15 weeks ~ 2nd scan

We had our second scan this week, it was quite nice because unlike the last scan where I was terrified something was wrong with the baby, this time I was looking forward to just seeing our baby again.  The scan showed that everything was going ok, the baby was growing well and they couldn’t see anything to be concerned about although it was still early days.

I also had an appointment with the community midwife at my local GP, it was really just to get to know them and have my urine and blood pressure checked.  It also a chance to hear baby’s heartbeat, I don’t think I could ever hear that sound enough, I found it absolutely amazing to hear, it was proof there was a real little person inside me and having not yet felt baby move it was incredible to hear and very reassuring.  I felt like my pregnancy so far had just been one appointment after another, I didn’t feel like I had had any chance to enjoy being pregnant.  I was thankful for all the care I was receiving and it made me feel confident I was being looked after.  But I was also looking forward to the next few weeks as I didn’t have any more appointments until the New Year, so I would have a chance to enjoy Christmas with my family and settle into being pregnant, let it all sink in.

13 weeks ~ focal seizures, morning sickness and weekend in France

At 13 weeks I had a small seizure, I have focal seizures where I get an intense feeling of fear that sort of washes over me and then often this is followed by a very brief change in my vision, almost like seeing another image.  The whole thing lasts for a couple of seconds at most and people don’t notice I have them, occasionally I lose my train of thought but I am quite good at filling the space with a err or um and then picking up where I left off.  I have had them all my life and never thought anything of them until I started having tonic-clonic seizures and even then it wasn’t until I started being seen at The National Neurology Hospital that they were picked up on.  I don’t think they will ever be able to tell me whether they are definitely seizures or not as unless I have one whilst having an electroencephalogram (EEG) they cannot say for sure.  The EEG test is a test that is often misunderstood even by health professionals as a definitive way of diagnosing epilepsy, realistically it is just a tool in the diagnosis, and the main diagnosis is from witness accounts thus the reason why epilepsy is so difficult to definitively diagnose.  The issue with an EEG is that someone who has never had and will never have a seizure can have an abnormal EEG and someone who has seizures can have a completely normal EEG when they are not having a seizure.  I had a 24hour EEG during which I didn’t have any seizures but it showed abnormal activity in my left parietal lobe which is the part of the brain which is involved in emotions and would correspond to the intense feeling I get when I have a possible focal seizure… so an EEG is more useful as another piece of the puzzle.  My mum and sister both describe having similar episodes but have never had a major seizure, that worries me a bit as maybe it suggests that my epilepsy is hereditary but then if they have never had a major seizure these smaller possible focal seizures are easy to live with so I guess there is no reason why my child should have major seizures.

So as I said before, the week didn’t start too well; having had a focal seizures the day before I saw the senior obstetrics consultant at Epsom Hospital, I had rung the epilepsy nurse for some advice and was waiting to hear back from them.  The appointment went well though, the consultant suggested putting up my Lamotrigine dose if the epilepsy nurse agreed and came up with a plan which involved me being seen both at Epsom Hospital and in the community, he booked me for scans at 16, 20 and 32 weeks and just generally made me feel that there was no reason why I couldn’t have a perfectly normal pregnancy and labour.

When I started Lamotrigine 8 years ago it was seen as the best drug for young women.  It wasn’t meant to interact with the contraceptive pill as it didn’t affect enzymes in the body like some drugs did, but it turned out that it did interact with the contraceptive pill just in a different way to most of the other AEDs, but they are not sure the exact reasons for these effects.   They found that Lamotrigine could slightly reduce the effectiveness of the contraceptive pill but that the main interaction was that the contraceptive pill could reduce Lamotrigine plasma levels quite considerably.

The other issue that has arisen with Lamotrigine is that it was thought that it was the safest drug to be used in pregnancy and while research shows that in doses less than 400mg the risk of major birth defects is low at around 2.5% (the same as other drugs such as carbamazepine) but in higher doses about 400mg the risk is increased to 6% which is more than a low dose of the AED sodium valproate a medication which is discouraged in woman who want to become pregnant.

Another issue with Lamotrigine is that is seems to be particularly sensitive to the changes in your body during pregnancy, it makes sense that you AED levels in your body could drop as you gain a lot of extra fluid in your body but Lamotrigine also seems to be effected by the changes in your metabolism as well.

