Making the decision to have children after an M.S. dx

[DancingPhalanges]

The husband and I have been talking for the last year about starting a family, we hadn't planned on really starting for a few years, wanted to be a bit more financially solid first. Then comes my M.S. dx. which just feels like it makes this a much more heavy decision for so many reasons.

I mean I know that with anything in life, disease or no disease there are many many what if's, but now I have extra what if's... what if I am not able to work, then we have to raise a child on his (much smaller than mine) salary and disability? Now I don't anticipate this being an issue anytime so.. but as we all know...who knows?!

Also being tired effects me more than anything, too many late nights or nights of not enough sleep and I am virtually useless... Ummm...babies keep you up...a lot... so then what? And add to that what if I go into a flair soon after birth? From my understanding the likely hood of a flair increases after giving birth.

BUT I want children... or at least A child...And I am not getting any younger, I mean I am only 32 so I do have some time.

I dunno this part vent and part looking for advice/opinions, other experiences.... thank ladies

[Milhous]

I had a child after my diagnosis after having 3 when I had no idea that MS could be a problem.
during the pregnancy I felt better with the MS but had a episode bout 3 months after delivering.
Have help as you do not know how you will feel afterwards and a small baby is not able to wait until you feel better. As they get older they can adjust to how you are feeling. I had to quit work when my daughter was a year old and yes disablity SS does not pay as well and it was harder to make money go as far but it was also nice to be able to be at home with the kids-- so there were pluses too as I look at it that it was nice to be home and be available for them.

[onlyairfare]

There are quite a few threads on this subject, so I am sure someone who understands the "search" function better than I can find them for you.

I have three (now adult, though the youngest is still in college) children, all born after my diagnosis of MS was strongly suspected, but not formally diagnosed because that did not happen until 2002.

I've been very lucky and I had no post-partum flares, and only one episode of ON during the last pregnancy. I had a lot of serious obstetric problems that were not related to MS, so for me MS was not nearly so much of a problem as my reproductive issues. I was just so grateful to finally have a healthy baby (and then two more) that I rarely even thought about MS and pregnancy. My husband and I had genetic counseling because of my obstetric problems, but there was never any suggestion that because of my MS, we shouldn't have children. At that time, the thinking was that the chance of one of our children having MS was 1% instead of 0.1% risk in the general population. To us, that 99% chance of having a child who would never have MS seemed worth it. The statistics now would say 2 - 3% risk of your child developing MS.

I've had MS for 35 years and still work full-time at a rewarding job, and I have 3 healthy adult children, so I would not change a thing. I know I am fortunate, but no one knows what the future will bring, MS or not. My very healthy husband does not have MS, but he got a heart infection from going to the dentist for a routine cleaning, nearly died from a stroke (due to the infected heart valve) at age 41, required open-heart surgery to replace the damaged heart valve, and spent 3 months in the hospital because of all of that. That was much worse than my MS has ever been.

I have the same problem as you with fatigue being my biggest MS problem, so sleep disruption is a challenge for me. Practically speaking, most babies sleep through the night by 3 or 4 months, so it doesn't last forever (it just feels like it!). My husband often bottle fed the babies in the middle of the night so I could sleep through and get my rest. breastfeeding is great, but sometimes there is a need to change to formula to help mom, and babies grow fine on formula too. I have changed to jobs that are Monday - Friday from 9 to 5, instead of jobs that had me taking night shifts and working weekends.

Everyone here will probably tell you that each of us has our own version of MS, and each of us has to make decisions that best suit our situation. I wish you and your husband all the best in the decision-making process.

[DancingPhalanges]

Thanks Ladies I have searched, and have come up with a lot of threads on pregnancy and parenting with MS, but nothing on anyone's experiences making that decision after diagnosis, so I thank you for responding. I guess I just worry about any possible future financial strain more than anything. Combined we don't make a whole lot, but I make $2000-2500 a month( depends, i work on commission) vs his roughly $1200-1600 a month so I get nervous... That's IF it was to get to that point! I generally don't worry so much about the unknown, but for some reason this particular issue is buggin' me out.

