Forum

Pregnancy advice

I am a member but posted annon just for some advice… So any help would be appreciated.

I was diagnosed last year, RRMS, aged 30. I have 2 kids, 2 & 7 and prior to diagnosis had plans for another baby.

Have had 6 relapses since diagnosis and Rebif 22 1 year ago, then upped to Rebif 44 in June.

I spoke to consultant about pregancy and his reply was’ be happy with what you have ’ in a nut shell.

He said I should not put myself under any more pressure, post natal, I assume, as the, MS, so far is all over the place.

I was wondering if anyone had any thoughts I haven’t looked into yet? I am looking for thoughts advice comments about any aspect to try and help me make a clearer path for me…because at the minute it’s…

Get pregnant and get on ith it…
Or don’t keep going …

Thank you in advance xxxxxx

This decision has to be taken by you and your OH.

I was diagnosed after I had my children so it was out our hands but they wouldn't be here now if we'd known. Sorry if that sounds a bit brutal but I don't like the genetic predisposition figures and if not having children is a way too ensure this ends with me...

Not brutal atalll, thanks for your perspective.
Ultimately nobody can make any decision for us, just wanting as many perspectives to help me cover all angles.
Thanks again :slight_smile: x

I was diagnosed after already having my children aged 5 and 14 months, I was diagnosed when my baby was 6 months old when i had areally awfull relapse optic nertuis and lost my sight for 3 months in 1 eye, then 2 months later lost the use of my right arm for 8 weeks after a 2nd relapse.

I love my baby to bits but pregnacy for me brought on 2 nasty relapses and it was the hardest 6 months of my life coping with 2 young children and being so unwell.

The decision has to be yours but if you do decided to have another baby make sure you have lots of support around you to help,

good luck

We are trying for a baby now, my Neuro said that although after the birth there is a higher chance of relapse, you are often better during pregnancy so when they look at the whole period, it is the same overall,

Thanks for all replies.

Suzie, I relapsed 6 months after my second and the last year has been hard, being unwell is hard enough, but with children who need you, makes it so much harder.

Thanks to you all x

re above, pm me sounds like we have alot in common with 2 young children and ms.

sue

An interesting perspective - but very different to my own.

I’d be interested to know if you have seen different ‘predisposition’ statistics to the ones I’ve seen - or whether you just perceive them differently.

My understanding is that where one parent has MS, then each offspring has an average 2% chance of developing the disease. But lots of much more common, nasty diseases are subject to heredity statistics that are much more damaging (in my opinion). Here is a quote from www.patient.co.uk

About 1 in 9 women get breast cancer at some stage, usually over 50 yr old (that’s paraphrased… but after this bracket, the quote is verbatum) About 1 in 20 women are likely to carry a faulty gene that gives them a higher risk than the general population of developing breast cancer. This may vary from a moderate increase in risk to a high risk. You inherit half of your genes from your mother and half of your genes from your father. So, if you carry a faulty gene there is a 50:50 chance that you will pass it on to each child that you have. Because of these faulty genes, breast cancer does occur more often than usual in some families. This is sometimes called ‘familial breast cancer’ or ‘hereditary breast cancer’.

These sorts of figures sound to me to be much worse… and if you add the chances of passing on a predisposition to bowel cancer, heart disease etc etc etc… then you could go crazy worrying about these things, and hardly anyone would end up having children!!

Of course, there are some (rare) nasty diseases, where the prognosis is bad and the chances of passing it on to your kids is 25% or more… that might be different, but in the MS community, I personally think we shouldn’t be so hard on ourselves… and try to accept that life is full of many many risks… and the small risk of passing on ms to offspring is not one that should be allowed to dominate our lives.

Well, that’s my take on it !

If I missed somthing important, please correct me… but I hope this is a reasonable reply.

I think my post above says a lot about my own views.

No consultant ever gave us such advice as you got, but maybe your ms is a bit ‘lively’ at the moment. This might mean you should indeed look after number one… at least for now. But if you’re desperate - and if you feel reliant on your disease modifying drugs like rebif, then have a look closely at the statistcs associated with people who accidentally got pregnant whilst taking such drugs. The figures I’ve seen don’t suggest that they have real effects the outcomes of pregnancies (though clearly it is strongly recommended that you should come off the drugs before getting pregnant… and definitely come off them immediately if you find yourself pregnant… and also, the stats are presumably not the result of controlled test.

I am looking for advice on pregnancy and child care (which I’ll ask for soon) - How on earth do you cope with a one year old?

My children are 1 and 5yrs and had them before my diagnosis. We have decided not to have any more as we want to move on and do lots of family things now as we never know when I will worsen. I find it really really tiring having two small children and MS, not sure I could cope with any more!

This is an intersting reply…

I am the daughter with MS, my mother has MS…so obviously with 2 daughters already it plays on my mind. I give them Vit D and apart from that there is very little i can do…i have to say that the fear of them having MS is not a major concern…with all the other diseases we have to contend with and the world we live in there are far greater worries about brininging kids into the world as far as i can see x

This is an intersting reply…

I am the daughter with MS, my mother has MS…so obviously with 2 daughters already it plays on my mind. I give them Vit D and apart from that there is very little i can do…i have to say that the fear of them having MS is not a major concern…with all the other diseases we have to contend with and the world we live in there are far greater worries about brininging kids into the world as far as i can see x

ABC......

