MS and motherhood.
Jazzyjules71
Posts: 150 Member
I am turning to this forum to get some insight into being a parent with MS. I have had MS For 10 years, I am now in my early 40's. I'm doing pretty well with it- work full time in a busy job, have no obvious defecits. I get fatigued at times, I definitely haveM generalized weakness at times (although I scored high on my push up assessment at my work physical!!!). OVerall I can't complain.
My boyfriend and I are talking about marriage and having kids, and having some different opinions about it all. He really thinks having kids would wear us/me out too much and therefore stress us out too much. I think being a parent would be difficult, but worth it. I feel like parenthood might be a little different than those without MS, but you just adapt. For instance, I would definitely want to breast feed for a little while. But I would probably change to bottle feeding after a month or 2 (rather than like a year) just so I could sleep more (and someone else could do the middle of the night feedings). I would probably ask for help more than a non MSer. I don't know, I feel like if you want it bad enough you make it work.
I guess I'm asking for thoughts on motherhood, if you did it- how it was for you, did your MS worsen, has it been super super hard, or are you someone that chose not to have kids because of the MS?
I don't want to give something so big up because of this damn disease. I feel like I've always wanted to be a mother, and I would feel like the MS was winning the battle because I gave motherhood up. Does that make sense?
Anyway, I'd appreciate any thoughts!
(Oh and I know young 40's is a Tough age to actually get pregnant, We've already explored the fertility thing and have a plan so that's not a question!!)
Thanks, Julie
My boyfriend and I are talking about marriage and having kids, and having some different opinions about it all. He really thinks having kids would wear us/me out too much and therefore stress us out too much. I think being a parent would be difficult, but worth it. I feel like parenthood might be a little different than those without MS, but you just adapt. For instance, I would definitely want to breast feed for a little while. But I would probably change to bottle feeding after a month or 2 (rather than like a year) just so I could sleep more (and someone else could do the middle of the night feedings). I would probably ask for help more than a non MSer. I don't know, I feel like if you want it bad enough you make it work.
I guess I'm asking for thoughts on motherhood, if you did it- how it was for you, did your MS worsen, has it been super super hard, or are you someone that chose not to have kids because of the MS?
I don't want to give something so big up because of this damn disease. I feel like I've always wanted to be a mother, and I would feel like the MS was winning the battle because I gave motherhood up. Does that make sense?
Anyway, I'd appreciate any thoughts!
(Oh and I know young 40's is a Tough age to actually get pregnant, We've already explored the fertility thing and have a plan so that's not a question!!)
Thanks, Julie
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Replies
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My guess is your age would be more of a factor in the decision than the MS. My doctor told me that the pregnancy gave a boost to my immune system and a reprieve from symptoms while pregnant. If you are on MS medication I would look carefully at he risks to the baby. I had a miscarriage while on Rebif.0
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I had both my kids before my official diagnosis, so I don't know if it made things worse. I do know that I'm really glad that my sons are both adults and can look after themselves (they were 13 and 15 when I was diagnosed). They've been making their own lunches and doing their own laundry from 13 on - not because of the MS but because they needed to learn how to do it.
I know that even with RRMS I have days where I just don't have any energy and I don't function well. If I had a baby or a toddler right now I would have to rely on my husband to handle everything - and I know for a fact that he couldn't do it.
I guess if your boyfriend is already questioning whether or not the two of you can handle the stress - then you need to really look at your relationship and whether he is willing and capable of taking over all child care if the pregnancy and birth does make your MS unmanageable. Kids are a lot of work - but I wouldn't trade being a Mom for anything.
I worked with a young lady (mid 20's) who got married and pregnant shortly after being diagnosed with PPMS. She wanted so badly to have a child and she thought if she hurried things along then she would still have the time to do things with her baby/toddler before the disease progressed too far. Unfortunately, with other complications, she ended up in a wheelchair before the baby was born and lost a lot of her motor functions. She and her husband divorced within a few years and the child lives with her ex and his new wife. I'm not trying to make you think it's impossible but you do need to really work through all of the pros and cons and discuss everything with your doctor and your boyfriend and any family support you hope to have.
It's a huge decision and the most impacted one of all of you will be the child. On the flipside, there are a lot of older children out there who need loving parents - have you considered adoption?
Good luck, take care.0 -
Thanks everyone for the responses....... Obviously lots to consider!0
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I waited a long time (10 yrs of diagnosis and marriage marriage) to get pregnant specifically because I was afraid of what my very mild, very quiet MS would do. I was so afraid to wake it up. There is also a very large genetic predisposition towards ms in my family, so having a child that may develop it was another thing to consider. After waiting years for an adoption that may never happen, we decided to go for it. By this time, I was of advanced maternal age (38-39) and yes, it was harder. It took 1.5 years. I miscarried and then it took another 4 months to get pregnant again. If I had to do it again, I would have gotten a fertility monitor right from the start. Once I started using it, I got pregnant quickly (the second time).