[lexluther]

I WAITED 3 YRS TO HAVE MY FIRST, AFTER GETTING MARRIED. I WAS DX 2 YRS BEFORE MY WEDDING. THE ONLY THING WITH MS AND PREG IS THAT THE SYMPTOMS GO AWAY. IT WAS THE MOST GLORIOUS THING. YOU CANNOT GET A SPINAL, BUT THEY STILL CAN DO A C-SECTION IF YOU NEED ONE (I HAD TO HAVE IT WITH BOTH BECAUSE MY PELVIS IS NARROW) AND CAN GIVE YOU MEDS. I DID GET AN ATTACK ABOUT 3 OR 4 MONTHS AFTER WITH THE FIRST ONE, NOTHING WITH THE SECOND. MY KIDS ARE 11 AND 6 AND I'M GLAD I DID IT. THE EXHAUSTION COMES LATER WHEN THEY BECOME MOBILE! LOL

[jaq]

I was dx'd at 27, married my husband at 33, and had our son at 35. My pregnancy was fine, and my son is healthy! I did have a relapse when he was 4 months old that left me with a weak left side and a limp. We have no real support system so my husband and I do everything. When my son would get up in the middle of the night, my husband would change his diaper then bring him to me in bed so I could breastfeed.

I haven't worked since he was born (for us, the cost of daycare equaled my pay and I would rather raise him myself). Yes, being tired and having fatigue stinks - but you can work around it! Trust me, I do that every day. LOL My son is currently not the greatest sleeper, and didn't sleep through the night until after he was 1 year old. Just know your limits and you will be great! You don't have to have the laundry all done today, you know? I'm now 37, and am pregnant with our second child. Yes, there are worries and fears. We are human and that's natural! But I can honestly tell you that I have no regrets. If you have any questions or I can help you at all please let me know!

[aitch10]

My husband and I decided to have a baby right before my 35th birthday. I was scared witless, but figured I never let fear keep me from doing anything else before, and I wasn't gonna let it keep me from having a baby.

Now we've got an the sweetest little boy ever and are hoping to give him a sibling soon.

[kayleeb1218]

in the same position....

i knew i was not the only one going through this, but i am glad to hear about everyone else;s experiences. me and my DH have been trying to have a baby now for a couple years, we have been seeing a fertility specialist to help me get pregnant. then just recently we got caught with my MS diagnosis. it was easy at first for me to make a decision between meds and starting a family because i was feeling fine and to be perfectly honest, i don't think i truly accepted my ms diagnosis. i did not want to believe that something like this would happen to me....especially now, with me being so young. so i thought to myself i was going to concentrate on making a baby, but just recently i had a really bad relapse which made me accept my diagnosis a little quicker. but now i am caught with a really hard decision. this being the worst relapse ever has made me think about started DMT, but i really want a baby. i know people can not make my decision for me, but i guess hearing what other people are going through/went through can help me make this decision...

has anyone gotten pregnant while on a DMT. and if so..which one and what was the outcome?

[aitch10]

I wasn't on DMD when I conceived...

i knew i was not the only one going through this, but i am glad to hear about everyone else;s experiences. me and my DH have been trying to have a baby now for a couple years, we have been seeing a fertility specialist to help me get pregnant. then just recently we got caught with my MS diagnosis. it was easy at first for me to make a decision between meds and starting a family because i was feeling fine and to be perfectly honest, i don't think i truly accepted my ms diagnosis. i did not want to believe that something like this would happen to me....especially now, with me being so young. so i thought to myself i was going to concentrate on making a baby, but just recently i had a really bad relapse which made me accept my diagnosis a little quicker. but now i am caught with a really hard decision. this being the worst relapse ever has made me think about started DMT, but i really want a baby. i know people can not make my decision for me, but i guess hearing what other people are going through/went through can help me make this decision...

has anyone gotten pregnant while on a DMT. and if so..which one and what was the outcome?

I had been on rebif for 5 years before going off of it to try to conceive(TTC). I'm still off it because I'm nursing and will most likely stay off it while we TTC #2.

I'm not gonna lie, I have noticed a negative difference since giving birth and not being on the rebif, but nursing was important enough to me to deal with it.

