Before I've felt so awful in the run up to this appointment that its only today, the day of the appointment, that I have thought to sit down and write a list of questions. At the last appointment we discussed adding another med if things were no better. I am really apprehensive with this as I know being on more than one AED isn’t great and lamotrigine alone in pregnancy is one of the safest. However he did reassure me at the last appointment that after the first trimester the risks when introducing another med were minimal. Options My options would be either Keppra or Clobazam; I have previous experience of both. Clobazam was used as a rescue med for me back in 2011 when I couldn’t break a cycle of seizures. It worked, however it made me very very tired.. Keppra I have only ever tried on its own and it was of no use to me at all but Ive heard it works very well along side lamotrigine. Decisions
I’ve done some research, but there isn't very much out there. There has never been enough research into the 'newer' AEDs. With the information I found my choices in short were: 1) Do I go for Clobazam a drug that I know works for me but according to reading I’ve done comes with higher risks. One risk is that that if used long term and in the third trimester that the baby may become dependant. On the otherside I know it reduces my seizure activity, the risk of tonic clonic seizures and therefore would be beneficial for both me and baby. 2) Or do I go for Keppra, a drug I have had no success with previously but used together with lamotrigine is considered safer. But by taking chances on this drug I am potentially exposing baby to a drug that won’t have any impact but still exposes them to possible risks? 3) Or do I just refuse any extra med and run the risk of tonic clonic seizure. I have a few hours until the appointment and still no idea what I want to do. My husband and I are on different sides of the fence. He is in favour of adding Keppra, he says Clobazam turns me into a zombie and makes me not myself, which understandably he doesn’t like. I however have confidence in Clobazam and don’t want to waste time with Keppra when I have no proven success with it. Its selfish but I’m the one who is living with feeling ‘funny’ day in day out and I just want to feel better, if that’s at the expense of being drowsy so be it. I’m hoping the neuro will guide us and then we will both have an opinion on what we prefer, lets just hope we agree! Appointment The first thing to come out in the appointment was the result of my blood test, my lamotrigine levels had dropped and were very low. I had a reason for the seizure increase, silly as it sounds that made it easier to cope with. Then the neurologist told me his plan. He explained that knowing I had always responded well to an increase in lamotrigine he didn’t want to introduce a secondary drug at this stage. He is confident that with an increase of lamotrigine alone my levels should improve and I should gain better control again. Well this was one option I hadn’t considered. I felt nervous at the increase, wondering how my body would tolerate it, but also relieved. I still didn’t like the idea of a second med, yet again he reminded me that the risks of a second med were lower than the risks of a tonic clonic, that was me told. So now I am starting the gradual increase from 300mg twice a day to 350mg twice a day. He also reassured me that he had full confidence that I would gain seizure control again once baby was born. Then we had our chat with the obstetrician, covering how sick I had been and how dizzy I felt, who said pregnancy was glamorous! He then did a scan, and finally someone said to me they were happy with the size the baby looked! He also told us the babys heart beat was strong and that they were very active - so he was happy with the progress. I discussed my concerns with him that came about from the 12 week scan (see blog 4) and he answered them all, reassured me and not once made me feel I was being neurotic or silly. (I will cover these in a future blog). Both the neurologist and obstetrician explained that the biggest risks to a baby who is exposed to lamotrigine are: spina bifida, cleft palet and heart defects. They explained the 20 week scan would cover the first two, but ordered a fetal echo to do a more detailed examination of the heart. They also told me they would be seeing me monthly due to low med levels and lack of seizure control, this reassured me greatly. I came away again happy with how the appointment had gone. However I can’t shake the feeling that something is ‘brewing’. Those reading this with epilepsy may identify with that feeling that your body is building up to a tonic clonic seizure. It’s an odd feeling and one that you cant explain (sorry!). It’s also scary and unnerving. I’m just hoping the drug increase works before it gets that far. What would you do? On all the above information Id be interested to know what you would do? I don’t mind if peoples opinions are different to my own - just trying to open up healthy debate :-) Get in touch: [email protected] Twitter: @fairyfaye1986
7 Comments
Jane
17/1/2015 08:58:34 pm
Thank you, Faye! I have epilepsy as well and hope to have children in a couple of years. It has been comforting to read your posts. I wish you the best!
Reply
Vicky
17/1/2015 11:18:09 pm
having seen how devastating seizures can be during pregnancy with my own daughter, I can only agree with the drug increase. Pregnancy changes the way the meds distribute around the body. Antibodies are produced to carry toxins away, sadly AED's are seen by the body (during pregnancy) as a toxin and aren't as effective. So the increase should help massively in helping you to gain control. My daughter was on topirimate during pregnancy. You are doing all the right things. x
Reply
Jules
18/1/2015 02:58:48 am
Hello Vicky
Reply
Vicky
18/1/2015 04:11:43 am
Hi Jules, my Granddaughter was born and was grunting following her birth and was admitted to NICU, but we think she had an infection though I don't know the full extent as it was never discussed with me and my daughter didn't understand entirely what was going on but I suspect Strep B which is not associated with AED use in pregnancy. My Granddaughter has at the moment attention difficulties and in my opinion showing signs of autism but given that my 4 boys have all had social communications difficulties, this doesn't surprise me. She is 4 (nearly 5) now and the school are flagging up that she is below her peers and struggling with her attention span. I would honestly say though that she is only 4 and I wouldn't be worried about her behaviour and concentration until she is older. There wasn't any information out there with topirimate and pregnancy but I would say based on my daughter's experience that no definite problems arose from it. xx
Jules
18/1/2015 03:03:04 am
Faye, I think your blog is brilliant, brave and honest. Everything you write about, I can relate to and my heart goes out to you during this time. I am 39, on Sodium Valproate and have not given up hope of a baby once I'm on a "safer" med. Its a hard time and coming across your blog has offered me support, so I thank you. Wishing you all the best and keep the posts coming. xo Jules
Reply
Lyn
18/1/2015 11:54:26 am
Hi Faye,
Reply
25/10/2018 04:28:55 pm
Great post you have imparted to theirs. The general population inside the additional made countries square measure additional trained and their range are than the uneducated individuals inside their country or the educated individuals in the elective countries.
Reply
Leave a Reply. |
AuthorMy names Faye, mostly known for being a tea addict, swimmer and now Paralegal and part time student. I'm 36, married and I had my 1st (and only) child in June 2015. Oh and I also happen to have epilepsy. This is my story of Pregnancy, Motherhood & Epilepsy and the voice I have become for those with epilepsy. Archives
December 2022
|