Since giving birth, I've had 2 exacerbations in 2.5 years. If I had to do it all over again, I wouldn't change a thing. I was a very type A personality, and still have some of those characteristics, but having my daughter has really mellowed me. I think part of it is because I waited until I was older to have her and part is because she brings me such joy. I take more time now to stop and appreciate things and she has increased my patience immensely. Is it stressful? For me, I don't think so. Life is inherently stressful, it's how you react to everything that determines if that stress is bad for you. I breastfed for 18 months and to tell you the truth, once you've gotten past the first couple of months, which are the worst, sleep-wise, it's actually pretty easy to BF and I felt like I got more sleep (we also co-slept). I did things like nap when she napped (heck, sometimes I still do!) & I didn't work which cut down the stress immensely.
It sounds like you really want to have kids. If you let MS take that away, you will always think about what you missed out on. I grew up with a mom with MS. To be honest, I didn't even really know it. It wasn't until she was much older that it really became a problem. I feel like I still have mild MS and my MRIs bear that out. Having a child didn't change much for me MS-wise. I do everything I can to keep myself healthy and strong and so far I've been lucky. If something happens, we'll figure it out as a family.0 -
Good Luck what ever you decide. 32 years ago I was diagnosed a week after we found out I was pregnant with our 2nd son. I can't imagine life without either son!
Maybe they are more sensitive to other folks troubles having grown up with mine.
The important factor is to "Never give up, never surrender" to MS, to quote Tim Allen.0 -
I had kids before diagnosis. I also was really fatigued at times. I was diagnosed and still did my kids. i know other moms that do. the infant stage is the hardest if you have muscle weakness and fatigue that makes it hard to wake up. Some helps when feeding is a pillow propped under your arm to support both baby and mom.
preschool age is also hard to keep up with when physical limitations present themselves. there are always work arounds.
I love my kids and I did just as well if not better in some cases as other parents.
What you should know is with or without MS it takes more than parents to raise children. If you both choose to have children, then develop a good support net work. Also talk with both sets of Grand parents. MY husbands family has been very helpful with the raising of my children and so has my church family. I do what I can for both and they do what they can for me.0 -
I was diagnosed when my daughter was 10 months old, she's 4 now, and i also now have a 10 month old son. If you feel physically capable (whatever that means for you) then dont let MS stop you. I had this disucssion with my family doc about 2nd baby and he just told me it was ridiculous to let it stop me havinf a second baby, that having a family is one of the best things and it is always amazing what people can cope with. No one knows what is around the corner, including us. He said best thing is to worry about the big things like take care of your cardio system, dont smoke, exercise, and dont drive on highways on holiday weekends - these arethe real things that destroy lives.
However, if you want to get pregnant dont wait and have at it because from 35+ fertility takes a nose dive. dont plan how you will breastfeed etc. take it one day at a time. New babies are tiring for everyone. Is it worse with MS? i dont know, it is what it is and you learn to deal with whatever personality your baby has. some folks have babies who sleep like a dream, others don't, you just cant tell......A support system is great but not necessary. we have zero family within 3000 miles of where we live and just a small group of friends and we manage just fine. We adapted our lifes for our kids just like anyone having kids has to.
Be sure to come off your meds first though...I had a miscarriage and i blame prednisone, the one and only time i have used it to treat a relapse I was pregnant and lost the baby even though my neuro said it would be fine.0 -
I was officially diagnosed in spring/summer 2007 and started Copaxone. We had planned to TTC in spring 2008 and after consulting with my MS specialist and OB/GYN, we decided to go ahead as planned. The timing made sense in terms of grad school/career and since I was 31 and DH was 39 and we didn't know if it would take a while to get pregnant, we wanted to go ahead and try.
I was worried about being off the drug to TTC but fortunately got pregnant the second month trying. I actually loved the reprieve from shots during pregnancy. During pregnancy, I had a lot of limitations but no complications. I think the fact it was a twin pregnancy had more to do with that than the MS. The first year was TOUGH. I did go to formula-feeding after the first month so DH could help more with the feedings and so I could go back on the Copaxone. (I later switched to Betaseron and now Tecfidera.) There have been times when it's been hard for me to keep up with two little boys but it's hard to know whether the fatigue is MS-related or parenting-related. Overall I have no regrets and I can understand feeling like MS is winning if you have to give up such a major dream. I'd definitely talk it through with your dr and partner. I think you can weigh MS in the decision but I don't think you have to rule it out just because of the MS. Best of luck to you!0 -
Oh and a couple more thoughts after reading the rest of the responses:
* Yes, definitely come off the meds before you TTC. I had a surprise pregnancy and miscarriage this summer while I was on Betaseron. I'll never know for sure but I do wonder if the Beta had anything to do with it.
* I agree that you do need to make sure your BF is really up for taking over completely if needed if you have a relapse, and that you have a good support system in place outside of the two of you as well.
* I did get 4 new lesions while off the drugs for 14 months to TTC, pregnancy and BFing. I was worried about that since before that I'd only had 2 (large) lesions in 6 years, but my MS specialist said they were all fairly small and he didn't seem too concerned about it or about the risks if I TTC in the future; he felt that was a reasonable risk for me.0