Rich’s mum lives in France and we had planned for a long time to go over for her 50^th Birthday Party.  Being 13weeks pregnant and still being sick quite a lot I wasn’t looking forward to the overnight ferry, at least by this point I was able to tell people that I was pregnant so I didn’t have to pretend to be ok.  The ferry was really rough, it was a really bad crossing but I managed to make it across without being sick.  However the car journey to their Mum’s house finished me off, I was really sick in the toilets of a service station on the way, I think that’s the worst thing, being sick in public toilets because it’s like everyone is listening to you!  After that I felt a bit better and really enjoyed her party that evening, it’s funny as soon as you are pregnant it’s the main thing people want to talk to you about and I’m guessing that as soon as you have children they will be all you talk about, it’s a definitely a turning point in life, suddenly nothing is about you!

12 weeks ~ first scan

The first 12 weeks seemed to drag on and on, I was being sick daily, had lost half a stone and could only face eating twiglets and bread.  The day we went shopping and they had sold out of twiglets seemed like the end of the world for me!  And although it was horrible being sick all the time I was also quite relieved, I don’t know the scientific reasons why people are sick in the first few months but everyone had always told me it’s a sign of a healthy baby.  After the seizure so early on I was so worried about the baby having something wrong with it, the fact I was being sick like so many other pregnant woman was what I was grasping onto as it seemed normal and so I hoped the baby was normal.

From an epilepsy point of view being sick every day is not a good thing when taking regular very important medication.  I changed my medication times from 10am and 10pm to 8am and 8pm to avoid the times when I was feeling most sick.  The epilepsy nurse had said not to retake my medication unless I could actually see it in my vomit, luckily I wasn’t sick close to taking any of my meds so it wasn’t a problem.

The day of the scan came, I was so scared, I was shaking and my heart was beating so fast, I wanted so much for the baby to be ok but I felt like so much was against us, not only had the baby had to battle against my medication it had also had to go through a tonic-clonic seizure with m e.  I know it had only been 12 weeks but I was already attached to the baby.  We met Emma in the waiting room, it was only the second scan she had been to, the first being her Mum’s when she had Emma’s brother.  Apparently most women don’t want students at their scans, I don’t know how I’d feel about a student I didn’t know but I didn’t even have to think whether or not to let Emma come, she was there to help me and I wanted her to be able part of the whole journey.

When I first saw our baby I was mesmerised, it was amazing, words just can’t describe how I felt.  I had found it difficult to believe I was pregnant in those first few weeks.  If it wasn’t for the pregnancy test telling me I was pregnant I could quite easily just have felt groggy and tired.  But seeing baby on the screen made it all so much more real.  That little person was inside me, and it really was a little person.  We could even see its beating heart and little arms and legs and it was really wriggling.  The ultrasound technician took some measurements and said everything was perfectly average, those were the best words I could hear, all I wanted was a normal, average baby.  She said although it was still early days and the 20week scan would show more as far as she could see the baby was completely normal, no obvious abnormalities.  I knew cleft lip and palette are the most likely deformity with Lamotrigine so I asked whether they could tell if the baby could have that, she said it’s still very early days so she can’t see for sure but she could see that the baby’s stomach was full which shows the baby is swallowing well which is a good sign as babies with cleft palette usually struggle with their swallow.  I was so relieved; I felt like I could now be positive and start planning for actually having a baby.

They also gave a more accurate due date, so baby was due on 5^th June 2012 which seemed like an age away, little did I know that from that point onwards time would just fly by!

I also felt able to start telling people about the baby.  There were a few key people we want to tell before we generally spread the word.  So over the next weekend we rang the most important people.  It’s amazing how different people react, some people seem quite uninterested, but I think that’s more because they are in a completely different place in their lives.  But there were other people who I told who really surprised me with all the questions they asked and how pleased they were for us.  Once we had spoken to everyone we wanted to tell ourselves we did what everyone seems to do in the day and age and posted a scan photo on facebook and that seemed to spread the word to pretty much everyone we knew!