If we can't conceive too soon I'll finish weaning my son, then I will go back on the rebif and most likely get some prednisone before revisiting TTC #2.

[ShootingStar63]

I guess there is something to be said for being dx as an "old lady", I didn't have to make the decision of having children or not. My boys were 16 and 18 at the time.

I do know myself though, and if I'd been dx 20 years ago, and had the flares that I've had in the past 2 years, there would be no children for me.

Best Wishes whatever you ultimately decide

[SNOOPY]

...babies keep you up...a lot... so then what? And add to that what if I go into a flair soon after birth? From my understanding the likely hood of a flair increases after giving birth.

BUT I want children... or at least A child...And I am not getting any younger, I mean I am only 32 so I do have some time.

Yes, babies keep you up as do toddlers, school age and the ever difficult teen years

I had 2 children AFTER my diagnosis, they are now 18 & 20...I would not have traded this experience for anything.

When you have children to take care of it becomes about them and not you -- for me that helped keep my mind off my MS.

I was tired -- my husband traveled on business quite a bit and I didn't have any family that could help.

I used a day care center 2 or 3 times a week for 3 or 4 hours. In that time I could choose what I wanted to do -- take a nap, shop, clean the house, visit friends or just relax and read a book.

It is possible to have a relapse ANYTIME even DURING pregnancy as well as post-partum.

I didn't have a relapse with either child.

Best wishes on your decsion.

[Bitingmonkey]

getting pregnant

I had my first child before my dx and it wasn't until after I stopped breast feeding that I had my first episode. We are now trying for baby #2. We don't want this to stop us from wanting 2 children. I have been on Copaxone for about 7 months now. Has anyone had problems getting pregnant while on this med or been taking it while pregnant? Just wondering.

[Loved]

You are very wise to be cautious and contemplative regarding this decision. Having children is a huge responsibility and one that shouldn't be taken lightly.

I was diagnosed with MS following a miscarriage. Our son was three years old at the time. Following the miscarriage and diagnosis, my husband and I wrestled with the question regarding future pregnancies. We chose to not have more children.

This decision is one only you (and your husband) can make. For us, our decision was affected by my husband's long work hours in his profession, no family living near us, and our commitment to be responsible for the children we bring into the world. We felt confident that we would be able to care for our son regardless of the course of my illness. But we did not share in that confidence for future children so we chose to not have any more. And although it is a difficult decision to make, we have felt it was the right decision for our family.

Anyway, I would not rush but give yourself time to really think things through. There are many ways of investing in the lives of others. Having one child gave me the opportunity to be more involved in other pursuits as well.

I wish you well.

[DancingPhalanges]

Thanks Ladies I have been thinking a lot and Patrick & I have been talking...and I think we are just going to go for it. Not right this second, maybe in a year or so. As I said I want to have a bit of money socked away before hand(primarily 3-4 months of rent/bills) so I can take at least 3 months off from work when the baby is first born. As aitch said, I haven't let this stupid disease keep me from all the other things I want, why should I let it keep me from this.

As far as we are concerned I think we have decided it is wise to maybe think about only having one, which is fine with me. If it weren't for the fact that I don't have ANY I probably wouldn't even be contemplating this! Thanks again!

XO
Rose

[spuffy]

You'd be exhausted anyway!

Go for it! Let's face it, no matter what, a baby is exhausting, and so is a toddler. In fact, just assume you'll be exhausted until they go off to college.

It's parenting, not MS. MS might make you MORE tired, but I had my kids before MS, and I think I spent the first 5 years in a fog.

I have to say, there's nothing more calculated to make you feel both essential and incompetent as a kid. It really has nothing to do with the MS. You'll be tired and joyous and miserable.

I always think this-- you will feel such incredible joy, the kind of joy that is unavailable any other way. Watching your baby sleep (even your 15-year-old baby! feels the same) is the most joyful experience in the world.

And you will never feel such terror and misery either. Highs and lows.

MS won't make that better or worse. You have to decide if you're going to like such extremes though! If anything, MS will prepare you for the extremes.