Need Advise

[AnnaH]

Hi guys,
This is my first post so am new to all of this...Just hoping someone out there will have been in a similar position to me and be able to offer advise

A quick background and history... I had my first major seizure when I was 11yrs and reached status epilepticus...I had another one where I reached status epilepticus when I was 12yrs...I was then put on 800mg of Epilim...I had no more seizures for 2 yrs...When I was 14yrs the specialist recommended I come off the Epilim...I did...I then had another seizure where I reached status again...I was put back on 800mg Epilim and once again had no seizures...at 24yrs my doctor decided to raise the level of my Epilim to 900mg due to my age etc...I had not had a seizure though..?...I have been on 900mg since...I am now approaching my 33rd birthday and have not had a seizure in the 19yrs I have been on the medication...
However am now married and wanting to start trying for a baby...hence comes the dilemma...I have probably been through the whole 'Google' library trying to find information on Epilepsy and children...Epilim and babies...he best dose levels...risks etc etc...
I am aware that the risk of having a baby with major malformations is much greater with woman who are on daily doses higher than 1000mg...but being on 900mg, even though its lower..whats in 100mg?? does it really make that much of a difference?
Last time I went to my specialist (which was last year) she said i should come entirely off my Epilim...I'd probably be fine...However Im not willing to risk the fact I might have another seizxure and reach status (especially when Im pregnant) on the notion 'i'll probably be fine'...

However having said that I feel quilty and selfish for wanting to preserve me over the risks of a baby...*sigh*

So I guess my questions are and need for advise are...
Is there anyone out there who has been through a similar dilemma?
What did you do?
Did you change medication?
What do you recommend?

Sorry for the lengthy e-mail post

AnnaH

 

[Endless]

Anna,

I've never been through a similar situation, but I did want to welcome you to the forum - Welcome!

We have a lot of wives, parents, single ladies, etc. in here so I bet someone is going to chime in on your situation.

My general thoughts are that you need to meet with your neurologist and your gynocologist and tell them that you are trying for a baby. Ask for advice on the anti-seizure med that will LEAST affect your baby. If you are in a large metropolitan area there are gyno's that actually specialize in people with epilepsy and pregnancy/childbirth.

Another general thought is to discuss with your neurologist if there are alternative, less harmful drugs that you can take instead. It may take some time tinkering around with them to find the right drug and the right dosage. But if you feel you can wait a bit to have a baby it may be the best solution for you all.

In the meantime, here are some links that may help out explaining risks and benefits of Epilim (Sodium Valproate) and it's derivitives (like Valproic Acid):

http://professionals.epilepsy.com/medications/p_valproicacid_pregnancy.html

http://www.mayoclinic.com/health/pregnancy/PR00123

http://professionals.epilepsy.com/page/pregnancy_terato.html

http://professionals.epilepsy.com/page/sig_aes_8annual_meeting.html#pregnancy (scroll down)
http://www.epilepsy.com/info/women_pregnancy

http://www.drugs.com/uk/epilim-chronosphere-spc-8436.html (scroll down to warnings and precautions)

The official package insert says the following:

PREGNANCY AND LACTATION:
Pregnancy:​

From experience in treated epileptic mothers, the risk associated with the use of​

​

​

​

Epilim during
pregnancy has been described as follows:​

·​

​

​

​

Risk associated with epilepsy and anti-epileptics​

In offspring born to mothers with epilepsy receiving any anti-epileptic treatment, the global rate of
malformations has been demonstrated to be 2 to 3 times higher than the rate (approximately 3 %)
reported in the general population. Although an increased number of children with malformations
have been reported in case of multiple drug therapy, the respective part of treatments and disease
has not been formally established. Malformations most frequently encountered are labial clefts
and cardiovascular malformations.
Developmental delay has been very rarely reported in children born to mothers with epilepsy. It is
not possible to differentiate what may be due to genetic, social, environmental factors, maternal
epilepsy or anti-epileptic treatment.
Notwithstanding those potential risks, no sudden discontinuation in the anti-epileptic therapy
should be undertaken as this may lead to breakthrough seizures, which could have serious
consequences for both the mother and the foetus.​

·​

​

​

​

Risk associated with sodium valproate​

In animals: teratogenic effects have been demonstrated in the mouse, rat and rabbit.
In humans: cases of facial dysmorphia have been reported. A few cases of multiple
malformations, particularly of the limbs have been observed. The frequency of those effects has
not been yet clearly established. Nevertheless sodium valproate preferably induces neural tube
defects (1 to 2 %): anencephaly, myelomeningocele and spina bifida.​

8​

·​

​

​

​

In view of the above data​

If a woman plans a pregnancy, it is the opportunity of reviewing the indication for​

​

​

​

Epilim therapy.
During pregnancy, Epilim treatment should be reviewed and the risks and benefits should be
carefully considered and discussed with the patient. If considered appropriate, folate
supplementation should be started before pregnancy and at relevant dosage as it may minimise
the risk of neural tube defects.
Monotherapy at the minimum effective daily dosage. The administration in several divided doses
over the day and the use of a prolonged release formulation is preferable.
Specialised prenatal monitoring should be instituted in order to detect the possible occurrence of
neural tube defect or another malformation.​

·​

​

​

​

Risk in the neonate​

Cases of haemorrhagic syndrome have been reported in neonates whose mothers have taken
sodium valproate during pregnancy. This haemorrhagic syndrome is related to
hypofibrinogenemia; afibrinogenemia has also been reported and may be fatal.
Hypofibrinogenemia is possibly associated with decrease of coagulation factors.
Therefore, platelet count, fibrinogen plasma level, coagulation tests and coagulation factors should
be investigated in neonates.​

Lactation:
Epilim​

​

​

​

​

crosses the placenta. When given to breast-feeding mothers, Epilim is excreted in breast
milk.​

Excretion of valproate in breast milk results in a concentration between 1 % and 10 % of maternal
serum levels.​

​

​

​

​

​

http://www.epilepsy.org.za/download/files/17.pdf

 

[stormydys]

I can relate alittle on the subject of having a child safely while being on a sodium valproate. I took depakote for years and was told it was safe to have a child on, well due to my epilepsy I became infertile so I never became pregnant. That was horribly upseting to me , life was turned upside down. Now 20 yrs. later I find out that I never should have tried to have a child. On one hand its worse to have a child and have seizures during pregnancy ,than it is to have a child on the meds.while pregnant. In your case status epilepticus seizures are bad news , I have those and never could have children. I hope you find a wonderful doctor and are able to have a child safely, my first neurologist told me I could , the rest said no way.