11 weeks ~ London neurology appointment

One of the best things that happened to me in my epilepsy treatment was being referred up to London to an epilepsy specialist.  I had felt like my neurologist at my old hospital wasn’t listening and got the feeling he didn’t know a lot about epilepsy, which after seeing the consultant in London turned out to be true.  I feel bad taking up the time of such a specialist when all I really wanted was to see an epilepsy nurse.  But looking at things now I feel like I have a plan for the future and that is all thanks to my specialist and the team at the National Neurology Hospital.

I had an appointment with the epilepsy nurse in London, my Mum came with me for support.  At work I was constantly being told what a risk I was to the children, not to pick them up, not to be left on my own with them.  I started to think that I could never look after my own baby, all that time just my baby and me and the risk of me dropping them.  The epilepsy nurse made me feel so much better, he pointed out that in comparison to a lot of people’s epilepsy mine was well controlled, one seizure a year wasn’t going to put my baby at a huge risk and we talked through some of the things I could do to reduce the risks which is something I’ll talk about a bit later in this book.  They also took bloods to check my medication levels in my blood, as with all AEDs but Lamotrigine particularly your medication levels in your blood can drop significantly due to having an increase in fluid in your body and changes in your metabolism.

Mum then took me to Westfield’s to go shopping for Maternity clothes.  I hadn’t bought anything so far for this pregnancy.  I guess part of me thought that this pregnancy would never work out.  I had read somewhere 1 in 6 pregnancies ends in miscarriage and I knew the first 12 weeks were the highest risk, having had a seizure and with all the problems epilepsy can bring I just thought it would all end in tears and I didn’t want to tempt fate by going out and buying things.  But it was my birthday coming up and it made sense to be bought maternity clothes for it so I decided I had been being silly.  We had a lovely day, I spend a lot of time with my Mum but often it’s while she’s working or while we’re busy with other things, but spending some time just the two of us was wonderful.  Talking to my Mum and actually buying maternity clothes got me thinking, we had decided not to tell Rich’s parents until after the scan but somehow that seemed unfair and I suddenly got scared they would find out through someone else somehow.  So after talking to Rich we decided to tell them.  They seemed very happy, it would be there first blood grandchild and they seemed to be excited and happy for us.

A lot of it is common sense, I won’t bath the baby on my own, I’ll avoid carrying the baby up and down stairs too much by having changing things downstairs as well as upstairs and if I do carry the baby upstairs I’ll carry them in a car seat.  Then things like changing the baby on the floor and breastfeeding while sitting on the floor.  I won’t let the baby sleep in our bed as my medication makes me sleepy.  I also planned to get a buggy with dead breaks but that was going to prove a little difficult…

Information on Epilepsy, Birth Defects and Inheritance

Here’s a bit of information from the epilepsy action website to put the risks of AEDs on the unborn baby and inheritance of epilepsy in perspective…

Anti-epileptic drugs and the epilepsy itself put the baby at a slightly increased risk of major congenital malformations that need medical treatment for example spina bifida, a hole in the heart or cleft palate.  The risk seems to be greatest during the first three months of pregnancy.

One or two babies in every hundred born to women without epilepsy have a major congenital malformation.  If you have epilepsy and don’t take AEDs the risk is around two in a hundred

Different anti-epileptic drugs carry different risks and there is an epilepsy pregnancy register to gather more information about the risks, sodium valproate in particular is associated with an increased risk of major birth defects.  The risks are increased if you take more than one type of anti-epileptic drug.

Babies born to women with epilepsy have a slightly higher risk of having a minor congenital abnormality, for example, small fingers, small toenails, and facial abnormalities such as wide spread eyes.

When planning a family all women in the UK are advised to take a folic acid supplement. It is recommended that women with epilepsy take 5 mgs of folic acid every day for at least three months before you conceive and continued throughout the pregnancy. Folic acid is a vitamin which helps protect against neural tube defects such as spina bifida.

In the general population 1 in 103 people have epilepsy. Less than one child in every 10 born to a parent with epilepsy will develop epilepsy.  There are three different ways in which epilepsy can be inherited:

• A person’s low epileptic seizure threshold may be passed to the next generation through the genes.
• Some types of epilepsy seem to run in families, for example, juvenile myoclonic epilepsy.
• Epilepsy can be one of the symptoms of another inherited medical condition, for example, tuberous sclerosis.