 

Thanks. I am defo not desperate and certainly don't feel reliant on the Rebif....not sure it is doing anything except give me headaches!

Reduces relaspes by 1/3....last year i had 3 relapses, this year i have had 3....so not sure what the Rebif is doing lol !!!

 

Just looking at the future as it is not long coming round....months just disappear!

Hi anon,

I was told last month that ON AVERAGE Rebif reduces relapses by a third… and similar success rate ON AVERAGE for Tysabri and same for another disease modifying drug (DMD) I’ve forgotten… but the key was that it is very possible that IN YOU AS AN INDIVIDUAL, Rebif is only reducing your relapses by a sixth… whilst Tysabri (which works by a different mechanism) might reduce them IN YOU AS AN INDIVIDUAL by half.

In other words, they’re not saying that one drug is better than another… but some suit some indviduals, not others - probably because there are various “Strains” (bad word but you know what I mean) of MS.

The trouble is, they don’t yet quite know why… or have a test to say that Rebif is ideal… or not ideal… for you.

Might be worth a bit of investigation with your doctor.

Hi,

Sorry i have only just come across this thread. As other people have said its a very personal decision. I was diagnosed just before my son turned 1. It got to a point where I felt I had to choose starting treatment or having another baby ( with all the relapse risks associated) I was worried if I was well I wouldn’t want to come off treatment to get pregnant. Anyway we decided to go for it and we now have a gorgeous 6mth old brother for my son (now 3). I did have a bad relapse in the first few weeks of pregnancy but I’m not sure whether it was just coincidence. Anyway apart from that I have been very well (despite doom and gloom predictions from all health care team) I also decided to postpone starting treatment to breast feed for 6months (originally planned starting treatment at 6weeks post natal) I’m convinced that breast feeding has actually kept my symptoms stable but I have been told it doesn’t have the same effect as pregnancy. In my case I’m glad I went for it as I was keen for my son to have a sibling but it was a worry at the time. Good luck with your decision x

I've just seen this.  I was diagnosed pre children.  In fac the month before i conceived my eldest.  After him I suffered greatly from fatigue, but other than that nothing, and it cleared up after stopping breast feeding.  I reasonably quickly became pregnant with the second and after her I had a couple of relapses quite quickly and then started first on Avonex which sent me mental, then copaxone.  After a few years on copaxone I started to get an allergic reaction to it every time I injected so stopped and controlled with steroids.  In 2010 I started having more relapses, 2 in a short space of time, but again found out I was pregnant shortly afterwards.  My baby was born in March 2011, 7 years after her big sister.  Since she was about 5 months I old I have really struggled, just had a recent MRI and it shows active disease activity and my bone scan shows problems too, probably why I broke my shouler when I fell down the stairs.  So now I have to discuss Tysabri which I have resisted for about 3 years.  I often look at her and think I really wish I hadn't risked it with this one.  I'm struggling to look after all of them, I usually go to bed after the morning school run.  I've been off work since the end of my mat leave and am now subject to a long term sickness meeting.  I should have been happy with my lot, but she was a surprise (post Afghanistan baby) and I couldn't have done anything not to have her, even if she is constantly grumpy because I can't always give her all the attention she wants, because she tries to pull herself up on my leg and knocks me over, because I can't always get her into or out of the car seat.  Of course maybe its all because I'm knocking on a bit now,

hey i am only 23 me and my husband have a little boy who is 21 months before i got diagnosed the beginning of this year we really wanted another baby but we did have trouble concieving are little boy and now i no i have ms i really still would like another baby but after my little boy i had a bad relapse as i no it was now and i want to be well for as long as possible for my little boy as he is very demanding. my husband just says what happens happens but we are happy that we have 1.

carly x

I had both my children after diagnosis and if I am completely honest, I shouldn't of done it.  I am compromised in what I can do for them yes I can compensate with doing different things but it's far from what I wanted and what they deserve. 

I love my kids and believe I wouldn't be here without them.  They have given me something and someone to live for.

I agree with your consultant that you have two children that you can be with now and be a mother to. You are well at the moment and should be able to give the best to your children. 

This is just an opinion and at end of the day it is your decision with your OH as to what you do.

Best Wishes x happy2

I had always wanted 4 children.

I have two, one of which is 12 and my neuro thinks I started getting ill just after him. Its only last year (when my daughter was 1) that my symptoms really started to kick ass.

I have had 4 relapses in the year which have left quite bad disability in my arm and leg and this has made us decided to not have anymore children. I do not have the energy to look after the kids I have , the way I want never mind bringing another one into the picture. Obviously love is not an issue but having the energy to bond, take them places or even help with homework is such a struggle now.

I don't know much about the DMD side of things as I have not started mine yet but looks like you have some good replys on here already.

I do get so cross sometimes that my life long dream of 4 kids didnt' happen but them im blessed with the 2 I have.

 

Lindsay x