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FirstTimeMom

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Hello
I am a new mother, with a 6 month old..that thought I was just experiencing 'baby brain' I had perhaps episodes 20X where I was just staring, and able to understand what was going on, but I was unable to read aloud(english looked foreign, and I would have to sound it out) Turns out, after EEg, MRI I was diagnosed with Epilepsy and told I had 2 wks to stop breastfeeding my baby so I can start a med called tegetol. this is only the 2nd day, and I am lost and uncontrollably crying, as my baby refuses a bottle and I have tried absolutely everything. I am considering delaying my med ..as I have had no other signs of epilepsy except for the blank staring, and being unable to read at times. Anybody in the same boat???
 
Welcome FTM

It's good to have you here. Sorry to hear about all that you've had to go through with your child. I had thought there was an anti-epileptic drug that was suggested for lactating women (can't remember which). I'm surprised you weren't put on that one.

I've had seizures all my life so I've been on tegretol for decades. I'm at a point that I"m pretty used to most the side-effects but I"m still very emotional at times because of it.

I also know how it feels to forget English for a while. I can understand but I can't speak or write it after some of my seizures. I've learned to fake my way through it usually but every now & then it catches me at an awkward time.

I moved your post so that you have your own thread & everyone can give you their experiences. Meanwhile, make yourself at home & browse around. You might want to use the "search" option at the top of the page. It can make finding things so much easier.
 
epileric said:
It's good to have you here. Sorry to hear about all that you've had to go through with your child. I had thought there was an anti-epileptic drug that was suggested for lactating women (can't remember which). I'm surprised you weren't put on that one.

I've had seizures all my life so I've been on tegretol for decades. I'm at a point that I"m pretty used to most the side-effects but I"m still very emotional at times because of it.

I also know how it feels to forget English for a while. I can understand but I can't speak or write it after some of my seizures. I've learned to fake my way through it usually but every now & then it catches me at an awkward time.

I moved your post so that you have your own thread & everyone can give you their experiences. Meanwhile, make yourself at home & browse around. You might want to use the "search" option at the top of the page. It can make finding things so much easier.
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Thank You So Much! I really just needed that comment for me to stop crying right now..thank you!!!
 
FirstTimeMom said:
Thank You So Much!!!!
Click to expand...


You're Very Welcome Ma'am
cartoon_bowing_dude.jpg
 
Hi, Firstimemom,

I'm so sorry you are going through this. It's just heartbreaking.

One thought before you give up the meds is to call your pediatrician or your local hospital and ask for advice on how to switch your baby to a bottle. The birth center where you delivered your baby may have a nurse advice line for new mothers.

There are also online resources:
http://www.breastfeed-essentials.com/offerbottle.html
http://www.babycenter.com/0_introducing-your-breastfed-baby-to-the-bottle-or-cup_473.bc

The thing about seizures is sometimes if they are not treated they can get worse. It's important to get them treated as soon as you can. Also, the quicker they are found and treated the better the odds that you will be seizure free for life. Untreated seizures over years might make the seizures intractable (untreatable) because a greater number of permanent changes will be made in the brain before the seizures are finally treated.

I have a question... the times you were just staring... did anybody tell you how long it lasted? Did your doctor tell you that you had absence seizures or complex partial seizures? It makes a difference.

An absence seizure usually lasts just a second or two when you just zone out, and it probably wouldn't endanger your baby much. A complex partial seizure is one where you still walk, talk, and act but it's really goofy and random stuff. That means you could say or do anything during the time you are not conscious, which could be up to 5 minutes (usually up to 3 minutes). That includes dropping your baby or putting her (him?) in the refrigerator, or stash her in the garden. Sounds wacky, but complex partials are like a person is on autopilot, but there are some serious bugs in the software.

If you are having complex partials and you are taking care of your baby, it may not be safe for the baby. You definitely want to get on the meds. If not for your own safety, then for the safety of your little one.

Another question - when did you have your first seizures? Is there a definite timeframe when people noticed they came on? Was it during pregnancy or after birth? If so a hormone imbalance may be wrecking havoc on your brain. It may have something to do with the seizures. Seeing your gynocologist and getting your hormones tested might be a good thing at this point. In some people, even seemingly normal hormonal changes for women bring on seizures or make them worse. If this is it, solve the hormone problem, solve the seizures.

About the English language thing. I get it to, but about the spoken word. Someone is talking to me and it just sounds garbled. I can't understand a word they say. It usually only lasts 30 seconds or so, but that's enough.

