Pregnancy - tests and screening

[stevensmummy]

Hi Guys,

Firsly I appologise for not beign around, been having issues with my connection and been mega busy, new job on top of it all.

I'm confirmed to be pregnant. I'm approx 7 weeks. I have had my first antenatal app yesterday, early due to my epilespy and meds.

I am on med for epilepsy (Lamotrigine) only on a smaller than normal dose, but none the less its there. There is an inc chance of neural tube defects in epileptics on meds. I was preg before I was told about stopping meds etc and now am more than half way thro the critical development stage where it makes a diff. I was also on Sertraline for pni, intermittantly before preg but never when preg.

I am now faced with all these questions about screening tests and spina bifida etc. What will the tests show and what my options are after I have results.

I have an antenatal neurology app at the hosp on monday. i think its a meeting of the neurology specialists I am in touch with and a specialist on epileptic pregnancies. I'm afraid for the outcome.

I have 2 other children already, spent 90% of my life on my own with the kids, my partner works very long hours and with the epilepsy and history of pni, I have a hectic life. i am questioning whether I could cope with a child with such a disability and the thought of termination. Could I cope? Could I terminate? What does that make me if I did? Shallow? Selifsh? Unfit mother?

I think to myself i cant terminate if it was worst case. But then I think, this porr child has no hope if it survives, I have epilepsy, although now settled. I have had pni twice. I have 2 kids and am bringing them up practically alone. Is it fair to bring a child with such special needs into this world, when I know I couldnt give it the care it deserves. regardless of that is it even ethical to bring a child into the world, knowing it could have severe physical disabilities but be or normal intelligence? Can you imagine being trapped in your body?

I know I am thinking worst case senario and I have researched this out the door, the tests the outcomes etc. There is a 95% or just above, chance I will have a perfectly healthy baby, with no issues. When you look at it on the flip side you think wow thats good. If you turn that to 5% its going to be ok, then you would be thinking lost casue. So really is 5% chance its going to have a disability really that bad?

My mind is reeling with questions, I cant think let alone sleep. I even have a headache to top it off.

I need some advice

Thankyou everyone for even reading this

Sarah x

[monica]

Hi

Congratulations on your pregnancy. You have so much on your mind and it's an extremely difficult decision to make should you need to. Saying that you should not have to make that decision on your own and a professionals should sit down with you and oh and go through everything, stats, risks, screening because it sounds so overwhelming.

I guess other issues are is there anything they can do to further minimise these risks. For instance (and I have no medical experience at all) can you be given higher dose of folic acid - I know some people with history of having babies with neural tube issues are given this).

How early can screening be done? What are the risks of screening? You are on a low dose of meds, so does that reduce the risks further? Does The fact your other children do not have any neural tube defects, further reduce the risk. Can they tell early on how bad any potential disability is going to be?

I would imagine as a lay person that 95% chance of baby being well is pretty high but you are right to ask all these questions.

I'm sorry - I've not been much help other than baffle you with further questions. Perhaps try writing everything down - then at least you know you will have covered everything you've thought of adn often on paper thinks appear less overwhelming than if you have loads of qs whizzing around in your head. ARe you taking anyone else to your meeting. If oh can't make it, do try and take someone else. Another person can sometimes hear things you won't as your mind will be full of thoughts and ask other questions.

Sending you huge hugs though. Good luck for Monday and let us know how you get on.

Love

Monica

[winegirl]

Hi Sarah!!

Long time no speak! and CONGRATULATIONS!! That didnt take you long at all!

When I first found out i was pregnant i stressed about spina bifida, deformities the lot! I now know I should have just chilled the hell out. Like you say, the chanches are 95% that everything will be prefectly fine, so try not to let this all overclod your pregnancy. Relax and enjoy it as much as you can.

I am sooooo pleased for you hun and have missed not having you around.

Keep talking to us mate if it helps, you know we are always here x

Love

WG xx

[gizmoracer]

Hi Sarah
Its great to hear from you, and a big congrats from me too. I understand where you are coming from here and of coarse its easy for us all to say try not to worry but basically try not to worry too much. The last thing you need is to make yourself ill. Not sure if this will be of any help to you but try contacting the NSE (national society for epilespy) www.epilepsynse.org.uk/ granted they arn't excatly local to you but will be able to help with some of your questions I'm sure and should be able to get you intouch with help closer to you. I used to deal with them years and years ago and they have always been very friendly there, used to go up there every 3 months.

The only screening tests I know anything about is called the triple test, this is done at about 13weeks and is just a blood test. I took it with both of mine purely because I wanted to have a dating scan and see proof that I was pregnant and not imagining it lol. It gives you a number, bit confusing but they go through it with you. This was for spina bifida etc. I know the risk is higher if you are over 30 or very young. They will tell you if you are in a low, medium or high risk factor of baby having something like this and then if it is high you would be offered an amniosentisis(sp?) This comes with a very small chance of causing a miscarrage as they will basically take a sample of the waters surrounding baby. I think this gives them some of babys skin cells and therfore dna. Which would tell you a definate of certain conditions but not a severity of it.

It all sounds quite daunting.

• First find out what tests they want to do and what it will tell you.
  
• Second grit your teeth and get the test over and done with.
  
• Then worry about any negative results and what you want to do about it.
  

Like I said its easy for us to say. If anything shows up you will probably be put in contact with a genetic counseller or likewise (this is what I wanted to do). They will be able to help you find out more information about the condition and help you to make up your mind on what is best for all of you.

