg16]

Hello, I am new to this forum, and am trying to find some answers to comfort myself and my wife. My wife was diagnosed with epilepsy as a child and has taken medication eversince. She was taking depakote prior to pregnancy and was doing OK. ( She tends to have the shorter absence siezures, but can have grand maul's if the med's are too low or there's a lot of stress ). When she became pregnant her neur. changed her to Keppra cause it was better for the baby. He adj. her med's throughout the pregnancy and she did have one grand maul about a month into the pregnancy. But finally got the med's right and the rest of pregnancy was good. I am proud to say that we now have a perfectly healthy week and a half old girl. That being said she is now on 1500 mgs. of Keppra twice a day. she is currently breastfeeding and would like to continue. However this weekend she took her med's correctly and still had a grand maul (everyone is ok, luckily I was home). When I called the neur. he acted calm and said this was normal for a woman with E. who just had a baby and is staying up nights breastfeeding and that there's nothing we should do. However, my wife was very concerned and upset, worried she could have been holding our daughter when the seizure occured, and it worries me too. Most of the time before the grand maul's we get a lot of warning with petty maul's prior and she will just take a couple extra pills and be fine, but this one happened much quicker. I was wondering if there are any other breastfeeding mothers on this forum and how they coped with it. I would really like to help my wife feel more comfortable with this, as well as myself. I work full time and she is a house wife and many times has no supervision to ensure she is ok.

[Stacy]

Hello Eric! Welcome to the forum. I breastfed both of my boys. Adam for 18 months and Allen for 12. I had seizures the entire time... It sucked. We decided to stop breastfeeding Allen, as I was drying up after a year. There were times when I dropped the boys (very scarey). While I was pregnant, I would have seizures up to 3-4 times / day. My hormones have now shifted and the seizures have gotten much worse. My boys are 4 and almost 8. I now have sets of seizures instead of one at a time. My advice is:

* Keep track of every little thing in a notebook... what you eat, when you wake, what you take, when you go #2 and what it looked like. How you felt after eating certain foods (pill regimen), how long the baby ate, how you felt after that, date, when you go to sleep, excercise regimen), what you did before the seizures.

* I'm beginning to believe that if my electrolytes are low, I will have seizures. I KNOW the cause is my hormones, I just have to fix it. They always happen in the early AM, during the R.E.M. sleep phase, while I'm trying to wake up. I'm almost always just getting on my period. The notebook has helped quite a bit since I started. I hope it works for your wife. Congratulations on your baby.

[ericdg16]

Thanks for your reply, I'll be sure to pass the info along to her. If you don't mind me asking what type of seizures are you having so often. It's pretty common for my wife to have short 3-5 second absence seizures even with her med's, and those don't really concern us unless we see alot in succession. But the ones like she had the other day (grand maul) she shakes and will fall if standing, bites her tongue badly, and generally will need to go to the hospital 'cause ADOBAN is the only thing that seems to make her better, and this is the only way I know to get it is the ER. Those are the ones that worry us, not just for her to drop the baby, but if she fell, or had her in her arms when her muscles tense so much

[brain]

I breastfed my son, however the Neurologist
discontinued my anti-convulsants (anti-epileptic drug) during
that time (he's 23 years old now); fortunately
I didn't have to breastfeed him very long as he
began to have teeth at a very early age and
began to chew me like they were rawhide toys
ruthlessly! I had to stop!

It was then then I was placed back on anti-epileptic drugs when
I stopped the breastfeeding.

[Trinity]

I don't have advice on Keppra and being able to breastfeed but I have to say I did have a seizure 2.5weeks after having my son who is now 4. I woke up to him crying, picked him up out of his bassinet and went to the fridge to get the premixed bottle of formula that i'd made. I heated it and went to the lounge room, I stood in front of the single seat lounge about to sit down when the seizure hit. My husband heard a grunting sound and came in to find me actually still standing and shaking with Joel dangling by one leg. Funny thing is it actually rocked him back to sleep but the thought that it could have been much worse did scare me. For a while after that I only gave him sponge baths unless my husband was there and I just did my best to minimise the chance of a seizure. For me I hadn't been good at taking my medication, I was tired and i'd been unwell with an infection

[Trinity]

Oh I also have to say I was extremely suprised to hear that your wife's neurologist changed her medication whilst she was pregnant. That is a very bad decision to make imo, especially since she was on depakote. That is the same medication I was on for all 3 of my pregnancies and whilst there is an increased risk of neural tube defects I took a 10mg dose of folate each day to help guard against that. My GP wanted me to change medication and I was dead set against it and called my neurologist all upset and asked for him to contact my GP. My GP didn't want to give me the prescription and whilst I could get one from my neurologist it is more difficult to get an appointment (it is a legal requirement that you actually need to have an appointment and see the dr to get a prescription) and costly (there is no cost for the GP as it's covered by public health). My neurologist was very adamant that I should not under any circumstances go off my medication and switch because pregnancy is never a time to play around with medication as a tonic clonic (grand mal) can cause a lack of oxygen to the baby's brain and that can have awful implications. He also reminded me that Epilim (which is the same as Depakote) is one of the best anti-epileptic drug's to take whilst pregnant. There are some risks but they are minimal comparatively. I have 3 very healthy children with my most major concern being that my eldest daughter is having learning difficulties (which is believed to perhaps be due to the Epilim - not exactly sure). I have to say though I don't ever regret my decision because i'd rather have a child with learning difficulties than one with brain damage. Thankfully things turned out okay for your little one but I would not advise changing medication during pregnancy again unless the medication is extremely dangerous for a potential pregnancy. If she stays on the Keppra though, then I guess it doesn't matter. Best of luck

[ericdg16]

WOW, thanks for all the replies, very helpful.

My husband heard a grunting sound and came in to find me actually still standing and shaking with Joel dangling by one leg

This is definitely our greatest concern is that she would have one while holding her ( My wife actually wouldn't hold her for a couple of hours after she recovered cause she was scared she would have another and hurt her ). I guess after all the posts it just means we need to make sure my wife sleeps every chance she gets at least until the baby starts sleeping through the night.

Oh I also have to say I was extremely suprised to hear that your wife's neurologist changed her medication whilst she was pregnant. That is a very bad decision to make imo

Yeah, actually it was the OB that was adamant about getting off depakote and convinced the neurologist to change it. The neurologist felt that the danger with depakote to the baby was in the first weeks of development. So by the time we found out she was pregnant whatever damage the depakote would have done would already be present (luckily it was none as my wife was then taking low dosages). But, he reluctantly changed her to keppra after the OB's persistance. This actually resulted in my wife having a tonic clonic early in the pregnancy. But luckily we dodged a bullet and everyone was ok. We also changed neurologist. during this time which I don't advise either.

[Trinity]

Well it's difficult I know, to understand who to believe but I honestly would always go with my neurologist over absolutely any other doctor if it's got anything to do with my Epilepsy. I will also agree that any damage potentially caused by Depakote/Epilim would have been done in the first 12 weeks. My GP was trying to get me to change at around 13-14weeks and I told her that I was already too far along to prevent any possible damage and I already had two healthy children. She then went on about how my baby could be deformed and emphasised the worst case scenario. I was well aware of the risks and I chose to take them.