Tegretol.... I was on Trileptal which is a derivative of Tegretol. Some of the side effects are the same. One is depression. I was severely depressed on Trileptal. I cried a lot, felt unbearably hopeless and alone, and just not able to cope. If when you are on the Tegretol it gets that bad be sure to call your neurologist right away. He may switch you to another medication. Most don't get that side effect but some do. It's different for everybody.

Here's a link to the package insert for Tegretol. It talks about all the possible side effects:
http://professionals.epilepsy.com/medications/p_tegretol_pi.html

I'm going to be thinking of you. <<<<<BIG HUG>>>>>

You and the baby are going to be okay.
 
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I know you don't have a lot of time to read with a baby. But information is power. I found more resources for you:

http://www.medscape.com/viewarticle/530483_7
On the basis of small studies, including single-dose studies, case reports and short-term studies, phenytoin, carbamazepine and valproate are probably safe. These AEDs are all moderately to highly protein-bound, and are not transferred in high concentrations in breast milk.
Click to expand...

http://www.jeffersonhospital.org/de...ens-epilepsy-program/breast-feeding-aeds.aspx

http://books.google.com/books?id=HA...nepage&q=breastfeeding AED medication&f=false
(this one is heavy reading but very interesting)

http://www.epilepsyfoundation.org/answerplace/Life/adults/women/Professional/postpartum.cfm

http://books.google.com/books?id=iQ...snum=10&ved=0CEIQ6AEwCTgK#v=onepage&q&f=false
(scroll down for breastfeeding)
 
Thank you so much also. I can't thank you enough for your advice and help. I believe that I am experiencing Simple partial seizures, as I am aware of what is going on and I can control my physical self. Its talking and reading that is the issue. Thanks for your website resources, its already making me feel better. thanks again!
 
Firstimemom,

Can I ask a question to better understand? The times you were staring - could you stop staring? Were you aware you were staring, or did someone tell you about it later?

If you were staring on purpose, you remember staring, and could stop staring any time you wanted to, it's probably a simple partial seizure. If you weren't aware you were staring and someone told you about it, or you couldn't stop staring, it's probably an altered consciuosness seizure (a complex partial or absence).

Before I was diagnosed I was getting so annoyed at people. They kept asking me, "Are you listening?" I'd answer "yes," and wonder why on earth they were asking me that when I was clearly listening so intently. I had no idea I was having very short complex partial seizures where I unconsciously stared and maybe picked at my notepaper for a few seconds, peppered in with my rather longer CPs.
 
something would catch my eye, and I would keep staring..I could fight it and look away but the overwhelming urge was to keep staring and I would indulge.
 
Oh! I saw the photo on your profile page. Your baby is BEAUTIFUL!!!!! You are so lucky. And your baby is so lucky to have you for a mom. :)
 
Good News! I met with a lactation specialist who gave me the most recently documented drug interaction list for breastfeeding moms. The book was called Medications and Mothers Milk by Thomas W.Hale R.Ph., Ph.D. 13th edition, 2008. It lists all prescription drugs and assigns them a risk value in terms of pregnancy risk..or breastfeeding risk. The drug Tegretol, in 400 mg or less dosage, is L2 risk for lactation, which means, Safer. The range is from safest, to contraindicated. Safer is the second highest on the safe range.. This means I can take it at my own risk, the infant , based on 1 L a day consumption, and based on my weight of 73 kg and 200mg per day, would be getting 2.73mg/kg only. Which is very minimal. I thank this website for making me feel better about accepting my diagnosis. I know I am not alone. Thanks!:clap:
 
That's great! Sounds like the specialist was very helpful. Keep us posted on how things are going for you.
 
Changing nutritional choices has given my daughter her life back. We tried meds, but when it appeared that hormones were causing her tonic clonic seizures, I went in search of ways to balance the hormones. It firghtened me to think that her seizure threshold would once more be compromised when she decided to start a family. She will definitely need to be more aware of it now.

We all have a seizure threshold. Just being given the diagnosis of Epilepsy does not mean that you have a disease. It only means that you have had two or more seizures. The seizures are a symptom of some unknown cause. The cause for you right now seems to be a lowered seizure threshold due to.... ?... hormones changing after giving birth, nutrition, etc.

If you can find that balance that you had prior to the birth of your child, perhaps you might be able to a life without meds.

My daughter is now six months seizure free, and she is not on any medication.
 
FirstTimeMom,

I'm SO HAPPY this worked out for you. And Hooray for the lactation specialist! I think it's really important to breast feed babies.

:)
 
That is fantastic!! Get the wine to celebrate! NO! wait.... Well, it's still great that you've got a specialist to get you through this should they be needed.
 
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