I'm sure it won't come to any of this but remember whatever you decide (IF a dicsion is to be made) you will do what is best for you and your family and we all know that you will take your boys into concideration on this which basicaly means you can't call yourself a bad mother, coz you're not.

[stevensmummy]

Hi guys,

Thanks for the replies, I've been away for the weekend so just back. Wow Giz you are full of info. I had pretty much read this out to the death, so was familiar with what you say. I was under the impression the test can be done between 10 and 14 wks, so really thats not long to wait. I think a mid way is better so will prob get it done about the same time as the 12wk scan, which I think is for abnormalities too. I think all the scans are really.

The app is at 2pm today. There was word of mr getting a scan regardless so i am filling my bladder anyway. initially they got the dates confused saying i would get my 12wk then too but its not the date they thought so maybe I wont afterall. No harm and to be honest i would orefer one. Like you say Giz its like I want proof that I am pregnant. I feel like I'm in limbo just now.

i'm going thro and thro this over and over until my head hurts. i talked it through with my parents and Dad was pretty much well you will have to wait and see what they say. He also said, maybe the risks arent as bad as i am thinking as I have some unknown factors and also my age etc.

I better get ready anyway. I'll come back on when i'm home again. i have the farrier today so might be a bit late.

Thanks for all the support

xx

[winegirl]

Oh hi babes..

Its 14.20 so I guess you are there now. Thinking of you and will speak later x

WG xx

[monica]

Hi

Justs wondering how you got on with dr? How are things?

Monica

[stevensmummy]

hi Guys

I have had a rather odd time since we last spoke. The monday of my app was the 1st day of my oh's hols. By the time I was finnished monday I was exhausted and in a bit of a turmoil. I went straight to bed. To be woken on tuesday morning to oh packing his case, he had packed most of stuff which the kids need too. He had gotten hsi dad to take the caravan down to Blair Athol for a break we got back yesterday. I was surprised to say the least but it was what we needed.

But down to the appointment.

I was petrified of going and to top it off there was a bad accident on the main road in so we wer 30mins late! but as a hosp usually is it was running late, even at that time. The basics of the app was that i got a scan which dates me to about 8-9wks just now, they werent 100% as it was unclear apparently. What they say is stopping meds now will have practically no effect and didnt at all reccomend it as i have 2 other kids. The risks are only marginaly more than normal popn on the meds I am on. But the studies which have been done are on ppl with a dose od 200mg per day, of which i am on 125mg daily. The specialist says that is a considerable difference which will make a considerable diff to the risk. The risks are cumulative so basically shouldnt be much different to norm popn. Which is about 3% thats inc severe defects such as spinabifida and downs and minor like cleft lip and club foot apparently. there was also a genetic specialist there who went into genetic defects and my family history which really had nothin to do with epilepsy but was very interesting and showed up some things i didnt realise. In reality any woman with defects and difficulties in the familty should have this i would say. He was very good, and as I have a biological background he was a little more in-depth as I understood genetics and what he was discussing. i found it rather interesting actually.

I have also agreed for myself and the baby to be on the epilepsy pregnancy register. Which involves another blood test for me every now and then and a blood test on the baby when it is born. The specialist team will come up to see me and the baby when it is born, more i think for a personal touch than anything, but they will check it over thorougly and do some sort of blood spotting test on it, similar to the heel prick i think. And a follow up on it at 1 year then hopefully thro its development to make a long term development record which is what they strive for just now. As I said to the specialist if I can help at least one woman not go thro the same worry that I have then anything I can do to help is worth while. Also my biology background makes me see just how important clinical trials and studies really are.

So i feel a little in-limbo just now. Alot less worry as basically everything should be fine. My age etc plays alot in this so its a good chance it being ok. I now just have to go thro the same blood tests and an extra 2 scans and thats it really. The normal 12wk check and blood test at 12wks for that AFP, then the norm 20wk scan then another at 24wk. It is just for growth check apparently and a few extra checks, i think 24wks is nearing the end of abortion time so its then really I get a last check

Not so bad really is it?

I feel so much better

xx

[gizmoracer]

So glad everything went OK. Keep us informed.

[monica]

Hi

Glad you feel better and more reassured. It sounds like they will be taking good care of you - restores faith in the NHS. Take it easy.

Love

Monica

[winegirl]

Hey You!

Sounds like everything is going as it should!

And how are you feeling in yourself? Do you feel a bit more relaxed about things now??

Here if you need a chat mate x

Love

WG xx

[stevensmummy]

Hi Guys

Thnks for all the replies.

I do feel much better about it wg. Its still worrying and I keep thinking to myself that it could be so much hassle and i'm not doing this again but, I cant really say I'm worrying about it much now. Once I have my 12wk scan which is in about2-3wks cant remember at this sec, I wont worry. I think I will at that time be offered a blood test for the AFP levels. Not totally sure

Othewise all is ok. I look huge. People keep asking if I'm pregnant now. There is no hiding it. I look about 14-16wks. I am having to wear bigger tops and have a few eary pregnancy trousers which i am having to wear and thats at 9wks! Can you imagine 20, not thanks. Surely it'll slow down, if I grow at the rate I am now i'll burst!

Thanks again guys, ure the greatest

xx

[winegirl]

Maybe there are two in there... LOL JOKE!

Best of luck for the 12 week scan babes. What date is it on?

WG xx